New member - Myelofibrosis

Hi redmelons and welcome to this corner of the Community. I am Mike and I help out around our blood cancer groups.

I don't have Myelofibrosis....... but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well........ especially as I have had 2 Allo (donour) Stem Cell Transplants (SCT) the first in June 2014 then a second in Oct 2015.

We do have a general Stem Cell Transplant support group covering all blood cancers as the SCT process is basicaly the same for them all.

So let’s look for the group members to pick up on your post. There are a number of active group members at the moment so why not click on the main ‘Main Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.

You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups….. the one I attend does have a few folks with Myelofibrosis in it so worth checking.

The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

You may also want to check out MPN VOICE UK for some good information and have various support platforms.

My story is rather complicated See my story as I had to go onto have significant treatments mainly due to me developing MY second more aggressive type of T-Cell NHL in late 2013……….. but I am coming up to 9 years out from my last treatment and turn 68 in Nov and I doing great.

Always around if you need further help or just want to talk.

Hi Thehighlander , thanks for all that information

You've done amazingly well managing your lymphoma for 25 years! It's interesting that you've had two stem tcell ransplants. Why is that?

My problem is that I'm 69 in October and the team at the Freeman Hospital in Newcaste said they haven't done stem cell transplants on anyone over 70, so I'll probably only get one chance.

Yes, the Freeman has a Maggie's so I've emailed them .

I know many people in their mid 70 who have been through an Auto SCT using their own Stem Cells and handled the process well…… Allo SCT is more demanding.

On all my 10 years SCT journey I have never talked with anyone else who have had 2 Allo SCTs but a number have had an Auto SCT and then an Allo SCT

My case was very rare and complicated so the conditioning used to kill off my immune system leading up to my first Allo SCT was seen as a trial and if it all worked I would recover very quickly, I did indeed recover very quickly but I was told on Christmas Eve 2014 my graft had failed…… so my team said we go again and that was Oct 2015.

I know others who have subsequently had  the same journey as my first Allo and their SCT worked.

Diagnosed with MF  January 2020, on watch and wait until March of this year when I began taking Ruxolitinib or Jakafi. It helps with the symptoms but a SCT is the only cure. I was also told four years ago that I was too old for a SCT. But you are young the best time to have this. I read from another group for MF sufferers. many of them have had successful SCTs and the fibrosis gone. Good luck and join the groups.

Naugus Thanks, it's many years since anybody said I was young

The docs did say that it would be best to have the stem cell transplant now while I'm still healthy. I'm also on Ruxolitnib. I started on 10mg but that made my platelet count drop rapidly so I'm on 5mg now and it's stabilised.

No other effects that I'm aware of, but I do seem to be coming out in spots everywhere. I had bad acne as a teenager but should be past that now. Is this a known symptom of myelofibrosis or Ruxolitinib?

How old were you when you were told you were too old for a transplant?

I have not read about spots as a symptom of the disease or inhibitor.  I was 79 and HGB was still above 10, not now unfortunately. I did get a second and a third opinion. Follow the groups they will advise on things to take with you for your stay and what to expect.

Hi Naugus, I’m on Jakafi (same as you) and in 2nd month. I don’t feel great. Did you have any depression? 

No, i have not. suggest you talk with your doctor. Maybe Jakafi isnt right for you.

best wishes, sorry you are hurting.