Myelofibrosis

Hi Caya 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 I was diagnosed way back in 1999 at 43 years old with another rare, incurable type of blood cancer reaching Stage 4a in late 2013 so I do know this journey rather well although not necessarily some of the treatments you are on

I do see that you have been connecting with some of the discussion threads....... but let’s look for the group members to pick up on your post as there are a number of active group members at the moment.

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 find our Ask an Expert section helpful but do allow a few working days for a reply.

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

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

Hi thanks reply,we only have macmillan support or Mustard tree at hospital done all that ,my Hemotologist gave me book about Myelofibrosis,just not interested in nothing hate it all I know whats coming, try to talk with nurses (cancer nurse) butthere is nothing one can do I accept what I got hate hearing what I know already hence I try push myself and get on with it till strong enoughas for financial help done all that no help unless you got 6 months to live they help you as if we know the day the hour the minute we are dying? Or find a crystal ball gosh I was annoyed,so hey ho eat or pay a bill most benefits dont help with cancer just no help,thankyou again but its hard to explain how am feeling honest

Sorry to hear how you feel…. it’s interesting that you say that there is no financial support unless you have 6 months on the clock….. I talked with a very helpful Macmillan Financial Adviser in our local Macmillan unit and was surprised as to what she came up with and we are not hard up

As I said, I have been on my incurable Lymphoma journey for over 25 years…… things become very aggressive in late 2013 when a second more aggressive type of Lymphoma appeared so it was embrace treatment or die (See my story) but I am 8 years 9 months out from my last treatment, turned 68 last Nov and getting on with life….. it is easy to let the ’inevitable’ control the space between the ears…… so it is all about how we position ourselves on this journey.

MPN VOICE UK do have various support platforms…… I find that talking helps….  maybe not your thing.

Hi thehighlander thanks again ,as said to the lady that also repleyed, dont know as whenbI read about interferon alfa the chemo.my hemotologist wants to put me on and see all the effects that scares me and tjink do I really want to go through that when no matter as my cancer is uncurable he only said might help with cloth or stroke no cure for the rest so dont know shall I just enjoy life as much as I can its so confussing all I say is you are brave ,I dont feel brave enough for chemo ,people tell me am strong but dont feel it at this time for sure ,just what to forget what I have and pretend its not me ,sound stupid I know ,be talking to my nurse soon as not many listen ,take care..caya

Although I have a completely different blood cancer I had Interferon Alfa (a) injected weekly for a number of years and had no side effects.....

I also had some seriously strong chemotherapy that was used to control my condition and allow me to go on and have 2 Allo (donour) Stem Cell Transplants.

I had just turned 58 when I had my 6 cycles of chemotherapy. This had me in hospital 5 nights / 6 days on my 2 IV pumps 24/7 all the way through..... so a total of over 750 hrs of chemo and honestly I did not have any major side effects..... Stem Cell Transplant was much more demanding.