IGF-1 came back at 434, what is the next step?

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Bronx's dad (GA)

Bronx's dad (GA)

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Hi all,

Got the results back from MSU today. IAA was negative (8), but IGF-1 was way over the normal range. His SpecFPL was 8 which is also high. I have been doing the TR Protocol and now know why he hasn't moved one bit from the reds. Does Lev work better for our Acro cats? What is the next step the vet will recommend, an ultrasound? What else can I do? I have read about using R? This is depressing. Thanks.
 
You will find that the active posters with acrocats are mostly posting on the Lantus/Lev board. This forum is mostly informational. By the way, Bronx's IGF-1 was almost the same as Neko's. As far as I know, the size of the number means nothing other than positive for acromegaly. Other cats with lower IGF-1 numbers than Neko have had larger tumours, so it's not an indicator of size either.

What you do next depends on your circumstances and possibly if you can travel. There are some treatment options, most of which involve travel, depending where you live.

I would also focus on treating his pancreatitis, to help him feel better. In the Health Links forum there is a good Primer on Pancreatitis that Marje wrote that will give you some background and ideas. Has your vet suggested anything?
 
Wendy&Neko said:
You will find that the active posters with acrocats are mostly posting on the Lantus/Lev board. This forum is mostly informational. By the way, Bronx's IGF-1 was almost the same as Neko's. As far as I know, the size of the number means nothing other than positive for acromegaly. Other cats with lower IGF-1 numbers than Neko have had larger tumours, so it's not an indicator of size either.

What you do next depends on your circumstances and possibly if you can travel. There are some treatment options, most of which involve travel, depending where you live.

I would also focus on treating his pancreatitis, to help him feel better. In the Health Links forum there is a good Primer on Pancreatitis that Marje wrote that will give you some background and ideas. Has your vet suggested anything?
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Vet hasn't suggested anything yet, we were waiting for the IGF tests. I am guessing he will want to do an ultrasound. Should I bother with that? I have moved his food dish higher and other than the laying down on tile after eating, he is not showing any other signs and maybe the high SpecFPL (8) is due to his BG #s being so high? I did buy a supplement called Pro-Pancreas Formula that I have been giving him in very small amounts. Has Slippery Elm & many other herbs like Juniper berries, licorice root, rose hips, garlic bulb, uva ursi, dandelion root, marshmallow root, goldenseal root, yarrow aeril, nettle leaves, mullein leaf extract, white oak bark. Again, a very small amount (1/3 capsule) since dosage for humans is 2 capsules 3x/day. What do you think my next step should be?
 
An ultrasound may tell you something about the pancreatitis, or it it's something more, which it can be if the SpecfPL is high. It doesn't do a lot for the acromegaly. Neko didn't have her first ultrasound until 4 years after her acro diagnosis. The true test of acromegaly is a CT scan of the pituitary gland, but given Bronx's spreadsheet and IGF-1 number, I'm pretty sure that's what he's got.

Normal treatment for pancreatitis includes fluids, pain relief, and nausea control if he's not eating. Sounds like that's not a problem. I would be cautious around the Pro Pancreas Formula you are feeding. At least garlic is on the ASPCA list of toxic plants for cats.
 
Bronx's dad said:
other than the laying down on tile after eating, he is not showing any other signs and maybe the high SpecFPL (8) is due to his BG #s being so high?
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Pancreatitis can be painful so that may be why Bronx is laying down on the tile floor after eating. He may find the cool floor makes him feel better. Pancreatitis can cause elevated BG.
I am also very concerned about the supplement you are giving Bronx. It contains garlic bulb. I assume that's just a fancy way of saying "garlic" and that is toxic to cats. I suspect it could be contributing to pancreatitis.
 
MrWorfMen's Mom said:
Pancreatitis can be painful so that may be why Bronx is laying down on the tile floor after eating. He may find the cool floor makes him feel better. Pancreatitis can cause elevated BG.
I am also very concerned about the supplement you are giving Bronx. It contains garlic bulb. I assume that's just a fancy way of saying "garlic" and that is toxic to cats. I suspect it could be contributing to pancreatitis.
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I just started that supplement about a week ago and have stopped after reading Wendy's post.
 
I suppose it could be possible to have Acro and pancreatitus. Leo had an ultrasound months before his Acro was confirmed. The ultrasound showed nothing unusual in his organs.

Leo's IGF-1 was not sky high, but it was Acro high. Other cats I've read about, they had higher IGF-1 values. Leo's pituitary was 5x normal volume, as evaluated by CT scan the day before his first SRT treatment.
 
