Day 5 and I'm on my way (SCT)

[bailie]

Hopeful, thank you! For some reason my doctor has been somewhat reluctant toward Vidaza as preventative maintenance following SCT. I have copied the references that you have made to help in the discussion. I have thought that since I have tolerated and had considerable success with the Vidaza it should be given consideration. We will see.

Again, thank you for the information.

[Peachy]

Morning Ballie - My thoughts are with you, as I know how hard it is to wait for those results and hope all is well. Peachy

[bailie]

It is Day +229 and I have relapsed. Blast counts are at 5%. It is interesting that the time (229 days) has been relatively uneventful. For the most part, I have felt good since the MDS diagnosis in November of 2013. Very minor GVHD of the skin which was easily controlled and lasted for a couple of weeks and a lung infection that was resolved quickly with surgery. I have had good blood counts almost the entire time with only one transfusion while getting the stem cell transplant.

I will start Vidaza treatments next week and continue for at least four cycles if there is a good response. If there is a poor response then the next treatment is inpatient Flag-Ida.

[JordanN]

Hi, Bailie!

I'm so sorry to hear that you have relapsed! But I am also encouraged that you seem to have had good responses previously to all of your treatments and hope that Vidaza will prove to be effective again! Sending you lots of hugs and wishing you all the best for a successful treatment! You are in my thoughts and prayers!

[DanL]

Bailie,

I am very sorry to hear about the 5% blasts. How were the cytogenetics? How is your chimerism?

It has been a very tough trend for our group of transplant patients, it seems like the day 200 to 250 has been the hurdle for us. I believe that this is where I relapsed and also where Dave did as well.

Catching relapse with 5% marrow blasts sounds like pretty good timing, so I am very hopeful that you will be able to beat this back into a lasting remission.

Strength, courage, and great health to you.
Dan

[bailie]

Thanks Dan, I am still waiting on the cytogenetics and the molecular analysis. The chimerism has been 100 percent donor since day 30 (until now). What I have learned is that 100 percent donor is not quite what we would like to believe. Seems like there are always some of our original cells lurking around trying to cause trouble.

Not sure at this stage whether or not Vidaza can turn this around into a lasting remission. I would like to think that is a possibility. Doctor mentioned another BMB after the first cycle of Vidaza to see how I respond. Hopefully the response will be as good as the first cycle 15 months ago. I can't believe it has been 15 months.

[rar]

Hi bailie,

I am very sorry to hear about your latest setback and hope that the Vidaza will work wonders for you. I am somewhat worried as I am at day 273 and you seem to have done much better than me post transplant. Until a month or so ago my numbers never were real good. In the last month WBC RBC and ANC have actually risen to the normal level with platelets around 100. My doctor is optimistic, I am watching closely. The BMB in 3 months should provide a meaningful data point.

I wish you the best.

Ray

[bailie]

Thank you Ray. It seems like MDS is "like a box of chocolates", you never know what you are going to get. Still, getting the SCT was a very good decision.

It is great that your blood counts are improving. Keep it up!! I guess that is what surprised my doctors ... my counts have been very good this whole time and this popped up. Nothing comfortable about MDS.

[PaulS]

Hi Bailie - sorry to hear about the relapse. I hope you wind up with only the best chocolates. Good luck with the Vidaza. Paul

[Cheryl C]

I'm really sorry to hear about the relapse too, Bailie. You are strong and brave. I hope the Vidaza works for you again!

[bailie]

Paul, thank you. How are you doing with the Vidaza? I hope your counts are starting to improve.

Cheryl, thank you for the encouragement. We all need it. I wish you the best.

[Hopeful]

Bailie,

I am sorry to hear about the relapse, but I am hopeful that because it was caught early, you will be back in remission soon. The fact that you feel good is also a positive sign, in my opinion. Stay strong!

[PaulS]

Hi Bailie -

I've finished 4 cycles of lower intensity Vidaza - counts are still low - 40 plats, WBC under 3 and needing transfusions almost weekly so my hemp doesn't drop below 7 or worse. I seem to feel a bi better, so that's a plus - and I'm still trying to remain hopeful it will eventually work. Scheduled for a BMB in a few weeks so we'll see if there are any changes in the marrow.

