Discussion in 'Acromegaly / IAA / Cushings Cats' started by DEF, Jun 4, 2012.

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  1. DEF

    DEF Member

    Sep 3, 2011

    Cyber Knife procedure for feline acromegaly is done at Animal Specialty Center in Yonkers ( ) so I thought , even if it just might help one person/cat , it is important to share treatment options as Colorado is a long trip for those on the East Coast.

    Afterall, the desire to help very sick cats with a life threatening pituitary tumor in their brain is the guiding force when non-controversial information (ie name of hospital/results) is widely shared on the internet for the benefit of all.

    I want to thank Heather, Julie, and Joan (and others) for sharing their experiences with their kitty's SRT treatment in Colorado.

    Had they never posted on FDMB I would have never known such a treatment existed and Pinky would have never undergone the procedure.

    And even though I no longer post here I certainly wanted to let people know about a Florida SRT option so made sure my experiences were documented. .

    It is also beneficial to have such information openly available (and searchable on google, etc) to all who may be seeking help
    for their kitties whether they are a group member or not. When you search for a Feline Acromegaly support group FDMB comes up.

    My little story:
    I was dreading the trip to Colorado but with no other options I made the appointment and all the arrangements (hotel, flights, etc.)

    I even asked both Dr. Lunn and Dr. Timian if there was
    a closer facility to me as I am in S florida and Pinky would not do well on such a long arduous trip.

    They understood my concerns completely. Dr. Timian mentioned Wisconsin (but I could find nothing on their program) and we discussed Calif but they did just one fraction and the travel time would have been just as bad.

    Had I known there was a place in New York (3 hour flight and many flights to choose and my DH works out of NY) I would have certainly chosen it over Colorado despite the extra cost.

    Luckily, by a pure fluke while undergoing prelim. ultrasound for Colorado SRT one week prior to leaving , Doc asked why I wasn't going to Univ of Fl Vet College in Gainesville Fl.

    Didn't even know they did SRT in Fl. It was a 5 to 5 1/2 hour drive. So Pinky went there Mar 5-9.

    Now if you are a member of the FB acro group, no worries , you would have known all about NY but my dearest boy cat Roy was dying of cancer at this time so I put off the invitations to join FB for months (no time or energy to do it) so was not privvy to this East coast option. But Roy died, Pinky had SRT, I joined and 'unjoined' FB and that's that.

    Posting stunning good news about this challenging acro disease for the folks at FDMB and others who are lurkers but not joiners could help with feelings of discouragement. Especially if someone has the finances to swing it but hesitant to travel to Colorado, NY opens up their options.

    If that isn't reason enough, think of past help received on FDMB and despite whatever differences exist now, remember good news is always appreciated by those who may have helped during a particular time frame when help was sought and needed before added complications and controversies clouded the scene.

    But ultimately, people have the right to post when and where they choose and that is the way it should be but
    plugging a new treatment center here on FDMB takes so little effort so consider it 'plugged'.

    Pinky and Elaine
    Amanda & Shmee likes this.
  2. Jill & Alex (GA)

    Jill & Alex (GA) Senior Member Moderator

    Dec 28, 2009
    thank you for sharing, elaine. it's good to know there's other options.

    patti, as a member of both the FB Acro Group and the FDMB, perhaps you could begin an on-going list of treatment centers which could be added to your SRT treatment, Octreotide study, Pituitary tumor surgery Sticky... or another appropriate sticky.

    as more centers become available, knowing where these centers are located and the kinds of treatment available would be beneficial to caregivers of acrokitties. it could make a difference as far as whether treatment is do-able/affordable.

    if you're not already aware, i believe Tracy/Leo found out there's some sort of radiation treatment which will be available (later this summer or early fall, i think) for acrokitties at a vet college in Saskatoon, Saskatchewan. i don't remember the details. you'd have to contact her for more info.
    Amanda & Shmee likes this.
  3. OptOut

    OptOut Well-Known Member

    Dec 28, 2009
    Good idea to post the newer options that have become available. I think it would be a great idea for Patti to update the sticky. Many people do prefer to lurk rather than post, and information that can save a life should be readily available / easy to find.

    Patti, if you have time, maybe you could also add what we know about the fractions the different facilities use, since Dr. Lunn very strongly believes that more than one fraction is much better.

