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  #1  
Old Thu Aug 4, 2016, 08:27 AM
PaulS PaulS is offline
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2nd transplant?

Hi - Last BMB showed 60% host... 4% blasts. I started Vidaza and Veneteclex - but my doctor thinks a second transplant is my best, albeit not great option. My brother might be available for this one, and he'd do a different conditioning regime. Seen more than a few bad outcomes on this board and am wondering if there are any successful second transplant stories out there - or any other thoughts? Thanks all -
paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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  #2  
Old Thu Aug 4, 2016, 12:34 PM
carrieridge carrieridge is offline
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2nd transplant

will they be using a completely different donor? they are done, but not frequently. hubbys dr said there's not a lot of data yet. but that's the direction we are heading also. his brother was his first donor, rather than do DLI, they decided an unrelated donor might work.
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  #3  
Old Thu Aug 4, 2016, 05:31 PM
PaulS PaulS is offline
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Hi - I had an unrelated donor last time - my brother was a match but had some health issues so he couldn't donate at the time - I think he will be OK to donate now so we'd use him if possible - my doctor said the data didn't show much difference between a different donor and the same one - but sort of makes sense to try something different if its an option. What's happening with your husband?
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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  #4  
Old Fri Aug 5, 2016, 07:38 PM
carrieridge carrieridge is offline
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2nd transplant

He relapsed after his allo (about 6 months). His t-MDS moved to AML with 20% blasts in January. Same time had sepsis. Started decidibine after 4th cycle got pneumonia in icu 2 weeks. Been trying to get stronger but he keeps back sliding. They've identified a few donors in the data base but we can't move forward till he gets stronger. He's actually getting admitted as I type this. Since he hasn't had any treatment since the pneumonia in May they think the MDS/AML is rearing up based on his bloodwork today
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  #5  
Old Fri Aug 5, 2016, 11:39 PM
Cheryl C Cheryl C is offline
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Hi Paul - I'm very sorry to read that you're not doing as well as previously.

I can't help with advice on 2nd allo transplants except to say that in the 5 years I've been on this forum I'm pretty sure I recall a couple of successful ones and you seem like a person of courage with a positive attitude. I understand that you need to be in complete remission before attempting a second transplant.

Can you give us any more of a picture of how you are feeling now? I understand 4% blasts is still within normal range. Have your specialists actually stated that the last transplant has failed due to non-engraftment?

Sending my thoughts and prayers for you as you decide what to do next.
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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. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #6  
Old Sat Aug 6, 2016, 05:23 PM
PaulS PaulS is offline
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Hi Cheryl - I feel OK - tired and in a good bit of pain - but ok. I just finished my first round of Vidaza (five days) and started taking Venclexta - a drug approved for a CLL with a certain mutation which they think for some reason might be helpful. I don't think we've given up completely on the first transplant, but the Dr. thinks a second transplant is most likely to result in a more durable remission/cure - We'll give he chemo a chance, but I don't think we'll wait too long if we have to got with another transplant. If we do, I want to go in relatively healthy. Thanks for your support.
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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  #7  
Old Sun Aug 7, 2016, 08:05 PM
carrieridge carrieridge is offline
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2nd transplant

Unfortunately my husband went into blast crisis. It was too much for him. He passed away this morning.
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  #8  
Old Mon Aug 8, 2016, 12:30 AM
KatailS KatailS is offline
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carrieridge
So sorry to hear of your husband's passing.
Hugs
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Kathie - 54 yr old mother of 4, pancytopenia since 11/2014, moderate AA 8/2016, small PNH clone (now increasing), monitor bloodwork every three months
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  #9  
Old Mon Aug 8, 2016, 08:24 AM
PaulS PaulS is offline
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I'm so sorry to hear about your loss - sounded like a long and difficult struggle.
Paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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  #10  
Old Mon Aug 8, 2016, 11:00 AM
Hopeful Hopeful is offline
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I am so sorry to hear of your loss. My thoughts and prayers are with you.
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53 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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  #11  
Old Tue Aug 9, 2016, 11:01 PM
Cheryl C Cheryl C is offline
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carrieridge - so sorry to read of your loss. It's been a long battle and you've obviously been a wonderful support to your husband. My deep sympathy to you.
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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. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #12  
Old Thu Aug 18, 2016, 02:36 PM
bailie bailie is offline
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Paul, I have been out of internet touch for the last two weeks due to travels. I was very disappointed/saddened about the deaths that occured while I was gone. I am hoping that the Vidaza is working well for you. Keep us informed, you are in our thoughts.
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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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  #13  
Old Fri Aug 19, 2016, 08:29 AM
PaulS PaulS is offline
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Hi Bailie - glad to hear that you've been traveling - two weeks without internet, what a concept!

