Waiting for a transplant for MDS

[David T]

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.

[DanL]

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

[David T]

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

[GoodDay5150]

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

[Hopeful]

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!

[David T]

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

[David T]

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.

[Neil Cuadra]

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.

[David T]

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.

[Sally C]

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

[Meri T.]

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

[Cheryl C]

I'll be watching for your posts David. All the very best for your transplant coming up soon.

[Hopeful]

We are rooting for you! Best of luck!

[David T]

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.

[Cheryl C]

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.

[Rarity]

Originally Posted by David T

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

[marmab]

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.

[David T]

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.

[Cheryl C]

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.

[Rarity]

Hoping for event free as possible and well wishes for you!

[marmab]

Yes, great news! I am sending healing thoughts your way and hoping your recovery goes smoothly.

[David T]

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

[Meri T.]

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

[Sally C]

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

[Hopeful]

Best of luck David! We are rooting for you!