Remission question...

[Tominftl]

My hematologist said I was in remission after my last marrow test. (Painful by the way) my blast count was 2-3%. My doctor said I should continue chemo as it will keep me in remission. I thought that remission meant I could get off chemo. I have had Dacogen treatments for a year and a half. No problems with the dacogen. I just don't think I need to be on chemo forever. Should I seek a second opinion? I know this chemo is expensive and a money maker for the hospital. Someone please give me feedback on this! Thanks.

[bailie]

That is great that your numbers are good. Is a stem cell transplant in your future? What is the status of that discussion?

I would guess that if you stopped the Dacogen your numbers would quickly reverse to the MDS numbers. What is the strategy for when the Dacogen stops working?

[DanL]

This is a great question. Most of the research that I have seen suggests that patients should continue getting treatment until that treatment fails or transplant. The primary reasons are 1) MDS relapses without transplant 2) starting and stopping treatment has not historically been very effective.

A couple of approaches that sometimes get used are reduction of frequency, so instead of every 4 weeks, maybe going 6 weeks between cycles, and sometimes reducing the dose given during treatment cycles. Some people have been on vidaza or dacogen for as long as 4 years that I have seen. In the end, I tend to follow the "trust the doctor" approach unless it just doesn't make any sense to you.

[Tominftl]

Originally Posted by bailie

That is great that your numbers are good. Is a stem cell transplant in your future? What is the status of that discussion?

I would guess that if you stopped the Dacogen your numbers would quickly reverse to the MDS numbers. What is the strategy for when the Dacogen stops working?

The transplant doctor said since I was responding so well to Dacogen,with no transfusions or problems, he was taking that option off the table unless I had a problem down the line and got worse. I did have 2 donors. I would like to take a break from the chemo but not if it means putting my health in jeopardy.
Thanks for your feedback.

[kgtuck]

This is a very good question--my experience tells me that they really don't know what would happen if you discontinue. I have continued on Dacogen for 5 1/2 years now (my counts at diagnosis were hgb 7.4, platelets 15 and a high white count) and now they are hgb 14, platelets 250, wbc 2.8!! My doctor has advised that "you continue this course until the drug no longer is effective", and I don't think they know how long???? One reason for that is that after being on this site for awhile, I've learned that everyone is different even with the same diagnosis there may be a different response. I'm just enjoying being in remission!

[Tominftl]

Originally Posted by kgtuck

This is a very good question--my experience tells me that they really don't know what would happen if you discontinue. I have continued on Dacogen for 5 1/2 years now (my counts at diagnosis were hgb 7.4, platelets 15 and a high white count) and now they are hgb 14, platelets 250, wbc 2.8!! My doctor has advised that "you continue this course until the drug no longer is effective", and I don't think they know how long???? One reason for that is that after being on this site for awhile, I've learned that everyone is different even with the same diagnosis there may be a different response. I'm just enjoying being in remission!

Thanks for responding, that's what my Dr. told me today. I guess I thought remission meant something else. I am happy that I'm in remission. Just didn't want to be so tethered to this treatment.
Are you doing the dacogen iv drip once a month? I wonder if I could push it back to maybe once every six weeks? I will ask this when I go in for my next visit.
Thanks for responding !

[kgtuck]

Hello, again, Just wanted to mention that I was told when I got an opinion from an MDS specialist, "don't push the regimen too far". He said at the time, you can move it out to 5 or even 6, but to not go any farther. That was based on the info he had at the time (3-4 years ago). I know that my hematologist/oncologist that takes care of me is quite conservative, but I figure changing the regiment could be risky. My treatments weren't spaced out until about 2 years ago. And, yes. IV drip! This is not the type of disease that goes into full remission, like tumor type cancers where the tumor is removed and possibly all the cancer is gone. But the good thing is that the Dacogen has very mild side effects and you can go about a normal life, except for a monthly visit to chat with jen, amy, melanie, katie, etc.--friends that take care of me, and I stay for an hour (and share recipes and knitting patterns)! Best wishes to you!!

[mausmish]

From my experiences, current wisdom is what DanL said - stay on Dacogen or Vidaza until transplant or it stops working.

[Tominftl]

Thanks for the helpful information. Now thinking about doing the transplant. Would it be wise to do it while in remission or doesn't it matter?

[bailie]

One (perhaps primary) of the purposes of Dacogen or Vidaza is to prepare for transplant while in remission. Going into transplant in optimum health condition is very important. From a personal view, I am on Day +163 following SCT and have had almost zero problems so far ("knock on wood"). I went into SCT feeling very well and in remission. We all know that it is a "roll of the dice" and everyone seems to have their own unique experience, but situation going into SCT does have an influence on the prognosis.

This disease creates many difficult decisions. Do the best you can to control what you can.

I wish you the best, these are very personal decisions.

[rar]

I am 207 days post transplant. Last Feb. I was diagnosed with MDS so mild it would never need treatment. 2 months later I had very high risk MDS that would kill me if left untreated. I went on a clinical trial with ag221 and in a month my blasts went from 14% to 1%. All my other blood counts stayed critically low. Consultation with 3 respected hematologists agreed due to low blood counts, my only option was a transplant that I had on Jul 1 2014. All went well until day 99 when I got sick. I had grade 3-4 GVHD and serious cases of C.Diff and CMV. I as in the hospital for 2 months unable to eat or get out of bed. I lost 40 pounds and most of my strength. They were able to cure the infections and with 18 drugs to control the GVHD. They sent me home on an IV feed. A couple weeks ago they let me start eating again and exercising. I put on 10 pounds and can walk a couple of miles again.

From what I have read if MDS is very high risk the best option is get remission followed by a transplant asap. This was my case. With less high risk MDS various drugs are more appropriate while they work. Without hesitation I would follow the same course again. Don't depend on a forum, follow the advice of doctors you trust.

[bailie]

Ray, that is interesting when you refer to the velocity of progress that can happen with MDS. My MDS went from zero to RAEB-2 in months. If I were to have "watched and waited" very much longer, I don't think I would be here. They immediately started me on Vidaza and when the numbers were right we went to transplant. Looking back, hesitation could have been problematic.

I am glad to hear you are improving. What an experience!

[rar]

You can't tell in advance if recovery from SCT will be clear sailing such as you experienced or some bumps in the road like I had. I survived the bumps so the SCT was the right decision.

I have a friend of a friend with mild MDS. She did well for 4 years on Vidaza. 6 months ago her blood counts deteriorated. Her doctor told her she was living on borrowed time, a transplant was her only option. She put it off and as a result required more aggressive chemo to get in shape for the transplant and suffered congestive heart problem. Transplant had to be put off. Watch and wait does not always work.

It is good to hear that you had an uneventful recovery. Keep up the good work.

[Cheryl C]

So good to hear from you Ray, and that you are progressing well again. Wise words from both you and Baillie.

Watch and wait is positive in my case because it means that at present I'm not in 'high risk' category. I've been there and I know what a massive decision a transplant is. I'm monitored 4-weekly when I have my IVIG so I'm content.