MF transplant update - days +41 to +80

[Simon96]

Hi All,

Unfortunately my MF transplant story has not turned out as positively as I was hoping when I wrote my first MF transplant post. Essentially the donor cells have failed to engraft. Tomorrow I commence work up testing for a second transplant which is scheduled for later this month. This time we are going to try a haplo transplant with my son as donor. The first transplant was with a matched unrelated donor (MUD).

One may wonder how do I feel about my decision to go to transplant in retrospect now that things have not gone as well as hoped. The simple answer is that I still feel good about my decision, it was the right one for me at the time. I always considered it as a fork in the road with two reasonable options and that I would embrace whichever option I chose with my eyes wide open. No regrets.

------

The rest of this post is really targeted to future travellers who are looking back at how another transplantee progressed...

By Day +34 my consultant was concerned about engraftment and wanted to stop my immuno-suppressant (350mg ciclosporin bd). I was concerned that he was being impatient and after some haggling we agreed to half it. On Day +41 we agreed to half it again and by Day +49 had stopped it all together. I did develop some minor itching after stopping the ciclosporin however the desired GvHD did not occur.

Some misleading good news during that time was that chimerism testing of the few neutrophils that I had, revealed 94% of them where created from donor cells.

Interestingly, a BMB revealed that my marrow had changed. There is now some space in my marrow where fibre had been. Considering my marrow has been heavily fibrotic for over 22 years, any change is good news to me.

Article sciencedirect.com/science/a... is an interesting read.

Another positive change of the transplant is that my spleen shrank up nicely and now fits almost completely on the left hand side of my abdomen. It extends just slightly past my umbilicus.

I am of course still heavily dependant on regular blood top ups.

Unfortunately infection caught up with me on Day +56 (hgb 53, platelets 3, wbc 0.9) and again a couple of weeks later (hgb 47, platelets 9, wbc 0.2). My body took a bit of a hammering over that time.

While back in the BMT unit recovering from the infections had a number of discussions with my consultant on how to proceed. We did discuss requesting more cells from my donor but his feeling was that my body was too harsh an environment for the donor cells. He feels that my spleen is soaking up the cells. He was keen on a splenectomy - a rather dangerous option for someone with counts like mine. I was also put on Rux for a day.

At the same time, my consultant reached out to other doctors overseas. It is rather humbling that one of the replies was from Prof Kroger who suggested a second transplant with a different donor, which is the approach we are now taking.

(Talk of a splenectomy was stopped as well as the Rux.)

Cheerio for now. Best wishes to All, including future travellers ...Simon

[Wentry]

Hi Simon,

I'm so sorry to hear that things haven't gone so well, it must have been really hard to accept, I've got everything crossed that the haplo transplant works for you. I'm guessing you will now be stuck in hospital over Christmas? At least there was a slight positive with your spleen shrinking a bit and the space in your bone marrow. It's a tough road you're travelling

I guess it also means you won't be able to meet up in January as it'll be too risky for you, thinking of you and your family and I hope you get better news with the new transplant.

Best wishes,

Wendy xx

[Simon96 in reply to Wentry]

Thanks Wendy. Yes it will be chemo for Christmas for me. It is disappointing that our planned meet up in January will not be a goer. My wife has been keen for a romantic weekend in Wellington for a long time now so will still aim to catch up with you sometime, though it will be quite a while away. Cheers, Simon

[Wentry in reply to Simon96]

Hi Simon,

I've just been talking with Andrew and Esther Schorr from Patient Power, he knew someone whose first transplant failed who then had a successful haplo transplant, so hoping the same for you. We are hoping to meet up with them in Christchurch probably on the evening of 19th January, so maybe your wife could come even though you can't. I'll keep you posted 😁

Hope Christmas isn't too much of an ordeal for you 😞

Cheers

Wendy

[jane13]

thank you so very much for keeping us up to date - please keep posting. Very best of luck

[Simon96 in reply to jane13]

Thanks Jane. Very best of luck to you also.

[katiewalsh]

Hi Simon. I’m so sorry about your disappointing news. But I’m really impressed with your sense of calm about it. Thanks for sharing your journey with us. Hope you can enjoy family for the holidays. Katie

[Simon96 in reply to katiewalsh]

Thanks Katie

[LucyAshtonGeering]

I’ll be thinking of you and hoping it all goes well with your second transplant. I can’t imagine how gutted you must feel about the first, but it’s really good that your dr is open to other consultants’ advice, and that this route is an option for you. Here’s hoping that this Christmas turns out to be the best ever for you.

With all best wishes from the U.K.,

Lucy

[Simon96 in reply to LucyAshtonGeering]

Thanks Lucy

[Ebot]

Thanks for the update. A few (slivers of ) silver linings in the bone marrow change and spleen size. Fingers - and just about everything else - crossed for the second transplant process. Wishing you and your family peace, strength and continued optimism. Here’s hoping you all find moments of joy in the upcoming festive season. Keep us posted!

