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MDS Myelodysplastic syndromes

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  #1  
Old Thu Jan 23, 2014, 08:30 PM
Rich D Rich D is offline
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Took a gamble with my MDS vidaza treatment.

Hi Folks,

I haven't posted in quite awhile, but wanted to let you know there are good outcomes from various treatments for MDS. I have had it for many years. Closest estimate 11 years. Knew for sure in 2005. Anyway they tried the Procrit for a starter, did nothing. I got agitated and stopped the treatment. Went back to the cancer center a few years later and started with Vidaza. I've taken it for 21 months, first 14 months 5 days on 2 off and 2 more days. Cut that back to 5 days per month, everything stayed basically stable. I was receiving this drug subQ and staying in the 10's for the most part. Never lower than that. After all those months the side effects, pain, and rotten feelings for sometimes a week or so, I felt that basically I was just running in circles. New cells coming in, many destroyed, bad cells there, some destroyed. Long story short, I told doc we would stop treatment and see what happened. First month without HGB dropped to 9.3. Thought I might have made the wrong call. Second month number up to 9.6. Hmnn, a little improvement. Last month it went up to 10.3. So we will see. I'm not on any transfusions, in fact I've had but 3 two baggers, and that was when I first started the drug.

This is a great site. I got loads of information, good will, and a more positive attitude. Brigitta was a great inspiration, and very knowledgeable about MDS. Neil and many other had great contributions.

I'll post next month. Doc figures if that's a decent reading, I'll only go to get a reading each three months, then stop. If I start feeling poorly at some point after that, assuming all goes well prior, then I'd go back and have a bone marrow aspiration to see what's going on inside. I hope we all do well. I know that can't happen, but some amazing things can, and new drugs and treatment are coming along. Oral Vidaza should hit the docs in 2014, that alone makes treatment much easier.
____________________________________________________________________________________________________ _________________________
CLINICAL DATA:
I
66-year-old male with anemia. Evaluate bone marrow for a myelodysplastic syndrome. Accompanying CBC report, dated 9/26/11, indicates WBC 11.1
KluL, RBC 2.66 M/uL, Hgb 9.1 g/dL, HCT 28.5%, MCV 107.3 fL, MCH 34.2 pg, MCHC 31.9 g/dL, RDW 20.2%, platelets 490 K/uL with a differential count
of granulocytes 68.5%, lymphocytes 22.9%, mid 8.6%.
Rich

Last edited by Rich D : Fri Jan 31, 2014 at 02:46 PM. Reason: Gives numbers from 2011
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  #2  
Old Thu Jan 23, 2014, 09:43 PM
Kathy S Kathy S is offline
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Rich,
Interested in reading your journey. My husband has been doing very well so far with his Vidaza and his last BMB came back with everything normal (blast at 3%) They are still suggesting that he go for BMT, but I also feel that you are correct that amazing things and prayers can be answered. Interesting to hear you have had it so long. May I ask your age. I commend you for the courage to stop the Vidaza and wait and see and I pray your numbers continue to climb.
Blessings to you,Kathy
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Kathy,wife of 69 year old male with DX June 2013 with MDS= RAEB 2refractory with Extra Blast Very High Risk WBC 1.9-RBC 2.29-HGB 8.1-PLT 32-, as of Aug 2013:. BMB 12/4/13= WBC 5.57/RBC 4.86/HGB 15.5/HCT 42.8/RDW 49.6/PLT 188. 3% blast.BMB 4/11/14 WBC1.6,PLT12,RBC2.6,HGB9.2
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  #3  
Old Fri Jan 24, 2014, 05:42 AM
Birgitta-A Birgitta-A is offline
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No treatment

Hi Rich,
Thank you for liking my posts! Very interesting to read about your treatment.

Remember that it can take 6 months or more for Vidaza to start working. The drug is "built in" the new cells.

