myelofibrosis

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RE: myelofibrosis

by dorisang on Wed Jul 18, 2012 05:37 AM

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On Mar 23, 2009 12:00 AM tancyndy wrote:

Hi there... My husband was diagnosed last year, and is 66. We're also from Colorado, summers mostly. We saw a Dr at Univ Colo Denver, who is fabulous expert in bone marrow transplant , but not so good for us as a regular Dr. Won't treat, won't even try anything ... just checks the counts and says NO you're not ready ... so we're not crazy about that. Not too sure he even wants a transplant ever. We have been in Fla for the winter, and love our hemotologist/oncologist at N Broward Hosp, He at least tried Procrit on Sam but nothing changed after 6 weeks, no results... He offers great advice and talks to my husband and seems more concerned about his quality of life. Don't know why they haven't tried any other treatments... seem to be a wait and watch approach, due to his age we think and so far the numbers aren't critical. Sam is tired all the time, but so far hastn' needed a transfusion since March of 2008. Seems to hover around 10 hemoglobin, just enough ... not enough. The spleen is growing but not too bad yet. THe main symptom is he's extremely tired all the time. Can do things about and hour, two sometimes 3... then crash. Maybe we should go to Mayo for a visit. Sorry to hear about your Dr in ColoSprings ... Our Dr in Fla (Dr Franscisco Bilette) said there is a great Dr in Colo Springs @ Memorial Hospital... I'll find out his name, (unless its your guy.... yikes) He said he had a great bedside manner with his patients and treated more old school, care about the patient. I just joined this board and am glad to find some more recent postings! Its helpful to read how others deal with it. THe Hydrea works for your husband well? How old is he? Thanks for any info.

My husband is 65 and recently been diagnosed with Myelofibrosis.  He was given preginterferon Alfa 2 and has adversed side effect.  Before treatment he was still active and now after treatment he is so weak and tired most of the time.  Dr. suggest changing his treatment to latest drug called Ruxolitinib.  His platelets has come down to within normal range, he had 3 packet of blood transfusion, his blood count is 3.2 and hoemoglobin is 8.3.  I am wondering should I stop all treatment and monitor his platelets and blood count so he can have better quality of life.  Anyone can share your thoughts.  I am from Singapore and unfortunately there is no support group at all here.  Rgds

Doris

RE: myelofibrosis

by Kazza on Wed Jul 18, 2012 09:39 PM

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Hi, my hubby was diagnosed with myelofibrosis in March 2008, we are in Australia, he underwent a trial, at first all was going ok, he had bad side effects, and then for about 6 months he did not need blood transfusions and we thought fantastic, but then the drug started to reverse and was killing his good cells, so we had to stop the trial.  Today he spends 80% of his time in bed or his recliner.  He was going to start on another trial 6 months ago, however because of his low platelet count, he couldn't start, after numerous blood tests, he was told he was not healthy enough to start the trial.   I believe age plays a role, my hubby is now 64, he was diagnosed at just turned 60.  We do not visit his Oncologist anymore, no point, there is nothing they can do, he has blood transfusion weekly. 

You ask should you stop the blood, if you do, well for my hubby that is his life line, once he stops that it will only be a matter of time.........Unfortunately there is no cure for this horrible blood disorder.  There are different forms of Myelofibrosis, some people live many years with this disorder, I also think a bone marrow transplant because of your husband's age is not recommended. 

Hang in there, take each day as it comes, you have a long road ahead........

regards....Kazza

RE: myelofibrosis

by dorisang on Thu Jul 19, 2012 03:49 AM

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Hi Kazza

Thanks for your reply.  MY husband is Australian citizen and we were from Melbourne.  I wasn't sure if I should go back to Melbourne but I am concerned about weather and support. Now in Singapore, I hv two maids to help look after him and I have chinese doctor to support him.  He was on Preginterferon but suffer from many side effects. My concern is they are going to give him the latest drug Ruxolitinib, sounds very promising but side effect is low blood count.  Just wondering how I can get in touch with those on Ruxolitinib and get some understanding from them.  Any specialists in hospital that I can get in touch in Australia?  No one in Singapore has been on this drug.  It's very new.

RE: myelofibrosis

by irene_stevens8 on Mon Mar 18, 2013 10:02 PM

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On Feb 12, 2009 12:00 AM Cherylb wrote:

Josh,  I am a 62 year old female that was diagnosed with myelofibrosis when I was 35.  The Dr.'s offered me little hope...they said I had 6mos. to 2 years to live.  But, 27 years later I am still kicking!!!  I have been thru many treatments & medications...but had radiation and blood transfusions in 2007 and have been symptom free since.  I took Hydrea for years, but in 2007 it no longer worked for me.

