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MYELOFIBROSIS

attoni
Posts: 2
Joined: Jun 2009

I AM 56 AND DIAGNOSED WITH MYELOFIBROSIS. I'M LOOKING TO SEE IF ANYONE HAS THIS AND WHAT TREATMENT OPTIONS YOU HAVE TAKEN. THANK YOU.

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 size 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 remove my spleen not only of it size which was taking up all the room form other organs, I was having very high fevers, losing a lot of weight, bad mouth sores, red blood count and platelets very low, but white count high and other different things and had to have blood transfusions. When removing it they found it had attached itself to my diaphragm for more blood supply, which was causing me to be anemia and having breathing problems and heart palliations which didn’t realize how bad they was. 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 later start having female bleeding which they done 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 that problem,it could be causing some of it. The symptoms that I was having with the spleen was coming and going over a year before diagnose with myelofibrosis because they was looking for something with 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. Also I have bad aches and pains within the ribs and elbows and some of the other joints. Please let me 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.

JossieJo
Posts: 2
Joined: Mar 2010

Hi,
I was generally in a very good health, and I was a blood donor all my life, in December 2008 I started to experience chills and feeling cold, I presumed was the strong air in the office. In January 2009 I was layoff from my job, and when the cold and chill episodes continue I went to my primary doctor. At that time we suspected some bleeding, so I was refer to a specialist. On May 2009, after all lab work was done they discover that my hemoglobin count was 6.8, I was admitted to the Hospital for my first transfusion, after that I was referring to my present doctor (hematology-oncology).
After 10 days at the Hospital, and a Bone Marrow Biopsy with a JAK2 mutation was positive. I was diagnose with Myelofibrosis in June 2009. I had to have blood transfusions (10 since June 2009) and my spleen is very large (23cm.) On July 2009 I went to Mayo Clinic for a second opinion.
Since September 2009 I am taking Thalidomide 50 mg daily, prednisone 10 mg twice a day and Aranesp injection 500 mg every three weeks. So far my blood transfusion is every three month more or less.

sylvias
Posts: 3
Joined: Aug 2009

Hi JossieJo,

I read about your experience, and my husband has been diag. with it in August/09 and we were recommended to go to Mayo in Rochester but we live in Louisiana and that is too far to go so now we are checking to see if there will be a clinical trial closer to home. My husband spleen size if about 21cm. and his hemog/10.5, platelett count is around 650,000, white count is 23,000, on his last weeks visit. Dr. may need to put him on something to try to get the sleen down in size. Jo you didn't tell me how old you are and my husband is 57yrs. old and not really able to get a bone marrow transplant. So I guess we just wait, he is very tired most of the time but he still works, because he has medical insu. with the company he works for. Not very easy is it? My prayer go out to you and I hope everything is well with you.

Sylvia

Ps
Please feel free to email me anytime, would love to keep in touch

GolferNan
Posts: 12
Joined: Aug 2010

I was diagnosed with MF in 2005. (5th Yr) Most research gives 5-15 yrs. prognosis with median range of 5 yrs...I feel fortunate compared to some of the other people who are dx with the same disease. I know it affects everyone differently. My symptoms have been, low red count, enlarged spleen (but only 15 cm)and recently have developed bone pain caused by scarring of marrow which produces all blood cell production. Am currently taking chemo drug Hydroxyurea. Do not know if it is effective yet...only been on it for a little over a week. My hopes are that it will reduce spleen size and reduce the bone pain. I go for follow up blood work next week to see if it is affecting my other blood counts..there are a lot of side effects to this med. So far, I have not noticed it has helped with the pain I am dealing with. It has, however, caused me to be very tired and nauseated at times. I guess only time will tell.. I am 65 years old and live in NC (Charlotte Area)

It is good to know that there are other people out there with the same disease and that I am not alone. My husband of 33 years died April, 2009 so I am dealing with all the ups and downs of this disease alone for the most part. I have some family close, but it is not the same as having your "best friend" at your side.....I know it is a rare disease...even most doctors know very little about it.... I guess it is up to us to do research and ask a lot of questions regarding the care we are given...

God Bless us all.....

Nan

PS My sister's name is Josie...she's my rock!!!

drpudman
Posts: 1
Joined: Dec 2010

Nan,

Just read your information. How are things going for you now? My father was just unblinded from the Jak-2 study after 9months.

Steven

GolferNan
Posts: 12
Joined: Aug 2010

Hi Steven,
Sorry for the delay in responding. Have been busy with other family issues the past few months.
Since I've started the treatment with Hydroxurea some of my symptoms have decreased. My white count has gone down a bit and the doctor is keeping a close eye on that issue. I was having a lot of pain in my legs and spleen but the chemo drug seems to have eased that up a bit. The doctor has increased the dosage and I've been on it a while now. The pain in my legs and spleen area have reappeared so my thinking is that the drug is losing its effectivness or either the disease is progressing.
I'm on hydrocodone for the pain and so far it is keeping it bearable. It is very hard for me to keep a positive attitude because I want to feel GOOD again, but I guess that is not an option with this disease. I should count myself lucky because there are so many people who are much worse than I am, so I am thankful that I can still be as active as I am.
Good luck to you and your dad in his fight with this disease. We can only hope that the studies the researchers are working on can come up with a solution to this terrible disease.
God's blessings to all who have loved ones dealing with this issue.
Nan

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