This probably means that if you stop treatment your counts first can improve because the effect of the shots that can decrease the counts have disappeared. Then the bone marrow can react much later and give low counts. Still we hope you manage well without treatment!
Kind regards
Birgitta-A
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  #4  
Old Sun Jan 26, 2014, 05:43 PM
Cheryl C Cheryl C is offline
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Kathy S - I completely agree that amazing things happen and prayers can be answered. In my case, I was ready to go with a transplant when after feeling quite confident, I began to feel very conflicted about whether it was the best option for me. I have rarely had to use drugs and am very sensitive to them. I prayed that if the transplant wasn't right for me at that time, God would reduce my blasts to a level which would remove the transplant option. That is exactly what happened. I don't know what my future holds because I still have MDS but I am so grateful for the last 2+ years of wellness and reduced risk level.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 4-6-weekly. BMB Feb 2014 - no blast transformation. 2017 still stable.
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  #5  
Old Sun Jan 26, 2014, 06:47 PM
bailie bailie is offline
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I still wonder what the end game is after Vidaza? Even though blasts go down, aren't we all headed for transplant following Vidaza? I have just finished my second cycle and I am expecting going to transplant sooner rather than later if I am feeling well. Or, does a person stay on Vidaza as long as possible until the downturn in numbers?
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #6  
Old Sun Jan 26, 2014, 09:37 PM
Whizbang Whizbang is offline
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bailie,

it's a tough choice... even though my cytogenetics came back 100% clean, and I was at 4% blasts after my two rounds of Dacogen.... I am happy I went for the transplant...

Now my circumstances were perfect pre-transplant, with a 10/10 sibling match... But with three young daughters, and a household to support, I had little choice... I still have three colleges to pay and three daughters to give away... I need 25 years not 5 more...
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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  #7  
Old Sun Jan 26, 2014, 09:58 PM
bailie bailie is offline
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I don't understand why it is a "tough choice"? Vidaza generally is not effective for a long time for most people. If Vidaza becomes ineffective for someone in my situation (RAEB-II) I would think transplant is the only choice. What am I missing?
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #8  
Old Mon Jan 27, 2014, 05:31 AM
Cheryl C Cheryl C is offline
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I guess there's always the option to do nothing and hope that your blasts remain stable, and even better reduce, but as far as the specialists are concerned transplant is the only option for a cure. Apparently all the other treatments can only bring temporary remission.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 4-6-weekly. BMB Feb 2014 - no blast transformation. 2017 still stable.
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  #9  
Old Mon Jan 27, 2014, 06:15 AM
Cheryl C Cheryl C is offline
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PS - this report on a fairly recent study may be of interest:

http://www.dana-farber.org/Newsroom/...-with-mds.aspx
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 4-6-weekly. BMB Feb 2014 - no blast transformation. 2017 still stable.
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  #10  
Old Mon Jan 27, 2014, 10:30 AM
bailie bailie is offline
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Cheryl C,

Thank you, that is exactly the type of information I was looking for. It does seem that sentiment is evolving with the results of this study.
Thank you.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #11  
Old Mon Jan 27, 2014, 10:35 AM
bailie bailie is offline
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Rich D,

Have you posted your blood counts and situation of your diagnosis? Just curious as to how they compare with others?

Thank you and continued success.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #12  
Old Mon Jan 27, 2014, 08:02 PM
sbk007 sbk007 is offline
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Quote:
Originally Posted by bailie View Post
I still wonder what the end game is after Vidaza? Even though blasts go down, aren't we all headed for transplant following Vidaza? I have just finished my second cycle and I am expecting going to transplant sooner rather than later if I am feeling well. Or, does a person stay on Vidaza as long as possible until the downturn in numbers?
Its a personal choice. From what I read depending on the type of MDS or disease you have dictates the long term survival curve post-transplant. MDS survival rates post-transplant after 3 years are not where a lot of people want them to be. I think its 30-40%, so you see the 1 year rate at 60-70% but when you drill down and go 3 years out that number is much smaller. Other disease types such as AA tend to have a higher long term survival rate. Then there's the quality of life issue. Some may be able to tolerate years of medical visits, GVHD, and the other residual stuff that may or may not come, whereas some can't. The end game for the more severe classes of Vidaza is the BMT, however, some people have a more mild form of MDS and can go on for years with no disease progression. Those are far an few between but they are out there.
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  #13  
Old Tue Jan 28, 2014, 04:09 PM
sbk007 sbk007 is offline
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Quote:
Originally Posted by bailie View Post
Rich D,

Have you posted your blood counts and situation of your diagnosis? Just curious as to how they compare with others?

