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  #1  
Old Fri Oct 12, 2018, 01:06 PM
David T David T is offline
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Waiting for a transplant for MDS

My MDS journey started two months ago, when I was diagnosed after going to the emergency room at my local hospital.

My Hb was 47 and my platelets were 14, so obviously I left it a bit late to seek help!

I am now receiving transfusions of blood and platelets weekly, until a SCT is arranged. Unfortunately my only sibling is not a match, so the search is on for a donor through the international register. I am 59 years old and otherwise in good health, so I'm reasonably confident of getting through the transplant.

They are thinking about putting me on azacitidine (aka vidaza) to stop the progression to AML while I am waiting for the SCT. My blast count is 6 to 7%, but I still don't know what type of MDS I have. I am at least INTERMEDIATE risk, but possibly HIGH or VERY HIGH according to the IPSS(R) scoring system.

It has been extremely interesting to read the other posts on this forum. They have given me a lot of encouragement, so I hope I can do the same for someone else who follows me on along this difficult path.

I will keep you posted as my adventure unfolds.
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David, Age 59, diagnosed with MDS August 2018. Low Hb and platelets, weekly transfusions. Developed into AML while waiting for a SCT. SCT in Feb 2019.

Last edited by David T : Fri Oct 12, 2018 at 01:17 PM. Reason: Correction
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  #2  
Old Sat Oct 13, 2018, 01:03 AM
DanL DanL is offline
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David,

Welcome to the forums. I am sorry for the diagnosis, but it sounds like you are taking it in stride and have a positive outlook. Vidaza is a standard treatment option both for treatment of MDS, and as a bridge to transplant. There have also been a good number of studies suggesting that Vidaza may help with a process known as chemo-sensitization, which may be beneficial during transplant, as it makes your mds cells more susceptible to destruction through the pre-transplant regimen.

As for your diagnosis, anything outside of the low and very low risk suggests that transplant as soon as possible is probably the best option, if I recall correctly.

I received my transplant almost 5 years ago now, and was trending toward that higher risk category. I did 2 rounds of vidaza prior to transplant and have seen several examples of people who followed this regimen with successful outcomes.

I wish you the very best over the next few months.
Dan
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD.
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  #3  
Old Tue Oct 16, 2018, 05:51 PM
David T David T is offline
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Dan,

Thanks for taking the time to reply and for offering encouragement to others, long after your own successful treatment.

It is a shame to see so many interesting threads about success stories suddenly stop, in some of the forums I have visited.

I assume that after a successful SCT the patient wants to put the experience behind them, when they could be of so much help to those who are about to go through the experience.

Best Regards

David
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David, Age 59, diagnosed with MDS August 2018. Low Hb and platelets, weekly transfusions. Developed into AML while waiting for a SCT. SCT in Feb 2019.
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  #4  
Old Wed Oct 17, 2018, 12:15 PM
GoodDay5150 GoodDay5150 is offline
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Hey David. We are all sorry to hear that you have MDS, but like Dan sd, you seem to have a positive outlook. That will definitely aid in your recovery. Myself and many others here have a lot of posts regarding our transplant experience(s), and are happy to answer question or concerns that you may have. My post PNH transplant experience has not been without issues, but I am much better off now than I was before my transplant. I have also learned who my donor was, and I look forward to communicating w/ him in the future. (This just in the last few weeks.) I was a bit freaked out when I learned of my diagnosis, and I had never heard of PNH, but I did my best to try and remain positive.

Mario
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MARIO, 46, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD.
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  #5  
Old Wed Oct 17, 2018, 04:05 PM
Hopeful Hopeful is offline
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Hi David,

Sorry to read your story. Have the doctors done a complete differential diagnosis to rule out things that can mimic MDS? Or do you have MDS-specific cytogenetic abnormalities or significant dysplasia? I am just asking because you are young.

Wishing you the best! Stay strong!
__________________
52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #6  
Old Tue Oct 23, 2018, 01:12 PM
David T David T is offline
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Thank you Mario and 'Hopeful' for your replies. I had never heard of PNH so I had to do some research.

I am still a bit confused by my diagnosis. My bone marrow test in August showed normal cytogenics, which is good news, but I won't know the full implications until I see my consultant again in four weeks time.

I understand that an allogenic transplant carries a lot of risk, but I have been told it is my only option. I suppose I should be pleased that I am well enough to be considered for the procedure.

David
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David, Age 59, diagnosed with MDS August 2018. Low Hb and platelets, weekly transfusions. Developed into AML while waiting for a SCT. SCT in Feb 2019.
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  #7  
Old Mon Nov 26, 2018, 12:10 PM
David T David T is offline
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MDS has developed into AML

Unfortunately my MDS developed into AML in late October, so I have started on months of intensive chemotherapy leading up to a stem cell transplant.

I expect to be in hospital for the next six months, with only short one week stays at home between sessions.

