Guess I'm one of you now.

Not an exclusive club I really wanted to be part of, but here I am... and I'm glad to not be alone. OK... hold my hand... what do I do? What are my options for treating my 15 year old girl? tell me more about SRT.... what is the proceedure like? what effects on the cat? what is the cost like?

I'm in NJ. Do any of you know of a place they would recommend to find out more? I saw there was a vetrinary oncology place in Clifton NJ... I wonder if they do this proceedure

 

Janet I’m so sorry about the result, but at least you know and can decide on a plan. I’ll tag @Olive & Paula to tell you about cabergoline and @Wendy&Neko for info on treatments. There have been a few kitties that had SRT recently and will know about the costs, I’m sure Wendy and Paula know who they are.

 

Oh wonderful, ty. I've suspected this was the case for the past year... at least now I know. Overall she's a happy girl so until she tells me differently I want to do what I can for her. I'm understandable concerned about cost and want to make sure I'm not putting her through something that will do more harm then good. ugh. It also explains her HUG pot belly.... I know she's an eater, but it's excessive, ya know?

 

Oh Janet, I'm so sorry to hear about CC's acro diagnosis. I had also suspected after her IAA test was negative. Like you said though, now you know. I can't help much with the acro, as Lou's an IAA-only kitty, but there is a lot of info floating around on this board, including recent surgeries and cabergoline usage. I know it's going to be a lot to take in. One of the kitties on the L&L board was just diagnosed acro, so there's been some discussions/information on his recent threads. I'll give you the links to review what Paula, Wendy, and others have said while you wait for them to stop by.

Biscuit's Diagnosis Thread - 5/6/19
Biscuit's Thread Day 2 after Diagnosis - Further discussion about caber (from Paula) and examples of some acro kitties' SSs who weren't treated - 5/7/19

Many hugs to you and scritches for CC!

 

Yes, Colin had that belly too, and a voracious appetite. You’re doing a great job with the diabetes part. I know at one point you considered a switch to Lantus. I think most acrocats use levemir, so you may want to research that too.

 

Of course I need to switch, you know why? Because I just ordered 4 boxes of u40 syringes. Lmao

 

Sorry you had to join our not so exclusive club.

Pail had @Bronx's dad treated in New Jersey a couple years ago at Redbank. Places tend to offer 1, 3, or 5 day treatment options. Less days means less anesthesia (good if kitty has a sketchy heart or kidneys), but int neither of beam is stronger. Last I heard , if they still offer it, Washington State University was the cheapest by far. Otherwise you are getting close to five digits for treatment now. Hypophysectomy surgery is in New York, so not a bad distance. There are threads here about the surgery you can read. We had three do it last fall, two as part of a donor program which made it much cheaper, the other in London. Cabergoline is the cheapest medical treatment, with mixed results but we have had three go OTJ. Long term effects are unknown cause it is so new.

I had SRT down twice, the tumour came back after three years. That is rare, only two kitties I know of had it done twice, Neko as first. It can take two years for the treatment to take full effect, but Neko saw changes within two weeks, actually got dose reductions on the way home. Side effects are minimal. Like any treatment, you do have to be on you toes with testing, changes can come quickly then slow, then quick...... A lot of the symptoms went away, but not the arthritis and some soft tissue growth. She never went OTJ but her dose was below 1 unit.

First priority is to try to get her under renal threshold as much as possible. Many acrokitties do better on Levemir.

How is your girl’s heart? Heart issues are common and can limit treatment options. How long do you think she has been acro? Neko did not have a belly but did have the appetite.

 

She had an ultrasound of her heart last year and it was OK then. I suspect the acro is what got her out of remission. So that was August 2017 but the numbers didn't start really going up until 2018.

 

How much did the srt cost?

 

Costs of SRT changed at CSU from $4000 the first time to $8000 three years later. The second time actually cost me less cause we did just one dose of radiation instead of three, due to her heart. Costs vary based on days of radiation. There is one day of anesthesia where they do a CT scan and measure the tumour, to map the SRT radiation rays. After that there is 1-5 days of radiation, depending where and the cat.