JeffJ said:
I suppose it could be possible to have Acro and pancreatitus.
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It's absolutely possible for an acro cat to have pancreatitis. Punkin had one more acute episode where he got very sick and then he had chronic p-titis after that. Many diabetic cats get pancreatitis - and in some cats the p-titis causes the diabetes.
 
Just looked at Bronx' spreadsheet. Poor guy is getting a ton of insulin now. How is he doing?
 
JeffJ said:
Just looked at Bronx' spreadsheet. Poor guy is getting a ton of insulin now. How is he doing?
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Thanks for checking in Jeff. Yes, he is at a high dose but the BG #s are finally looking better. I was hoping he would be feeling better now that the #s are better but he still just eats like mad and then sleeps...typical acrocat I guess. Natural supplements haven't helped much so I need to do something else to make his life better. There is a place in my state about an hour away that does the SRT and the doctor is from CSU. But I am not sure I want to put Bronx through all of that, he has that snore-like wheezing thing going and also has a heart murmur, all the anesthesia might just be too much. I also called them and they never got back to me which is a turn-off. Other option is that trial drug Cabergoline. My vet seems to be on board as long as I keep him updated. Hopefully he means just BG testing and not constant IGF-1 tests. Seemed to work somewhat in about 1/3rd of the time in a human trial, but the more I read into that trial, even the 1/3rd that responded well became resistant to the drug and IGF started going back up over time. I wish I knew how any cats in the RVC trial are doing. I tried to join the FB acrocat group to see if anybody else has tried the drug yet for their kitties but they never accepted me. I know Wes (saltycat) has the drug but hasn't started yet I believe. But I really have to do something if I want to see Bronx happy again. Thanks again for checking in, hope Leo is doing great!
 
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Thanks for the detailed response. I would give them another one or two calls. You never know, maybe their reception person is swamped or disorganized. I wish SRT for Leo had only been one hour away. The treatment itself wasn't too bad. But Leo was pretty much out of it from the 4 days of anesthesia.

The Cabergoline seems interesting. The potential side effects scare me. Leo is pretty much fixed with the SRT he got - as I document progress in his thread. I would do the SRT again, given the same circumstances. A previous patient on this forum was getting 40 or 50 units/shot. So I hope Bronx does not continue to increase like that. Even if you displace the IGF with injected insulin, I believe the pituitary growth hormone will cause the other bad growth side effects over time. And if the tumor gets bigger, seizures could occur.

I did not try to join the FB acro group. Many people helped me here, so I didn't see the need to go there.

Just from a cost perspective, if you do no additional treatment, the current insulin must be expensive. I over-analyzed the 12-24 month costs for Leo as part of his pre-SRT evaluation. It was cost effective to get him SRT. It is too bad the costs are so high overall. I sympathize with those owners who cannot afford to treat their kittehs.
 
That is true about the cost of insulin over time compared to the cost of the SRT treatment. I just called back and got the doc's voicemail this time instead of the radiation dept voicemail, hopefully he will call back next week. I will try to join that FB group again, maybe someone over there had the SRT done at this hospital (Red Bank Veterinary Hospital). This is the doctor: http://www.rbvh.net/staff/staff.html/s/44/Dustin-Lewis-DVM-Diplomate-ACVR-(Radiation-Oncology)
 
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@Bronx's dad you can join the Facebook open group and then they'll add you to the closed group where most discussion takes place: https://www.facebook.com/groups/68039236605/ Perhaps someone there has experience with Red Bank. You're making good progress with Bronx - I see 3 days of blue amps numbers, along with long stretches of hours in blue as well - great job! What are you trying to address with the supplements? More energy?

Jeff, good to see Leo coming down in dose! I'd encourage you to try to get some nadir tests, at least on weekends, so that you can use that info on adjusting his dose rather than relying on the preshot test for making decisions. You want to know the lowest points he's getting to on his dose rather than the high points. Overall, though, it looks like the SRT is working - you must be thrilled!! I remember how I felt when Punkin was coming down in dose.

I know of a couple of cats that have gotten into the 80-100u per shot range: Perry's Sooty got more than 100u per shot. Suki's Crystal got up to about 80u combined L and R. Suki didn't treat the acro, just carried on with insulin and did a super job of handling Crystal's blood sugar. Perry had Sooty treated, I want to say with cyber-knife, and I believe Sooty went OTJ. Not positive - Perry left years ago. @Wendy&Neko might remember the details.
 
Sooty was before my time, but I saw that he got over 100 units, was treated with cyberknife at Yonkers and OTJ 6 months later.

Note that SRT can take a while to have full effect. Subsequent tests of the IGF-1 may show no or little change. That can also mean continued soft tissue growth, which Neko had, primarily in her mouth and throat, but a lot slower than if she hadn't had SRT. The cabergoline trial is hoping to reduce the IGF-1.