I have to try to keep positive, but this is a major setback. It won't be easy to keep up my morale and general health spending so long in virtual isolation in a hospital room.
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David, Age 59, diagnosed with MDS August 2018. Low Hb and platelets, weekly transfusions. Developed into AML while waiting for a SCT. SCT in Feb 2019.
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  #8  
Old Mon Nov 26, 2018, 04:21 PM
Neil Cuadra Neil Cuadra is offline
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David,

This is a discouraging development and I wish it were otherwise. It sounds like the doctors knew just what to do for you, but nobody looks forward to these serious treatments. I hope it goes well.

Have they identified a transplant donor from the bone marrow registry? Do you have confidence in your physicians? Is your insurance good? Do you have good family support? If the answers are yes, then every one is a reason to be optimistic.
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  #9  
Old Fri Dec 28, 2018, 09:51 AM
David T David T is offline
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Chemotherapy underway

My first cycle of chemotherapy went well. After a month in hospital I had a week at home, before starting the second cycle. At the moment I am still in hospital waiting for my blood counts to recover again.

The good news is that potential donors have been identified, so a stem cell transplant should be arranged for February.

I am staying positive and feel well. Thanks again for your encouragement.
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David, Age 59, diagnosed with MDS August 2018. Low Hb and platelets, weekly transfusions. Developed into AML while waiting for a SCT. SCT in Feb 2019.
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  #10  
Old Fri Dec 28, 2018, 06:44 PM
Sally C Sally C is offline
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All the best to you David. So glad you've found a donor and I wish you well with your chemo and blood counts. How wonderful that you're feeling well.
Take good care,
Sally
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  #11  
Old Sat Dec 29, 2018, 01:51 AM
Meri T. Meri T. is offline
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Hello David,
Wonderful to know that a donor is there for your transplant. Your hospital seems very well versed with your illness, and you seem very positive - good for you!
Merry Christmas and enjoy the holidays
Meri
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Female 52, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in June 2017. GVHD GI tract, liver, skin, eyes. Thanking God everyday for Life is wonderful.
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  #12  
Old Tue Jan 1, 2019, 06:18 PM
Cheryl C Cheryl C is offline
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I'll be watching for your posts David. All the very best for your transplant coming up soon.
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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 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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  #13  
Old Wed Jan 2, 2019, 03:28 PM
Hopeful Hopeful is offline
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We are rooting for you! Best of luck!
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #14  
Old Fri Jan 11, 2019, 09:13 AM
David T David T is offline
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Update

Thank you Hopeful, Meri T, Sally C and Cheryl C for your posts. It is now three weeks since my second cycle of chemo ended. I am still in hospital waiting for my bone marrow to start working again. Everything was going well until a few days ago, when I suddenly developed a very bad fever. It was eventually traced to an infection in my PICC line. After removing the line and pumping me full of antibiotics I am gradually starting to recover.

It was quite a scare. When your immune system is at zero, your body can't fight the infection, so you are entirely dependent upon medication. I am so grateful that I am not allergic to penicillin.

My SCT has been scheduled for 15th February, so I am hoping that my bone marrow will recover soon, so that I can have a couple of weeks at home before then.

I will keep you updated.
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David, Age 59, diagnosed with MDS August 2018. Low Hb and platelets, weekly transfusions. Developed into AML while waiting for a SCT. SCT in Feb 2019.
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  #15  
Old Sun Jan 13, 2019, 05:30 PM
Cheryl C Cheryl C is offline
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Really sorry to hear of this setback, David. Best wishes for a quick recovery so you can have that time at home before your transplant.
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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 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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  #16  
Old Sun Jan 13, 2019, 07:34 PM
Rarity Rarity is offline
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Quote:
Originally Posted by David T View Post
Dan,

Thanks for taking the time to reply and for offering encouragement to others, long after your own successful treatment.

It is a shame to see so many interesting threads about success stories suddenly stop, in some of the forums I have visited.

I assume that after a successful SCT the patient wants to put the experience behind them, when they could be of so much help to those who are about to go through the experience.

Best Regards

David
Hi David,

So sorry you have to go through this. My husband is your age (59) and is 8 months post transplant. I have not been posting as I didn't want to jinx him. His recovery has been going very well. A few minor issues but we are hopeful will turn around. It's been quite the journey and still trying to see the light at the end. Wishing you all the best in yours. Keep the faith.

Rarity
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  #17  
Old Sun Feb 17, 2019, 06:06 PM
marmab marmab is offline
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Thinking of you

I'm cheering you on, David. I haven't posted in a few years I think, but I am one of those success stories you mentioned in an earlier post -- one who suddenly drops off the forums for no apparent reason. I do check in occasionally, but it's true that the farther in the past the transplant is, the less you think about it. I guess it's good that it recedes in one's memory.