Royal Veterinary College, who discovered that one in four diabetic cats are acro, found some on 1 unit of insulin. Size of dose isn’t really an indicator other than if it gets high then you know to test.

 

Sorry about the dx. What was the IGF value?

In the link above that is in Biscuits thread, it has a very short description of the treatments.

I considered all treatments. Spoke with Dr who does the removal. I just didn't like the vibe I got and thought it was to risky for Olive. I know others don't like the FB Acro group, however, I read posts on how they were doing with whatever treatment they chose. The good the bad and everything in between just so I knew what was in store.

Wendy mention a few who had removal surgery and it was successful. I keep thinking of Shmee who had it, it was successful but Shmee had a quite a personality change which I had never read or heard about being a side effect. Something to keep in mind.

On the pot belly, here is a quick snap I just took of Ollie while she is begging for food yet again. I have her a lion cut (or attempted one) and her fur is starting to grow in now and she was on the move so I'm not sure if picture is doing justice. She has got a solid thick middle.

 

Wow. Yeah I don't think I could spend 8 k

I'll investigate cabergoline

 

Ok just literally got the email with the results. 302 is the number.

 

Lol. Ccs belly is even bigger. She's like a lot bellied pig. Lol

 

I get cabergoline from WedgeWood Pharmacy. I get suspension that is almond oil based. Does not need refrigeration and shelf life is a few months (at least the date is made and use by date is 4 months later). And they can flavor it. They send me 20 ml bottle and It lasts me about 4 weeks (my vet orders it at a higher dose than I give so it lasts longer for me). Since there isn't a lot of guidance (studies) in using it, my vet and I raise the dose when her symptoms start up and stay constant for one week. Whether that's good or bad who knows but it works for Ollie.

Forgot to say it costs $127 for the 20 ml bottle.

 

Olive use to be bigger even with all her fur. It has gone down.

 

I'll try to remember to take an unflattering pic of cc tomorrow. Lol

 

Oh! I do have this one of the cats laying on the awesome mothers day coloring book my son is working on. Cc is the beached whale in the back. Lol

 

I think you can use a conversion chart and use the u40s.

 

You win on that picture.

 

That's true. At these high doses it would look like a lot less in a u 40 syringe! Lol. If only be shooting like 4.6 if the dose is 11.5. Ha

 

Growth hormone and IGF-1 are components in muscle growth. Acros tend to be like little football players.

SRT cost a lost less at Washington State U, but you also have to factor costs of travel and hotels. I was choked when they quoted me double the price three years later for three days of radiation. And sort of happy we got away with a few thou less with one day of treatment, North Carolina State U also does the single day of radiation. CSU didn’t used to, until Neko. She liked being first at things.

It would be interesting to hear how Shmee is doing now. John posted recently that Titan is getting his personality back.

 

The lab report said her groh was 302

Is that really bad?

 

I feel like I'm letting her down if I don't try srt but I just don't think I can justify using most of our savings. I'm feeling just horrible. I wish I never knew the results. Now I can't sleep just thinking im awful and selfish if I don't try to help her. And awful and selfish to my family if I do.

 

You will not be letting CC down if you can’t swing the SRT. Janet, you have been and are, one of the best cat moms on this site. CC is lucky to have you! It’s sad, I know because I’ve been through it, but I know you’ll take great care of CC and she will have a great life however long. Colin lived for a few years after diagnosis with no special care at all since I couldn’t even afford the cardiologist, but I really think he was happy until the end, and CC will be too. From hearing in your posts about your vet, you will have great support and more resources than I have down here.(I don’t think my vet even believes in acro, still!). Check out the cabergoline, but mostly just keep taking great care of CC, get the BG down best you can, and keep an eye out for the other complications of acro and CC will have a great life. Remember she doesn’t know she has acro, she’s the same girl she was before dx. Hugs for you, your partner, your son, and CC

 

Didn't know Titan had personality change. I saw people in the stickie thread who posted their results but have not been back since. I wonder what any of them had done.

