SCT Journey update No.9

[LFCLove]

Here I am @day 55 post transplant!

Still on a weekly visit to Addenbrookes and now have my Hickman line removed.

Most blood results are good but a recent chimerism blood test has shown peripheral blood is @ 98% donor (which is very good) but T-cells are only @7% donor, therefore my consultant has advised reducing the immunosuppression drugs from day +60 instead of day 90-100 to give them a chance to fight my host T-cells.

The immunosuppressives I’m on are tacrolimus and mycophenolate mofetil .

Recently have been woken with itching but as there is no associated rashes, they don’t believe this represents Graft versus Host disease (GvHD). I take Piriton which is a mildly sedating antihistamine which I’ve found to be very helpful.

Appetite and taste seem to be back to normal so strength is slowly returning. Still get a bit tired in the afternoon but definitely improving.

Can’t wait to get the Harley back on the road, but will wait for the warmer weather next year. Yes, after years of riding in all weathers, I can afford to be a fair weather rider!!

Thank you all who have sent messages of support, it has been most welcome.

Happy to answer any questions anyone may have.

Keep strong and carry on!

G

🤓

[Cat_lady52]

Thank you for the update and lovely to hear things are going well for you. Take care xx

[Mishie14]

very good news LFCLove. Congratulations for continued great progress on your SCT journey. How nice to have a Harley waiting when you are ready to ride again. I like that kind of motivation.

[ainslie]

congratulations, that sounds pretty encouraging 👍

[Mazcd Partner MPNVoice]

very encouraging, really pleased for you. Maz

[RoundTheWorld]

Thanks for updating us. That sounds hard work, but very positive, (and yay! for appetite and taste returning in time for the Christmas run up!)

[Cja1956]

So good to hear that you are steadily improving. It’s very encouraging. Keep up the good work.

[Spanelmad]

Great news!!

[Poppy6060]

so good to hear you doing well and hopefully be back on your bike soon Poppy

[Hatchie]

Thanks for the update. You make it all sound so easy. I look forward to hearing more about your experience. Keep up the good work!

[william-Indo]

Happy for your progress and thx for the update.

It will help us, who need SCT to be brave to move forward.

Cheers

[SRH55]

Great to hear things are progressing well for you. It’s good to have something to look forward to - riding your Harley again.

[ABPD]

Great news, best wishes for continued progress

[Scaredy_cat]

Glad it's going well so far

[Gaithersburg]

Brilliant news and so good to hear that you're doing so well. Thanks for the update.

[Smdg]

that’s brilliant news. I experienced itching too and also found piriton helpful. I think it’s the anti-rejection drugs that caused it in my case. Stay strong x

[LFCLove in reply to Smdg]

I believe you could be right as itching is an auto response to Immune suppression and I will be stopping mine in a few weeks so will be interesting to see!

[BloodyMPNS]

so pleased that things are improving for you, hope you continue to recover smoothly and get back on the Harley soon. Mel x

[SouthSideA]

Thank you for sharing this report, and congratulations on what sounds like a successful process so far. May I ask, what were the conditions (blood counts at a certain level, fibrosis, etc.) the prompted your doctor's to encourage you to pursue a SCT? How did you know it was time to go this route? Thanks for any reply.

[LFCLove in reply to SouthSideA]

Initial prognosis prior to biopsy was 5-15 years (2022) MIPSS70 score was intermediate risk, but following the biopsy and after 1st and 2nd consultations, was changed to 18-24months! I believe the prognosis was gained from several factors and blood results being one as no one result stood out.

Once given the new prognosis, I felt I had only one option even given that there were no guarantees that it would be successful and the Myelofibrosis could return!

It is a hard decision for anyone and one that deserves a lot of thought.

[SouthSideA in reply to LFCLove]

Thank you for this thoughtful reply!

[hunter5582]

Glad to hear you are doing well . Long may it continue!

[mhos61]

Very encouraging news. Wishing you well! X

[artydutch]

I am sorry only to reply now and have missed earlier reports as not checked this site during the holidays much. It is good to hear you are doing so well and have had a ‘good’ experience during sct at Addenbrooks.

I have a very similar diagnoses and on Ruxolinitib as well and also being treated at Addenbrooks, now after a spell at Guys. my first doctor at Addenbrooks was a stem cell expert, but I am not a candidate for this …yet. Now I am under the MPN team. May I ask which doctors have treated you?

[LFCLove in reply to artydutch]

Have seen Dr Crawley mostly, who is one of the best, but also Dr Richardson, Dr. Basheer and Dr. King. To be fair, they all are very nice and plain speaking.

[artydutch in reply to LFCLove]

Thank you! I have been under dr Crawley to start with, but as not a candidate for stemcell at the moment, I am now under the MPN team and see Dr Godfrey.

Are you attending the conference this year?.

[LFCLove in reply to artydutch]

I have to say I’m not a “conference” type of person, but understand that a lot of information and friendships can be gained and formed from them.

Until my new immune system is fully up and running, I’m staying away from large gatherings anyway.

I do hope you the conference is a success.

[Meatloaf9]

Thank you for the update, I hope you are back on your bike soon. Best always.

[nellietheelephamt]

Thank you for the report, it gives us all hope. My son and his wife are both medics at Addenbrookes but not in haematology.

If I was well enough I would go and stay with them to get sorted out!!

[LFCLove in reply to nellietheelephamt]

So admire those in that profession, you must be very proud.🫶

[Bullace]

Thank you for your update. I am interested in how it goes for you and wish you well.

[Bluetop]

Thanks for the update. So glad things are generally going well. Pleased things can gradually revert to 'normal' Best of luck

[CanadaG]

great to hear your recovery is going well. Thank you for the updates

[Dodders]

Sounding positive, and you sound very positive which is great.