My transplant was a complete success, and I hope that my outcome can help others try to remain positive as they face this scary procedure. Every case is different of course, and I don't want to make it sound like it was a bed of roses; it wasn't. My medical team almost killed me twice (just joking...kind of. Much as I love them, a couple of serious problems arose that could have been prevented.) Also, I was readmitted to the hospital two months after my transplant suffering from a serious infection, nocardia, in my lungs and brain. Fortunately it was treatable. So, almost five years out, I am doing great. I'm rooting for you and for everyone else facing transplant.
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Marmab, F65, SAA/hypo MDS dx 7/2011. Tried ATG/CsA, IvIG, Rituxan, prednisone, Promacta -- none of these helped. Transfusion dependent until MUD BMT 7/17/14. Prep. regimen of Campath, Fludarabine & Cytoxan. Doing great. 100% engraftment. No GVHD.
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  #18  
Old Sun Mar 3, 2019, 05:15 PM
David T David T is offline
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Had my SCT

Thank you Cheryl C, Rarity and Marmab for your support and encouragement.

I had my stem cell transplant on 22nd February from a 10/10 match unrelated donor. Hopefully there will be some signs of engraftment this week.

My bone marrow never recovered from the second cycle of Flag Ida chemotherapy, so I was already neutropenic before the transplant conditioning started. At least I was in complete remission from the AML.

I was fortunate to have the reduced intensity conditioning, with no radiotherapy, so I haven't suffered from any mucositis (yet) thank goodness.

Needless to say I have had some nasty side effects from some of the chemo and anti-rejection drugs, but most have been short lived.

I will let you know about my progress over the coming months.
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David, Age 59, diagnosed with MDS August 2018. Low Hb and platelets, weekly transfusions. Developed into AML while waiting for a SCT. SCT in Feb 2019.
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  #19  
Old Sun Mar 3, 2019, 06:05 PM
Cheryl C Cheryl C is offline
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Hello David

Great to hear that you've finally had your stem cell transplant and wonderful news that a 10/10 donor was available for you. Best wishes for a speedy recovery and complete engraftment. I am praying for you.
__________________
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 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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  #20  
Old Mon Mar 4, 2019, 01:09 PM
Rarity Rarity is offline
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Hoping for event free as possible and well wishes for you!
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  #21  
Old Mon Mar 11, 2019, 06:55 PM
marmab marmab is offline
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Yes, great news! I am sending healing thoughts your way and hoping your recovery goes smoothly.
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Marmab, F65, SAA/hypo MDS dx 7/2011. Tried ATG/CsA, IvIG, Rituxan, prednisone, Promacta -- none of these helped. Transfusion dependent until MUD BMT 7/17/14. Prep. regimen of Campath, Fludarabine & Cytoxan. Doing great. 100% engraftment. No GVHD.
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  #22  
Old Fri Mar 15, 2019, 04:56 PM
David T David T is offline
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Thanks everybody

Thank you all again for your good wishes and messages of support.

I am still in Hammersmith Hospital recovering from my SCT, which was exactly three weeks ago.

I have found this four weeks tough. but having already spent three months in hospital and been through two cycles of chemo, I was already quite run down. They called it reduced intensity conditioning, so I would hate to think what the full monty is like!!!

The dreaded mucositis caught up with me, but I managed to avoid an NG tube with the help of lots of morphine. It has passed now, but I continue to experience multiple side effects from the cyclosporin and magnesium infusions.

The good news is that engraftment has taken place and my counts are rising slowly, with the occasional fall back that gets me worried. The doctors seem happy with my progress and I look set to go home next week, if I can avoid infections or GVHD. I then have a big bag of medication and many months as an outpatient to look forward to, but at last I feel that I have turned a corner and may be free from blood and platelet transfusions.

It hasn't been easy, but I still count myself as very lucky. Along this journey I have met many people in a much worse place than me. Many of them were on palliative care. If the transplant keeps working and I haven't relapsed after two years, I will try to thank my wonderful donor in person.

I will continue to keep you posted.

David
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David, Age 59, diagnosed with MDS August 2018. Low Hb and platelets, weekly transfusions. Developed into AML while waiting for a SCT. SCT in Feb 2019.
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  #23  
Old Fri Mar 15, 2019, 07:11 PM
Meri T. Meri T. is offline
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Hello David,

Wonderful job, and a very fast engraftment ! You will feel much better when your white cells come up more.

I think my platelets were the last to arrive.

Hoping you will be out next week.

Meri
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Female 52, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in June 2017. GVHD GI tract, liver, skin, eyes. Thanking God everyday for Life is wonderful.
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  #24  
Old Fri Mar 15, 2019, 08:32 PM
Sally C Sally C is offline
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Hi David,
You have surely been on quite a journey but you sound strong and positive. How wonderful that you'll be going home soon.
All the best and keep us posted,
Sally
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  #25  
Old Sat Mar 16, 2019, 01:26 AM
Hopeful Hopeful is offline
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Best of luck David! We are rooting for you!
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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