Thank you and continued success.
http://forums.marrowforums.org/showt...0250#post30250
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  #14  
Old Tue Jan 28, 2014, 05:04 PM
bailie bailie is offline
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sbk007,

Thank you for your thoughts. It will be interesting to see if my doctor agrees with you following my BMB next week. I am expecting to hear that going to a BMT is the preferred option.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #15  
Old Tue Jan 28, 2014, 11:18 PM
Jill2008 Jill2008 is offline
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Smile

I have been on Vidaza 3 years now (5 days, every six weeks, IV) I relapsed eight months following a SCT and so at this time it is my only option. My counts dip slightly two weeks after the infusion, but they come right back up. It just goes to show you that everyone is different.
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Jill, 58 y/o female dx with MDS-U June 2008, IPSS:Int. 2. Allogeneic SCT May 25, 2010. Relapsed January 2011. Started Vidaza (azacitadine) Feb. 2011; Currently on cycle #58 , IV, 5-days every six weeks. WBC 5.3, Hgb 13.0, PLT 110 (2/16/18)
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  #16  
Old Wed Jan 29, 2014, 12:04 AM
bailie bailie is offline
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Jill, that is interesting and encouraging that you have maintained. I am not sure if this is a good question, but have you had any discussion about another SCT? I am not well versed to know if that is possible.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #17  
Old Thu Feb 27, 2014, 11:17 PM
Jill2008 Jill2008 is offline
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Bailie,
Sorry for the delay. Life is keeping me busy! I haven't met with my transplant doctor in a year, so at my next trip to Stanford in May, I will meet with my hemotologist and transplant doctor and I will also get a bone marrow biopsy to get a more complete picture. It's just a hunch, but I think my MDS was triggered by an autoimmune attack. I have read that there is as lot of ongoing research in this area. I don't know if another transplant is an option, but I will definitely be bringing it up.
Jill
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Jill, 58 y/o female dx with MDS-U June 2008, IPSS:Int. 2. Allogeneic SCT May 25, 2010. Relapsed January 2011. Started Vidaza (azacitadine) Feb. 2011; Currently on cycle #58 , IV, 5-days every six weeks. WBC 5.3, Hgb 13.0, PLT 110 (2/16/18)
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  #18  
Old Sun Jun 1, 2014, 11:29 AM
Jill2008 Jill2008 is offline
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Quote:
Originally Posted by bailie View Post
Jill, that is interesting and encouraging that you have maintained. I am not sure if this is a good question, but have you had any discussion about another SCT? I am not well versed to know if that is possible.
I asked my transplant doctor if I was a candidate for another transplant. He wondered why I was even asking because my counts looked great! I told him down the road when things take a turn. He feels it would be extremely risky.
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Jill, 58 y/o female dx with MDS-U June 2008, IPSS:Int. 2. Allogeneic SCT May 25, 2010. Relapsed January 2011. Started Vidaza (azacitadine) Feb. 2011; Currently on cycle #58 , IV, 5-days every six weeks. WBC 5.3, Hgb 13.0, PLT 110 (2/16/18)
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  #19  
Old Sun Jun 1, 2014, 01:55 PM
Caregive Caregive is offline
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Regarding when a transplant is not an option, age is a factor. And if you have other diagnoses of serious nature. But I'll be interested in whether one can get a second transplant. If you look at the situation that one is later in history than the first, maybe there will be more research and development on treatments so need for a second may not be there. Or it can be done more safely or successfully.
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  #20  
Old Sun Jun 1, 2014, 06:51 PM
Cheryl C Cheryl C is offline
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I'm sure I've read posts on this forum from people who have had 2nd transplants. I'm not sure how one would search to find them??
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 4-6-weekly. BMB Feb 2014 - no blast transformation. 2017 still stable.
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  #21  
Old Sun Jun 8, 2014, 06:59 AM
Bambam Bambam is offline
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Second transplant warriors

Hi, not sure if you know, but there is a Facebook GROUP page called Acute Myeloid Leukemia where many of the 1500 members of this closed group mention second transplants. While some are primary AML, others have transformed from MDS. I am in the latter category, but am not a candidate for SCT.
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DX MDS RA Low Risk August 2012. DX Changed to MDS RAEB1. Progressed to AML July 2013. Participated in clinical chemo trial CPX351 and relapsed four months later in March 2014. Maintenance chemo -VIDAZA (AZA) stopped after 4 rounds. Awaiting full report from BMB.
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