Newly diagnosed husband & STC decision

[SBSW15]

My 56 year old (and otherwise fit as a fiddle) husband (father of 4) was diagnosed with MDS at the end of last year (classified as low risk with low WBC and neutrophils). The specialist at UCLH has been advocating to progress to a STC as soon as possible from the outset and we have recently had the results confirming his sister is a perfect match. However at the MDT (? think that’s it - so many new acronyms to learn) there was no consensus from the group on whether transplanting now was the right course of action or waiting. We were told it was therefore our decision. That was yet another curved ball.

Having never heard of MDS before, to go from thinking all is well in the world to this as a result of a routine blood test totally fries the mind particularly when he is symptom free. Such a relief to discover this support group to read other experiences and try to fathom out how even to think about making the decision to take the immediate risks of a transplant in the short term in search of a long term cure. Thanks to suggestions here, we have an additional opinion appointment booked with Prof Bowen at Leeds in a couple of weeks. But any wisdom from any of you on the questions to ask and the considerations in making the decision would be wonderful. I’m reading everything I possibly can (my husband is really struggling even to engage that far)

[chris]

Hi there. What a difficult position for you both to be in. When I was first diagnosed over 13 years ago, stem cell transplant was an option and my brother and sister were tissue typed and my brother was a perfect match. However, similar to your husband, I was 58 at the time and didn’t have any troublesome symptoms. My haemoglobin was Ok but my white cells and neuts were a bit low -around 2.5 and neuts around 0.6, and platelets in the 70s -80s. Having read up about transplants, I knew that (a) it was not a walk in the park and (b) there were roughly equal chances of it failing/ leaving long-term problems with GVHD and being a total success! I don’t know what the current estimates of risks are but it would be worth having that discussion with a stem cell transplant specialist at your hospital to ask what their stats are? At the time, the age cutoff was 60 so I felt under pressure to go for it. The age limit now is higher. In the event, as I had no bothersome symptoms and as I’m a bit wary of lots of medication side effects, I decided to wait snd see how things went. As it happened, my disease has been remarkably stable,I’m well and active, I have never had any treatment and the infections I feared would happen because of my low white cells didn’t materialise -though I have always taken care to avoid close contact with anybody with any infections! Covid avoidance was nothing new for me!!

I recently gave my brother the news that, at 72, and he’s 69, I’d decided that, whatever happens now, I shan’t be asking him for his stem cells! I’m sure he was glad to hear it!

However, there are many people who really do struggle with their MDS and how it affects their life and decide to go ahead with transplant. If you snd your husband haven’t yet read them, do get hold of copies of 2 excellent books. One is called the Seven Steps. All about the decision and the transplant process. The other is called The Seven Steps - the next steps. All about post-transplant and that will be helpful to help with your decision too -if you are aware of what might lie ahead. The links to the books are on this website or are available from Antony Nolan.
I’m hoping we can get a Zoom meeting set up soon for people who are in exactly your situation so you can talk to people who have been through the experience. Hope you have joined as an MDS UK member so you will receive the monthly newsletter and perhaps join a Zoom meeting?
Not sure where you live but hopefully one day soon we shall get back to face-to-face meetings again. Pleased you went for an additional opinion with Prof Bowen. I’m sure you’ll benefit hugely from that. Make sure you have all your questions ready!

Wish you well with your decision. Meantime really pleased to hear your husband is feeling OK and presumably not needing any treatment?

Take care

Chris (I’m a local group ambassador and have been involved with MDS UK for over 10 years)

[SBSW15]

Thank you so much for responding, Chris. I’ll check out those books as I hadn’t come across them. We will persist in asking for stats to help make the decision. In the meantime, if we didn’t know what was going awry inside, there is no sign of any problems otherwise thankfully. He was very ill with Covid back in March 2020. The blood tests he had the year before were totally normal as they had always been. But by September 2021 they weren’t. Maybe a total coincidence. Or maybe he was so unwell because there was already a problem emerging. Thank you again for your help

[chris]

Hi there. Interesting. Many of us when diagnosed realise there were signs which, in hindsight, were almost certainly caused by the disease. I kept getting painful cellulitis (skin infections) in my feet/ lower legs for several years before, so clearly there was something going on but I didn’t have any blood tests at the time which would have picked up my low white cells.

