Leo (Leoberry) - the high doser

Discussion in 'Acromegaly / IAA / Cushings Cats' started by JeffJ, Aug 25, 2016.

  1. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Leo is addicted to insulin. But he's a sweet cat, so we feed his addiction. Who knows, maybe he will get better someday. In the meantime, he gets brushed and rubbed multiple times a day. This week, he is feeling very chipper since he responded well to higher doses of PZI.

    On Aug 25 (2016), he decided to switch his addiction to Levemir. He didn't like the high cost, and special ordering for PZI. He didn't like the fat U-40 needles either. Who can blame him? Now he's on Levemir.

    Today he goes to an internist veterinarian. And he'll get blood tested for acro and IAA.

    Leo used to be on the PZI forum. His previous thread was here:
    http://www.felinediabetes.com/FDMB/threads/leoberry-aka-leo.162132/

    Spreadsheet started July 2016 - linked here
    - includes graphs on second tab

    History:
    • Leo is 10 years old, and he was the cutest black tabby kitty ever - a true heart melter
    • Inside-only kitty
    • High-dose kitty
    • Insulin started August 2015 , after he dropped to skin and bones weight (and he had acid ketosis)
    • Insulin was low dose (3 units/day) initially, with 150-200 nadirs
    • Started on 1.0 Lantus/day then over 8 months ramped to 9 units twice daily - without low nadirs.
    • Kept him at 18 units/Lantus for too long - his nadirs ramped to 250/300
    • 2016-07-06 thru 2016-08-25 Prozinc - responded at higher doses
    • 2016-08-26 started Levemir
    • Our vet has never had a high-dose kitty, but she is a very experienced vet
    • Never a single hypo incident
    • Low carb, wet food only, currently Fancy Feast and cooked chicken
     
  2. Wendy&Neko

    Wendy&Neko Well-Known Member

    Joined:
    Feb 28, 2012
    Hi Jeff, this is s pretty quiet forum, mostly information only. The high dose Lev and Lantus kitties post over in the Lantus and Levemir forum.

    Good luck with the new juice - I hope you can get to a dose that moves him soon. And I hope you have a successful internist visit.
    Same with Neko's vet, until I started educating her. Then she quickly found another acrocat in her practice. One in four diabetic cats has acromegaly. Neko's acupuncture vet the same story. Never seen one until I started with her - now she thinks one of her previous pets was acro.
     
  3. Sharon14

    Sharon14 Well-Known Member

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    Aug 16, 2015
    Good luck at the vet and with the switch to Lev
     
  4. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    The vet visit went well. Dr. Sharon Theissen of http://www.ctvsh.com/ in Round Rock, just north of Austin, TX.

    She knows her diabetic and acromegaly stuff. She has had multiple Acro patients. She said Leo's symptoms are typical acro. And her physical exam indicated his lower jaw had grown excessively forward, separating the lower canines to a forward position of the upper canines. There is a pronounced gap. The blood work will be available in 2-3 business days. She was very familiar with SRT in Colorado, and will help us with that course of action if we pursue it. She also took personal care of an acro cat. She said the radiation therapy in San Antonio is linear, and hits a larger region. She didn't recommend it because it takes too many doses, each of which requires anesthesia.

    It was so refreshing to have a vet educate me, instead of the other way around. I have learned an enormous amount on this forum, and gotten great help as well. It is just nice to talk to a specialist. Followup results will include:
    - full blood panel, which I'll type in
    - acro test results

    She said to target 150-200 for nadirs, to avoid potential hypos. And she said 200-300 is a good general target for high-dose kitties.

    @Wendy - is there online data which shows that 1/4 of diabetic cats are Acro? I'd like to read it. I'm also going to reread the Neko-journal of the SRT sessions.
    .
     
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  5. Wendy&Neko

    Wendy&Neko Well-Known Member

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    Feb 28, 2012
    Yeah for having a specialist who actually knows something! Are you also getting the IAA (insulin auto antibodies) test done? A fair number of acros have it too, and we slightly tweak our dosing suggestions if Leo has that too. BTW, bloodwork must be received by Wednesday at MSU which is when they start running the IGF-1 tests, so it'll be next Friday or Saturday at the earliest you get results, not 2-3 days.

    I'm not sure if anyone gave you the link to this post - it's a collection of articles on acromegaly. It contains a link to the study in England showing 1 in 4 cats was diabetic. Similar, but smaller scale studies have been done in the US. Julie has a record of Punkin's SRT journey in her signature. I've done it twice now at CSU, but you'd have to go searching through posts for it. I agree with your vet on SRT being better. The linear radiation isn't as tight an area and can impact neighbouring tissue, and the SRT is a lot few anesthesia sessions.

    I'm also going to argue about desired nadirs for an acro cat. I know you are using the AlphaTrak which reads a little higher, but the folks at CSU told me that it's best to keep Neko at a dose where she spends as much time as possible under renal threshold - for her, under low 200's on the human meter. You are home testing, you don't need to worry as much about hypos as someone who isn't testing. The acro tumor can wax and wane, so yes, you do have to keep up the home testing. But I find that if Neko's nadirs are lower (70 ish on the human meter), I can keep her overall numbers much lower and she bounces less. And keeping an acro kitty in better numbers does seem to help how high a dose they have to go to. That is especially true if IAA is in the picture as well. There you absolutely have to aim for lower numbers.
     
  6. JeffJ

    JeffJ Well-Known Member

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    Jul 7, 2016
    That's good feedback Wendy. We will think strongly about SRT. Leo is only 10. If the tumor is aggressive, then this could give him an opportunity at age 16.

    I guess we'll wait to see the blood results. I asked about IAA and she didn't recommend it. But maybe I misunderstood. Since vets provide dosing advice, they probably stay conservative. As she reiterated, a single hypo incident can be fatal, but slightly elevated levels are not. Let's see if I can get Leo regulated on Levemir. He was real close on PZI. I'll dose 4 times at current level before increasing.

    Lemme go read those links. I appreciate the feedback and info. If anything, the vet session today reassured Theresa that I knew almost as much as the vet. And most of my info has come from the forum here. The spreadsheets here are good. I think it kinda forces one to keep up with testing.
     
  7. Sharon14

    Sharon14 Well-Known Member

    Joined:
    Aug 16, 2015
    Sounds like you found a good vet! Colin has the jaw symptom too. In fact I noticed it quite awhile before the diabetes diagnosis. I thought maybe he had a bad tooth so took him in. Was told teeth were fine, he's just a big cat, by two vets. When he got the diabetes Dx, and was at such a high dose, I again pointed it out and was told again that he's just a big cat. I had to insist on the test. Then the vet got an attitude when the test came back positive and he was wrong. He's no longer my vet.....
     
  8. JeffJ

    JeffJ Well-Known Member

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    Jul 7, 2016
    Yes, this makes me think about who should be Leo's primary vet as well. The jaw symptom is called "prognathia inferior (protrusion of the mandible)". Or we could just speak English and call it a protruding jaw. I read through 3 of the scientific articles today. Good articles, but written in science-speak. The main article Wendy recommended - that definitely showed 1/4 of diabetic cats are acros. A lot of work went into the study. Nice article but with lots of jargon.

    I think Leo also shows 2 other symptoms:
    - slightly clubbed feet
    - more snoring than previously, probably due to tissue growth (jargon = reduced diameter of the nasopharynx)
     
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  9. Wendy&Neko

    Wendy&Neko Well-Known Member

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    Feb 28, 2012
    My vet didn't think I needed to get the tests until we got to 10 units - which we never did. I asked her to humor me. She was very surpsrised at the results (I wasn't) at what the senior vet at the clinic called "exotic tests". But she's willing to work with me and willing to learn, which is worth a lot to me. And the senior vet now admits I know more than him about acromegaly - admitedly a low bar. :p But he's great at many other things so I respect him for that too. Neko's now sees an internal medicine vet whose knowledge of acromegaly is leaps and bounds above her regular vet.

    If it's not too late, I'd see if I could get the IAA test tagged on. It's not much more expensive when done at the same time as the IGF-1 test.

    And yes, a single hypo event can be fatal - it's the number 1 cause of death of acro cats. Probably in non acros too. Most caregivers of acros do not home test. Heart and kidneys are also risk factors, which is why I try to keep Neko under renal threshold as much as possible.

    It'll take at least six cycles, maybe more to see what the current dose of Levemir can do. You might want to read the sticky notes at the top of the Lantus/Levemir forum if you haven't already.
     