[Simon96 in reply to Ebot]

Will do. Thanks Ebot

[mhos61]

Hi Simon,

I have been wondering how you were doing. This must be such a blow for you and your family, I can’t begin to imagine the emotional ups and downs. Your admirable fortitude will carry you through to the next stage.

I won’t pretend to understand all the complexities of a SCT. The link you have attached sounds promising though (if I’ve interpreted correctly) with regards to the haplo transplant cases alongside the case Wendy refers to too. I’m sure you’ll take encouragement from this.

Thank you so much for taking the time out to update and educate us on your journey. I wish you and your family good luck and best wishes going forward. You will be in my thoughts.

Mary xx

[Simon96 in reply to mhos61]

Thanks Mary. Yes, it does. Time will tell. Had many smiles in November thinking of the mouse icon you found for me in your reply last month. Cheers, Simon

[Nickthedevil]

I really hope the second transplant goes well for you, after the very difficult time you have been through. It’s good to get your updates and read about your journey. Keeping my fingers crossed for you. Best wishes, Karen

[Simon96 in reply to Nickthedevil]

Thanks Karen

[Wyebird]

Hi Simon,

You are presently going through a huge ordeal.

I thank you for taking the trouble to inform us.

May I take this opportunity to send you best wishes. I’ll pray that you will eventually have a positive outcome.

Your ordeal gives me hope. Even though my illness ET Calr is at present far minor than yours. My minor dilemma is after 3 years of drug dose increase and additional drugs my platelets are still unsteady and fatigue is dibilitating.

Your post gives me a kick and tells me to stop feeling sorry for myself.

May the new year bring you good health.

THANK YOU

[Simon96 in reply to Wyebird]

Hope is very important. Delighted that my writing brought you a little. Best wishes for the new year to you too ...Simon

[piggie50]

Thank you for keeping us updated Simon. We’re all rooting for you.

Judy x

[Simon96 in reply to piggie50]

Thanks Judy

[champ30]

Thanks Simon for sharing.I think you're very brave to be going for 2nd BMT.However you've made the right decision I think knowing how difficult it may be you're still prepared to give it a go.

I have MF high risk but fortunately I am good atm.Only diagnosed Sept 2017.If needed I am not eligible for BMT as too old (69),so hope I am ok for as long as!

If you're able keep posting ,I am interested to learn you're from NZ.

My daughter lives at Glentunnel near Christchurch.For obvious reasons not able to visit for a while.

Take care.

Enjoy Christmas with your family and lovely nurses!

Lynda

[Simon96 in reply to champ30]

Thanks Lynda. Really just doing what is necessary rather than being brave. I hope your health keeps staying good and that your daughter is able to visit you instead. Best wishes, Simon

[Mysi]

You’re having a rough time at the moment. Thoughts and prayers are with you. X

[Simon96 in reply to Mysi]

Thanks

[beetle]

So sorry to hear that the road is so rough for you. Let’s hope that the haplo transplant is a success. I am amazed at how positive you are. I decided not to opt for transplant and sometimes still wonder if I made the right choice. I’m still pretty confident that I did but it is good to hear that you still feel your decision was the right one for you despite the obstacles. Thank you for updating us and you will always get massive support on this site. My thoughts are with you and your family. X

[Simon96 in reply to beetle]

Hi Beetle, I do not think there is a right or wrong decision. Sounds like you made the right one for you at the time. That's all we can do. Thanks for the support. Best wishes to you also ...Simon

[JediReject]

Hang in there buddy. . . As you may be aware I was in a similar position as my Graft didn't take early on but fortunately stopping my immuno-suppressant kicked it into being, and the ensuing stage 4 GVHD is almost history. I've known a couple of secondary transplant bods that have had a good outcome so keep your positivity and try and avoid those nasty bugs.

It took me back a few years reading your post about chimerism etc as if nothing else you learn a new language or terminology with this process, , I shall be thinking of you Simon over the coming weeks like many others and wish you the very best of luck going forward and hopefully a peaceful family Christmas.

Kind Regards - Chris

[Simon96 in reply to JediReject]

Thanks Chris. I suspect there is going to be quite a bit of just hanging in there during January and I will. All part of the 'character' training. Nice to hear of there being successful second transplants. My wife often says how interesting the processes are, just a pity the situation in which we are learning about them. Best of luck to you and your family also.

[harleydavidson]

Hi Simon.

I am thinking of you and wishing you well. Stay strong.

Mel x

[Simon96 in reply to harleydavidson]

Thanks

[pj1963]

Hello Simon

I've been wondering how you are and am so, so sorry to read your update, but also very grateful indeed for you to take the time to let us know how things are going.

