Lily Newly Diagnosed Acrocat--Researching SRT in Yonkers, NY

Discussion in 'Acromegaly / IAA / Cushings Cats' started by jessdonof, Nov 26, 2013.

  1. jessdonof

    jessdonof New Member

    Joined:
    Nov 25, 2013
    Hi my name is Jessica. My cat Lily (just turned nine in August) was recently diagnosed with acromegaly after her blood work was sent to Michigan and her IGF-1 came back <500 (I don't have the exact number in front of me at the moment). As of yesterday she is on 5 units of Lantus twice a day (up from 4 units twice a day) and her urine glucose as been teetering between 1000 and 2000 on the on at home test strips. Ketones have been between negative and trace. The high glucose is really concerning, but our vet is careful to raise it slowly, so that's why it still hasn't gotten under control. Let me add that upon being diagnosed diabetic (Lily hasn't even been on insulin a month yet), we chose to pursue the IGF-1 test almost immediately because some of Lily's external features appeared larger and the vet had mentioned acro in passing. It was also alarming that Lily was initially diagnosed as an "early diabetic," but her numbers jumped from the 300 range to 2000 range in such a short period of time. As far as diet, Lily has been on Hill's m/d, but we are thinking of switching to Wellness Core Grain Free Indoor formula, since the protein and fat analyses seem comparable to Hill's m/d.

    Thanks to this forum I found out that the Veterinary Speciality Center in Yonkers, NY is performing SRT and is only a little over an hour drive from our home. We also researched another place in Clifton, NJ and while we could not get too much information over the phone, the also treat feline acromegaly. Our vet also let us know that another vet in NJ, Red Bank Animal Hospital, just got a brand new machine to perform precise radiation--we left a message for one of their doctors yesterday, but haven't heard back yet.

    I saw at least one person on this forum input their experience at Yonkers into a spreadsheet where some other folks who went to CSU provided their information for us, but I would love to be able to find some more people who have experience with the treatment at Yonkers. We got in contact with Dr. Berg, one of the co-founders at Yonkers and he was very helpful. Our next step is to pursue an preliminary echocardiogram and a sonogram of the abdomen at our regular vet, before heading to Yonkers for CT/MRI testing.

    This forum has been a saving grace and a source of hope for my family and Lily. I requested to join the Facebook group a few days ago too--I don't think I've been approved yet, but I'm looking forward to talking to and sharing knowledge and experience with other owners of acrocats.
     
  2. Wendy&Neko

    Wendy&Neko Well-Known Member

    Joined:
    Feb 28, 2012
    Re: Lily Newly Diagnosed Acrocat--Researching SRT in Yonkers

    Hello Jessica and welcome to you and your acrocat Lily. This particular forum is fairly quiet - the active acrocats on FDMB mostly post on the Lantus - Tight Regulation Forum and it along with the Health Forum are the most active if you want answers quickly.

    Good for you for considering SRT for Lily. As someone who has gone through it, I think it's great if you can afford the time and money to do so. You will find that most people who have had SRT have gone to CSU, for cost reasons. We had our SRT at CSU as well, for both cost and proximity reasons. We could drive to CSU, although it was 3 long days. I have heard good things about Yonkers however. One of our local veterinary oncologists is on their planning board, and I have great respect for her. There is also quite a difference between simple radiation and stereotactic radiation therapy, also called radiosurgery. The SRT machine has the radiation beams on a gantry and the beams of radiation come in from 7 different angles, reducing the effect of radiation on the non tumor tissue. Most other radiation machines are fixed beam.

    Getting an echocardiogram is an excellent idea. Even if Lily has no visible changes now, it's good to get a baseline.

    There are a couple things that people will recommend to help get Lily better regulated. The first is low carb wet food. It does not have to be veterinary food. In fact, a lot of off the shelf cat foods use better ingredients than the veterinary ones which contain a lot of liver. There is an excellent website on feline nutrition http://www.catinfo.org and a list of analysis of commercial foods. Anything with carb % below 10% is suitable for diabetics. However, I wouldn't recommend changing her diet unless you are monitoring her blood sugar, as changing from high carb dry food to low carb wet food can make quite a different in blood sugar.

    The other thing we recommend is home blood testing Lily if you aren't doing it already. It will help you find the dose that is best for Lily both before and after SRT and save the cost/stress of regular vet visits for glucose testing. And most importantly, testing before giving insulin will tell you if it's even safe to give insulin. If Lily does have SRT, her needs for insulin will drop at some point. Doing blood testing yourself is the best way to respond to her changing insulin needs. There are lots of tips on our Feline Health forum, or you can post there for help on testing at home if you wish to start.

