Myelofibrosis

Hi  and welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear that you have been living with Mylofibosis.

I was looking at your profile and see that you may be going down the Stem Cell Transplant (SCT) route.

I was diagnosed with a rare (incurable) type of Non Hodgkins Lymphoma back in 1999. over these many years I was never in remission- actually told that I would never see remission.

You can see my profile.... but I did have two SCTs with cells from my brother back in June 2014 and October 2015....... and heard the word remission in September 2016 and living well.

There actually have been a few folks with Mylofibosis come through our very supportive Stem cell transplants for blood cancers group..... this would be a good place to open up your concerns to a wider audience who know exactly what you are going through at the moment.

Just follow the link I have created then hit the ‘Join This Group’ tab just under the main group name, then go to the 'Start a Discussion' tab and set up your very own Discussion and introduce yourself to the group and ask your questions.

I will keep my eye open for you.

Wow thats alot ti deal with especially all those tumors. Right now they've told me my labs are looking good enough to keep postponing the sct. Oh and i also appreciate being able to abreviate sct to oeople who knows what it is. Most people i have to explain it before going forward. 

The jakafi 25mg i was on last did awesome on shrinking my liver, but dropped my platelets to 27000 had me dragging and bleeding even with a bump from impact. That worried me alot because ive always been a harley rider and i construction .  The good and bad of that is i can no longer do the painting due to past injuries resulting in reconstructive surgeries to most of my joints , knee both shoulders and multiple wrist surgeries.  Painting is hard on on the body alot of repetitive actions . 

So after all that over 2015-16 my pain increased and got to the point i couldnt work more than2-3 hours a day. I was a cintractor but i couldnt even do that. And i forgot i had been diagnosed as a high risk diabetic 2007. So with the pain and tiredness dizziness i related to my diabeties and took alot of insulin. 

So the wife and i decided to move to Louisiana from Lompoc California  to be near our first grandson. I rested up for a few monthes and went back to painting for my own company again. That became to painful so ihad to stop again for.the last time. I was only 55 and out of work. 

In 2017 a friend asked to come to California and grow a few acres of Hemp. I was there for 4 months and over during this time my blood sugar went crazy i became more and more weak and 2-3 weeks before harvest i came back home and went to my primary dr for a check up. Since it seemed that it was just my stomach she sent me for a colonoscopy . That dr found a problem with my white cells. The next week i had a hemotologist that had dont part of her residency at Tulane cancer center in New Orleans.  After labs and bmb 7 weeks later i was diagnosed with my buddy myelofibrosis.  

She sent me to dr Safah at Tulane march of 2018 and i wasnin bad shape. 

SO THE ADVENTURES  BEGAN!!!!!!!!!

Ill keep em shorter from now on. But having someone that understands the language and issues are far and in between.

Molochmunch Molochs mc California.

Hi again , so good that your not having to go into SCT as yet and long may this continue.

Interesting journey you have been on and having been in construction in my early years it does have a long term effect of the body including my unexpected friend Asbestosis.

I heard that there are over 100 different types of blood cancers so there are some that are more challenging than the more ‘popular’ ones.

It amazing the number of people that connect into the Macmillan Community from far and wide but it is a safe place where you will always get support and encouragement.

Always around to help out - best regards from Inverness Scotland.

Hi I am at that stage now, but the jakafi is not working correctly, so they have reduced my jakafi to 15 mg and twice a day, and added Hyroxcamamide 500gm one a day, I am waiting for a bone marrow transplant at Christie's , but my white cells are to high, a doner has been found in GERMANY, I have been on this latest treatment for two weeks my white cells have dropped to 78.4 from 91 and platelets have gon up from 29 to 46 avoid result considering I've only been on them two weeks, there is always hope and a lot off treatment out there do don't get to worried about outlook think positive all the best geoff

Hi Biggeoff and welcome to the Online Community, although I am sorry to see you finding us.

So you will see from my profile (hit my Community Name) that I have been through two Allo Stem Cell Transplants (Bone Marrow Transplant) with cells from my brother so totally understand the rollercoaster you are about to go on.

I had a rare type of Skin NHL but when it comes to SCT it actually is the same journey across all types of blood cancer.

Talking with people who are on the same journey can help a lot so can I highlight our very supportive Stem Cell Transplant Group.

Posting in this group will open up your concerns to a wider group of people who know exactly what you are going through at the moment.

Follow the link I've created, join the group then introduce yourself to the group and post questions after selecting 'start a discussion' and you can also join in with existing conversations by clicking on 'reply'.

You may want to put some information in your profile as this can help a lot. Click here to see how to add details as this helps everyone to see a little about you and how best to reply to you.

Come over and let’s support you on this journey.

My plateletes dropped after the took me off danazol so im back on it hope the count goes up.  And they have me seeing my bmt doc every 3 months. So alls good hoping this whole virus crap doesnt screw up those who need to be transplanted. Sure lowers the donor pool a d countries they can use. Stay healthy and strong and thank you for the best wishes. Steve

I have had this since June after getiring back of a cruise up to bultic,  had no drink and very little food for the hole crusies, was told to have blood tests, could have fallen of the doctors chair when he said you have blood cancer, a lot o visits to North Staffs cancer clinic befor been refuded to Christie's Manchester, under s Dr Denis's there he did not pull any punches said he would give me 18 mounths on the medication I was on hence the doner was sort and found, but like I said in the last email my hite cells are to high and my platelets to low, he did say that a professor at Christie's was running a trial and he would see if I was suitable for it jak2 and Hyroxcamamide seem to be working, it's good to talk please stay in touch hope you have good luck in your treatments Geoff

Anyone there with myelofibrosis. I have got it and is terminal now. 

Hi Ven63 put myelofibrosis into the search tool near the top as this will bring up all the past posts, you can then put up a reply and see if they are still active on the site.

Hi ven63

so sorry to hear of your situation, My husband was diagnosed with myelofibrosis 6 months ago following years of ET. Started Jakafi 6 weeks ago so still early to see how well that will manage symptoms.