    How is Pinky doing? How many fractions did U of Florida do and about how much did it cost? (Price also varies wildly. I think Brent got a very expensive quote from Wisconsin, but I don't know enough to post it).
  4. DEF

    DEF Member

    Sep 3, 2011
    Besides just a list of facilities what I found to be really helpful was the personal accounts leading up to treatment and the treatment itself. From those you bascially knew what to expect.

    I also found Spreadsheets to be very valuable just as they are to mom/dad of a regular diabetic cat. Heather I believe it was yours that detailed subsequent test results (IGF-1) but not sure. I know Milo's chart did. It helps to know how many fractions as you mentioned-Milo had 4. Pinky had 4.

    It is disappointing that SRT doesn't necessarily lower IGF-1 according to Dr. Lunn and an abstract I read. The procedure helps lower it enough to impact diabetes but not 'cure' those high IGF -1 numbers. Milo's went up and then down so that was very fortunate. (I am writing this from memory and not rechecking their SS)

    So with or without SRT, for some kittys the effects of IGF-1 can still impact them over time -that is the sad part. For one thing, uncontrolled diabetes takes its toll and then , of course, the growth of the tumor and other organs could continue. EDIT. I want to add something here that I do bring up in a subsequent post but it should be mentioned here as well. Dr. Lunn had said she is not as concerned with the growth of the organs as she is with diabetes.

    As I understand it SRT doesn't necessarily increase lifespan either but more time will be needed to judge data. Edit: Let me apologize as I really did think this to be true. I really thought it didnt necessarily increase lifespan and did it anyway but I realize that they simply don't know yet as the data is not in and there are complicating factors but HOPEFULLY the data WILL PROVE that it does increase lifespan.
    But I knew this going into it and did it anyway as Dr. Lunn said they should have a better quality of life. (less pain, etc.)

    But recently I was 'lurking' on a people acromegaly support forum (open for all to read) to find out what they use for pain. ( nothing useful for a kitty yet but the search continues) But I learned a bit about this awful disease .

    I think for some if the tumor is small they have a much more favorable outcome with various treatments, ie drugs or surgery and drugs. So it is important to diagnose early. People can have a normal lifespan then.

    But for others with large tumors pressing on optic nerve and into sinus cavity this can be an unbearable, debilitating disease. And the treatments seem to have little effect or it improves and then back to square one as IGF-1 and GH can't be regulated. Drugs are very important in controlling this disease for people and they don't always continue to work for some.

    With cats, some do well with SRT but not all. I would think a small tumor, very slow growing would help to live passed the expectant life span of an acromegalic cat if you can control diabetes. And several have done just that even without SRT.

    What would be interesting to compare is if there is a difference in controlling IGF-1 factor with the Cyper Knife SRT vs Linear Accel. SRT. It sure did a stunning job at controlling GH that impacts diabetes , maybe it does a better job overall at stopping GH output.

    But SRT is so expensive with variable results. WIsh the drug trial on cats hadn't failed--as , like people, that has to be the route to go. I think there are less than 35 cats in the whole U.S. that have undergone SRT. (# in Calif. -unknown)

    As far as PInky, it cost $6000 to go to Univ of Fl. But I spent $1000 extra prior to trip that wasn't required (heart and adomen ultrasound) as I sure as 'heck' didn't want to travel to Colorado to be told she wasn't a candidate. 4 fractions--he thought she could have been blind in a few months.

    She seems perkier at times with better BG numbers but I would still say she is nothing like her old self. She had a large tumor --so who knows if that is making things more complicated. SRT not kicking in as of yet-- better numbers are simply because of more insulin dosed on what I learned from human diabetic books (still mindful of acromegaly condition).

    I 'think' her neck and shoulders may be gettting bigger. Not sure. She was always a petite 9 pound cat that looked like a perpetual kitten. Now she has gained even more weight and body size. We call her our little sumo wrestler. :YMSIGH: She has also gotten bow-legged. She snores but not nearly as much. The only thing she is on for pain is occasional bupe.

    She still sleeps right next to me and purrs when I brush her which I do ALOT. I think of it as therapy.

    My DH and I want to take her back to Gainesville for another MRI (if we decide she can handle the stress and fright of it all) ---her Dr said to wait 6 months to do this and we will test IGF 1 again. I think it helps Drs. to know what has happened to the tumor after treatment. One lady, he told us, even sent her cat's body to him for autopsy to further research.

