Myelofibrosis

On 1/3/2008 very hopeful wrote:

 

On 12/19/2007 retired teacher wrote:

Hi Very Hopeful,

Thanks for your encouragment.  Thanks for beening excited for us. 

We are excited for you too.  What wonderful, wonderful news about your husbands blood work. 

I know God put us together.  We keep you in our prayers.  Our God is an awesome God.

 We hope you have a Merry Christmas and Happy New Year 2008, 2009 and 2010.   I really like the way you said that.

Retired teacher

Hi Retired Teacher and everyone,

Be encouraged, the City of Hope is doing new research and hopefully soon we'll know more.  Until then, hold on, this will be an amazing year  in spite of the "junk".  My husband is seeing our general doctor this Friday for a complete physical, and I'm getting ready with a list of questions. 

Everytime Allen says he's tired, my heart jumps, but I realize that everyone gets tired.  After all, he's working full time, taking care of the house, plowing the snow (we just had 8 inches last week and a few last night), cooking a lot (because he enjoys it, not because I'm lazy!!),  so I guess, occasionally, he deserves to be tired. 

I'm the one who's really really tired constantly, guess I need the physcial also.  Do you think it's sympathy symptoms?  Probably, too much thinking. 

The specialist said, "quit the message boards and the internet, it will get you sick!"   She's wrong, it's where the information is, and where my second biggest hope comes from, everyone here is such an encouragement as well as true experts of information.   We're free to ask each other for information that really helps us survive another day.

My first biggest hope comes from G-d, I'm a believer, and if there's anything I know it's that .....   He hasn't taken us this far to drop us now.    In spite of my nervousness and tears at times, I know there's some purpose here and we'll survive, even flourish, and perhaps teach some doctors what they need to know.

I'm looking forward to the future with my husband, a long future, and will pray that you have that also. 

Hi Retired Teacher,

So sorry to have been away this long, it must have scared you a bit, wondering what happened.

We've been traveling some, and seeing Allen's specialist tomorrow for a checkup.  Everything is just fine, no changes at all.  He's currently taking B12 daily, as someone from here mentioned that once.

No pains, never tired, it seems like he doesn't have this.  HOWEVER, I'm not complaining about this...  no symptoms is what we all want, right?

How is your husband doing?  Prayerfully, he's fine, and so are you.

How is your own health?  You said you were subbing again, keeping busy is just wonderful, takes our minds off of "the stuff".

Occasionally, my mind drifts to what if, and I get very sad.  Then I remember, it's important to focus on the good that's going on, and G-d will take care of the rest.

Please let me know how you are, my prayers are with you always.

On 3/6/2008 very hopeful wrote:

Hi Retired Teacher,

So sorry to have been away this long, it must have scared you a bit, wondering what happened.

We've been traveling some, and seeing Allen's specialist tomorrow for a checkup.  Everything is just fine, no changes at all.  He's currently taking B12 daily, as someone from here mentioned that once.

No pains, never tired, it seems like he doesn't have this.  HOWEVER, I'm not complaining about this...  no symptoms is what we all want, right?

How is your husband doing?  Prayerfully, he's fine, and so are you.

How is your own health?  You said you were subbing again, keeping busy is just wonderful, takes our minds off of "the stuff".

Occasionally, my mind drifts to what if, and I get very sad.  Then I remember, it's important to focus on the good that's going on, and G-d will take care of the rest.

Please let me know how you are, my prayers are with you always.

 

Dear Very Hopeful,

Thanks for writing back.  Yes, I was worried.  Prayers are answered.  We are glad that Allen is doing good.  My husband is doing good too.  The last time he had a CBC he had no blasts!!!  He is working, but does get tired.  How was Allen's appointment with  his doctor?

Lee is taking Allopurinol for high levels of uric acid.  Allopurinol is very inexpensive.