@JanetNJ

You are not horrible if you don't do treatment. I chose not to do SRT and removal surgery for personal reason more than anything else. Add the cost of airfare and hotel, I couldn't justify it. Also if closer to me travel time and hotels the same thing. NY would have been a 6 hr found trip by car everyday and into the city and I do not go to NYC for any reason. That's just to long of car ride for me since driving at night is an issue. A big factor was no way would husband be on board with it. So next thing was to come out of retirement and pay for the meds. It's less than a car payment. Thank goodness our cars are newer so we don't have to worry about needing another anytime soon. We run them to the ground (16-17 yrs). Olive certainly hasn't gone down much on insulin and may never get to a much lower dose. But it is keeping her from going higher in dose and more importantly she is much more comfortable. I just wish there was more guidance on dosing it. We (vet & I) are winging it. I do have to contact the Dr Paul told me about and see what thoughts he might have but need to get my timeline in order first and I'm working on that. You don't have to make a decision today (it was 4 months and 4 vets before I could even find a Dr who would try caber). Think about everything involved and you will make a choice of what is best for you and CC and no one here will judge you.

Hang in there. Acro isn't as bad as some other conditions where there is no hope or treatment available if you want it.

 

Hi Janet. So sorry for the acro dx

Bronx had SRT at Red Bank by Dr Lewis (in Tinton Falls) which was about $7100 with 5 days/4nites of boarding back in May of 2017. That was before surgery to remove the gland/tumor was being done in by Dr McCue at AMC in NYC which is about $3500 if donation funds are still avail, which they prob are. Much more invasive though. And there is always Cabergoline that will run about $100/mo.

Dr Lewis: https://www.rbvh.net/staff/staff.html/s/44/Dustin-Lewis-DVM-MBA-MS-Diplomate-ACVR-(RO)

Dr McCue https://www.amcny.org/about-amc/veterinarians-specialist/john-mccue-dvm-dacvim-saim-neurology#

 

They do not. I am in Bergen Co, the closest place that does it is in Yonkers and got a quote for $12-13K . But I believe their machine does Cyberknife which is more precise than SRT.

I went with SRT at Red Bank, they got a new machine in May of 2017 and Bronx was prob the first kitty on it.

 

Dr McCue will call you and explain it, answer any questions you might have. I sent an email with all of Olive's test results and ultra sound reports. Olive also has an abdominal mass which made her more risky (at least in my book). I just didn't get a good vibe. I won't go into it here, if anyone wants specifics you are welcome to pm me.

 

Hi Paul... I didn't know you were in bergen county... I'm in Bergen County as well. Hi neighbor. I didn't realize they needed to board the cat to do the radiation. how many treatments did your cat need?

 

the clifton petcure place has something about srt on their webpage... unless they don't offer it at all locations. https://petcureoncology.com/petcure-oncology-treatment/

 

I love that pic of your kittehs. C.C. is huge! No one could report you for underfeeding! I bet C.C. is a nice bed-warmer in winter.

Leo had a pot gut at the height of his Acro too. As others have said, Acro isn't the end. C.C. has options.

I think the last time this forum looked at Washington State (WSU) we couldn't find their SRT plan listed, so they may have dropped it.

Hugs to you and your sweet kittehs. I know just how this diagnosis feels.

 

Hello neighbor! Elmwood Pk here. He didn't have to be boarded but I was away for training that week down in GA, so it worked out well. He had 5 days of treatment. I didn't know Clifton offered SRT. Dr Lewis was trained by the best in Colorado St University on their machine so I was very comfortable with him.

 

North Arlington. . Oh ok that makes sense as to why he was boarded.

What is the difference between srs and srt radiation?

This is the reply I got back from the place in Clifton. :::

----------/-----------------------------/
Dear Janet,
Thanks for reaching out to PetCure Oncology. I'm so sorry to hear about C.C. I am personally committed to do all I can to help you and C.C. during this challenging time, and to get you the information you need just as quickly as possible. You mentioned that C.C was tested for acromegaly, was this done via blood testing or has she had any advanced imaging as well? If there is a Tumor affecting the Pituitary Gland which is causing the acromegaly then SRS radiation could potentially be used as a treatment. In order to diagnose a tumor affecting the Pituitary Gland typically and MRI or CT scan is performed. Our Clifton site has this imaging available however C.C. will need to be referred over there for this imaging.