  10. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Hi Wendy, I just read the printed report. The acro test is next week. I'll call the vet and have them add the IAA test. Also I'll wait 6 cycles to adjust the first dose. In summary:
    Aug 24: PZI completed at 13.0 units/dose
    Aug 25: Levemir started at 10.0 units/dose
    Aug 25: PMPS was ~310. It's in the other room, and I have Chinus on lap so I'm stuck for awhile.

    That's good your vet is flexible. Leo's regular vet is fine, but I don't feel I should pay her to educate her. I've been cautious and lucky so far. No true hypo for Leo since August 2015 inception.

    The internist said a better hypo treatment is food if possible and to use Karo as last resort. She did praise me for home testing preshots and nadirs. I don't know how one would "guess" dosage without testing. I will also target keeping Leo below the renal threshold (240-270).
     
  11. Wendy&Neko

    Wendy&Neko Well-Known Member

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    Feb 28, 2012
    It also depends how carb sensitive your cat is. Some acros need really high carbs (more than 20% carb wet food) to get them up. Neko does fine with 16%, but if she's below 40 (human meter), I jump for the karo. One day soon (I hope) you'll learn what works for Leo.

    Feel free to post on the Lantus/lev forum if you have any questions, including what to do about the dose.
     
  12. julie & punkin (ga)

    julie & punkin (ga) Well-Known Member

    Joined:
    Feb 17, 2011
    I read through the end of your thread on the PZI group and hope we can convince you to come over to the Lantus/Lev group to post. There are a lot of good reasons for including high dose cats in the regular group. As I mentioned to you before, the high dose cats used to have their own group here but people got their knickers in a twist and left. As I heard the story it was because someone with a non-high-dose cat criticized the amount of insulin a high dose cat got.

    With the change to having the kitties just stay with the insulin support group for the insulin they are using, it has become the norm to see a huge variety of dosages. Someone who has a cat on 1u might be surprised, but there is no criticism of giving the dose the cat needs. It has helped to normalize the idea that cats need as much as they need.

    Yes, it is a busy group but it's not too busy that you'll get lost. I'd encourage you to read other people's threads and you'll find other cats also getting larger-than-typical doses. With one in 4 diabetic cats having acro, there are many. I rarely look outside the Lantus/Lev group because I already spend more time than I want just looking at threads in that group.

    I bought a friskies' gravy lover's that was 25% carbs and that became my go-to for raising blood sugar. It worked fast and well for punkin. I had started out with a 16% and it didn't cut it. One more option is to add karo/honey/maple syrup to a low carb food. You always want to have a large stock of high carb supplies, just in case.

    Yay on finding a doctor that knows her stuff on acro. I would also disagree about the goals for his nadirs. While you're not expecting an acro cat to go into remission by holding their blood sugar in normal range, and the same time it seems pretty clear that keeping the blood sugar at least somewhat lower helps to keep the dose under control. In the German Katzen group they don't recommend people test their cats for high dose conditions, the cats follow the Tight Reg protocol, and it's very uncommon for them to have a cat go over 8u. Glucose Toxicity causes the dose to have to go up, and it occurs when a cat isn't getting into normal numbers. I think the best thing to do is to make observations yourself on how leo responds to high carbs so you have some confidence about being able to bring his blood sugar up and steer him. It's less nerve-wracking to do that when a cat is at a lower dose than higher - so that's an idea for you to consider, anyway.

    We have a lot of examples of cats on high doses who were kept mostly below 150ish. Suki's Crystal was one, Lauren's Tommy was another. Of course, Wendy has done a fantastic job with Neko. I let punkin's blood sugar drift up, having gotten advice similar to what your specialist said, and the result was a runaway dose. I was behind him the entire summer of 2011, trying to keep him in blue but not succeeding. This is one of those "if you can't be a good example, be a terrible warning" things that people post on facebook, lol. I wish we could've been the good example, but I was unnerved by the people telling me that "blue was the acro cat's green." The trouble is that you can't usually get a cat to be flat in blue. Once in a while one will, but mostly it takes getting them into green numbers to have their blood sugar flatten out.

    I didn't mean to write a book . . . welcome to the world of the high dose kitties! We're happy to help you - just tag one of us if you need help and we don't see your questions.
     
  13. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Hi Wendy and Julie,

    I surveyed the most recent 100 threads in the Lantus/Levemir group. I looked for dosages over 8units. What did I find?
    100 threads
    1 of them = high dose = Titi
    1 of them = Neko (former high dose)

    So out of 100 threads, only 1%. Sure that could vary over time. Maybe I missed one. However, I'll follow the defacto protocol, and I'll post over there. Seems it would be useful for current high-dosers to have a grouping of threads here for reference. It feels to me that this protocol is being driven by events of the past by people who are no longer even on the forum.

    Glucose: I tend to agree on your recommendations for glucose curves. Leo has crept back up with the switch to Levemir. I'll let it stabilize and will increase slowly. At his high dose of 10 units, a 0.5 increase is only 5%.

    Hypos: We have some gravy-lovers food for our new outside cat Little Dude. He loves gravy. I can use that for Leo if we have an episode. Thanks for the tip on that. I'll mix in some Karo if the numbers go way low.

    Acro: I read a bunch of the content, including the scientific jargon articles. A horrible condition. We will get Leo's confirmed diagnosis by Sept 2 (Friday). Then we'll consider SRT.

    ...and I agree that Wendy has done a superb job with Neko. A great example of treatment and nuture, showing the condition can be mostly cured. 40 weeks post SRT and down to 1.25 units. Wow.

    @Wendy, I think you can take this out of your signature now "do not copy dosing" :)
    .
     
  14. Sharon14

    Sharon14 Well-Known Member

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    Aug 16, 2015
    2 other high dose acrocats are Karen & Lily and Saltycat(Wes and Jack) Karen doesn't post often, but Wes does. Neither of them have had SRT treatment. Also, be sure if you need to tag Wendy for advice, to use Wendy&Neko, not just Wendy who is another member. I'll look for your L&L posts.
     
  15. BJM

    BJM Well-Known Member

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    Oct 6, 2010
    You may want to check urine for glucose and ketones, as the renal threshold can vary among cats.
     
  16. Sharon14

    Sharon14 Well-Known Member

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    Aug 16, 2015
    Jeff, how's Leo doing?
     
  17. JeffJ

    JeffJ Well-Known Member

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    Jul 7, 2016
    Thank you for asking. His BG is high. I was probably too conservative dropping from 13.0 to 10.0 when he was switched to Levemir. Now up to 12.0. Will continue a strong ramp until a decent nadir is achieved.

    Acromegaly:
    We expect blood test results Thursday or Friday. If Acro is confirmed, we will proceed with SRT asap. We unexpectedly lost Scoobs on July 1. We can't bear the thought of losing both our tabby boys in the same year. Scoobs was ~8 years old. Leo is 10.5 years old.
     
  18. Sharon14

    Sharon14 Well-Known Member

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    Aug 16, 2015
    Good luck with the test results and the SRT if needed.
     
  19. JeffJ

    JeffJ Well-Known Member

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    Jul 7, 2016
    Thanks Sharon. I'll keep some picture and text logs as we go thru SRT if that occurs. Probably not as good of records as Wendy.
     
  20. Sharon14

    Sharon14 Well-Known Member

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    Aug 16, 2015
    Great idea! It will probably help lots of kitties in the future.
     
  21. Olive & Paula

    Olive & Paula Well-Known Member

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    Sep 6, 2015
    Good luck with the tests. I do not know much on the 2 conditions. Just wanted to offer support.

    So sorry about Scoobs. He/she will keep an eye on you.
     
  22. Ruby&Baco

    Ruby&Baco Well-Known Member

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    Apr 21, 2016
    Hi Jeff, how do you find the levemir working for Leo? Does it seems to do better than Prozinc? Or is it too soon to tell?
     
  23. JeffJ

    JeffJ Well-Known Member

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    Jul 7, 2016
    Thanks for asking Ruby. I have had to ramp him to 13.5 to get some reduction. Will continue the increase tomorrow. I want to get him in the 150-200 range.

    Tomorrow is Friday and we hope to get the Acromegaly test results. I don't want them to be positive, but at this point it is unlikely to be insulin antibodies. If Acro is confirmed, we will proceed with SRT within 2 weeks as soon as it can be scheduled. That will be roundtrip driving from Austin, TX to Fort Collins, Colorado (north Colorado). One would think Texas has lots of people and technology. Not sure why SRT is not at Texas A&M Veterinary School - 2 hours east of Austin.

