Myelofibrosis

I'm glad to find this site, since this disease is so rare.  It is so different than other diseases.  My husband was diagnosed February 2006 with myelofibrosis.  We were sent to M.D.Anderson for evaluation and treatment in May 06.  He started a clinical trial in June of 06. He was given chemo for 5 days, then wait 2 weeks, then another round of chemo.  He has had 14 cycles of chemo.  He is 68 years old and was told that BMT was not an option for him.  He works but fatigue is a big issue. 

 

On 7/10/2007 retired teacher wrote:

I'm glad to find this site, since this disease is so rare.  It is so different than other diseases.  My husband was diagnosed February 2006 with myelofibrosis.  We were sent to M.D.Anderson for evaluation and treatment in May 06.  He started a clinical trial in June of 06. He was given chemo for 5 days, then wait 2 weeks, then another round of chemo.  He has had 14 cycles of chemo.  He is 68 years old and was told that BMT was not an option for him.  He works but fatigue is a big issue. 

 

Hello -

I am new to this site... I was diagnosed with myelofibrosis 10 years ago.  I am a 59 year old female and I am starting to feel the symtpoms of this disease.  I recently was placed on Revlimid (this will be my 3rd week of treatment).

It is difficult for me because there is little information on this rare disease - and it seems that the doctors do not seem to have the answers for me.  I am luck though I have family to help me through this - however I am looking for more answers.  In my search I have heard a lot about MD Anderson - can you tell me how your husband qaulified for the clinical trials?  I am interested in participating if at all possible.

Dora.

Hi!

Our Cancer doctor in Olathe, KS got us an appointment with M.D.Anderson in Houston.  We went to the appointment and the doctor at M.D.Anderson did lab work and a bone marrow aspiration for a second opinion.  He said that Lee has the JAK2 mutation  myelofibrosis and there was a clinical trial that was specfic for that.

There is a web site www.mdanderson.org.  M.D.Anderson Information Line is 800 392-1611. 

We also had a lot of prayers going for Lee.  Good Luck!  We'll keep you in our prayers.  We hope this helps, please let us know if there is more we can do.

retired teacher

 

On 11/24/2007 ihavemyelofibrosis wrote:

 

On 7/10/2007 retired teacher wrote:

I'm glad to find this site, since this disease is so rare.  It is so different than other diseases.  My husband was diagnosed February 2006 with myelofibrosis.  We were sent to M.D.Anderson for evaluation and treatment in May 06.  He started a clinical trial in June of 06. He was given chemo for 5 days, then wait 2 weeks, then another round of chemo.  He has had 14 cycles of chemo.  He is 68 years old and was told that BMT was not an option for him.  He works but fatigue is a big issue. 

 

Hello -

I am new to this site... I was diagnosed with myelofibrosis 10 years ago.  I am a 59 year old female and I am starting to feel the symtpoms of this disease.  I recently was placed on Revlimid (this will be my 3rd week of treatment).

It is difficult for me because there is little information on this rare disease - and it seems that the doctors do not seem to have the answers for me.  I am luck though I have family to help me through this - however I am looking for more answers.  In my search I have heard a lot about MD Anderson - can you tell me how your husband qaulified for the clinical trials?  I am interested in participating if at all possible.

Dora.

Dora,

Have you been to M.D.Anderson?  Do you need more information about MD Anderson?

Are you getting along okay with Revlimid?

We go back to M.D. Anderson at 6 months intervals now.

retired teacher