How very hard for you to have to undergo a second SCT. I'll be thinking about you and send my warmest wishes.

Paula

[Simon96 in reply to pj1963]

Thanks Paula

[Copurnicus]

Simon,

Thanks for the news. I’m sending my very best!

Valerie

[Simon96 in reply to Copurnicus]

Thanks

[Tico]

Hi simon, Hope you & your family have a lovely peaceful christmas & everything turns out well for you in the coming weeks. Atb,tina.🤗

[Simon96 in reply to Tico]

Thanks Tina

[socrates_8]

Hey Simon...

Firstly, thank you so much for keeping all of us involved in your journey. It is quite selfless of you to do so... and especially so given the difficulties you are presently having to surmount...

As I am also a 'future traveller' possibility, and I am extremely grateful for any and all insights of course.

While much of your news is read as a disappointment, the 'link' to the article you provided reads as providing some hope, and especially since you seem to have also had some regression on your Bone Marrow Fibrosis... & of course your spleen is more comfortable for the present...

In the 'Discussion' summary, it states:

"... this first study on the dynamics of fibrosis regression and its impact on outcome suggests that a more rapid resolution of BMF is associated with improved graft function, less relapse, and improved long-term outcomes in patients with myelofibrosis who undergo allo-SCT."

Some time back I posted some news here that I had also had a Grade1 regression in BMF, (From Grade2 back to Grade1), which my doctors wish to attribute to the Ruxolitinib, (& I believe - is more likely due to my diet/fasting/exercise regime).

Very best wishes that the 2nd attempt will produce the more desired results.

Thanks Simon.

Steve (from across the ditch)

[Simon96 in reply to socrates_8]

Thanks Steve. Yes, very encouraging that it is not just a one direction process. It offers great hope. Best wishes on your journey.

[Paul123456 in reply to socrates_8]

Steve

What is your diet/fasting/exercise regime?

Have you measured your inflammation levels such as CRP, ESR and LHD?

I’m wondering whether there is a link between lowering inflammation and improving fibrosity.

Best Paul

[socrates_8 in reply to Paul123456]

Hi Paul...

I will try to keep this as concise as I may, as we are hijacking Simon's post here really...

By the way, I hope you are doing well & best wishes for the coming season's festivities of course...

I am Pescetarian (wild caught where possible), garden fresh vegetables & fruit. I always endeavour not to consume any processed foods, which is mostly achievable I find, w/out to much of an effort.

I never consume any added sugars; Black coffee or tea in moderation (no carb's); absolutely no soft drinks; no alcohol; try to avoid all take-aways but infrequently slip in a spicy/veg or garlic prawn pizza

Water, mineral water, soda water, are my main fluids.

Paul, I only eat once per day in the evenings, (usually earlyish). Then snack on fruit later if required...

I also usually have a least two consecutive days per week where I only consume 600-800 carbs. However, (more recently), as my cycling regime has dramatically improved, I have not been so concerned with those two days of heavier intermittent fasting. As many more calories are being dispatched through high levels of aerobic/anaerobic exercise. I also try to maintain a stretching regime, where I do 'off-the-bike' core building exercises, which helps to strengthen my 'on-the-bike' abilities...

My LDH & lipids are all good. Occasionally, my kidneys suffer from a little too much dehydration, which I endeavour to correct with water & organic coconut water that is also high in potassium and helps prevent cramps.

I do believe that inflammation certainly plays a part, along with each individual's metabolic function. Which can be quite a unique aspect... And therefore yes, inflammation, metabolic function and the oxygenation of our blood are all essential aspects of bone marrow fibrosis. It just seems to be logical does it not?

(Of course every individual is there own unique ecosystem & living environ, and what toxins/pollutants exist, might exist in us all to greater & lesser extremes – We are products of our own environments too)

Philosophically-speaking, I believe that we all eat far more than we really ever need, and thus far everything I am doing seems to be most beneficial, in my instance.

My anaemia grows worse on Ruxolitinib, my RLS has diminished some, my sweats and low grade temps are still evident, however, my fatigue still hits back and reminds me that all is not always well... Bone pain always seems to abate some during the warmer seasons for me...

I find that with the exercise, I am building my strength reserves to ever more superior levels, which in turn helps with my fatigue as the exercise rejuvenates my blood flow, and the intensity injects much-needed oxygen into my blood stream...

Nevertheless, some days my mental acuity is far less resourced than I would wish, and my memory seems to slowly grow worse over time. More so when extremely fatigued, and everything becomes somewhat more challenging...

At the present, I have no other known infections. And considering my recent fall from grace, (fairly serious bike accident 3 months ago), I healed rather well, although my shoulders are still being treated with physio' etc. The operation of the laceration to my right forearm has resulted in little or no nerve damage, for which I am most grateful of course...