To get you the right information, it would be best if I could speak with you for a few minutes about C.C. I am happy to call you at a time that is convenient for you, or please feel free to call me at 1-833-PET-HERO (1-833-738-4376) at any time If for some reason I am unavailable to take your call, please leave a message and I or another Pet Advocate will promptly call you back. If you’d prefer to discuss C.C’s options by email, just reply to this email.

I’d like to provide you with a couple links that share how we help pets using radiation therapy every day at PetCure Oncology. You can learn more about our specialty, stereotactic radiosurgery (SRS), by clicking here. You can also learn more about other forms of pet cancer care by clicking here.

Lastly, I’d like to share our Pet Hero page where you can read success stories for many different pets with a variety of cancer types.

Again, thanks for reaching out. Please don't hesitate to let me know how I can best assist both you and C.C.

Sincerely,


Jenn Gredlein, CVT PET ADVOCATE
PETCURE ONCOLOGY
PHONE: 1-833-738-4376
EMAIL: JGredlein@PetCureOncology.com
WEBSITE: PetCureOncology.com
Wondering how we help pets with cancer? Watch this videofor the short answer.
00Q1P00000qkSmi
Subscribe to our e-newsletter for regular updates from PetCure Oncology.

 

Hi Janet

Those are the same treatments (SRS/SRT). Different names for same treatment. If you watch their actual video (not the animated one), at the 30 second mark they show the SRT machine. It is a Varian Trilogy unit.
https://petcureoncology.com/stereotactic-radiosurgery/pet-cancer-types-and-treatment-options/

If you look at Leo's flickr album, go about 5/8 down. You will see some of the CSU team in front of the exact same model - Varian Trilogy. CSU calls it SRT (stereotactic radiation therapy). They told me it is a $5Million unit, not including maintenance and updates.
https://www.flickr.com/photos/13779628@N05/albums/72157670996705412

I took that picture. On the right (in the pic), that is Dr. Tiffany Wormhoudt. She was assigned to Leo for the SRT configuration and treatment. He had 3 SRT treatments (one per day, 3 days in a row).

The PetCureOncology video is actually quite good. And they are correct - the radiation is targeted with millimeter precision. Leo would be gone by now if it was not for SRT. A modern miracle treatment, albeit expensive.

 

Did the 7100 include the mri/CT scan?

 

Yes it did. I chose not to do an U/S of the heart since x-ray showed only mild enlargement in one of the quadrants.

 

that's not really a horrible price. esp since a few hundred were probably boarding costs as well. I'm going to look into it more. I hope we didn't wait too long. I wish we had done this a year ago. I hope she hasn't progressed too far.

 

I had the same wishes - and felt that I waited too long for Leo. His insulin demand was pretty high by the time I got him the SRT. But you can see his chart today. He is having other issues now, but the SRT was effective in managing the Acro symptoms.

Cabergoline is still more affordable and may work well for C.C.

 

I wish I caught it sooner too with Bronx. He had an awkward gait early on and I just though he was getting arthritis at an abnormally young age. Now he walks on his front hocks and can't go far before laying down . Yes, definitely call Dr Lewis. The place is top notch. What vet do you use now?

 

I’ll call both red bank and Clifton for an estimate. I am leaning toward Clifton if I can scrape together money and convince my family..... just because it’s literally 15 min away rather than an hour away. CC is a bit stiff, and sometimes limps, but is not on her hocks. We use Rutherford Animal Hospital. It's really going to depend on the price.

 

so the clifton location said that they estimate it will be 9-11K.... Out of my range. I'm going to try to get in touch with red bank tomorrow. There's a place in tinton Falls as well.

 

Red Bank has a few locations, they do the SRT in Tinton Falls.

 

Ohhh I see. It's not called the same thing though

 

Ugh. Hypo this morning. Guess the tumor is taking the morning off. Lots of honey and hc kibble/gravy. Had to call in late to work. I hate this

 

Damn tumor. Makes it harder than it already is
Have you had a chance to talk to Red Bank about the SRT?

 

Yeah they said 8 k

 

Ouch! Not sure what your budget is, but does that include everything? Did they happen to mention the success rate?

