myleofibrosis

My husband has been taking revlimid but rbc is still low. Has enlarged spleen and minimal bone marrow function. Any other studies in progress. He is 67 yrs and has been symptomatic for one year.

Hi, I wanted to tell you I truly am sorry to hear about your husband, my prayers are with you.  My father passed away from it a little over ten years ago and I realize the toll it takes, he was my best friend and the person I counted on to be there for me.  Not sure if you have talked to anyone at Fox Chase Cancer but it is a suggestion.  When we were looking for help we ended up there and they tried some clinical trials that helped for years and made things much easier.  They are great to work with and actually care temendously about their patients, give them a call and ask to speak to the person in charge in that area.  Don't stop with a receptionest and ask who the chief doctor is in that Department and only ask for an appointment with them and no one else.  Good luck, I'm hear if you ever need an ear and a shoulder to lean on.

 

On 1/20/2009 maxfred wrote:

My husband has been taking revlimid but rbc is still low. Has enlarged spleen and minimal bone marrow function. Any other studies in progress. He is 67 yrs and has been symptomatic for one year.

I was diagnosed last March with myelofibrosis.  I have been in one clinical trial at MD Anderson - there was no improvement.  I am awaiting a clinical trial using pomolidimide.  It is supposed to help with rbc and anemia.

Where do you go for treatment?  I really like my Dr. 

I'd love to hear back from you.  There are so few of us out there.

 

Janet/Nana

 

On 1/21/2009 wannabe wrote:

Hi, I wanted to tell you I truly am sorry to hear about your husband, my prayers are with you.  My father passed away from it a little over ten years ago and I realize the toll it takes, he was my best friend and the person I counted on to be there for me.  Not sure if you have talked to anyone at Fox Chase Cancer but it is a suggestion.  When we were looking for help we ended up there and they tried some clinical trials that helped for years and made things much easier.  They are great to work with and actually care temendously about their patients, give them a call and ask to speak to the person in charge in that area.  Don't stop with a receptionest and ask who the chief doctor is in that Department and only ask for an appointment with them and no one else.  Good luck, I'm hear if you ever need an ear and a shoulder to lean on.

 

I read your reply and was curious what clinical trials your dad was on and what helped?  I am waiting to start my second one at MD Anderson.  I will check out Fox Chase - where is it?