    Leo's neuropathy is pretty bad now. We need to fix him. I brush him and love on him frequently thru the day. Theresa does too.

    On a positive note. Little Dude (the lovebug) has gone from being a stray to a leg lovin' magnetic purr box. He just got his second ear mite treatment yesterday. Another 2 weeks and he can come inside. He is dying to come inside and be part of the family. Pic of Little Dude is attached. He is leaning on my leg, and is making dough on the towel on our front porch. We think he must have gotten lost. He is 6-8 years old. We know he was stray for over 8 months.
     

    Attached Files:

  24. JeffJ

    JeffJ Well-Known Member

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    Jul 7, 2016
    Leo is confirmed to have Acromegaly by our veterinarian internist. IAA was not tested.
    IGH-1 for Leo = 305
    IGH-1 normal cat = 92 or less

    Acromegaly confirmation:
    The following article lists IGH-1 over 1000 ng/ml as confirmation of Acromegaly
    Hypersomatotropism, Acromegaly, and Hyperadrenocorticism and Feline Diabetes Mellitus

    I will call Colorado State on Tuesday after the holiday using the contact number in the "Sept 2015" posting.

    Pricing and cat longevity:
    @Wendy&Neko - I saw the cost listed in your post here
    as "I was given a quote of low end $5908 to high end $7213"

    For some reason I thought it was $4,000. This was the main thread that had those prices:
    Places to get Acro treated and notes I took in Sept 2015

    The doctor quoted in that thread said that most untreated Acro-cats only live 18-36 months after diagnosis. It's possible those Acro-cats were not being regulated with insulin very well.

    Leo and IGH-1 vs insulin
    Leo summary history:
    - 4/2015 symptoms
    - 8/8/2015 diagnosed, and Lantus insulin started
    - 7/7/2016 Prozinc started, and Lantus stopped
    - 8/25/2016 Levemir started, and ProZinc stopped

    Leo is now at 14.0 units/dose, and is just now responding to the Levemir. See chart in my signature.

    It is possible to overanalyze everything. I wonder what happens in a cat (or human) body. If you dose such high insulin, how is the insulin competing with the IGH-1? Maybe the excess IGH-1 gets displaced and affects other parts of the body to make those grow even faster. That would mean a high-dose insulin would cause the acromegaly symptoms to accelerate.
     
    Last edited: Sep 2, 2016
  25. Wendy&Neko

    Wendy&Neko Well-Known Member

    Joined:
    Feb 28, 2012
    Sorry about the diagnosis, but probably not too surprising. And now you have answers and can move ahead.:bighug: Neko's diagnosis launched me into action too. When I talked to the folks at CSU first time there, 4 years ago, the average life expectancy was 2 years, but they hadn't been using the technology long enough and they didn't have enough data to say that was the real numbers. Many of these cats are older and pass from other conditions (such as cancer, kidney disease), not acromegaly once treated. And yes, getting cats into better numbers, more time under renal threshold, really helps.

    Jeff, could you post over in the Lantus and Levemir forum? You are more likely to get dose advice over there - this forum is very quiet. I didn't get you other tag. BTW, other high dose kitties include Polly (@pollydoodle ), who got over 10 units, had SRT almost two years ago and is now down to 0.1u of insulin. Yes, that is not a typo. :cool: MissMeows (Gabrielle) and Oren (Megan) are both around 10 units dose now but infrequent posters. We've also had confirmed acrocats around 4 units - not all are high dosers. And one over 60 units with 20+ units of R. When you at the size dose you are currently, you can increase by 1 unit every 4 cycles (2 days), until you start to see blue or maybe low yellow, then slow down and hold doses longer - at least 3 days (6 cycles).

    If you want to see spreadsheets of other acrocats, let me know - I can point you to a lot of them, past and present.

    When I first took Neko to CSU 4 years ago, it cost around $4,000. Prices were higher 3 years later. The original quote varied so much because they weren't sure whether she'd need an MRI. The tumor is not always visible on CT (though most are), and if not, they also need at MRI before proceeding. The folks at CSU are great, know their stuff and very compassionate.

    I don't know the answers to your IGF-1 question, but protecting the kidneys with lower BG is a good idea. Keep your eyes on Health the next couple of days I'll be posting about a new drug trial at the Royal Veterinary College in London to help our acrocats. They are doing great work there that I hope will one day help our cats too.
     
  26. JeffJ

    JeffJ Well-Known Member

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    Jul 7, 2016
    Thanks for the followup and details Wendy. I'm not really looking for dosing advice, but I appreciate it. I'll continue the ramp to drive him down into a decent range.

    That is interesting about the cost. I hope Leo doesn't need an MRI. I'll call Tuesday, and post updated price estimates here. These treatments seem to be priced for well-to-do middle class or upper class.

    That is also interesting about the 0.1u of insulin after treatment. I don't want to sound selfish, but all the insulin and testing for Leo is very time consuming. It would be nice to get some time back.

    Thanks for the info. Grainy pic of a squirmy Leo's prognathia from today. Over 1/8" separation of the canines. The lower jaw has grown out that much. When you live with them everyday, the Acro symptoms are not that obvious.
     

    Attached Files:

  27. Sharon14

    Sharon14 Well-Known Member

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    Aug 16, 2015
    Hi Jeff. Sorry for the diagnosis, but at least you know and can get started on the treatment. Good luck with the SRT. Hope he doesn't need the MRI and that things go as smoothly as possible. Keep us posted.
     
  28. Wendy&Neko

    Wendy&Neko Well-Known Member

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    Feb 28, 2012
    Just trying to keep him safe. Playing with high doses and the large depot is a different ball game. A lot of kitties get down to much smaller doses after treatment, and fortunately, get more predictable. However, the ride down from high doses can be rather crazy.

    I compared their MRI and CT scan costs to those from the specialty clinic here, and they are reasonably close. Those and the radiation are the big dicket items. When I was first there, they had some studies going on that made some items cheaper. At the time, if we'd needed an MRI, it would have been free. They will want a recent bloodwork before proceeding and for Neko's second visit, they wanted an echocardiogram done first.
     
  29. JeffJ

    JeffJ Well-Known Member

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    Jul 7, 2016
    Thanks for the support. I'll keep him safe. And I'll update this thread with info.

    It feels odd to dose 14.0 and have little effect. But now that he's around BG=300, he seems more responsive. It sure beats his days in the 450-550 range. He was totally out of it then.
     
  30. Alexi

    Alexi Member

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    Apr 10, 2016
  31. Wendy&Neko

    Wendy&Neko Well-Known Member

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    Feb 28, 2012
    I investigated the cost of pasireotide. In Canada it would have cost me $5,000 for each three month supply. It's more expensive in the US according to a researcher I contacted. Even though they've had some cats go into remission on pasireotide, the RVC folks realize it's not a cost affortable option for most, hence their latest study to look at a new drug option.
     
  32. Alexi

    Alexi Member

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    Apr 10, 2016
    I look forwards to hearing more - I know they are also doing surgery but was quite surprised to read that they are one of only a very few centres worldwide to offer surgery for acromegaly. The costs of the drugs are eye watering.
     
  33. JeffJ

    JeffJ Well-Known Member

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    Jul 7, 2016
    Thanks for the feedback. No viable news here. PZI was more effective than Levemir for Leo. Dosage is now at 14.5u, and BG hovering between 300-420. Levemir is drastically cheaper than PZI, so I'll stay with Levemir.

    The pasireotide looks interesting. I read the study that was provided. It has a side effect of requiring more insulin. Perhaps it has the same effect as IGH-1, and displaces the insulin at each blood cell as well. Too expensive to use though.

    The cost of this whole situation is eye watering. On Leo's spreadsheet there is a "prices and notes" tab. At 12u doses, the insulin options are:
    $3,000/year Prozinc - direct from vet, and each vial only lasting ~2.0 weeks
    $2,200/year Lantus - from pharmacy
    $1,100/year Levemir - via web

    The July and August expenses:
    $600 - board Leo while we were on vacation, and they let him lose a whole pound over 9 days
    $1,600 - Little Dude, rescue, catch up treatments, dental extractions, neuter... now rewarded by his extreme sweetness
    $1,050 - Scoobs emergency treatment and surgery, then we lost him anyhow. Oh my sweet Scoobs, I miss you so much :-(
    $700 - 2 Leo followup exams and bloodwork in July and August

    Then this week, a neighbor found a dying totally emaciated Siamese cat. Literally almost dead, flies landing on him. Theresa got involved. I got the kitty and took him to the emergency clinic. The owner was found via microchip, only 10 houses away. But the owner decided to euthanize. Theresa wanted to fund the recovery. We both lost sleep over it. But we just couldn't afford it. His name was Puma, and he was lost for 2 months. He was 10 years old, and he is with Scoobs at the Rainbow Bridge. Sadness.