My advice is find a Dr. that cares about you, will listen to you and cautiously treat you.  My Dr. is with Texas Oncology in Ft. Worth, Tx.  I have gone to him for 16 years and I consider him the BEST.

Stay positive, research every treatment they suggest and make the best decision for your treatment.

Blessings,

Cheryl

Hello- my mother has been recently diagnosed with myelofibrosis and I have been desperately looking for a good doctor for her so I was wondering what your doctor's name was?

RE: myelofibrosis

by health1213 on Sun Mar 31, 2013 02:15 AM

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On Mar 18, 2013 10:02 PM irene_stevens8 wrote:

On Feb 12, 2009 12:00 AM Cherylb wrote:

Josh,  I am a 62 year old female that was diagnosed with myelofibrosis when I was 35.  The Dr.'s offered me little hope...they said I had 6mos. to 2 years to live.  But, 27 years later I am still kicking!!!  I have been thru many treatments & medications...but had radiation and blood transfusions in 2007 and have been symptom free since.  I took Hydrea for years, but in 2007 it no longer worked for me.

My advice is find a Dr. that cares about you, will listen to you and cautiously treat you.  My Dr. is with Texas Oncology in Ft. Worth, Tx.  I have gone to him for 16 years and I consider him the BEST.

Stay positive, research every treatment they suggest and make the best decision for your treatment.

Blessings,

Cheryl

Hello- my mother has been recently diagnosed with myelofibrosis and I have been desperately looking for a good doctor for her so I was wondering what your doctor's name was?

Hello- my brother has been recently diagnosed with myelofibrosis.  we would like to know more about your treatment.  how did u manage CBC counts and other issues.  he is in india but can travel to USA; I am in usa.  if u recommend any doctor, pls advise.  thanks so much. shah

RE: myelofibrosis

by Cherylb on Sun Mar 31, 2013 02:36 AM

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Presently, I am on 500mg Hydrea 4 days a week. I see the oncologist every 3 weeks. But, for a year I saw him every week. I use Dr. Redrow in Ft. worth, Tx. Many newly diagnosed patients go to MD Anderson Hospital in Houston, Texas.

RE: myelofibrosis

by dancouclanel4 on Mon Mar 30, 2020 03:48 PM

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On Feb 17, 2009 12:00 AM Harvey_L_1 wrote:

 

On 1/16/2009 joshua4jesus wrote:

hello im a 31 yr old male with myelofibrosis and i just got out of the hospital again with low blood counts, ill be going to minnesota mayo clinic in march can anybody tell me what to expect as far as treatment and me being this young.

 

                                                                                 thanks

                                                                                 josh

 


Josh,

I'm 64, was diagnosed with myelofibrosis nine years ago, and was told then that I had three to five years to live. Most cancer patients either know or come to learn that we get either bad news, or good/bad news. So, my first advice is that you don't get down when you get some bad news. Rather, learn to bend with it and forge on. Eventually, you come to terms with being pleased when you get the good/bad news.

 I live in San Francisco and treat at UCSF. You say you're going to Mayo Clinic, It has probably the most committed researcher into myelofibrosis in the world, Dr. Tefferi. Be sure to ask for and about him. As to what you can expect you probably already know many of the symptoms as a member of our small fraternity. My advice is that although, of course, you must listen carefully to your treating doctor, you also need a solid dose of common sense. Don't be rushed into treatments especially if they're extreme. Discuss options and don't accept that there are none. There always are options. I bless my doctor, but I also recognize that many of them are driven by statistics and a need to prove that they've got "the" answer. Remember that this disease strikes probably 4 in a million so statistics don't mean much. That's why you need to get into the hands not just of a team on oncologist/hemotologists, but of those who know about myeloproliferative disorders.

If you want details about symptoms, progression of the disease, various treatments, I'll tell you about my course, but the best advice I can give is to pay close attention to your body. When it tells you you're tired, don't disregard it. If you feel like you need to nap -- nap. If you feel that you can push through it, do so, but pay attention and report what you're experiencing. Keep track of your records. I keep a chart of my blod counts and other data going back to the beginning. But most of all, don't give in. If ever I doubted that attitude matters, I stopped doubting after I got over feeling sorry for myself post-diagnosis. Yeah, we all go through that phase -- perfectly normal. If you're scared you're human. If you're angy, you're human. But after a while you'll decide that if you spend all your time being scared and angy, life will pass you by. Don't let it. You be the boss and remain determined to live each day to the fullest.

Be in touch if you need more information.

Hang in there.

Harvey

Wise counsel sir.  I'm 75 and just positive for JAK2.  Just another chapter in my journey on planet earth.  More to the point, i've read your and others accounts and feel MUCH better about my diagnosis.  Are there improvements since 2009?

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