Dacogen for a stage 4 bladder cancer patient with MDS??

[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?

[Birgitta-A]

Hi Bill,
Good that the second round of ATG had such a positive result !

You know monosomy 7 is not a good chromosome aberration but everyone has to make this kind of decisions depending on what they think will lead to the best quality of life.

We don't know if you will get other adverse effects like nausea or problems with the skin where you will have the Dacogen shots except low counts.

Perhaps you could try one cycle?

Kind regards
Birgitta-A
74 yo. dx MDS Interm-1 2006. Severe fibrosis and tx dependent from dx. Good results with Thalidomide + Prednisone 2010-2013. Now taking Revlimid and responding.

[Whizbang]

Bill,

The 1st round of Dacogen knocked down my counts quite a bit, but the second round brought me into full remission with counts rebounding to normal levels...

I did 5 days on, 4 full weeks off and 5 days on... that worked for me and my chromosomes were completely shot, including partial 7 I believe...

My Cytogenetics Report:
http://forums.marrowforums.org/showp...46&postcount=3

Best of luck, I tolerated Dacogen well, but was really tired... God Bless...

[Hopeful]

Aloha Bill!

I am so sad to read your turn of events. I had assumed that you had dropped off the forum because you were doing great, not that you were fighting other battles

Monosomy 7 is a very serious finding. So it would make sense that you'd want to try and buy time with the possibility of Vidaza/Dacogen putting it in remission. Perhaps you can then restart gene-targeted chemotherapy for your cancer. This seems to be such a hot-bed of research right now. Here is an article that I found out of UC Davis:

http://www.hindawi.com/journals/au/2012/364919/

If you haven't already, you should run your situation by Dr. Paquette. He is always responsive to his past patient's emails.

I will pray for your continued wisdom and strength in fighting this battle! Please keep us informed!

[Hawaii Bill]

Back again. Thanks very much to everyone for their replies. After a lot of thought and quite a bit of denial, I decided to try one round of the Dacogen and see what happens.

I had my first round yesterday and it was no problem (the nurse said that most patients tolerate it quite well). Four more days and that part will be done. In expectation of a major drop in counts, I guess, the doc gave me antivirals and antibiotics.

[Birgitta-A]

Hi Bill,
Good luck with Dacogen !
Kind regards
Birgitta-A