 

It includes a CT scan. He said success rate around 80%. But 8 k is nothing to sneeze at.

No surprise big bounce tonight.

 

Sorry to see the hypo today, but you are somewhat used to them. Leo was big time bouncy during peak Acro. And somewhat stable months after SRT. But one could hardly call his BG stable even long after SRT.

I like the "party mix" for the 5/17 hypo method to increase BG.

Not surprised at the $8k SRT price. They have to recoup the cost of that expensive machine. We were all surprised at the WSU price last year, but it seems that was a very short term offering (maybe 6 - 8 months).

Hugs to you Janet. I know how hard these diagnoses are.

 

Party mix usually does the trick. I know I probably over compansated but I didn't have time to gradually get her numbers up .. Had to get it up to get to school... Another teacher covered my first class. I have an hour for lunch and a 30 min commute. I drove home, tested her, and jumped back in the car. My class was waiting outside my door when I got there. Stressful day yesterday.

 

Wow, that is indeed stressful. Totally agree with the approach to "sugar them up" if you can't be there. We sure go through a lot for our sugar kittehs.

 

She's bouncing hard today. But looks super cute. Current position:

 

Ok.... So interesting preshot tonight... 186. I can of course stall. What do you guys think??

 

An hour later she's still190

 

Definitely needs some. Are you still on prozinc?

 

oh I know she needs some. I'm wondering how much. 12 will be too much most likely. she hypoed the other day on a similar amount with this kind of preshot. I'm thinking 8? 9? 10? lol yes on prozinc

 

Okay so no depot to consider. As long as you are home and can monitor closely, I'm inclined to say 10. I'M NOT FAMILIAR WITH PROZINC THOUGH. You want to keep the glucoses down. Try to stay ahead of the acro but I think that's impossible.

 

When you can, can you put acro dx in your signature so any one wishing to advise knows why the high dose.

 

WENT conservative. did 7

 

Having power surges big storm ripping through.

 

I'm just exhausted (I'm anemic and sleep is important to make it through the day) and really didn't want to be up passed 10 tonight. I'm looking forward to the summer when I can monitor more closely.

 

During Leo's first 1.5 years of diabetes, I was 40 minutes away at work. Then I converted to work at home, and realize it made life with Leo so much easier. He probably would be gone by now if I did not have the current situation, because he is so bouncy.

 

Glad I went conservative. 2 hours after the shot she went down from 193 to 105.

 

How’s CC doing Janet? I see she went green again today!

 

she's ok! She had good numbers today, yeah. a LITTLE low but steered up easily. I was home today for it, so that was good. I reduced by .25 tonight. Sometimes her dose is great like tonight, and sometimes she stays in the high 200's and 300's. yea never know. It is what it is I guess. Nice preshot tonight, too. A little stiff and limpy today, so we'll probably give adequan a few days early. otherwise ok.

 

i decided to give her a little gabapentin to take the edge off.

 

Sorry to hear about your diagnosis, Janet.
I have Cricket on cabergoline, she had already experienced heart failure and started neurological side effects before acro diagnosis, so she isn't a candidate for SRT or surgery.
Acro is a rough journey, but the support I've found on here has been invaluable.
Read through as many threads as you can in this forum, it'll help.
Also, Cricket had the pot belly too. That was actually the first sign, but my vet had just told me to put her on a diet, this was before she came own with heart failure and before she was diagnoses diabetic even.
I wish I wouldv'e pushed for more back then because I knew there had been no change to her diet at that point.

She still has the pot belly, but it isn't as pronounced because she has lost weight and is experiencing muscle wasting.

Take care

 

Awe so sorry you're in the same boat. I think my vet is ready for me to bring her to Someone else... I may try the vet Bronx's dad goes to. Cc had been doing well lately so it gives me a chance to breath while I'm dealing with my 6 year old son's medical issues right now. My focus has to be on him right now.

 

Janet I’m so sorry your son is having medical problems, yes he absolutely comes first. Prayers and vines that all turn out well!

 

Thanks I'll know more after some tests on Friday. Ty praying is not serious. Googling has made me crazy. All the possibilities are horrible.