    In summary, we want the SRT to give Leo more life. It will be expensive. Over 2 years, it will be more cost effective than time and costs involved with high-dose insulin.
     
  34. julie & punkin (ga)

    julie & punkin (ga) Well-Known Member

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    Feb 17, 2011
    Sweet little Puma - I'm so sorry for him. It's too bad his owner didn't come through for him. You gotta wonder about people.

    I don't remember if you saw or not, but I do have the link to Punkin's SRT adventure in my signature line - lots of details and pics in it, including a few of CSU and the staff. I went through the number crunching and decided it was worth it to have punkin treated with the SRT. Even not treating is expensive, and the only thing that protects their body is doing the SRT. I was glad we did it, even though punkin only lived 2.5 years after the treatment. I was afraid I'd be consumed by guilt if I hadn't done everything I could to help him. Punkin was an old soul, like a wise old monk, and he deserved the best.

    In any case, I hope all goes well for you with Leo's treatment. I thought the folks at CSU were incredibly competent.

    Other high dose kitties that post in LLL include Jenks (no diagnosis), Doodles (iaa), Tuxie (Cushing's), Purrdy (Cushing's), Fritz (no diagnosis) - there might be others but it's not uncommon for people to learn what they need to know, then not to necessarily post every day.

    Just ask if you need anything!
     
  35. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Puma:
    I accidentally left something out about Puma. It was a budget decision, and the person indicated they just couldn't afford it. I don't want to give details that might identify the owner. And Puma was really toast. It is possible with all the money in the world, that he would not make it. It seemed like he was only 3-5 pounds, and should have been 11-13 pounds. We wish he had come just 3 houses closer and we would have fed him, but we never saw him in those 2 months. People like you, me, the others on this forum - I think we sacrifice ourselves and our budget. Others may care for their pets but not go quite that far. Thanks for the condolences. Scoobs' given name was Duma. So for 2 sad nights we lit the memorial candle for Duma and Puma, even though we only knew Puma for 2 hours. The poor sweet kitties who departed our lives this summer. More sadness.

    Punkin and SRT:
    I think it is amazing what you did for Punkin. And what Wendy did for Neko (twice). I read your SRT posts twice now, as well as others. What a great life Punkin had.

    My trip to Fort Collins is still tbd for scheduling. It will be 15-16 hours for Austin to Ft. Collins (950 miles). To stay sane, it will probably be 2 days each way. We have relatives in south Denver, but I'll probably stay in the same hotel you did. This will be my first road trip since Austin <-> El Paso in 2003.
     
  36. julie & punkin (ga)

    julie & punkin (ga) Well-Known Member

    Joined:
    Feb 17, 2011
    It was something like 1300 miles each way for us to drive to Ft. Collins. We also did it in 2 days each way. Breaking it up definitely helped - even with that it was still a really long drive!

    It must be time, then! That's a long time without traveling!

    So sad when the decisions are based on money. It's an unfortunate reality. We all have to live within our budget, but I hate to hear that a kitty died because of that. Thinking of your Scooby/Duma and Puma.
     
  37. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    I called Colorado State today. They are mostly on holiday. I'll call them back tomorrow. Their website is pretty good. Their phone menus and updated website indicate they receive a lot of calls.
    http://www.csuanimalcancercenter.org/
    http://www.csuanimalcancercenter.org/radiation-therapy

    The webpages include current clinical trials - which are all for dawgs. What's up with that? :)

    Their numbers are:
    appointment line at 970-297-5000 option 2 - http://www.csuanimalcancercenter.org/make-an-appointment
    consult line at (970) 297-4195 - http://www.csuanimalcancercenter.org/preparing-for-your-visit
     
  38. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Just burnt thru the first Levemir flextouch pen in 12 days.
    I calculated Leo received 302 units actual out of the 300 units that were in that pen, so that's good.

    Now at 15.0 units/dose. Up in the same range that Colin was for awhile (for Sharon), but at least Colin exhibited some nadirs for all that trouble. It is obvious to me that Leo was far more responsive to PZI. For 300 units that works out to:
    PZI = $0.325/unit x 300 units -> $97.50 for 12 days, if Leo stayed on PZI
    Levemir = $0.123/unit x 300 units -> $36.90 for 12 days actual
    .
     
  39. julie & punkin (ga)

    julie & punkin (ga) Well-Known Member

    Joined:
    Feb 17, 2011
    Nicely done! That's kind of like getting blood out of a stone, right?!

    Punkin got up to 15.5u before he had the SRT. He had nadirs but everything was high. I thought the biggest mistake I made was in not giving large enough increases. I continued giving the 0,25u increases even after 10u. It seems to me that it's most successful to think in terms of "getting on top" of numbers. I think I spent the entire summer of 2011 running behind Punkin trying to catch up.
     
  40. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Thanks Julie. It was fun trying to get that last bit out of the flextouch pen. I'm going to dissect the pen to see what it looks like inside.

    I'm looking forward to talking to CSU tomorrow. If we are lucky, I can schedule it for next week.

    For Leo, I'm going to try to get to a 220-250 nadir at least once this week.

    Other cats:
    We are both missing on Scoobs. He used to walk with Theresa and the dogs. She went walking with the dogs tonight, then texted me that she turned around and accidentally waited for Scoobs to catch up to her :-( He used to sometimes wait and come running to catch up. We lit the Monday night memorial candle for Scoobs (Duma) and Puma tonight. Our cats touch our lives so much. The other shining light in our life is Little Dude, who we "tamed" just in the last month. Little Dude's flickr page is here. Does he look tamed yet?
     
  41. Sharon14

    Sharon14 Well-Known Member

    Joined:
    Aug 16, 2015
    Little Dude is adorable, he seems to really like those tummy rubs. You and your wife have done a great job!
    Sorry Leo is so hard to regulate, I hope you find a good dose soon. I too get every last drop from each pen. Even when the plunger looks like it's as far as it can go, there are a few more units in there! Let us know what CSU says.
     
  42. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Called CSU today ~11am, and spoke to a real person. Leo now has a case number. Then I was referred to consultation services. I will consult with them and they will establish the treatment, and schedule the appointments. Their scheduling protocol is to return the call within 24-48 hours. They must be pretty busy.

    Leo's ramp continues tomorrow. Overall he is kinda cranky, and generally ravenous. I made his litter box easier to get to. His neuropathy is bad.
    15.5u current dose
    280 - "low" nadir achieved today.
    16.0u - tomorrow's dose

    Little Dude is just about as sweet as they get. He will probably go to the vet this week. I want confirmation the mites are gone. I might pay to have his ears flushed.
     
  43. Wendy&Neko

    Wendy&Neko Well-Known Member

    Joined:
    Feb 28, 2012
    Good luck moving ahead with CSU. As it's the new school year, they are probably quite busy. Once I got an email contact, things moved quite quickly for us.

    Typical Lev nadir is +8 (though Neko's is later), you might want to try some tests a little later in the cycle. Evening or "before bed" spot checks are a good idea. Many cats go lower at night. Is he on Zobaline for his neuropathy?
     
  44. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Thanks Wendy. Leo is on 3 tabs Zobaline a day. I'll test him tomorrow at +8 after AM shot. As of 4:30pm, no call back from CSU today.

    My Mom died last week, at age 80. So this has been another sad week. And a sad summer, losing Scoobs, then the stray Puma. Too many tears.
     
  45. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Leo is tentatively scheduled for Monday 9/26 - YAY.

    Sandra Larson just called. She is the Colo State Oncology Coordinator.

    Sandra told me estimated costs are $7,500 - $8,500. Now rereading thread "Places to get acro treated...", the quote was:
    CT & 3 days SRT treatment - $7500
    Internist consult extra

    Next step 1: Oncologist calls me for brief consultation by Monday afternoon. I have Sandra's email and phone number in case it does not occur.

    Next step 2: Prep for trip, and setup hotel reservation there.
     
  46. julie & punkin (ga)

    julie & punkin (ga) Well-Known Member

    Joined:
    Feb 17, 2011
    I'm so sorry to hear your mom passed away, Jeff. You have my deepest sympathy.
     
