My daughter was first told she had PCV in 2016, but the signs were she had had it since 2010 (so not Arthritis like the GP said). She was treated until spring this year, when her haematologist retired. His replacement ran a full suite of tests (not done by previous consultant) and was told the PCV had progressed to stage 2-3 Myeloid Fibrosis. !!!!! New consultant referred her to Prof Claire Harrison at Guys since this affliction is pretty rare amongst 40yr old females. So now, like many others, she is facing RadioTherapy, Chemotherapy and Stem Cell Therapy all of which are going to kick her sideways. Stress on her husband, parents and siblings is almost intolerable.
I know we are not the only ones, by far and I know there is little we can do that’s of real significance, so I guess what I’m hoping for from this site is not sympathy, as such, but perhaps things that might give us (and everyone else) some hope that there are things happening which will keep her with us longer.
Hi Gandi Bear and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I'm sorry to read that your daughter has recently been diagnosed with Myeloid Fibrosis and it's natural to want to find out all you can about her possible treatment.
The online community is divided up into different support groups but as I haven't been able to find any reference to Myeloid Fibrosis I wondered if you meant myelofibrosis? If this is the case, can I recommend that you join the myelodysplasia and myeloproliferative neoplasms group, as this includes those people who have myelofibrosis.
To join, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here, and join in with existing conversations by clicking on reply.
It would be great if you could pop something about your daughter's diagnosis and treatment to into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi Gandi Bear and a second welcome to the Community.
The path your daughter is now on sounds scary but it is very do-able.
The lead up to and the actual Stem Cell Transplant (SCT) process is both amazing and demanding…… I know this well as I have had 2 Allo (donor) SCTs the first in June 2014 and the second in Oct 2015……. these were for my type of rare blood cancer.
Regardless the type of blood cancer the SCT journey is basically the same for everyone so can I also highlight our dedicated Stem cell transplant support group….. this is a safe place to talk with others who have navigated the SCT process both as patients and cares.
I will keep an eye open for you.