    Depending on glucose testing, we raise doses by .25U or .5U at a time, so as to not miss the good dose. One unit increments are typically only done once the cat is over 10 units of insulin. My Neko got up to 8.75 units before her SRT and she is now reasonably well regulated at 1.25 unit.

    Good luck with your research results and getting Lily better regulated.
     
  3. julie & punkin (ga)

    julie & punkin (ga) Well-Known Member

    Joined:
    Feb 17, 2011
    Re: Lily Newly Diagnosed Acrocat--Researching SRT in Yonkers

    hi jessica!

    i also had a cat with acromegaly - punkin. sweetest cat ever - he passed away this past May. we had his SRT done at CSU mostly because they initiated the treatment and at the point where we had it done, were one of only 2 hospitals in the US that did the SRT. We had good results from it, although punkin didn't go off of insulin. he had a high of 15.5u (we also posted and received guidance on the Lantus/Lev TR insulin support group rather than here or on the facebook group) and got down to 4ish units. he had a lot of other things going on - and i would say that sooner treatment is better than later. the damage the growth hormones do to the body is mostly, although not all, permanent. i posted in this forum about his treatment and there is a link in my signature about it as well.

    i was glad we had it done.

    i'd agree with all the advice Wendy has given you - better food with lower carbs is available. i would also second her advice about hometesting. cat's blood sugar can fluctuate wildly and if you are hometesting you will be able to help him better, not to mention just keeping him safe.

    There are several cats with acro whose people post on the Lantus/Lev TR forum, so you will find good company there and a variety of people with extensive experience to help guide you.

    let us know how we can help!
     
  4. Blue

    Blue Well-Known Member

    Joined:
    Dec 28, 2009
    Re: Lily Newly Diagnosed Acrocat--Researching SRT in Yonkers


    Hi Jessica,
    I have just looked again and I do not see your application to join the Feline Acromegaly group on Facebook.
    We currently have 123 members in the group, so if you can apply, I'll approve you promptly.

    As far as going with the CT/MRI testing at Yonkers, I believe you may want to talk to one of our members whose cat Sooty went to Yonkers for SRT and has been off insulin for some time now.

    I think you will want to be testing her blood as opposed to urine.

    The feline acro group on Facebook has a great deal of info that our acro owners have gathered and shared in documents which you can see.

    Two of my cats tested positive for acromegaly and one also tested positive for IAA. Did you also test Lily for IAA?

    I look forward to your joining the other acro owners in the group on Facebook.

    Gayle
     
  5. jessdonof

    jessdonof New Member

    Joined:
    Nov 25, 2013
    Re: Lily Newly Diagnosed Acrocat--Researching SRT in Yonkers

    Thank you, thank you, thank you so much Wendy, Julie, and Gayle. I can't even begin to describe how thankful I am for stumbling upon this amazing community of people. Just when I thought internet searching medical conditions/symptoms is always certain to be a bad thing, finding this message board and the Facebook group has proved the complete opposite.

    We are definitely looking to get off of the Hill's m/d and transition to a different low card wet food that can be bought in the store. Today Lily tested for the first time in the 500 range for glucose (urine test trips) being on the 5 units of Lantus twice a day. Does anyone have a recommendation of an at home blood glucose meter? I remember reading that there are animal specific devices, as well as human ones that are compatible with animals, is one better for cats than the other?

    I've seen IAA on the message board and actually was wondering more about that diagnosis if it's something common in acrocats. If testing Lily yields positive results is there medicine I can then give her to help or certain supportive care in addition to the regular regiment now that I can provide?

    It looks like I'm now a member of the Facebook group, too--so thank you for accepting into your community. Just one last thing for this post (I'm also going to post this in the Facebook group)...

    While researching SRT in Yonkers, Lily's primary vet suggested we call a local speciality center called Red Bank Veterinary Hospital in New Jersey, because she recently went to a presentation about a brand new machine they got for radiation. After leaving a message for Red Bank we received all of the promising information from Yonkers. I was telling myself that I'm sure Red Bank wouldn't end up panning out unless by some rare fate they had a new doctor from CSU or something crazy like that...