    Elaine and Pinky
  5. DEF

    DEF Member

    Sep 3, 2011
    Please confine comments to cat health.

  6. Patti and Merlin

    Patti and Merlin Member

    Dec 28, 2009
    I hope to update the sticky soon - however my main issue lately has been that I have had many issues with all my other cats lately that I haven't had much time recently to do this. (I have cats with cardiomyopathy, liver issues, CRF, no WBC, one post lung CA, and now a new dog who just had knee surgery - oh and I'm fostering Ollie with acromegaly and has megacolon)

    I promise to work more on it soon.

    What I will say tho is... there is NOW soooo much more info on SRT, and even the newer treatment that Sooty has had done that it's difficult to keep up with all the places. THAT is why in the acro group we talk so much amongst ourselves - to try to keep each other updated all the time. It's an ever-changing treatment now with the different facilities having some various opinions.

    It would be impossible for me to list all the ways each facility does it. I'm happy to add in the different places BUT I'm afraid - some of the work on where people go has to be done by the person him/herself. That - or please come and talk with the people in FB acro about their experiences. I don't mean to sound short about all this - BUT the "sticky" and the "info sticky " on SRT is a guideline and general info sheet to help people get started.

    I still need to add new members names to the sticky too as I know I am far behind in that endeavor also and promise to get that updated too.

    thanks so much for letting me know what people would like...
  7. OptOut

    OptOut Well-Known Member

    Dec 28, 2009
    Elaine, I posted this somewhere here, some time ago. Here is a quote from Dr. L re: IGF-1 and GH:
    Here are some quotes from Dr. L regarding kidney disease (5/9/2010):
    And, the following is an excerpt from Dr. L's "Octreotide Therapy" study. I've posted this before, in this group, with her blessing.

  8. DEF

    DEF Member

    Sep 3, 2011
    Believe me Heather, all that you have ever posted I have read and learned from. It helped in my own research. It was also your information that helped me formulate the questions I wrote to Dr. Lunn just prior to making appointment.

    It was you that had all the great information linked on your spreadsheet which was so helpful.

    I didn't remember the part about the kidney disease that you just cited but I know Pinky's SRT Dr said with acromegaly they worry about kidney disease, heart problems, and infection caused by uncontrollable diabetes. Then there is neuropathy as well.

    Dr. Lunn told me basically the same thing when she answered my questions--they are less worried about organ enlargement than they are about the diabetes.

    Thanks for posting info.

    Elaine and Pinky
  9. DEF

    DEF Member

    Sep 3, 2011
    I in no way wanted to hurt anyone with my comments regarding SRT treatment. If people would just communicate and let one another know what is upsetting to them I could have posted additional information.

    If your own child had cancer would you not want to know all that you could possibly know to make informed, intelligent decisions concerning their treatment. Yet, that very knowledge may be hurtful and difficult to bear.

    Or perhaps you had to make a decision with limited knowledge and with additional information you may have chosen an entirely different course of treatment. What's done is done but certainly that information would help others dealing with the same heart wrenching disease.

    I specifically asked Dr. Lunn about the life expectancy of an acro kitty with SRT. Here is what she said:

    I can't say if survival is longer. I only know for sure about 5 cats that have died. So it will take a long time to get the median survival data. These are older cats anyway and will die of other diseases, so showing a significant increase in median survival may never be possible. I am much more concerned with quality of life at this point.

    At the Univ. of Fl. 3 cats have died out of 7 (one other unknown). This is a painful statistic to comtemplate but I certainly wanted to know and specifically asked. As other factors (age, duration of disease) may have impacted the results at least I can make a difficult decision with all the facts available. I wouldn't want anyone to 'hide' this information from me because it is a frightening statistic or hurtful nor would I want to find it out AFTER treatment when it has a bearing on my decision.

    I actually thought that SRT didn't necessarly mean a longer lifespan and did it anyway but I realize that they simply don't know and may never know because other complicating factors play into it.

    So having the simple knowledge that they don't know at this time how SRT effects lifespan doesn't mean to be discouraging or hurtful and I should have said it differently . Hopefully the data will prove it to be very beneficial. SInce they don't know yet at least Dr. Lunn says she is more concerned with quality of life.

