[Hawaii Bill]

Aloha!

I've been away from the forum for at least a couple of years. Now I'm back in a different subforum with a request for any information or comments from people familiar/experienced with Dacogen.

A little bit of history. I was dx'd with severe Aplastic Anemia (AA)in late 2006, responded to ATG/Cyclo/Prednisone/Neupogen, relapsed six months later after tapering to 75mg cyclo daily. Stayed in limbo for a year with moderate AA, then doc wanted to do a second ATG round. I got a second opinion at UCLA, and they said to just raise my cyclo dose to 200mg twice a day, something I'd been asking the doctor to do all along!! I got my last transfusion a month later, and my counts slowly rose until my whites were normal, my hemoglobin was almost normal around 12 and my platelets were 100k. Very livable counts and I went back to a life free of AA. I had a bone marrow biopsy in Aug 2012 as a benchmark, and the results came back normal!

Alas, in Oct 2012 I was diagnosed with muscle-invasive bladder cancer. I underwent 2 rounds of MVAC chemo, but needed extra time and some Neupogen shots on top of the Neulasta shots to stay on chemo schedule. A few weeks later, surgery to remove my bladder, prostate, and some nearby lymph nodes. Pathology on one of the nodes was positive. Stage 4, and so more chemo after a few weeks to recover from the surgery. This time my blood counts did not recover from the chemo so fast. Instead of having two rounds four weeks apart, I had them eight weeks apart.

Turns out that my counts did not rebound after the second round, so my doctor did a bone marrow biopsy. 10-20% cellularity, and monosomy 7. My research shows that either Neupogen or chemo can cause MDS.

To top it all off, my 6-month post-surgical scan revealed new enlarged lymph nodes, we did a needle biopsy, and the bladder cancer is back. Without more chemo, the doc says the median survival is 12-18 months.

My doc is recommending Dacogen to try and reduce my transfusion independence. Right now, it is looking like I will be needing platelets weekly and 2 units of red every 3 weeks or so. My doctor is kind with the red blood, and lets me have it when my hemoglobin is 8.5, based on how I feel. I don't know how long we could stretch the red blood transfusions if he held me to the usual threshold.

I tried to keep that short, and still wrote a lot. Sorry!

I am hesitant to do more treatment at this point. The higher counts sound great, but he said my counts will "get worse before they get better". He is suggesting 5 days of infusion every 5/6 weeks, on top of blood transfusions.

What do you think? Is monosomy 7 so treacherous that I need to treat it despite the fact that the cancer is apt to get me in a year or so?