  47. BJM

    BJM Well-Known Member

    Joined:
    Oct 6, 2010
    {{hugs}}
     
  48. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Thanks Julie and BJM. I'm almost done with Mom's tribute website. I setup obits in 4 cities (expensive), as she spent about 1/4 of her life in each. At age 60, I am now parentless. I was lucky to have pretty good parents at all. I sure miss my parents and my step-parents. They all gave me great encouragement and support through my 3 college degrees and computer career.
     
  49. Sharon14

    Sharon14 Well-Known Member

    Joined:
    Aug 16, 2015
    Jeff, I'm so very sorry about your mom.
     
  50. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Sharon14 likes this.
  51. Sharon14

    Sharon14 Well-Known Member

    Joined:
    Aug 16, 2015
    Beautiful tribute!
     
  52. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Thanks Sharon. Next post contains Colorado State and SRT details.
     
  53. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Leo's health
    Leo is almost unresponsive to Levemir, I might as well be dosing him water. 17 units/dose now, and not very effective. Maybe I got a bad batch? I doubt it. Levemir pens expire in 2018 and are brand new. Neuropathy is pretty bad. Maybe I'll go back to Lantus after the SRT. The PZI was stupidly expensive, but worked. Maybe at low doses we'll go for it.

    Colorado State University plan and notes from discussion
    Beatrix Janei - Radiology Resident, assigned to Leo for SRT, phone meeting today 9/9/2016.

    Monday 9/19 - Friday 9/23 treatment is scheduled (appointment moved up one week)

    1) Schedule
    Mon - exam, bloodwork, patient review, setup for Tuesday
    Tue - imaging via CT. If successful, then no MRI needed. If unclear, then MRI required.
    Wed - Fri - SRT treatments, 20 minutes each, anesthetized each time, and during imaging on Tuesday.
    Friday: checkout. Can start the drive home if checkout is early enough.
    Leo is released each day, and will spend evenings in the hotel with me. It will be a challenge to ensure he pees into the litter box. He is pretty good at home.

    2) Prices
    $1400 - CT scan, if successful and clear then no MRI needed
    $600 - MRI if needed
    $4,000 - SRT in 3 treatments, high dose, focused radiation
    --------
    $5,400 - $6,500

    I think there are exam costs too. So previous estimates were $7,000 - $8,000.
    Care Credit is accepted. We are to call the front desk to set it up = 970-297-5000

    3) Objectives and notes
    There is a gain of 600 days median survival rate. (JJ comment: maybe we caught Leo early, so it could be longer?)
    All SRT cats become more responsive to insulin. SRT stops the tumor from growing and producing.
    Neuropathy could get better once the cat is responsive to insulin.
    BG must be monitored closely after SRT, and dosage adjusted.

    4) Side effects
    No immediate side effects.
    Could develop 8 weeks later, swelling or some neurologic effects like seizure. In that case steroids are prescribed.
    Late side effect is brain necrosis around the radiated area. 1% of cases. Irreversible. Occurs 1 year later.

    5) Acro cats vs others
    They treated 4 Acro cats in 2015. She said Acro is not diagnosed/treated, or people just don't go to CSU for treatment. (JJ: probably too expensive for the bulk of the population).
    They treat other tumors in cats far more frequently, bladder tumors, etc.
    If Leo gets there and no tumor is found, they will consult with me to determine other treatment options. Based on my knowledge from this forum, I doubt there are any. Leo has obvious Acro symptoms, elevated IGH-1, and physical signs.

    6) Personnel
    She said as a radiology resident, most of her day is spent in front of a computer, or at the equipment. As a result, other employees do the prep and exam work. There are also anesthesiologists.

    7) Equipment
    She said there is spare time around the equipment. I'll take a bunch of pics and geek out.

    8) Comments
    If you've read this thread, you know our recent losses
    - July 1, Scoobs, our 8 year old sweetie
    - August, Puma, a 10 year old Siamese we tried to rescue, who died the same day from starvation and exposure
    - August 30, my Mom

    We need to sustain some life. It will cost money. We'll use Care Credit to spread it out. I have appreciated everyone's condolences and support throughout this journey.
     
  54. Madrona and Leda

    Madrona and Leda Well-Known Member

    Joined:
    May 4, 2016
    Sounds like you have a solid plan, best of luck!
     
  55. Sharon14

    Sharon14 Well-Known Member

    Joined:
    Aug 16, 2015
    Wow, glad it's happening fast for you! Good luck with the SRT. I look forward to hearing all about it.
     
  56. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Thanks. I'll post updates when they happen, like the start of the trip. I've been handling my Mom's stuff. There's the obits which are done, the grief part, then the plan for the household in Sequim (I live in Austin, TX). My sister will help me in late October with that. She posted a touching story (at the bottom):
    https://www.lastingmemories.com/memorial/carol-ahrens?story

    Leo:
    PMPS was 435 today. It was 13 hours (shot to shot) instead of 12 hours. Leo is not doing well. I've increased Zobaline to 4 tabs/day. Such a trooper. We brush and rub him a bunch each day. He purrs all the time. Oh my sweet boy.

    I wish I could get him to 200-250. Oh well, 8 more days and I'll be in Fort Collins.
    .
     

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  57. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Darn It. AM fur shot. And there's nothing to do about it. Some may have gotten in. I get to feel stupid all day. Leo gets to feel bad. I don't shave the site because I vary the site.

    AMPS = 315...I'll try to reduce food today. 6 days until SRT trip departure.
     
  58. julie & punkin (ga)

    julie & punkin (ga) Well-Known Member

    Joined:
    Feb 17, 2011
    I read your tribute to your mom - it was lovely.

    It can seem like that, but I'm not sure you can be certain how low the dose is taking Leo. I know you said earlier that you weren't looking for dosing advice. How are you making the decision on what to do with his dose? I'm going to make some general observations for things I have seen with other acro cats, even though you've said you're not looking for help.

    Too much insulin can look just like not enough insulin. There are quite a few counter-intuitive things about how a diabetic cat "works" and this little fact is one of them. Too much insulin can actually cause high numbers.

    The way to prevent giving too much insulin is to always be confident of how low the current dose is taking the cat's blood sugar before one increases. That means catching nadirs on each dose - which means seeing how low the cat goes in between bounces and giving enough time on a dose that New Dose Wonkiness has passed - before you increase the dose.

    Even in the circumstance where we are encouraging someone to fast-track a cat because the cat is stuck in high numbers, unless the circumstance were really unusual (which I haven't seen this happen yet in 5 years) people give at least 4 cycles of each dose before they increase. I wouldn't suggest fast-tracking for any cat that isn't having a minimum of 4 tests per day - both preshots and at least one test in the pm cycle. Missing any tests in the pm cycle prevents one from being certain how low their cat is going.

    I don't think that this is an issue of the Levemir not working. Either you're missing the low points and he's getting lower than you think on the Lev, or his insulin dose needs are higher than he's at right now. I don't know what you mean about "maybe at low doses we'll go for it." Are you thinking about switching to PZI and decreasing his dose?

    I want to strongly encourage you to post over on the Lantus/Lev group. Even though you think it's busy, which it is, people work hard to keep track of each other so that no one falls through the cracks. I see how much you love Leo and you are willing to go the extra mile for him, but surely you want to learn what you need to know to take care of a a him as a high dose cat. You don't know those things yet. The best way for you to learn what you need to know is to post there, learn more about how Lev works, and to read up on and track the other high dose cats there. For Leo's sake, I hope you will.
     
  59. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    PMPS = 510
    then 17.5 units for his PM dose

    This is the first over 500 since switching to Levemir. The missed shot (fur shot) this morning did it. The 510 value is +(100-200) over normal PMPS. So the insulin is having an effect, just not enough. I will take him to 20 units max. By then he will be at CSU (with me) getting treated.
     
  60. julie & punkin (ga)

    julie & punkin (ga) Well-Known Member

    Joined:
    Feb 17, 2011
    We posted at the same time.

    With a fur shot this morning, I would encourage you to stay at the 17.5u for at least 4-6 consecutive cycles - which means starting the count tonight as the 1st cycle. This is a depot insulin, which means that interruptions - like a fur shot - make your cycle count start over.
     
  61. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Ok. Thanks for the advice Julie. He hasn't been having very low nadirs. But I'll stay at 17.5 for 6 cycles. I felt so bad with the fur shot, but ya can't reshoot.

    I have read your post twice. I do appreciate the advice. I want this thread in the acro forum so people see it in the future. This is mostly an acro and SRT thread (although I do get sidetracked. I did read multiple acro articles. The insulin molecules in acro are displaced by IGH-1. I understand that the externally applied insulin is then trying to outnumber/displace that extra IGH-1.