Catching Covid in those early months of 2020 was pretty awful -even if you didn’t have any immunosuppression -but likely to have been far, far worse if you did. Which of your husband’s cell lines are affected? With low white cells and platelets, I’m thankfully still free of any symptoms, including the fatigue that is so debilitating for MDS patients whose red cells are affected.

Take care

Chris

[chris]

Sorry! You already said your husband has low white cells and neutrophils! Having low white cells means it’s harder for your body to deal with infections of all kinds. So it would be quite understandable for him to have struggled so much with Covid pre-vaccination.

Has your husband received 4 vaccine doses? As somebody immunosuppressed, he should have been identified for 3 primary doses and a booster?
Having had prior Covid should also really have boosted his immunity.

Best wishes again
Chris

[KASP6]

Hello,

Unfortunately we are in exactly the same position as you - newly diagnosed, suggesting a BMT (donor has been identified) husband not engaging etc
Would love to share experiences and try to work out how one navigates a decision…
My number is 07967 821729

Looking forward to hearing from you.

All best

[chris]

Hi Kirsty

I'm glad you are at least not feeling isolated with this difficult decision. If it would help, you could maybe private message the other lady who started this message thread? This should ensure it goes straight into her e-mail so she will see it straight away - rather than next time she comes onto the Forum -and you can decide whether you want to share your contact details off the main Forum. Not always a good idea to leave phone numbers on the public Forum - just in case anybody makes a nuisance of themselves! Who knows, these days?!

I was also wondering, as I know of at least 2 other people in this unenviable situation, whether you would want to be part of a small email support group? I would just need your permission to share your emails? The best way to do this would be for you both to Private message me and I can set it up. I'm also hoping to get a Zoom meeting set up with a Stem Cell Transplant expert where people could ask questions - only generally, not personally I'm afraid -for medical ethics reasons - but at least you might feel better informed? This might take a while though as clinicians are crazy busy these days!

I hope you are making some progress with your reading and the links I gave you?

Take care
Chris

[MMTD15]

Hi. My circumstances are not entirely different from your husband's. I was diagnosed approximately 3 years ago at the age of 62 although I suspect I have had the illness for much longer. I was actually initially diagnosed as an inpatient in a tropical diseases unit, having picked up a mystery illness whilst in India. I suspect my inability to fight the illness was as a result of my very low neutrophil count.
The idea of a SCT was raised with me very soon after diagnosis and because at the time I felt OK and my risk level was and remains low, my initial reaction to SCT was "No way" so everything was put on hold.
In broad terms my MDS journey has been something like this. 12 months of denial as I felt OK. Gradual drop in Hgb levels led to treatment with Epo injections, which again led me to feeling OK. After approx. 12 months the Epo injections failed and I started on blood transfusions. It was at this point I started to take things more seriously. I have subsequently been put onto a trial of a drug called Lenalidomide because of my particular sub type of MDS. This has slowed down my decline and meant I have been able to avoid transfusions for around 7 months now, but I have been warned that the positives from lenalidomide will at some stage fail.
Very recently I have got my head around the idea of a transplant and decided I will definitely go for it if and when it is offered again. My decline is slow but its definitely happening and my Hgb levels are creeping down. My neuts have been very low throughout 0.1-0.4 at best. Amazingly, although I did have a couple of really nasty infections in the early days, I've avoided any infections over the last 2 years, but this is I'm sure in part due to keeping myself in total isolation throughout Covid. I have also tried growth factor injections to stimulate white blood cells but these didn't work for me.
Its a really tough decision, but those of us who have the option of SCT are in many senses amongst the lucky ones. I'm otherwise still fit and still young enough (just) to tolerate the treatment, but I've come to the decision that life like this (fatigued and worried) is becoming less and less worth living. What I don't have is a 100% match so my donor is likely to be one of my children, known as a Haplo donor. This is less successful overall and requires tougher initial conditioning chemo I'm told, but success rates are improving. If a 100% match had been found it may have helped me make my decision more quickly.
Because this is such a tough one to go through alone I welcome the suggestion of some sort of sub group of people in similar circumstances and, if they are willing, including the many patient members who have come through the other side of SCT and can share their experiences.
If you or your husband would like to speak to me at any time I'd be very happy to do so.
Best wishes
Mike

[chris]

Hello All

I just got this invitation to a webinar about stm cell transplants for older people. Don’t know what they mean by older exactly but it might contain some useful information to answer some of your questions? Do watch out for the time zone though as it’s from the USA!

https://www.aamds.org/webinar/transplan ... ff310eb262
Best wishes

Chris