Welcome all the new people who joined in the last few months, I appreciate you don’t want to be here but it is a good place to get help. We have heard from a few of you but it would be great to hear from all of you in new posts. It helps us by knowing how we can help you. Key items are:
Which MPN?
Where you live in the world. ( as medical systems are different in various countries)? County/State can help as this can ID specific hospitals/specialists.
Age? Can sometimes align people with you.
You can post or slip details in your profile.
Let’s be clear, this is not essential and it is fine to just rewatch and read, but it really can help those who are waiting to help you.
It also helps if you ask questions as it can generate responses that inform everyone.
Finally, there is no such thing as a stupid question other than the one you wonder about and dont ask! 😀
I’ll start.
I am Chris, 67 year old male, from the uk and I was diagnosed with Myelofibrosis in 2010 for which I had a stem cell transplant (SCT) in 2011. Yes I had a small amount of gvhd (graft versus host disease) but not much and I am several years clear of it. My donor was a MUD (Matched Unrelated Donor) lady called Sarah making me a transsexual transplantee 😀😀!
Happy to answer any questions on that topic as are many others here with their own specialties.
That’s me who has been here for ages. Don’t be shy, let’s here about you!😀
Written by
MFBMT2011
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Brilliant Chris! The best way to win at this is to understand and know as much as possible about MPNs. The best why of doing this is by asking questions and learning from others experiences and acquiring knowledge a long the way. I have learnt so much from this site.
I'm Brona, on this site since March this year. Im 44 and have been diagnosed with ET Jak 2. Im on asprin at the mo and about to go for my first bmb in 12 days. I am hoping for a good result. My platelets at the last appointment were 544. Since diagnosis I have changed my lifestyle I now run and eat an anti inflammatory/ Mediterranean diet as well as a bunch of supplements to try and stop progession / lower platelets - if that's even possible. I dont think I have much in the way of symptoms at the moment.
Hi I joined the site a few months ago. My name is Sally. I live in London. I am a soon to be 70 female diagnosed last August with Jak2 PV. I had 4 venesections and went on to Hydroxycarbamide straight away. I have found the forum very helpful. I have not had my bloods done since February and have a haematology appointment in September. I am a bit worried that I have gone so long without the bloods being done. Is this happening to most people because of Covid. ? Thank you for your post Chris as it hard given me the courage to join in.
Welcome Sally. That was my intention as we all need to share and talk. However, one important thing is that comments made in reply to a post are not widely seen so you need to repeat your comments as a new post so everyone gets to see it. I learned this a few years ago when trying to organise a group get together at an MPN meeting. I posted where to meet at end of a list of comments and no-one saw it! 😀
Start a new post and cut/paste tour intro in to get the best coverage.
Hi Sally,we share the same name & dignosis at 70. I live and have my treatment in France,I had venesections until they got my 85 HC T down to 50 ,then straight on to Hydrea,which worked for 10 yrs,then I was changed to Ruxolitnib,thank goodness .I am now 80, tho apart from my fatigue times ,in my head I am still 30 !!! Here I am tested every month for my blood ,every 3 months I have tests for all my other bits and pieces.Have had same consultant for 11 yrs & same nurse who comes to the house to take my blood for testing.So I am well cared for.I do feel you should have better care,difficult for me to know how P V is managed in U K.I really hope you soon have more checks.... This site is a great help to all of us on it,so stay with us.Very Best Wishes,Keep strong,Sally
Thank you so much for reply. Glad to hear you are doing well after 10yrs. It is good to know how treatments vary. I am only having an appointment every 3 months with haematologist and in May they didn’t do blood test because of Covid. Thank you for your positivity. Best wishes Sally
My name is Tina and I joined this site a few months ago when I had to make the decision whether to start Hydroxycarbamide or Peginterferon. I am 60 years old and live in Birmingham UK. I was diagnosed with Jak2+ PRV in 2015. I have been managed up to now with daily Aspirin, regular 3 monthly blood tests/consultant reviews and venesection every 3 or 6 months. However as I have now reached the magic age of 60, my consultant wants me to start treatment to help reduce risk of stroke, hence my need to make decision of which treatment. After reading and receiving lots of input from the lovely people here, I have decided to start Peginterferon, which I am due to start in September. During Coronavirus I have still been going for blood tests every 3 months and telephone consultant reviews, plus 1 venesection. As mentioned before, this site is a great help to us all. Best wishes
Having followed this forum for 9 months, your post inspired me to put my head above the parapet. I've now updated my profile but summarise here: diagnosed ET 2013; progressed to MF end of 2019. Weekly transfusion dependent for a while, due to Haemolysis. Referred for SCT - now stalled owing to Covid-19. Just reached 70 so aware of cut-off age. However, I've been feeling great since starting Ruxolitinib late January 2020. Hb slowly rising and no further transfusions. WBCs are way too high so let's see what tomorrow's blood test shows
Not aware of SCT cut off age but haven’t seen doctors for a few years now. When I was looking, at 58, I read it was 45! Two years ago My cousin was considered for SCT at 70 for a different leukaemia (ALL) but his heart and kidneys weren’t good enough to tolerate it. I was told it is really about general condition and general fitness, not age. A couple of years ago I spoke to a successful USA transplantee of 70+ who told me she was in a ward with others older than her.
Covid is a complication but shouldn’t really stop normal treatments so it is probably worth asking.
Keep your head above the parapet but just don’t get caught lighting a cigarette with a match!
And if you haven’t done so can I suggest you cut and paste you message above into a new post from you so everyone gets to see it as sometimes these messages aren’t seen by everyone.
If you do head down that route then I’ll be here to help with any questions
Thanks Chris, I was 69 when SCT was suggested. When I said I thought cut off was 45 my haematologist said it was OK as I was otherwise in good health. But the question was asked at the recent webinar and Dr Mclornan (the SCT specialist who referred me to UCLH) said 70. I'll ask for clarification tomorrow if I get to see my specialist nurse, otherwise in 3 weeks when I have a consultation. I'm not in a rush as I'm doing so well (for the time being) on the Ruxolitinib but I take your point that it does give you a false sense of security.
BTW, where did your donor live? And at what point did they start to look for a match?
Send me your email Or drop me a line on crh27@aol.com and I will send you my story to three months, which will put it into perspective. UCLH are brilliant, that’s where I had mine. It is also where my cousin was assessed and quite rightly declined. Didn’t match sisters so MUD (matched unrelated donor) sct. My donor, Sarah, came from Dorset so not far although they have been known to fly cells in from all over the world.
Me off the top of my head. diagnosed April, SCT not recommended by local (poor) Haem. Second opinion in July with Proff Harrison who recommended SCT within three years. I said prefer now and was referred to UCLH. September UCH said let’s test. November found match for December SCT. Xmas complications moved to Jan. caught cold . End Feb full speed ahead and blow the icebergs! 😀
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Matcha tea ? Anyone taking it to help cancer cells ? 
REMINDER for the Virtual MPN Voice Patients’ Forum – London Saturday 1st August
Update for those awaiting "Vulnerable Person List" letters
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