Yes, recent deaths are very sad. I still miss Tracy.

i had one round of Vidaza along with Veneteclex that I take daily. I'm set for another round in a couple of weeks. It seems likely at this point that a second transplant is inevitable - We don't want to wait until I get weaker or sic, my brother seems healthy enough to be the donor this time - and while the medications may have some impact on the course of the disease, it seems unlikely that it would cause a long term durable remission or cure - that said, nobody's ever tried this before in a relapsing MDS patient so there is perhaps a slight ray of hope. I understand the preliminary data treating patients with just MDS and the drug combination is promising - and maybe I can make some small contribution to medical science.

In the meantime I'm trying to prepare emotionally for another transplant.

The first transplant allowed me to recover sufficiently feel strong again - appreciate life and loved ones in a new and better way - go skiing, finish a renovation project on a beautiful inn in the Adirondacks, take my wife to the beach, attend my son's college graduation feeling strong and filled with pride - hope and love - and best of all, see both my children maturing into amazing young adults. So the transplant one was overall a very positive event - its been the best six months of my life in many ways. Hopefully transplant 2 will go more smoothly and lead to a more durable cure. I'm determined to be an inspiration for those on this board dealing with serious issues and maybe contemplating a transplant of there own - I don't want to end up another sad story! I'll need all the support, thought and prayers from everyone to get there.

Thanks all
p
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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  #14  
Old Fri Aug 19, 2016, 10:41 AM
bailie bailie is offline
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Thank you for your comments. We are all trying to learn from each other's situation. Very tough decisions and not as much guidance as we all desire.

It is interesting how limited these very intelligent doctors are with this disease. There are so many variables with different reactions to each of these variables. For me I have been wanting for a simple answer that I realize isn't available. In my case I relapsed at about +210 days with a slight drop in chimerism. The Vidaza quickly turned that around to 100 percent chimerism (which in itself is somewhat misleading) so is my transplant back on track or am I in the same position as before transplant? My doctors really have no answer and I can understand why.

I feel that there is what I have termed a "susceptibility crisis" that greatly affects the growth of leukemia/MDS. For me it was a lung infection and the very high dosage of prednisone (160 mg/day) combined with the temporary diabetes II that coincided with my relapse (30 percent blast count). When the infection was resolved and a rapid taper of prednisone, the Vidaza worked well. So I am in "limbo" in wondering if I am back on track with the transplant (and a cure) or if I am in a temporary position of maintenance? I guess (as we all understand) "time will tell" and the doctors will get another little "tidbit" of knowledge.

p.s. The journey across country with my daughter and 300 lbs of dogs was a complete success. I drove for 12 hours each of the four days and averaged 600 miles per day. The pulling of a trailer slowed us down a little bit, but not badly.
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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 Fri Aug 19, 2016, 11:53 AM
PaulS PaulS is offline
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Hi Bailie - it is very interesting how imprecise our understanding of MDS and how to treat it - and our understanding of why some transplants are successful and others not. So many variables - the nature of the disease, cytogenetics, the risk factors, age etc --- add all those variables to transplants as well as the source of donor, source of stem cells, sex differences between donors, conditioning regimes, post transplant therapies, GVHD etc - and variations in the underlying disease - AML v MDS for example - its almost mind boggling -

Your theory regarding a susceptibility crisis is interesting. In my case I was pretty much rolling along splendidly - hadn't felt so good in years. Then flow cytometry showed .09% blasts other tests 85% donor - alarming but not definitive. A month later blasts were 4%, chimerism was between 45 and 65% donor, depending on tests, and skin nodules that had been associated with the disease returned with a vengeance. Go figure.

While I'm not looking forward to a second transplant - I'm hoping this one will be less eventful and more successful - Importantly, I've learned that roast chicken is almost always available - even when it is not on the menu. I think this will make an enormous difference in making my recovery more pleasant.

I forgot about your road trip - where did you end up staying? Did you drive back alone? Except for the dogs - sounds like enormous fun.

Is this the daughter that contacted me a few times during my transplant - I really appreciated that - and I wish her well!
Paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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  #16  
Old Fri Aug 19, 2016, 01:14 PM
bailie bailie is offline
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I can easily understand why a second transplant could work out very well for you. You did much better than I did for the process.

Regarding the trip, I flew to North Carolina (from Portland, OR) and helped with preparation for the move. We then drove to Idaho Falls, Idaho. We were on the road at about 4:30 each morning. The driving was not a problem for me but I was ready to "hit the sack" by about 7:30 p.m. I then stayed for a week doing projects associated with daughter's new house and then flew out of Idaho Falls back to Portland, Oregon. We accomplished a lot before she reported to work. I could do about five/six hours of solid work each day before fading quickly in the evenings.

We were prepared to sleep in her new van and new cargo trailer during the trip but motels were gracious enough (we did pay a premium) to let us spend the nights in rooms. The dogs handled the trip very well. I taught them how to eat sausage and chicken nuggets. They were fast learners.

Actually, it was not " enormous fun" but very satisfying for many reasons. It was a project with many diverse demands, a true "character builder". The results were terrific however.

Yes, this is the daughter that you had contact with during your transplant experience. She will be employed at the Idaho National Laboratory (Department of Energy) in Idaho Falls. I know she would appreciate your well wishes as she still follows your experiences.
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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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