    "Maybe at low doses we'll go for it (for PZI)." Well the PZI was almost 3x expensive. At 17u per dose I just can't afford it, and a vial would only last 12 days. At 1-4u per dose, I might switch back after the SRT. Leo seemed to respond the best to PZI. The feature I like with Levemir is that it is easy to obtain.

    I might do a 12 hour on him on Tuesday. I need to spend time on my computer job contracts too. I'll continue to test 3x a day minimum.

    Thanks for the kudos on my Mom's tribute. I hope she can see it too.
     
  62. Alexi

    Alexi Member

    Joined:
    Apr 10, 2016
    Hi Jeff - I don't have much to offer other than :bighug::bighug::bighug:

    We can only do our best for our kitties, but I am following yours and Leo's story. Little Dude sounds like he needs to move in full time - you have so much love to give and sounds like he needs a share of it.
     
  63. julie & punkin (ga)

    julie & punkin (ga) Well-Known Member

    Joined:
    Feb 17, 2011
    Oh, I think I understand - do you mean that if he gets to a low dose post-SRT that you might switch then?

    We had a gradual decline in dose - Punkin got down to 4ish units, although I hadn't seen SRT-response in action at the time and I reduced his dose in advance. Knowing what I have seen since then, it would've been better for him if I had waited until he earned a reduction and THEN reduced the dose. But I didn't have the experience of seeing how other post-SRT kitties did at that time. He probably needed to be at a slightly higher dose and getting more into green numbers before I reduced. We all do the best we can, with what we know at the time. I don't think it made any difference in the long run.
     
  64. julie & punkin (ga)

    julie & punkin (ga) Well-Known Member

    Joined:
    Feb 17, 2011
    I wanted to flag a post for you on Glucose Toxicity. Glucose Toxicity develops when a cat's body stays too long in higher ranges, and it begins to "think" that those higher numbers are normal. Then the dose has to be increase even more to break through and get the blood sugar back down into normal range.

    It's just a good thing to understand.
     
  65. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Thanks Alexi and Julie. A pretty tough year, but some nice stuff like Little Dude our new leg lovin' boy with copper eyes.

    PZI - sorry this was unclear. Yes, if Leo goes to lower doses, then maybe we will switch back to PZI. PZI is so expensive, but he responded better. Leo has not been into the (100-200) range in forever, even at 17u. I suppose he could have Glucose Toxicity and Insulin Resistance, but it can't be fixed this week.

    4 days to departure.
    - got some chores done around the house so Theresa is ready to take care of the 2 dawgs, and also Little Dude, and Chinus
    - Care Credit was setup at home today, will call them tomorrow to set it up at CSU
    - will finalize dates and tickets to process Mom's stuff with my sister. That will be 7-9 days at the end of October. Theresa will be handling Leo and insulin while I'm gone.
    - tomorrow is 5 hours of onsite work, so no 12 hour curve

    Theresa and I lit the memorial candle tonight - for Scoobs, Puma, Punkin, and other GA cats on the forum. I also read thru Punkin's last day. What a great attempt you did to keep him alive. I especially liked this pic: http://s345.photobucket.com/user/yachiwycoff/media/IMG_0187.jpg.html
     
  66. julie & punkin (ga)

    julie & punkin (ga) Well-Known Member

    Joined:
    Feb 17, 2011
    Aw, that was sweet of you to look up Punkin's story. That's one of my very favorite pics of him - he was a noble, dignified cat - majestic even, when he was younger.

    I'll be sending you all my best thoughts and healing wishes when you go to CSU next week.
     
  67. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Trip is laid out:
    Sept 17 - Austin to Amarillo, 485 miles, hotel booked
    Sept 18 - Amarillo to Ft. Collins via 287 = 480 miles, hotel selection tomorrow
    Sept 18-23 - Ft Collins
    Sept 23 - Ft Collins to Amarillo
    Sept 24 - Amarillo to Austin
    15-16 hours driving time one direction, oh joy

    7 nights of hotel, $110/night = $800 estimate

    Cat supplies:
    1) Leo will be crated in a 3' x 3' x 2' high doggie cage during the ride. Open wires.
    I might make him a box so he can lay on it or under it. The upper tier would allow him to see.
    2) The cage will house the litter box as well. The litter box has no top.
    3) Cat carrier, plastic, with front door, for car-to-building moves.
    4) Paper towels, towels, newspapers, litter, food, patience
    5) insulin, test kit, hypo kit, B12
    6) gas mask for times he does a stinker. Lately they could clear out a theater:eek:
    7) Music for Cats - David Teie's Music for Cats see pic

    He has occasional "accidents", and they are 1-2 cups of pee. So I'm tarping off the whole back of the SUV. Nothing worse than cat pee.

    350+ BG for Leo all day today. He got real cranky when we cleaned his back foot. He always does. He stepped right in fresh pee spot in the litter box sometime today, and it was crusted and dried into his toes. He gets pissed off whenever we deal with his back feet. Poor kid. But his feet are clean now. It's the neuropathy. He was so fastidious before all of this. My poor sweet fur kid.

    Theresa was all worried tonight that something could happen up in Colorado and he won't come back. I explained the procedure. There is a chance for later side effects, but he will be returning to Austin alive.

    Chinus helped me type this. She cried for 2 days after our last return from vacation. She hasn't left my side. Such loyalty is so humbling.
     

    Attached Files:

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  68. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Got some of the supplies together today. Staged the big dog cage in the car with the litter box. There will be a small second story for Leo in case he wants to look outside while he is sleeping. Theresa thoroughly inspected and approved the setup.

    Tomorrow, we'll drive around with me in the back. I will identify all the places the darned cage rattles. And I'll wrap them with twist ties to keep me and Leo sane for 32 hours of driving.

    Booked a cheapie hotel in Ft. Collins, $60 a night. Hey, I'm not moving there, just sleeping for 5 nights.

    Thursday a.m. - Little Dude gets his second vet visit. Let's hope they confirm the ear mites are gone. He is dying to come inside. Our little love bug.
     

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  69. Wendy&Neko

    Wendy&Neko Well-Known Member

    Joined:
    Feb 28, 2012
    Safe travels on your trip and best of luck. I found spraying Feliway in the carrier and using Rescue Remedy for pets on the morning feed really helped Neko calm on the drive. Ours was 3 days of 9 hour each driving and she used to hate driving. We did bond even more during the trip, which is a side effect several have noted.

    I found extra towels and pee pads also invaluable for the ride. Once Neko got over the first day jitters she was pretty good about using the litter box, but only when we stopped the car (for gas/food). Not all cats will eat during the trip, but she was pretty good about it. Especially the high carb food on the way back. Yes, my little stinker was unusual and started dropping her insulin needs right away. Nothing like trying to get to an open pullout when traffic is baced up due to a forest fire. Anyway, fun times! For most cats it takes at least 2 weeks to see any SRT effect and I've seen some cats have to continue to up in dose for a couple of months before the radiation does it's magic. The SRT is neutering the tumor cells, not killing them, so you have to wait for the life cycle to play out.
     
  70. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Thanks Wendy. Good suggestions. Tomorrow is a prep day. The whole trip is in the U.S., so I can always stop at a store if needed. That's good info about eating and elimination. We'll see how it goes with leo.

    Post SRT will be interesting. You have Neko regulated. Leo is still not regulated. I beat myself up about it. It has caused his neuropathy. With luck we will see numbers start dropping. I'll review the spreadsheets again. Post SRT I will reduce food to help drive numbers down. He has not gained weight. Still 16.5 pounds.

    Little Dude the Love Bug is free of ear mites! He does have leftovers in his ears. The vet applied BNT ointment. Little Dude does NOT let us in his ears. This should fix any fungus or infection in his ears. He did have chronic ear mites when we first got him. In summary, now he can become an inside/outside cat. We will wait until I return to introduce him to Leo.
     
  71. Wendy&Neko

    Wendy&Neko Well-Known Member

    Joined:
    Feb 28, 2012
    Neko was no where near regulated when we first went to CSU. She was just as likely to start her day with red or pink back then. Two days before we left she earned her first reduction, starting the day at 430, down to 49 and zooming back up by the end of the cycle - which is why we stress mid cycle tests. Levemir cats nadir later, typically +8 but many acrocats even later. Neko tends to be between +9 and +12, I can't tell from what tests you've done where Leo's nadir falls. When you get back from CSU, knowing what part of the cycle Leo tends to go low will be very important so you can keep him safe when his dose needs start to fall. I don't think reducing food is the key. As long as he's maintaining weight, I would maintain that amount of food. Unregulated cats need the food. If you can get a better idea of how he's doing on a particlar insulin dose, you can raise the dose to get him into better numbers.

