Have not published to the blog in some time

I have steadily had my prednisone dosage reduced to the point I am now at 5mg.

Dana-Farber is trying to find a happy medium between my pain levels and toxicity.

The Interleukin trial continues.  No huge changes there.  My skin has gotten better but joint flexibility and pain continue to be a problem.

As the weather is turning chillier,  pain levels are going up.

I also continue to have intermittent severe chills at night. These are pretty bad,  to the point where I have had to use extra blankets and a heating pad.

Got burned by the heating pad so going to have to be a bit more careful there.

Doctor's visit update

No real change for now. The increase in prednisone is helping with the pain so we are continuing with it at the higher level for now. In the next visit,  the dosage will be modified and will continue to be tweaked for a long time.  The idea is to scale it back enough to manage symptoms while minimizing toxicity.  We may eventually go to an every other day regimen. Doctor says it could take up to a year to find the right mix.  Eosinophil levels are high but expected due to the chronic GVHD. All other blood counts are in the green.

A shift in the trial

During my last  visit with the NP,  I brought up the idea of starting a new trial previously mentioned by the doctor. She was  to confer with the doctor while eligibility is confirmed. The issue with starting a new trial is that I will definitely see GVHD progression during the wash out period and there is no guarantee I will see results. In essence,  I could be worse off than  now and there would be no chance of going back.  No decision has been made as yet. Both oxycodone and prednisone dosages were increased. Prednisone was increased by a  factor of four. Let the irritability and bloating begin.

Update on Interleukin 2 trial - decision to make on where to go from here

Well. Not so usual a Dana-Farber visit after all. Looks like I will remain on the Interleukin-2 trial for a  little longer because it is helping with the fibrosis.  After my next visit,  I will likely be put on a different trial involving the B cells versus the T cells now.  What I am experiencing is apparently very atypical. The  pain is likely be linked to constriction/impairment of the nerves due to an auto immune reaction similar to lupus or  rheumatic.  I don't have the arthritic symptoms but the pain is on lupus levels.  A new change was made to the oxycodone which should help for night time but have to gut through the day.

A little more sunshine and maybe a new cancer

I have not posted much because things have been relatively static under the interleukin-2 trial but that changed today. 

I had a dental visit and the dentist found a spot on the roof of the mouth that may indicate possible mouth cancer. Lovely.

A return visit in a month will have a velscope (sp?) screen done to determine whether a biopsy should be performed.

I visit with Dana Farber tomorrow so this will be discussed with them as well.