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Myelofibrosis

justbychance
Posts: 8
Joined: Nov 2009

I was diagnose with myelofibrosis in April of this year 2009. I had to have blood transfusions and a splenectomy. My spleen was over 5lbs, they took a liver and lymph node biopsy and the myelofibrosis has spread to those organs also, they tried a low dosage chemo pill called revlimid and I have so many different allergies to medicines that I couldn’t take it. I got a reaction of dinner plate hives from it. I was taken off of it for 30 days and now they are going to try a low dose of hydroxyurea and see how I get alone with that. They had to remove my spleen because I was having very high fevers, losing a lot of weight, mouth sores, red blood count and platelets very low, but white count high and other different things. When they were removing it they found it had attached itself to my diaphragm for more blood supply, which was help causing me to get anemia and breathing problems which I didn’t realize at the time. Three years ago I was diagnose with breast cancer had an lumpectomy and radiation, then they found I had a factor V deficiency which cause me to have a deep vein blood clot in my leg and is being treated with warfarin, then 2 years later start having female bleeding which they done a d&c and a procedure called nova sure which none helped which was sure it would,, but they think now the warfarin and the myelofibrosis combined is not helping my problem with that it could be causing it. The symptoms that I was having with the spleen was coming and going over a year before diagnose because they was looking for something with the breast cancer. My white blood count and platelets is high right now. The revlimid was helping the platelets but the Eos was extremely high because of the reaction and the white count was getting higher. I was 48 when diagnose with myelofibrosis. Just wondering has anyone experience any symptoms like this and had to get there spleen removed and is close to my age. Please let us know. Does anyone know if there is a certain age for bone marrow transplant (someone told me some places doesn’t like to do them after age 40) and can you receive one with out a spleen.

Dilliam
Posts: 2
Joined: Jul 2010

Hi,
I have had a rather good result, having had PNH and anemia for 15 odd years which, I think morphed into something like Myelofibrosis. The following (sort of) tells my tale--it was put up on the PNH support group site. I have real trouble using this particular web site; I left some discussions about 6 months ago, which I can not find.

Sorry to be so slow in getting back. Yes, I had my spleen out. Over the last year everything changed: Apparently there were some indications that what was an anemia (PNH) for 10 or 15 years with lack of two proteins CD55 and CD59 and no blood in urine or real breakup of cells--disappeared, at least in terms of the proteins. Then I guess the symptoms lead to at least 2 doctors and 3 students (during their final tests) to conclude that I had Myelofibrosis; a bad disease, that leaves little you can do and a remaining life of only a few years. They persisted and the advanced swelling of the spleen forced its removal; it was about 5 Kg and required a slit down the whole lower part of my belly, along the Linea Alba from below the rib cage.

But, some 3 weeks later, they finally had a (now) firm diagnosis; I have a Non-Hodginson Lymphoma. The doctor said that was good, since now they could do something. But better yet, apparently the spleen tends to contain the lymphomias and they are very slow to act. Only a 1/20 chance it will reinfect something else, mostly lymph nodes. The operation was on 9Aug10 and I am now perfectly normal--no more anemia. The white blood cells overshot a bit at first but are now in the normal range. The red cells and haemoglobin have both gradually come up to the right, normal levels.

I did (arbitrarily) give up my warfarin and statins and other medicines, though I continue to take (now sotalol) for my irregular heart beat, some mineral and vitamin suppliments, and 1/2 a kelp pill, for my marginal thyroid gland. Yhough somehow, even the thyroid seems to no longer be marginal, as well!

Guess I never had Myelofibrosis, but others could easily be in the same situation. I don't know why they diagnosed Myelofibrosis anyway. And, somehow, the PNH has gone. The doctor says that ~15% of my lymphocytes are defective or 'rogue' or whatever. If the numbers increase significantly, I could go through this again but, now that we know, chemo remains. The real hope is that anything that may happen will do so slowly--the doctor will check my bloods and lymph nodes every six months. I hope that even the 'rogue' cells will go away. I will be considering the best diets and exercise. I can't believe the energy I now have.

I'm hoping some of these happenings affect you and yours now or in the new year. Things can come right!

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