I went to the doctor on Tuesday. I am doing good no more rash. I was taken off immunosuppressants. We will see what happens. I don't have to go back for six weeks. Will get baby shots when I go. I should be cleared to work then. Been looking for jobs. Want a fresh start and looking for something amazing. Wish me luck!!
False alarm. Not graft v host!!! I do not know what it is but I think the steroids are helping. It's still here but not as bad. I have to let them know tomorrow how it is doing. It is really weird. I hope it goes away soon or I can get a diagnosis. So I really think I have GVHD for real this time. Thursday night I felt itchy and Friday morning I had bumps all over. I sent pictures to the nurses and they said it looked like Hives. I went to my PCP and she didn't know what it was. She told me to take Zyrtec and see if it got better. It didn't get better. Sunday I woke up with swollen lips and eyes. Today I woke up and the rash is so bad and everywhere and my face is swollen. They prescribed me steroids and I have to go to Boston tomorrow to see. Wow more than half way to a year! I went to the doctor on Tuesday. I am officially in remission. That is very exciting because I have never really been considered in remission for the past five years. I will be off the immunosupressants soon and then I will get vaccines. I think I can return to work at 9 months if I want to. I think I want to but I'm also not sure if I am ready. Today is my birthday and I spent the whole day at Dana Farber for my 6 month check. The past week and a half I have been feeling weird. I had body aches, nausea, and no appetite really. I thought maybe it was from WBC and doctor said maybe but keep eye on it by taking temperature every several hours. This morning I got pricked 6 times before a successful IV was placed and then I had a pet scan. I then saw my doctor. I asked if I had gvhd, he said maybe. But also that maybe I have the aches from my bones trying to so something (like improve WBC). Never really addressed the nausea. I am going to try and see if marijuana cookies help with the pain and nausea. White was still low so I had to have bone marrow biopsy. Ouch! It still hurts right now. As for the pet scan, my doctor is obviously not a radiologist but he thinks its a clean scan!!! He showed me one from 3 months ago that had activity in the stomach and it did not look like anything was there on the one from today!! Happy birthday to me!!!! He will give me full results of scan and biopsy next week and I will update. I went to the doctor yesterday. My white count was low. My doctor thought it might be from the immunosuppressants and at my next check up if it doesn't go up I have to have a bone marrow biopsy. Ouch! He said lymphoma can hide in there but I am doubtful about that because I have never had it show up in my bone marrow before but who knows. My six month checkup is on my birthday!! Not the best way to spend the day. I have to have a pet scan and am hoping I am completely cancer free. Now that would be a good birthday present!! I am turning 27. I have new mouth sores that got injected with steroids again. I got taken off rapamune yesterday so hopefully my white count goes up and the sores go away. I have lost around 12 lbs from these mouth sores. My hair is crazy. It grows up and poofy. It is awkward and I look odd. I wonder when it will grow like a normal person. I try to wear headbands but my hair pushes them off. I am a fan of the bandana look now. Turns out its just mouth ulcers from the rapamune I take. Glad it's not gvhd! It still hurts so bad though and I have lost like 5 lbs from not eating a lot. They injected two of my sores with steroids. I also was given a mouth wash I swish around for five minutes and a gel to put on the sores. It's hard for the tongue sore and the gel because its such a wet area. I do have a lot of dry mouth though. I started taking adderall again and am wondering if maybe that is having some effect on my mouth. Hopefully the sores go away soon. I've also been feeling really tired lately but My counts look good. I think I have oral g v h d. It started with an unusual bump but that went away. My dentist said it was normal. Then I had a canker sore that wouldn't go away and my gums are inflamed. I also have this red bump on my tongue that hurts. It is getting ridiculous. Makes me not want to eat. I go to Dana Farber tomorrow and I am going to see their oral people. Hopefully it goes away soon because it hurts!!!!! I am so bored. There is nothing to do. I am sick of reading and tv. It sucks. My leg hurts still. Don't know what's wrong with it. Pet scan showed inflammation. Don't know why. I wish I could go to acupuncture. Pet scan looked pretty much the same as right before transplant. Nodes a little smaller but there wasn't too much activity before transplant. Hoping once I am weaned off the immunosuppressants there will be nothing left. I forgot to write last appointment and on 100 days! Oops. Anyways still here, still doing well. I have cat scan tomorrow. I was supposed to have it last week I guess. Doctor seemed disappointed aprn didn't schedule. She disappoints me as well. She's snippy. The first 100 days were easier than I expected. I only was uncomfortable the first 30 and that was mostly emotional. The Hickman was a huge issue for me. It's still hard not going places but at least I can have Starbucks. It will also be better for me financially that I will not have to go to Boston weekly. I didn't walk daily like most recommend but I do stay consistent with vitamin d3 drops and probiotics. Maybe that has helped? If anyone is considering a mini allo, it's not as scary as it seems. But I guess I will have to update on that after a year. Please send me well wishes for a clear scan !!! Thank you !!! |