Situation check for Ray, Data and DanL?

[bailie]

I hope no news is good news for these three. I hope that everything is going well and that is why we haven't heard from you.

[DanL]

Bailie,

Thanks for checking in. I haven't had too much to report and haven't seen a lot to respond to recently, but I am here lurking around. Overall health is improving, I still do a lot of photopheresis to help with cGVHD, and I am due to go in and get my right shoulder replaced in the next couple of months. Main complaint these days is continued issues with cGVHD, having to see the dermatologist every three months, or more, about popping up pre-cancerous skin issues, chronic fatigue issues, and then the pain in the shoulder, which continues to get worse. That will be three replaced joints and two acrylic enhanced eyes. I am developing some worsening necrosis in my left knee and ankle as well, which may mean more surgery, but I will gladly accept these issues in exchange for otherwise good health.

I hope that everyone else we have not seen any postings from are doing at least as well.

dan

[bailie]

Dan, it is good to hear from you. We have a few things in common only it is my left shoulder. I have had constant pain for the last couple of months. I have been taking oxycodone and/or Celebrex and/or Tramadol along with Tylenol and ibuprofen 24/7. The pain feels just like a rotator cuff injury. The last two weeks it seems that Tylenol and ibuprofen are working the best. I am hoping it will resolve soon. I have also had two basal cell surgeries recently. Nothing serious. My fatigue is getting more noticeable which has surprised me. I thought that would be getting better. Part of my situation is that I am doing Vidaza and ponatinib (for the "Philadelphia chromosome"). There is no track record for people taking both at the same time and both have similar side effects, so that is interesting.

[rar]

After a couple calls from the grim reaper I am still upright. They say the cutoff between acute and chronic GVHD is 100 days. I got symptoms at 100 days so I have chronic acute GVHD. I am still on 26 drugs and supplements. This makes it difficult to sort out drug side effects from GVHD. I have eye problems. The punctum (ducts that run between eyelid to nose) don't seem to be working so I cry from my nose all day and have severe dry eye. I had the lower punctum plugged which helped a little. For the upper ones it requires a permanent surgery. I am not enthusiastic. I developed hypotension with systolic pressure as low as 45 which caused near fainting and extreme fatigue. Meds increased pressure to a low around 80. feeling much better but still dizzy. Sore throat, skin cancers cut out, osteoporosis. The fosamax did not agree with me. The doc wants to try prolia. I am not enthusiastic. I walk 3 miles 5 days a week and do strength training twice a week. My 50 pound weight loss in 2 month hospital stay greatly decreased my muscle mass. Except for the dizziness I feel pretty good. My doctors think I am a rare success story in their practice. I am not sick enough to try any of the GVHD treatments. I am on monthly visits for the duration. It could be much worse.

Bad experience with VA. When first diagnosed with MDS RAEBII the VA oncologist said I had MDS, it would kill me with out a transplant, their waiting list was so long for transplant that I would be dead before my number came up. I showed them. I applied for disability due to benzene exposure in service 55 years ago. I was denied my claim because my service record did not show that I went on sick call for treatment of MDS. MDS was not invented then. I was told my claim would take 3 to 5 years for the next stage. I said I would not live that long. I was told not to worry if I died my wife could continue my claim.

Ray

[bailie]

Ray, thank you. You said, "This makes it difficult to sort out drug side effects from GVHD". That is what I have been feeling for some time. The drugs are powerful so is it the drugs or the SCT? As I weave my way through this I have decided it probably doesn't matter. I have found that I don't have a "normal" day. Each day seems to have its own personality.

Again, I salute you for your exercise routine. I can't imagine walking three miles a day. It is encouraging to hear what you are doing. I haven't had the effects of GVHD but I did relapse with a diagnosis of AML+Philadelphia chromosome. I still have no regrets for having chosen a SCT.

[Data]

Hi Baille,
I am still hanging in there. I have had a few problems and spent a lot of time going back and forth to Gainesville (Shands Cancer Hospital). My blood counts, most notable my platelets, have been going down. I was at the clinic today and got one unit of platelets. I go back Tuesday for my second of four Rituxan infusions. In addition to the counts going down I had a brief problem with GVHD (skin) but that was quickly cleared up with a increase in my prednisone.

Thanks for the inquiry.

Data

[bailie]

Data, great to hear from you. I guess we are all "still hanging" in there doing the best we can. Our experiences are different but there is a common thread. My counts are inconsistent mainly because I am doing the Vidaza and ponatinib (for the Philadelphia chromosome). I haven't been exposed to Rituxan. Keep up the good effort, we wish you the best.