    In Fort Collins, there are both Petco and Petsmart on South College Way, which is the main drag near where you turn off for CSU. Lots of places to replenish supplies. The Petsmart is open quite late. Second time there I flew, and got in quite late on the Sunday cause my luggage took a different flight to Denver that I did. :rolleyes: Fortunately I got to Petsmart in time to get a litter box and more litter before settling into the hotel.

    Good news on Little Dude - looks like he wants to be a loving indoor cat.
     
  72. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Thanks Wendy, good advice. Lately, Leo's body just doesn't want a nadir. So I stopped fretting about it. Post SRT - I will be a testing fiend!

    Thanks for the info about Petco and Petsmart. In north Austin, they are close together as well. We like Petsmart better. I'm taking full supplies up there. But I might visit the Petsmart to see their layout.

    Little Dude definitely wants inside. Chinus, the female will be the issue. We had Scoobs for 7 years, and Chinus and Scoobs had pissing contests the whole time. But of course we look past that as much as we could. Yes, we have multi-cat Feliway. And lots of paper towels. We also had the whole house tiled, AND epoxy grout which was expensive. Impervious to pee though.
     
  73. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Prep work for trip done. Little Dude helped me pack the car. Outside cats are so fun. Scoobs used to help me. Road trip starts tomorrow.

    12 hr curve done for Leo today. 12th hour will probably be 380-420.
    Nadir was at +4 hrs = 297.
     
  74. Sharon14

    Sharon14 Well-Known Member

    Joined:
    Aug 16, 2015
    Safe trip tomorrow and prayers for a successful SRT.
    We're all rooting for ya, Leo!
     
  75. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Hi @Wendy&Neko and @julie & punkin (ga)

    CSU called and confirmed my Monday appt. They said to withhold food the night before. How did you deal with that? This will probably be the same each day for the anesthesia and SRT.

    If I withhold food but give his dose, then he could crash without the calories. Should I just skip the dose?

    thanks,
    jj
     
  76. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Austin to Amarillo accomplished!

    Leo:
    4:30am - Theresa fed him way early. So by 9am his BG = 200
    9:00am - fed and dosed
    9:15am - peed in the litter box, YAY
    9:30a - 6:30p - 9 hour trip with 5 minute stops, 470 miles
    - ate only 1 can Fancy Feast with water
    - would not pee in the litter box
    AMPS +4 = 200
    GOOD BOY Leo - he peed in the litter box in the hotel room. Such a sweetie.

    Poor Leo. He doesn't like the car, but settled down after 1 hour. He hyperventilated the first few hours. But he did seem to like looking outside. Did not cry after first hour. My good boy.

    Of note:
    - wind farm at San Saba, 1000's of giant wind turbines, harnessing energy
    - full grown jack rabbit safely crossed the road way ahead of me. I slowed down as I got near. They are huge, and those ears, wow.
    - East and north east Texas fairly wet this year. Lots of lush crop fields and weeds. I saw a lot of cotton fields.

    Picture: JJ and Leo getting loaded into the car.
     

    Attached Files:

  77. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Reduced evening dose from 18.0 to 12.0. His BG was down to 150. I typed in the numbers. Will monitor. He just ate most of a can of fancy feast.
     
  78. Wendy&Neko

    Wendy&Neko Well-Known Member

    Joined:
    Feb 28, 2012
    They told me I could feed until midnight, which was four hours after shot time, so Neko got all her food in her before calling it a night. We also did just half dose in the morning. If I was worried about how low she'd go at night after midnight, I gave her higher carb food for her before bed snack. Sorry not to respond earlier, power outage here.

    Nice to see Leo found the blues. :cool: Guess he likes travelling.
     
  79. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Thanks Wendy for the info. Yes, Leo's BG seemed to align very well with travelling. I hope your power is back on for good.

    On Little Dude:
    Theresa let him in as soon as we left. He is exploring inside. She said he likes to be outside. She has lured him to the backyard which will now be his new safe center of operations. We are overjoyed with his progress and his integration into our family. It will be interesting for Leo to come home and meet Little Dude. Leo is very friendly, so we expect the continued problem will be Chinus (female siamese) not accepting Little Dude.
     
  80. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Day 1 Travel went well, summarized above.

    Day 2 Prep and Travel starts.
    Leo slept well, and only cried a couple times at night. He got food at 4:30am.
    AMPS = 305.
    Dose 1 = 18.0 @8:30am

    Good boy Leo. He peed and pooped in the litter box. Who could ask for more?
    Well he gave me more - a bunch of leg lovin's and a bunch of purrs. What a heart of gold.

    Prep time now, then Day 2 Travel from Amarillo, TX to Ft. Collins.
     

    Attached Files:

  81. Alexi

    Alexi Member

    Joined:
    Apr 10, 2016
    He's looking very happy and relaxed, and good news on Little Dude. Wishing you the best on Leo's road trip. :bighug::bighug:
     
  82. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Day 2 - Travel to Ft. Collins
    Leo has been such a good boy. He used the litter box only after we got to the hotel. No car accidents - what a good boy! He is back at BG=300, so feeding him well tonight. We are in a Motel 6 clone, pretty shabby but I only care if the internet works. We are unpacked and settled in for the week.

    Trip summary:
    - Day 1: 9 hours, more stops than day 2, 470 miles
    - Day 2: 473 miles in 7.5 hours = 63 mph average
    - Total: 943 miles in 16.5 hours = 57 mpg avg total

    Leo:
    - Leo hardly cried at all
    - He hyperventilated a long time, but finally fell asleep
    - He got fed twice during short stops.
    - He would not use the litter box
    - He would not drink any water, so I put extra water in the food
    - No issues during the drive
    - Eastern Colorado is sparsely populated and pretty boring
    - North Texas was more populated, and more heavily farmed with crops and cows
    - This must be a green year. Most of the weeds and shrubs all looked pretty green.

    Pic: Leo in southern Colorado, off of 287, just finished a 5 minute food break.
    There are 30+ twist ties and velcro on the cage. It took over an hour during trip prep. There is not a single rattle - so we are still sane as a result.
     

    Attached Files:

    Last edited: Sep 18, 2016
  83. Wendy&Neko

    Wendy&Neko Well-Known Member

    Joined:
    Feb 28, 2012
    Glad you made it OK. Good boy Leo.:)
     
  84. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Thanks Wendy. Since Leo doesn't drink water or eliminate, it rules out the potential for a 15 hour straight thru drive. Plus, hypothetically, it would be harder to speed during the evenings when you can't see highway patrol. Just hypothetically of course.

    Monday 10:45 am appointment.
    Leo dosed 18.0 units tonight, and overfed on purpose. He is snoozing. He will be whining in the morning for food.
     
  85. Sharon14

    Sharon14 Well-Known Member

    Joined:
    Aug 16, 2015
    Glad you made it to CO safely. Good luck today!
     
  86. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Leo's BG is up above 400 all day. I half-dosed him at 9 units this morning. His body probably needed more.
     
  87. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Day 1 at CSU summary:
    - Weather is stellar, 45 at night, 90 at mid-day, hardly any clouds.
    - The CSU vet campus is easy to find, and easy to park at.
    - Leo is doing great, he is getting used to the vets poking and prodding.
    - A Walmart superstore is nearby. I got food and supplies there.

    Day 1 Monday
    - 4:30am Leo "Dad I'm hungry"
    - 4:45am Leo "Dad, I just stunk up the litter box, please clean it, or not."
    - 5:00am-7:00am "Dad I'm really hungry"
    "If I walk all over you and pester you, will you please get up and feed me???"
    - No food for Leo each morning, so that was fun today, and the rest of week

    Day 1 at CSU Veterinarian Teaching Hospital
    - 10:45 am check in, completed by 3:00pm
    - General health and Acromegaly checked, and confirmed
    - Leo's front jaws show obvious box-like structure typical of Acro
    - I declined additional tests until CT scan is done
    - Example: blood workup & diagnostic profile; which has already been done
    - Ultrasound declined
    - Patient cost estimate detailed, then I signed
    - Day 1 is for CSU.

