almost 200 days post SCT update

[ConniesDad]

Spurred on by Jennie’s update earlier, I thought it was high time that I wrote an update on my progress.

I’m almost at 200 days post transplant. I’ve hardly had any issues so far other than my Hb count has sat quite stubbornly at or around 80 for the past couple of months. This has resulted in a good few red cell transfusions. I’ve also in the last couple of weeks started to show signs of skin gvhd, itching, rash, etc and started some steroid cream and resumed the fexofenadine medication . Overall though I’m doing pretty well and the consultants are amazed at my progress. I’ve now got wavy hair which I never had before and it’s gone totally grey too. I am frustrated that I can’t do everything I could before I developed mf, (yet) but I just need to have patience and recognise that I’m doing really well in the grand scheme of things. The 15 mile hikes will have to wait for now and I’ll just have to settle for the couple of miles dog walks for now.

I’ve also started to have vaccines again, starting with COVID vax and flu jab. All the other childhood vaccines are coming in the new year.

I can’t recommend the SCT process enough, it’s given me hope and a zest for life that I had lost before and also can’t praise the Haematology team at the Royal Hallamshire Hospital in Sheffield enough, particularly the consultants; Dr Sebastian Francis and Dr Alexandrou Kanalopolis.

[hunter5582]

Great news! Very glad to hear about your progress. I am certain your attitude has a lot to do with why you are doing so well. Congratulations.

[Lucy2022]

Wonderful news! So glad you are doing well.

[MFBMT2011]

excellent news. Onwards and upwards. Chris

[Jazzyb50]

Great to hear that you are making such good progress! I've been going to the Hallamshire for over 15 years for my PV and been under Dr Francis for about 5 years. Jane

[CanadaG]

Hi there, it’s great to hear the procedure went well for you. It sounds like you’ve made a great recovery. Stay strong and positive and thank you for sharing your experience as it does give hope and insipiration to others.

[Meatloaf9]

Great news, long may it continue. Best always

[JediReject]

Hey Garry, pleased to read how well you're doing and getting out on decent distance walks at what is for some perhaps a mid point stage on the way back to a full recovery.

GVHD is a strange one and can manifest in a number of ways the skin rash probably most common and the cream should help. Did you experience any GVHD earlier on. Mine apparently remains active and I still take a very small amount of Ciclosporin though whether it helps I'm not sure. After 7 years and over the last month I've finally had my childhood jabs.

It's not easy living with a chronic condition like MF and Id had enough of it eating away at me so to have the option and take the risk of going down the SCT route was an easy choice for me. We are a couple of the lucky ones and like you im grateful to be given another chance. Sadly SCT isn't a viable option for everyone.

Good Luck going forward and try not to beat yourself up if your efforts fall short of your expectations. Even long term you might find you need to adapt a little, , I'm about 65-70% fitness of the guy I used to be but in some ways stronger.

Regards - Chris

[ConniesDad in reply to JediReject]

This is the first GVHD I’ve had but hopefully it’ll clear up quickly.

[Thankfulone]

Wonderful to hear of your experience and good recovery! So encouraging to hear your progress!

[Bluetop]

That sounds like great progress.Congratulations, long may it continue.

[Simon96]

What a lovely post!

Interesting how your hair changed. Prior to transplant I had stiff grey hairs generously sprinkled through my hair. They fell out first and didn't regrow when my hair grew back.

I hope your Hb plays ball and gets a wriggle on.

Best wishes from a fellow tortoise

[ConniesDad]

Thanks for your reply. I’ve just read back through your previous posts. How are you doing now? Were there any other problems along the road with your recovery at has it just been a slow and steady recovery? Garry

[Simon96 in reply to ConniesDad]

Hi Garry, I am doing well. Slow and steady is a good description. My haemoglobin count climbed and stayed up. My neutrophil and platelet counts fluctuated for quite a while which was a bit off putting in the down stages. My health kept improving and in the end the fluctuations seemed less important as long as I stayed well and the overall trend was improving. My platelet count is still improving; 58 at day+318; 99 at day+1391.

One thing that did creep up on me was GVHD of the eyes. I developed light sensitivity at about the 15 month mark. Unfortunately it was during COVID lockdown. Should have sort treatment from an ophthalmologist immediately.

Looks like you have had a pretty good run with(out) GVHD. A little can be beneficial. Just not too much. Hang in there. Cheers, Simon

[Mazcd Partner MPNVoice]

Hi ConniesDad, this is great news, so pleased for you, well done. Maz x x

[Solyesh]

Fantastic news and thank you for the update! May you continue to improve!

[Otterfield]

It's great to hear how you are doing. The thing that strikes me is how variable we all are, but I'm pleased to hear that you are doing do well, in spite of the stubborn Hb count. I have been assured that blood counts will recover fully but it just takes much longer for MF than for other blood cancers. I'm sorry you have skin GVHD. I find it worse as the weather gets colder. My rash has cleared but there is still itching and the worst aggravation is from clothes brushing against my skin.

It must be reassuring to have had some vaccinations again - we are so vulnerable aren't we.

I hope your recovery continues steadily and that you have a very Happy Christmas.

Jennie

[ConniesDad in reply to Otterfield]

Thanks, and a Merry Christmas to you and your family too xx

[mhos61]

That’s wonderful news. Wishing you continuing progress in your recovery. Have a great Xmas season. Xx

[ConniesDad in reply to mhos61]

And all the best wishes to you too

[Scaredy_cat]

I had a sct in January and have just had my first covid jab post transplant. We're you recommended 1 or 2?