    Well, last night we received a callback from the doctor at Red bank, Dr. Dustin Lewis who did his residency in oncology at CSU from 2011-2012 and has tons of experience performing both SRT and fractionated radiation on acrobats at CSU. He even said that he told Red Bank he was going only going to take their job offer in radiation oncology if they got a certain machine. He said the setup is just like the setup at CSU. This seems like very new information since Dr. Lewis just came to Red Bank in 2013. After receiving this information my first thought was sharing an update with you guys and to get your insight on something Dr. Lewis said. Dr. Lewis said the machine delivers the same precision of radiation for SRT and for fractionated radiation, and that SRT is 3 treatments for about $5500, whereas fractionated radiation is 20 treatments over for weeks for about $7200. He said that at CSU many people are traveling and the 3 treatments is the way a lot of folks go, but he also seemed to speak highly of the 20 treatments saying he has measured longterm success with this course of treatment and that small doses of radiation isn't a bad thing. I guess since we live locally he figured this was a feasible option. My big, big, big concern is the repeated anesthesia over the course of 20 treatments. Dr. Lewis said it's a safe kind of anesthesia, but didn't get into specifics. We like that Dr. Lewis came from CSU and he provided so much knowledge and experience, over an hour on the phone, plus Red Bank is closer to us than Yonkers and Lily doesn't do well in the car (she usually has to take medicine otherwise she breathes funny with her tongue hanging out of her mouth). Now we are left with the big question of 3 treatments or 20 over four weeks (M-F for four weeks with breaks on the weekend)...
     
  6. Wendy&Neko

    Wendy&Neko Well-Known Member

    Joined:
    Feb 28, 2012
    Re: Lily Newly Diagnosed Acrocat--Researching SRT in Yonkers

    Hello again Jessica. For blood testing, you can use any of the human meters. For Lantus, we use a protocol that uses different numbers, depending on whether a pet or human meter is used, so no need for a pet specific meter. The big advantage of human meters is that the test strips are WAY cheaper and can be purchased at almost any time. No need to wait for the vet office to open or the mail to arrive. A lot of people here used the Relion models available at Walmart, because the strips are quite cheap and Walmarts are often open late. We also have a shopping partner, American Diabetes Wholesale that sells strips at a good price, and a percentage of the sale goes to support this site. Here is a Consumer Report on Blood Glucose Meters. Another thing you want to consider is getting one that needs a smal blood drop size. I use a Relion Confirm because it needs just a .3 blood drop and strips are a good price.

    Here is document on blood testing tips, including links to several videos.

    Neko also has IAA in addition to her acromegaly. I'm not sure what percent of cats have both together, but in any case, treating the acromegaly is more important than the IAA. I've heard that IAA can go away over time, and Neko doesn't seem to be showing any signs of it now. If a cat has IAA, it can change how people approach dosing - in that you want to more aggressively increase the dose to get the cat into good numbers. But you have to be doing home blood tests first. And there are no medications or other treatments.

    Red Bank does have a good reputation as a veterinary clinic. However, I was glad to get the treatments over and done with at CSU. There is one day of anesthesia for CT scans to measure (and confirm) the tumor and get measurements for planning the radiation, then 3 days of anesthesia and radiation. The last three days the anesthesia was for a very short period of time. The first day was the longest. Each day Neko got 7 fractions for a total of 21.

    I thought the trip was going to be horrible. Neko was not a good traveler and here we were planning a three days each way trip with 8-9 hours on the road and and 9 days of hotel stay. With a cat that used to complain for the 10 minutes it took to get to the vet. We survived and she's a much better traveler now than she used to be. If you do decide to travel with Lily, a couple of people have written documents on how to travel with a diabetic cat and we can share those with you.

    Has Lily had anesthesia before? Neko had a dental a couple months before her SRT, so I had a pretty good idea of how she'd handle the anesthesia. They have anesthesia specialists at CSU and I'm sure they do at Yonkers as well. Dr. Lewis probably has the latest info too.

    BTW, the cost at CSU was a little under $4000 for us but of course you have to add travel and hotel costs and it depends on the situation of the cat. Some cats have heart conditions or may need extra care that add costs. CSU is a veterinary teaching hospital and they often have studies on that pay for some of the procedures. For example, if Neko had needed an MRI (if they couldn't find the tumor on the CT scan), it would have been free at the time as they were doing a study on MRI data.
     