    Leo is assigned two people:
    a) post-doc resident, veterinarian graduate, a full general vet
    b) 4th year vet student, resident, as an assistant
    - These 2 gentle people are assigned for the full week

    Day 2 Tuesday 7:30am
    - Leo will be sedated
    - CT scan will be done to image the tumor
    - If indistinct, then MRI will also be done
    - By the end of Tuesday, SRT (radiation) plan will be created

    Days 3-5 (Wed - Fri)
    - radiation each day, starting at 7:30am, and lots of waiting

    Pic from Monday 9/19- Leo tired from excitement and super high BG.
    .
     

    Attached Files:

  88. Sharon14

    Sharon14 Well-Known Member

    Joined:
    Aug 16, 2015
    I hate when they can't eat in the AM! Other than that, it sounds like things are going well. I like that you are assigned people that will be with Leo throughout the whole process. Continued good wishes.
     
  89. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Thanks Sharon and others who have helped me and Leo. I wish Leo could eat. His high BG makes him lethargic and kind of cranky. But he always purrs when I brush him. I hope the CT scan resolves his tumor tomorrow.
     
  90. julie & punkin (ga)

    julie & punkin (ga) Well-Known Member

    Joined:
    Feb 17, 2011
    I'm so sorry to be so late responding. We had a family friend pass away and things have been a bit crazy here. In any case, I'm glad you made it to CSU ok.

    Punkin also had a reduction almost immediately after the SRT - the numbers will guide you on what to do. Just be aware that some cats react soon after the SRT, some take longer. Your nadir checks will give you the information you need to be able to adjust the dose.

    Good luck tomorrow. I loved the folks at CSU - they were so competent and professional. I hope your experience is just as good and Leo does well with all of the radiations.
     
  91. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Leo and I are blessed. The CSU team is comprised of people that care. From the front desk, to the billing, to the vets and the interns. It is overwhelming to have such great people helping us. I don't know if they even realize how much this means to Theresa and I. And to Leo, they are saving his life. We are fortunate to have the funding to pay for it, to live in an age where the technology and people can treat him, and to live in a country where the treatment is available.

    From left to right, Radiation team:
    - Dr. Beatrix Jenei, Resident, Radiation Oncology
    - Dr. Carolynne Kruchman, Resident, Radiation Oncology
    - Dr. Lynn Griffin, Staff, Resident Radiologist
    - Dr. Tiffany Wormhoudt, Resident, Radiation Oncology
    - JJ

    Pic 2:
    - JJ and Sarah Von Mater, 4th year resident veterinarian - assigned to me and Leo all week
    and Leo's pituitary scan to the right

    I do not have a pic of Dr. Jacob Cauley, resident. But he is great as well.

    @julie & punkin (ga)
    Dr. Griffin is the staff full time radiologist. She treated Punkin. She said "Tell Julie Hi from Dr. Griffin".
     

    Attached Files:

    Last edited: Sep 20, 2016
    Madrona and Leda likes this.
  92. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Hi Julie - I am sorry to hear about your friend. Dr Griffin said to tel you "hi" !!!

    I will be going to California and Washington next week. Jennifer and I will handle my Mom's estate. Dr Griffin said typically the BG drops slowly after one or two weeks. Theresa will be handling Leo. And we have cell phones. After Oct 5, I will stay in Austin for ONE YEAR.
     
  93. JL and Chip

    JL and Chip Member

    Joined:
    Dec 28, 2009
    We're they able to see tumors on Leo's CT scan? Did they also do an MRI?

    Here's hoping tomorrow is smooth and uneventful.
     
  94. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Day 2 CSU
    Great news. Leo has a resolvable Pituitary Gland tumor. My sweet boy.
    Resolved via CT scan.
    His treatment options are great. SRT will start tomorrow (Wednesday 9/21/2016)
    Leo didn't like the anesthesia, but is eating like a pig. His BG is 400+ all day.

    Normal cat pituitary vs Leo's.
    normal = 3mm x 5mm
    Leo = 5mm x 10mm

    The growths are obvious even to me on the CT scan. The radiologist team, and the CSU team finds Leo very interesting because they don't get many Acro cats. The radiation will disrupt the tumor's DNA. Two or three mitosis cycles later, the tumor cells stop regenerating.

    Days 3,4,5 (Wed - Fri), 9/21/2016 - 9/23/2016
    SRT treatments

    Day 5 CSU (9/23/2016) - will depart for Amarillo, TX around noon. They are ensuring the schedule will allow our departure on Friday.

    Dr. Lynn Griffin is the resident staff radiologist. She had left CSU and is now back. It was an absolute pleasure to speak with someone who knows Acro in detail, and knows pituitary tumors in detail.

    Several pics. Some guy got in the way of the CSU entrance flower pic :)
     

    Attached Files:

  95. Madrona and Leda

    Madrona and Leda Well-Known Member

    Joined:
    May 4, 2016
    I'm so glad that your Leo is in such good hands! What a bright recovery he has ahead of him with you to look after him.
     
  96. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Hi JL - the MRI was not needed. Got lucky there. Thanks for the support.

    Dr. Griffin said to quit beating ourselves up over the tardy diagnosis and treatment. I guess everyone wishes they caught it and figured it out in month 1 or 2. Leo was diagnosed with diabetes in August 2015. Acro was very low level or non-existent just 12 months ago with him.
     
  97. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Someone asked me about hours at the clinic.

    Hours at the clinic.
    Mon - check in was 3-4 hours
    Tue - CT scan 7:30am - 2pm = 6.5 hrs
    Wed, Thur - SRT = 6-8 hours, start time is 7:30
    Fri - SRT = 4-5 hours, start time is 7:30. I asked for special first in line on Friday so I can drive home starting Friday. They think that is viable.
     
  98. julie & punkin (ga)

    julie & punkin (ga) Well-Known Member

    Joined:
    Feb 17, 2011
    Aw, thanks for passing along that message. I remember Dr. Griffin - she spent quite a bit of time with us. I think she's in our CSU pics as well - the ones in my signature line about the SRT. That whole team just exuded confidence and I was so grateful for their expertise.

    What does "resolvable" mean in this context? I know the word, just am not sure what is meant here. Punkin's tumor was big and very visible - and yet the SRT didn't completely kill the tumor. In the time that I've been here, I haven't seen any acro cats go completely OTJ after SRT. We sure hoped for it, but it didn't happen. I was still happy I'd done it anyway.

    One thing that you really need to keep on your radar is to watch for hypo thyroid. The radiation can kill the thyroid and then the cat can need thyroid replacement. We had regular thyroid tests done and thought it hadn't happened to punkin, but it turned out that we needed different thyroid tests to catch the low thyroid, not the standard ones. On the standard senior panel, the test results kept coming back as low normal. His hair was falling out and we'd lost regulation of his blood sugar, but the tests were still showing low normal. We finally figured out (with help from Marje on a phone call from the vet's exam room) that we needed a different break-down in the test. Those results came back extremely low. We started thyroid immediately, but that was just a short time before he died. I think his thyroid had been very low for quite a while and that had caused other problems. Thyroid hormones are involved in most every area of the body - they are extremely important and when they are off, everything else is affected.

    So consider yourself forewarned - stay on top of that. Here is the link to Punkin's lab page - you want to check:
    Free T4 (ng/dL)
    Free T4 (pmol/L)
    cTSH
    Notice on the lab column for 3/1/13, Punkin's T-4 still was showing 0.8 - the low end of normal, but with the new free T4 it was actually less than 0.3, practically nothing. That's how important those break-out tests are.
     
  99. JL and Chip

    JL and Chip Member

    Joined:
    Dec 28, 2009
    That's really interesting. I was just in communication with Dr. Griffin about Tubby and she mentioned the possibility of thyroid impact, though she said she's never made a cat go hypothyroid with SRT. I wonder if she knows about Punkin?

    I'm frequently surprised by how often the focus is on the Total T4 -- for both dogs and cats. A lot of things can affect that value. Michigan State does a detailed thyroid panel that is supposed to be very specific in evaluating thyroid function (last I knew they were the only ones in the country performing it). I sent blood out to them for a rescue dog a few years back and it was very enlightening.

    Dogs frequently develop hypothyroidism, but cats so rarely go hypothyroid naturally that it might be easy to overlook the symptoms. I'm really glad this topic came up!
     
    Last edited: Sep 21, 2016
  100. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    I think by "resolveable", it was obvious to them that the pituitary had grown outside the normal boundaries. I only had an hour with them yesterday. And today, I dropped him off. There will be a discussion with them today when I pick Leo up.

    That is a good heads up about the thyroid info. I will bring it up today.
     

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