    I also told Dr. Lunn I was concerned about organ enlargement even AFTER SRT and she said she wasn't as concerned with that as she is with the diabetes. Wouldn't that be important to someone who CAN'T do SRT to know--wouldn't that be some comfort to know? Dr. Lunn told me this:

    Enlargement of the organs itself is not a huge concern - it is the function of the organs that is important. Cardiac disease is likely related to thickening of the heart muscle, but the kidney problems are not necessarily related to their size. Thickening of the respiratory tissues could be a concern, and there is some evidence that this might reverse after treatment. I would not expect bony changes to reverse.

    You may have an IGF 1 test repeated and the results have gone UP wouldn't it be important to know that this can happen but HOPEFULLY it will go down and it has for some people. Dr. Lunn said the following on the subject:

    Based on my studies I don't think that following IGF-1 is always very meaningful. Sometimes it goes down, and sometimes not. In some cats it goes up again. But it does not correlate with how they are doing clinically. They can come off insulin or be on a normal low dose of insulin and still have a high IGF-1. So presumably their GH levels have come down, but we don't know for sure because we can't measure it.

    If IFG 1 remains high presumably the organs can enlarge but she has already said that is not the greatest concern (diabetes is). Perhaps the enlargement of the organs is a very slow, slow process and she did say it is the function of the organs that is important. Knowing the importance of diabetic control and not overly worrying about enlarging organs is certainly important.

    Isn't it also important to compare different types of SRT treatments as one may be more successful than another. If one particular place proved superior and I didn't go there I would still want this information available to others. Or maybe results will prove all treatments comparable and one may choose a facilities based on convenience.

    If my cat died tomorrow wouldn't it be important to know that she had a large tumor and perhaps that impacted the results as it does with people. This is hurtful imformation do contend with but I certainly needed to know. Maybe it will have an influence or maybe it won't but it is something to consider. It would seem to impact any decisions regarding pain medicine. Maybe others might want to know that size of tumor may be a mitigating factor in the progression and course of this disease.

    For people it seems that some have very successful treatment and others less so and it may depend on size of tumor. Wouldn't that tell you that it important to undergo the testing and diagnose this disease as quickly as possible.
    Or maybe the tumor grows so slowly a timely diagnosis is not crucial.

    Isn't knowledge important in making informed health decisions so that critical decisions can be made with all the facts and statistics (both good and bad).

    However, it is important to communicate and have a give and take and then someone could have helped me come to terms with what I thought to be a rather depressing outlook concerning lifespan despite all I have done. Afterall, my cat has this disease and I am dealing with it as well. I would never say anything just to make someone feel terrible --i actually thought everything I wrote to be true. If someone had additonal thoughts or clarifications why not participate in the discussion rather than attack. I would have made an immediate correction. People really aren't as bad/evil as you believe them to be.
  10. Grayson & Lu

    Grayson & Lu Well-Known Member

    Jan 9, 2012
    Not too familiar w/ all the other places that treat Acro, just UC Davis, Florida and Yonkers, but I've spoken with Dr. Timian and the radiation oncologist (Dr. Griffin) at CSU, and met w/ Dr. Lunn, who is now at NC State. Here are just a few tidbits they shared with me...

    I asked Dr. Griffin about life expectancy. She indicated that in their study, over half of the study group was still alive; therefore they had not determined life expectancy for post-SRT cats! Without treatment (and certainly dependant on the size of the tumor(s), the expectancy is less than 2 years. She also indicated that improvement (reduction in insulin, general better health, reversal of soft tissue size) varies from something like 7-67 EDIT: 7-70 weeks post SRT - I'll have to check my notes and clarify that one.... Bone growth does not reverse.

    I specifically asked Dr. Lunn about Grayson's enlarged kidneys - she indicated the large kidneys are not a problem if they are not diseased.

    Dr. Timian indicated they had not published their results as of yet. I'm sure gathering the info doesn't come easily - thus the importance of including everyone who has an Acro-cat. There is an Acro-tracker spreadsheet - not sure who manages it, but it has some helpful info - would be great to know it was frequently updated.

    And for those folks who have kitties w/ IGF-1 or IAA numbers suggesting this, it's good to know that you can "meet" in both an open and closed group on facebook. I posted here, and shortly thereafter got a PM w/ the info for FB.

    SO GLAD this is here, and helpful people were able to guide me!

    Amanda & Shmee likes this.
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