  7. julie & punkin (ga)

    julie & punkin (ga) Well-Known Member

    Joined:
    Feb 17, 2011
    Re: Lily Newly Diagnosed Acrocat--Researching SRT in Yonkers

    we also travelled to CSU from Oregon, so had the same schedule wendy had - 1 day of testing and 3 days of radiation. i would be afraid of all the anesthesia so would probably opt for it rather than 20 treatments. that is a lot of anesthesia risk, in my mind.

    Most people here recommend getting both the iaa and the acro done at the same time. punkin had 7% iaa, which is nothing. 10% and up is considered a diagnosis of iaa. some cats have both, some have just one. acro seems to be more common than iaa.

    i wonder if dr lewis was at CSU when we were there. we didn't work with him, but we went in summer 2011.

    Wendy has answered the rest of your questions, i think, so i won't repeat. hometesting is easy once you get the hang of it. the firs 2 weeks are more tricky because the ears don't bleed readily at first. they will grow more capillaries as they are poked, so hang in there and don't get discouraged. they will get so they bleed every time after a short while.

    the breathing with her mouth open is a symptom of anxiety.

    when you change Lily's food to low carb canned food, you really want to be hometesting her blood because her insulin needs will likely go down dramatically. you don't want to overdose her unknowingly.

    not sure if you looked at the link in my sig line about the SRT, but it links to all the posts i did on it at the time: Punkin's SRT Adventure

    keep asking whatever else is on your mind. we're glad to help!
     
  8. jessdonof

    jessdonof New Member

    Joined:
    Nov 25, 2013
    Re: Lily Newly Diagnosed Acrocat--Researching SRT in Yonkers

    Thanks again, Wendy and Julie.

    Lily has had sonograms of the belly before, so I think she was given something in order to undergo the test. It's slipping my mind if it would have been anesthesia or if there is another option that sedates them for those tests. Dr. Lewis made it seem like the anesthesia wasn't a concern for the 20 treats, but clearly I am VERY concerned. I'm wondering if it could be a nontraditional or safer anesthesia. I have lots more questions for when we met with him next Wednesday for a consultation. On Red Bank's website it says that they use a linear accelerator and someone in the Facebook group confirmed that that is the same type used at CSU.

    Were Neko and Punkin's glucose levels under control during their treatment? Like I mentioned, Lily is still testing in the 500 range on the 5 units of Lantus. We would like to get the procedure done as soon as possible, but I wonder if having the glucose under control would make a difference or not.

    Thanks again for sharing your stories and knowledge with someone pretty know to all of this :)
     
  9. julie & punkin (ga)

    julie & punkin (ga) Well-Known Member

    Joined:
    Feb 17, 2011
    Re: Lily Newly Diagnosed Acrocat--Researching SRT in Yonkers

    no, punkin's numbers were not under control. they weren't really under control after the SRT either. our high dose was 15.5u and they had us give him 1/2 doses prior to the procedure each day. i don't think they would or could expect you to have them under control before the procedure, because that's one of the features of acromegaly. you can't get them well-controlled.

    however, i've never done the urine testing so don't know how that scale compares to blood testing. in blood testing, renal threshold (the upper limit at which the kidneys begin to be damaged) is somewhere around 200-250ish in a cat (seems to vary individually) so if you could get his numbers below that range most of the time his body will be better off. 5u isn't a big dose for a cat with acro. in fact, there are cats that aren't diagnosed that have larger doses than that.

    we use a spreadsheet to track the BGs and to give good advice on adjusting dose. the spreadsheet is an essential tool and we learn to read it to see what's going on in the cat's body. if you go to the Lantus TR ISG, top of the page where Wendy linked is a yellow-starred-sticky that says "New to the Group." that has lots of great info on it and the instructions for getting a spreadsheet going and linking it to your signature line are in there. One of the benefits to posting on FDMB is that people giving you advice can see what others have said, can see your cat's story in a profile (also attached to your signature), can see the spreadsheet so read what's going on in your kitty. it improves the quality of the advice.

    i was pretty worried about the anesthesia and talked about it quite a bit before and on the first day or two of the time we were in Colorado. punkin had vomited with earlier anesthesias but didn't at all with CSU. it's all on those posts that i linked on the last post. it's a reasonable fear because cats can have problems with it. there are pics of the equipment and day by day stories of our experience. i hope you'll look at it - it will answer a lot of your questions.
     
  10. jessdonof

    jessdonof New Member

    Joined:
    Nov 25, 2013
    Re: Lily Newly Diagnosed Acrocat--Researching SRT in Yonkers

    I just wanted check-in and share an update on Lily...