Generally, I would say that my overall mental disposition has also greatly improved since becoming more actively involved in my own health & fitness/dietary regimes...

I believe that we are all our own best advocates... or we should be...

In my view of course...

Having said all of that, I am also preparing myself for an ASCT, if & when that ever becomes required, (my fervent hope is that it will not).

However, and if it does, by maintaining a greater level of health & fitness; my body will be in a much better position to withstand all the rigors of ASCT pre-conditioning, which in turn might provide me with a better statistical outcome. Hence, all I am really endeavouring to do is provide myself with the best possible opportunity for success... again, seems the logical approach to me.

It's just a theory, but one I hope will evolve into the most desired results...

Best wishes

Steve

[babbittybumble]

Hello Simon ,Really sorry you have had so many problems, I do so hope the next one goes well for you. Take care bye Gill

[Simon96 in reply to babbittybumble]

Thanks Gill

[Bluetop]

I am so sorry the first transplant didn't work out. It was good to hear there were some positives however and to hear that you do not regret your decision. You seem to be able to rationalise things so clearly in all the stress. Thank you for sharing your experience. I wish you all the very best for the second transplant.

[Simon96 in reply to Bluetop]

Thanks

[Betsywest]

Hi Simon, bless you for sparing the time to update us on your news. Am so sorry to hear things haven’t gone as well as hoped but keep up that wonderful positivity and calmness you have and we are all right behind you willing you on!! All the luck in the world for the next SCT xx

[Simon96 in reply to Betsywest]

Thanks

[Poppy6060]

Good luck Simon I hope all goes well thank you for posting best wishes Poppy

[Simon96 in reply to Poppy6060]

Thanks Poppy

[Heidi-W]

Thanks for the update and sorry to hear things didn't go as planned. Wishing you all the best for the 2nd transplant and hope you manage to enjoy some festive greetings

Heidi

[Simon96 in reply to Heidi-W]

Thanks Heidi

[MFBMT2011]

Sorry to hear that the first attempt didn’t work out.Suprised that DLI wasn’t an option but the docs are the experts and Kroger is a leading one.

I also know some two timers who were successful so good luck with that.

Best wishes

Chris

[Simon96 in reply to MFBMT2011]

Thanks Chris, nice to hear of more successful two timers.

[Paul123456]

Simon

So sorry to read about your relapse.

I saw my Hem today who by chance is a leading SCT expert. He was following this so, early days, but hopefully has potential

mskcc.org/blog/gut-microbes...

Best wishes Paul

[Simon96 in reply to Paul123456]

Interesting ...thanks, Simon

[tracey13]

Hi Simon,

Sorry to hear your transplant hadn't been successfully.

My husband has PV but now I think it's mf as his spleen has doubled in size and his bone marrow has got a lot of scaring of fibrosis .

His consultant said he would benefit from a transplant for a better future and be cancer free.

Your story is exactly one of our worries what if it doesn't work.

My husband wants to be on ruxlitnib and if this makes him feel less tired then he would rather have this for a few more years then opt for the transplant. As he's not mentally ready for a transplant yet.

My husband is 46 now. If you don't mind me asking what's your age group?

There's just so much to take onboard at the minute.

After reading you have had fibrosis in your bone marrow for over 22 years it makes me think my husband can go a few more years without a transplant. Only symptoms are fatigue and exhaustion. So if the ruxlitnib improves this reduces the spleen why mess with nature now.

Hope you find another donor soon.

Tracey

[Simon96 in reply to tracey13]

Hello Tracey,

Sorry to read that your husband's condition is progressing.

I am 57, I was 35 at diagnosis. I am really not a good person to compare your husband to as I have had significant fibrosis for so long and there is a very big question mark over the likelihood of a transplant being successful for me.

I gather from other member's posts that getting a second or third opinion, especially from a MPN specialist, is common in the UK. Perhaps that would be something that would help you and your husband feel more comfortable with your decision, whatever it is.

Best wishes, Simon

[tracey13]

Hi Simon,

My husband said there's no way he's going to have a transplant if it's not urgent .

If the percentage was higher success rate then he wouldn't hesitate to go for a transplant. Medication is coming.ing on a long way now .

It's a big step to have a transplant. Mentally he's just not ready for a BMT.

Tracey

[crapaud]

Hi Simon,

Sorry to read that things haven't gone as wished - hang on in there, SCT/GVHD is often a long haul. I admire your stance concerning did you make the right decision; i have always said that once the decision has been made then you've got to invest all your energy in the journey ahead, there's no point in looking back.

Some could say that I was fortunate that my SCT didn't go too badly (easier to say that now than when I had a severe GVHD to my liver after 12 months!!).

Hope things improve for you in the near future.

Take care

Gary