 

I hope your son is doing better Janet. People are more important than kittehs...and sometimes we get too wrapped up in our cats.

When Leo was diagnosed with Acro, his primary vet didn't have real info. A followup with an internal specialist was productive - she knew a lot about Acro and did the referral to CSU. The internal Dr. immediately recognized the Acro in Leo
- clubbed feet
- prognathia - lower jaw longer
- bigger head (not like some politicians)
- distended gut

The Acro produces those side effects early. And with Leo they haven't gone away, even though his Acro is mostly under control. Good luck with the vet tests on Friday.

 

It's the kid who's getting tested on Friday, not the cat. Lol. Thanks for that info.

 

Hope all goes well today Janet and you get answers and a plan

 

Actually they tests didn't go so well. There's a definite delay from his eyes to his brain causing the diminished vision. We go Tuesday to measure the nerves behind the retina to see if there's damage. If it's not that then it's the optic nerve. No matter what the prognosis doesn't sound good.

 

Oh no That sounds scary. Will continue the prayers and vines for your son.

 

Ty. Trying not to panic but there are few positive senarios. Brain tumor, multiple sclerosis, nerve atrophy leading to eventual blindness, pediatric glaucoma. All scary stuff. The only positive one that can be treated would be some kind of inflammation of the optic nerve that could be treated with steroid iv. All scary stuff. Prayers are really appreciated.

 

Thinking of you and your son Janet. That is scary, and I hope for the treatable diagnosis. Healing vines and calm for you and your family.

 

It helps to have a dark sense of humor Janet. I have 4 boxes of U40.

 

Lol

 

Thinking of you and your son today Janet

 

Thank you. I'm not even catholic and I'm praying to every healing Saint I can. Just in case.

 

Don't forget about Beelzebub. I use that to scare away door knockers and thumpers.

 

Well the good news is that it's not a brain tumor. The bad news is he will eventually go blind over the next several years. Pray that the eyes degrade slowly and science works quickly for a treatment because right now there is none.

 

Sorry, Janet.

 

I am so sorry Janet. Thoughts and prayers are with you and your son.

 

Janet I’m so sorry

 

My sympathies to you and your son. I am very sorry to hear this Janet. Hugs to you and your family.

 

Very sorry to read about your son's diagnosis. He's a very special guy and hopefully medical science will be able to present him with treatment, soon enough. Hugs to you, you are a marvelous momma in every way. I think you, being you, are already mapping out strategies and ways for him to adapt and to live with whatever comes. Very very best wishes and solutions for this part of his life that has taken a bit of a sideways turn.

 

Thank you everyone. To say we are devastated is an understatement. It helped us make up our minds about the srt treatment though. Just can't spend the 8 k. Well need every penny if we need to take extended time off and for co-pays. And for trips to see things before he just can't anymore.

 

So sorry Janet, sending prayers and hugs and healing vines

 

I'm so sorry, Janet.
There's nothing worse than being a parent and not being able to "fix it" for your child.

 

I go to Phil, if I could take my eyes out and give them to you I would. And he's like why would you do that? I said because I love you and want you to always see. And he was like but then you wouldn't, and I would never allow you to do that. Oh my heart.

 

Oh Janet what a special boy your son is! How very lucky he is to have you for a mom and how very lucky you are to have him for a son! I think your idea of travel is a great one, and talking to him about it all will help it not to be so scary. You and Phil are in my prayers

 

Theresa and I are thinking about you today Janet. More vines and hugs from both of us. I am so sorry there is not a resolution.

When I got my PhD, my room-mate was getting his MD (now he is a radiologist). He was deaf in one ear from a childhood disease. I asked if he could get it fixed, and he said there are just some things beyond our medical abilities.

 

Well I cried less today and ate some food so I guess that's better.

 

That took my breath away. Your son loves you so much...

One foot in front of the other... take each day as it comes and please remember to take good care of yourself.

 

He truly is probably the nicest, kindest, most empathetic human I've ever known. No joke. Really old soul and much further along in his journey than me which I'm sure it's why he was sent on the mission. I am still so sad for him. I feel like just in the last month there's a noticeable decline in his sight. Things he could see a few weeks ago he can't anymore.