I hoping it will at least knock you back into remission. Your strength and positive attitude is inspiring. Paul

[Whizbang]

So sorry for your relapse. I log onto this site occasionally. It makes me feel closer to Dave reading all of his positive encouragement he gave everyone, even when things were not going well for him. MDS is a very crazy disease. Dave was doing amazing for 8 months, then bam!! Counts dropped then transformed to AML. The more I read about the common relapse rate, the more I wish we were a little more prepared. Our doc kept saying the 100 day mark was crucial. We kept thinking if we could just make it past that, we are in the clear. Dave too 100% donor. I guess it doesn't mean what we think. Good luck. I really hope chemo will work for you to get this relapse under control. Donna (Dave's wife)

[bailie]

Thank you Donna. Dave was and still is an inspiration for many of us. MDS is relentless it seems. I was thinking the same thing ... get through Day 100 and then Day 200 ..... and then, "you have got to be kidding me". I knew from the start that it would be impossible to get comfortable with this, but it is easy to hope that it will turn out ok. It is just so difficult for everyone involved. People ask, "how are you doing" and it is hard to give a good answer because you really know that you aren't doing too well.
I wish you well. Thank you for offering more insight for us.

[bailie]

I just got an interesting phone call from my doctor. The BMB that I had last week showed that I have the Philadelphia chromosome or Philadelphia translocation. It is a specific abnormality of chromosomal chromosome 22, which is unusually short, as an acquired abnormality that is most commonly associated with chronic myelogenous leukemia (CML). My doctor said this was very unusual since I was tested for this previously and my donor was tested for this also. So, I win the prize ... I get to have another BMB on Monday to confirm (or not) the 9;22 chromosome. She suggested that I'll be on Vidaza and Gleevec. I think they are trying to see how many drugs my body can absorb before I have a problem. So Monday I get injected with Vidaza at 11:00 a.m. and then drive 40 miles and have a BMB at 2:00. Can't think of many things more fun than that !!

[Chirley]

Sorry to hear that bailie.

I'm attaching a link to an abstract about my particular chromosome deletion but it really refers more to CML. I have del15q but I don't have the t9:22 or del22 so I'm really unusual. My deletion was found in 2010 and the Vidaza was stopped due to non response and I've only been having copper replacement since then. I've not had a BMB since Feb 2011. My counts have been okay but are only now just starting to trend down. Anyway the article might be interesting.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4167428/

[DanL]

Bailie,

I know that interesting is not always the word that we want to apply to our situation, but from what I have read about CML and Philadelphia positive blood cancers, there are two drugs that have been very good at treating them - Gleevec is the front line drug, and there is a second one that is on the verge of replacing it, though I don't remember the name at this time. I think that this may be a diagnosis with quite a bit of hope behind it.

Wishing you the very best health every day.
Dan

[bailie]

I am looking at this as a positive development. Most everything I have read is positive about the 9;22 and CML when compared to MDS. Of course this can just be wishful thinking on my part ("be careful what you wish for"). It is a curious development so it will be interesting to see how this plays out.

[bailie]

Day +305 and we have had more interesting developments from the results of BMB 8 days ago. This BMB followed two cycles of Vidaza (post relapse at about Day 230).

The first report, "Leukemia Markers-Bone Marrow",indicated "No morphologigic or immunophenotypic evidence of residual acute myeloid leukemia". Additionally, "No increase in blasts (less than 5 percent). And, "No circulating blasts".

Second report, "Engraftment Post Transplant, Bone Marrow" ... "No host cells detected".

I am really surprised that the Vidaza and Sprycel could turn this situation around this quickly after just two cycles. Or, could something else be going on? Naturally this could be a temporary development, but we are very willing to take any good news available. The doctors have lengthened my Vidaza cycles to five weeks (7+28 days).

[johnwc]

WOW.... continued prayers for good news

[Hopeful]

So happy for you, Bailie!

[bailie]

We just got the third report from my last BMB, "Cytogenetics Bone Marrow Chromosome Analysis (W/FISH) (PP). The results, "All cells appeared normal male". "FISH was performed with BCR/ABL probe set. All results were within the normal limits established by our laboratory, with no evidence for the previous abnormal patterns."

This is a very interesting turn around after just two cycles of Vidaza and Sprycel. I don't quite know what to make of it, but for now I can't complain especially since the Philadelphia plus AML is so rare with very poor prognosis (six months). I guess this is just part of the roller-coaster ride.

[PaulS]

Seems like more good news. You continue to inspire and defy expectations. Keep going and stay strong - may be a job for you as a Celgene spokesperson.
Best,
Paul

[Bossywife]

That is just WONDERFUL!

Roller Coaster indeed.

Laura