    Lily completed SRT on January 8th and is doing well! She had her treatment done at Red Bank Veterinary Hospital in New Jersey (anyone reading this and considering SRT on the east coast, please don't hesitate to contact me for information!) with 6Gy in 5 fractions for a total of 30Gy. Back in November when we had her IGF-1 tested it was 533. When she went for her pre-SRT CT scan her tumor was 1.68 cubic centimeters, which Dr. Lewis said was on the big side! Treatment came to about $5,600 total and we had a really positive experience.

    A few days before the start of SRT Lily wasn't doing too well and made a couple of trips to the vet-- she wasn't really eating and was really lethargic and out of it. After a couple of trips to the vet and fluids, anti-nausea shot, and appetite stimulate, she got back to normal right before SRT started! It was a really scary time though because we were so close to treatment and finally getting her help and then she had a small setback, but luckily everything worked out and she started feeling better and was able to go in for her treatment as planned.

    Lily is going for a follow-up with Dr. Lewis on February 5th and he said if we want we can do a CT scan in six months to see if the tumor has shrunk. He said we may see insulin reduction in 3-4 months. Currently she's on 18u of Lantus twice a day. Her diet consists of Friskies Special Diet and we try to keep her under 4 cans, but if it was up to her she would have much more than that!

    Well, I just wanted to check in with you guys (especially Wendy and Julie since you ladies were so helpful when I first came on FDMB and started this thread) and give you an update on Lily. I spend a lot of time on the Feline Acromegaly Facebook group and I posted some documents from Lily's SRT under the files section of the group (treatment estimate, four images of her tumor, and her discharge notes). You can view those files here too: https://drive.google.com/file/d/0B3F0yr ... sp=sharing
     
  11. BJM

    BJM Well-Known Member

    Joined:
    Oct 6, 2010
    Re: Lily Newly Diagnosed Acrocat--Researching SRT in Yonkers

    Congratulations!
     
  12. julie & punkin (ga)

    julie & punkin (ga) Well-Known Member

    Joined:
    Feb 17, 2011
    Re: Lily Newly Diagnosed Acrocat--Researching SRT in Yonkers

    wow, what an adventure! glad you were able to get her treated.

    The only thing I would say is that Punkin's response was nearly immediate. We saw the first decreased dose within days after the treatment - no way it took months. You're home testing, so just be aware of that possibility.

    i hope you'll let us know how things go. Hope you have smooth sailing ahead! :D
     
  13. Wendy&Neko

    Wendy&Neko Well-Known Member

    Joined:
    Feb 28, 2012
    Re: Lily Newly Diagnosed Acrocat--Researching SRT in Yonkers

    Congratulation on Lily's treatment. I'm glad you were able to get things done close to home. I hope everything works out well for you.

    I want to second Julie's comment that sometimes changes can be seen right away. Neko was at 8.5 units during her SRT treatment and a month later was down to 5 units. We were doing reductions the week we got home. But I've seen some other cats that had to continue going up for a while before things turned around and the dose went down.
     
  14. Donna F

    Donna F New Member

    Joined:
    Feb 15, 2015
    I live in Yonkers and have a diabetic cat would you be so kind to give me the address of that Yonkers vet u went to thank you Donna F
     
  15. Megan & Oren

    Megan & Oren Member

    Joined:
    Jan 30, 2015
    I believe I've found another location that does the SRT: North Carolina State University: http://www.ncstatevets.org/radiationoncology/. I am still trying to get my tests scheduled for Oren (vet hassles due to scheduling, availability etc, not reluctance to do it). So i haven't contacted them directly. But for those in the Mid-atlantic east coast, this might expand options from Yonkers and FL.
     
  16. julie & punkin (ga)

    julie & punkin (ga) Well-Known Member

    Joined:
    Feb 17, 2011
    Yes, N. Carolina does it - Dr. Katherine Lunn, who started the program treating acros at Colorado State University, moved to N. Carolina State Univ about 2-3 years ago and is working on it there now.
     
  17. Bronx's dad

    Bronx's dad Well-Known Member

    Joined:
    Nov 30, 2016
    I know this is an old thread but am wondering if there is any updated info of SRT in the Jersey area. Had no idea Yonkers & Red Bank performed this treatment? Also had no idea there is a FB group, good info over there? How did it work out for Jessica & Lily? Thanks!
     
    Last edited: Jan 16, 2017
  18. Wendy&Neko

    Wendy&Neko Well-Known Member

    Joined:
    Feb 28, 2012

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