And three years after Neko's first SRT, the tumor came back. When I asked a couple of the people at CSU and NCU, they weren't surprised, because the same thing can happen with people. However, Neko also had acromegaly for at least 5.5 years (I saw early signs before diabetes). That's a long time and I think SRT greatly improved her QOL during that time by slowing a lot of the other changes.
 
Wendy&Neko said:
Sooty was before my time, but I saw that he got over 100 units, was treated with cyberknife at Yonkers and OTJ 6 months later.

Note that SRT can take a while to have full effect. Subsequent tests of the IGF-1 may show no or little change. That can also mean continued soft tissue growth, which Neko had, primarily in her mouth and throat, but a lot slower than if she hadn't had SRT. The cabergoline trial is hoping to reduce the IGF-1.

And three years after Neko's first SRT, the tumor came back. When I asked a couple of the people at CSU and NCU, they weren't surprised, because the same thing can happen with people. However, Neko also had acromegaly for at least 5.5 years (I saw early signs before diabetes). That's a long time and I think SRT greatly improved her QOL during that time by slowing a lot of the other changes.
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What are the early signs you saw? How large was her tumor before the first treatment? Bronx has had that snoring-like wheezing thing a very long time and I just thought it was small airways which I read some cats have.
 
Wow. I never knew about Sooty.
25 weeks after SRT at Yonkers and he went OTJ. Then stayed OTJ for 3 years until tracking was stopped. Looks like a great success story.
 
Perry and Cathy were great with Sooty! It's been quite awhile since Perry posted on the FDMB, but here's the link to his profile if you ever want to look through some of Perry's early posts: Perry and Sooty.

Unfortunately, they had to help Sooty cross the bridge last month. I was told he had been experiencing p-titis and GI problems. :(
 
Jill & Alex (GA) said:
Unfortunately, they had to help Sooty cross the bridge last month.
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Sorry to hear the news. Sooty had Cyberknife the same month as Neko and went OTJ (where she didn't), but had only one more month.

Bronx's dad said:
What are the early signs you saw? How large was her tumor before the first treatment? B
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Note that there has been recent discovery of cats with elevated IGF-1 and imaged pituitary tumors, who were not (or not yet) diabetic. Diabetes is usually the first sign we notice. In humans only about 1/5 of acros have diabetes and until recently it was thought that all acrocats get diabetes. It could just be a later sign. The first sign I saw (and found out much later was acro related) was eye tearing about 6 months before her diabetes. It is caused by soft tissue grown blocking the tear ducts. Heart murmurs and respiratory/voice changes can also be early signs.

Neko's tumour was what they called "tiny" or 0.146 cm in volume the first time. Second treatment it was smaller (2 CT fractions instead of 3) and less height.
 
Called the 2 closest SRT places and here are my options:

1) Animal Specialty Center in Yonkers,NY (20min away) : $10-12K, might be cheaper flying Bronx to RVC and get the damn thing removed!

2) Red Bank Veterinary Hospital, Tinton Falls NJ (1hr away): $6-6.5K, they are getting a state-of-the-art machine and will be ready in May. Doctor said I should consider waiting since it has the latest technology and Bronx is not on a huge amount of insulin right now. Current machine is at their location outside of Philly, PA (2hrs away) and I could schedule right away.
 
The Cyberknife at Yonkers always was more expensive, but it's a more expensive machine and I think the kitties that have gone there have done better. But you are right, you could almost fly to London for that fee.

Did you hear what type of new machine they are getting at Red Bank?
 
No, I didn't ask what type of machine. He just said it is the type of machine he was trained on and it would be safer for Bronx if I am willing to wait. So it sounds more like a different (better) machine as opposed to a new technology machine?
 
The prices for Colorado State are in Leo's thread. It would be a long drive for you, and probably viable after snow is done. The machine is not new to them and they have experience. I had zero worries. Just listing it as an option. Even from Austin, it was 2 days driving in each direction. I'm pretty sure they told me their SRT cost $5 Million. So I understand the pricing associated with treatments.
 
JeffJ said:
The prices for Colorado State are in Leo's thread. It would be a long drive for you, and probably viable after snow is done. The machine is not new to them and they have experience. I had zero worries. Just listing it as an option. Even from Austin, it was 2 days driving in each direction. I'm pretty sure they told me their SRT cost $5 Million. So I understand the pricing associated with treatments.
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The doctor from Red Bank was at CSU and maybe that's the machine he is talking about that they are getting and has trained on?
 
I was in Yonkers today so stopped by the Animal Specialty Center & spoke with the Oncology Service Coordinator. They got a new machine called TrueBeam made by Varian, said cost would be $9-12K.
 
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