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Kristy

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About Kristy

  • Rank
    Gamma Cushie - Officially Cured 1/3/13
  • Birthday July 15

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  • Gender
    Female
  • Location
    Texas

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  1. Hi Jody, Post-op, I was out of work about 8 weeks, primarily because I wasn't stable enough to go to work sooner. I am glad you are going to NIH! I think you will be well cared for! It is true that many of us cured cushies don't stick around. I quit posting regularly a number of years ago. Life just had me busy, and this is a good thing! I had the microadenoma that was left to grow while the doctors squabbled about me having or not having Cushings over a 5 year period. I ultimately was diagnosed with Cyclical Cushings in 2004. Unfortunately for me, the tumor grew all throughout the gland during this time. Post surgery, the tumor grew back in fragments. For me, radiation using gamma knife was the right choice instead of a second surgery. I've continued to work and I'm working on my MBA. I haven't returned completely to pre-cushings status (I think the weight loss is the hardest), but have major improvements. For me, having my mind back in working order has been the most blessing. Take care, and keep positive for the days ahead! Kristy
  2. I'm doing good Gina. I've had a plateful here lately and have been MIA on the patient boards. I started a new job last December. My daugher graduates college this summer, is marrying, and is moving away! My eldest son is also moving to college this fall. Soon it will be just me and my hubby and my youngest son. I hope the SOM230 ends up being a viable option. In the interim, for me, the keto is doing its job. I am cycling still, but the cycles that bust through the blockade happen every now and again - like I am fine for a month, then a few days of restless sleep and the works, then back to normal. If I don't take my keto (I take 200 3x per day), on time, the same time everyday, my body complains. First I get the facial flushing, then my cheeks feel hot, then I start sweating. Even my youngest notices when "Mommy needs her meds." The drug is helping me and is a good alternative for me at this time. I started seeing Dr. Devin a few months ago. I like her team. I like her. Dr. McCutcheon referred me to her about 4 months ago. My insurance had changed, and the tests I normally would run that were ordered by Dr. Petak couldn't all be done at the new lab that was on my insurance. I was really nervous about seeing her. I was so afraid that all of the problems I had during diagnosis would resurface. On her request, I ordered the medical records post surgery from Dr. Petak and the records from Dr. Ludlam. She reviewed them, didn't make mention of them at all, and was and has been very professional. I think she is one who thinks for herself. I admire that in people. I also notice her staff and her fellow both have good attitudes. I really am doing alot to try to be healthy in the midst of this. My vitamin D tends to drop off into the gutter if I am not careful. I do take vitamins, (specially b-complex) and I try to get some outside sunlight, but it really helped when Dr. Devin suggest I add yogurt into my diet 2x per day. I know... I know... yougurt... blech... but I do like it with a handful of granola, and I do like it with real peaches added, and I do like it with real blueberries added. I also like to slice up bannana real thin and freeze it on a cookie sheet, (after they are frozen, they go well into a ziploc) then add the ice-bananna to it. Anyways, between these changes and 6 weeks of medical therapy, my vitamin D was actually excellent this time! Actually, all of my labs were excellent this time! A few are still outstanding, but I don't expect anything to be an issue. I know that someday, we will have to talk about next steps, but I am hoping to hold the disease steady until I finish up my new construction project. I think as long as I am doing well on the medical therapy and my tumor regrowth remains in control, and my overall health holds, there isn't a problem. I think between both Dr. Devin and Dr. Petak, they will keep a good objective eye on me. I miss everyone and think of you often! Kristy
  3. Sign me up! I've been on keto for over a year now... and if it can stop that little bugger from secreting too much acth...I'm with it. I wish anyways... sigh... k
  4. Nope... just can't seem to find that magic bullet. What I have noticed though, is patients who were suspected of cushings who took avandia and actos, that it did take alot longer to have their cushings diagnosed. Unfortunately, one of the side effects of the medicines was weight gain... so it seems to me that it may have helped biochemically, but when you are trying to tell your doctor that something is terribly wrong... Never mind... you all know where I am going.
  5. The drug is Avandia... and with all of the new warnings about it... I expect they are looking for another way. http://www.fda.gov/bbs/topics/NEWS/2007/NEW01636.html
  6. Interesting - my 1.5t image showed a right tumor, my 3t showed a left tumor, the surgeon found tumor on both sides. Thanks Mary
  7. Well, maybe she has ectopic carcinoid that has a genetic component or even possibly Multiple Endocrine Neoplasia, as this is a form of genetic based cushings.
  8. He has type 1 diabetes too, so when the skin eruptions started many years ago, they attributed it to the diabetes. It wasn't until about a year and a half ago, when my mom started to take him to the endo and got his diabetes straight, that the endo realized something wasn't quite right. His skin eruptions had gotten so bad that they would grow to the size of a fist in weird places - legs, lower arms, and a huge one developed on his neck. The endo did some blood work and told my brother to go to the emergency room. His kidneys were in failure. Fortunately, after about 4 major hospital stays, and being poked and prodded by every kind of doctor, and put on real high dose steriods along with another mess of meds, he is stable for as well as he can be stable. He lost much of his vision in one eye due to the sarcoid. He has it in his lungs, csf, heart, kidneys, eyes, and probably everywhere else. The doctor almost put him on dialysis. His kidney function is right around 25%. His long term prognosis is poor, but we have faith that God isn't done with him yet. Each turn with him is full of joys and and others heartbreak. So much for a man of 35. Through him, I learned taht sarcoid can be very serious and life threatening. When I look at all he has gone through and how many times he sat on death's door, I am very thankful for the time God is giving us to be with him. Cathy, his fight is much worse than mine has ever been, and probably ever will be. I'll keep you in my prayers, Cathy. I will pray for you strength and wisdom for your doctors. Hugs... Kristy
  9. Cathy, it is like causing adrenal blockade induced nelsons in some patients. I figure the same number of patients who get a bla and get nelsons (no radiation done - 30%) would be the same for the keto patient population. I guess if you decided to get a BLA, your endo would probably not be too worried about your nelson's risk. I am on 500mgs of keto. I could probably go higher to make my body happier, but my endo says no way. My brother is on 40 mgs of prednisone to keep his sarcoid in check. He has multisystemic sarcoidosis, and his long term prognosis is poor, but he keeps on ticking... How are you doing?
  10. Yes, this is great news for ectopic Cushings patients!
  11. This drug is already used to treat acromegaly. Tammy noticed alot of improvement on the trial. It is a 15 day trial. If results are promising, this could lead to a medicine approach to treating Cushings. I'd do it... but... I didn't meet the criteria for the protocol. Good luck!
  12. 10-15 new cases of Cushings per million is all Cushings cases, steriod induced, pituitary, adrenal, and cancer. Steriod induced Cushings is predominate. 13% of hormone secreting tumors are ACTH secreting tumors. 15% are GH secreting. The stats for GH secreting tumors that cause acromegaly is about 3 people per million per year, so that means ACTH secreting pituitary tumors that cause Cushings Disease are 1-2 people per million per year. That puts adrenal cushings
  13. For those who are wondering... you can change the skin color at the bottom left of the webpage .
  14. I don't... it isn't new, just 'new and improved' so... I am skeptical. There is more to pituitary tumors than growth. There is a whole issue about the hormone side of the story. You first. :ph34r:
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