I did enjoy subbing and it did help to keep my mind off thinking about "what if's".  I got the really bad flu at school and missed the last three days of subbing for her materinity leave.  We had the flu shots, but it didn't do any good this time.  This is the worst flu we have had for a long time.  My husband and grandson got it too.  So I didn't sub for a while, I didn't want to bring more "bugs" home to Lee.

Most of the time I'm glad that I retired.

Our prayers are with you too.  Please keep in touch.

Retired Teacher

An open question,

I have Mf, I am 64yr. old male in good health (other than Mf), I am currently transfusion dependent and looking for a balance between monthly transfusions. The first three weeks following the transfusion I work around my woodlot pruning, falling ,bucking firewood, hand piling slash, mowing grass, and puttering around the house. I figure I get 3-4 hrs of moderate exercise, a 1/2hour snooze after lunch, and 3 hrs of puttering (light weight routine) The fourth week I start getting tired more often before transfusion time.

Does anyone else have a routine like this ?   I am not a sitter. I have to move around and prefer keeping busy out of doors. But I know that if I push to much I'll burn up my "fuel" to quickly.

Just curious how anyone else has worked this out ?

Thank You,

Bill

Forester Bill,

I found another message board,  they are hard to find, on this subject.  The address is: http://www.cancersociety.net/forum/viewtopics.cfm?Forum=30

It has good discussions too.

Maybe someone there can answer your question.

God Bless and Good Luck

Retired Teacher

On 4/5/2005 Happy70 wrote:

Am looking to speek to anyone who has myelofibrosis. Please contact me?

Hi,

My grandfather age 78 has myelofibrosis.. He just recently found an excellent Dr. In Portland, OR.. his name is Michael J Mauro at OHSU.

My grandfather is so tired. He is normally a healthy active older gentleman.. He is a farmer and does not believe in sleeping during the day.

well things have sure changed he cannot sleep at night, He is tired all of the time. He can barely pick up his feet. If he does not have the Jak 2 marker he can try a new drug developed at OHSU called GLEEVEC we are waiting for the bone marrow results and the marker testing..

would love to speak with anyone about this...

Thank You,

Tami Murphy

Hi

My 78 yo grandfather has myleofibrosis.  We just found an excellent Dr. in Portland, OR. at OHSU  Oregon Health Science University. His name is Dr. Michael J Mauro. He has been researching a drug named Gleevec that we hope to try if he does not have the Jak2 marker which we are told 50% of these patients do. Where do you live? There is also a research place in Washington too? We were told 1 person in a million and a half people have this..

Thanks

Tami

Oregon

On 3/25/2008 forester wrote:

An open question,

I have Mf, I am 64yr. old male in good health (other than Mf), I am currently transfusion dependent and looking for a balance between monthly transfusions. The first three weeks following the transfusion I work around my woodlot pruning, falling ,bucking firewood, hand piling slash, mowing grass, and puttering around the house. I figure I get 3-4 hrs of moderate exercise, a 1/2hour snooze after lunch, and 3 hrs of puttering (light weight routine) The fourth week I start getting tired more often before transfusion time.

Does anyone else have a routine like this ?   I am not a sitter. I have to move around and prefer keeping busy out of doors. But I know that if I push to much I'll burn up my "fuel" to quickly.

Just curious how anyone else has worked this out ?

Thank You,

Bill

 

Hi Bill,

My 78 year old grandfather has this.. We live in Oregon. He was going to a Dr. In Washington about 80 miles away. That Dr. had never treated anyone with this.. They had been going there for a couple years, nothing was happening so I contacted OHSU Oregon Health Science University. We found a great Dr. Michael J. Mauro. He is an associate professor there. We had my grandfather's bone marrow tested and they are testing for the JAK2 marker. have you had that done? My grandfather is very very active he is a farmer, does not believe in sitting around or sleeping in.. well as you know you don't have control when you have this.. His spleen is enlarged he feels full can't eat my grandmother is very scared. He is going tomorrow for a blood transfusion. it will probably only help a little..

How about you. would like to hear from you..

Thanks

Tami

Oregon  

Hi Tami,

I have sent you two Private Replys. Have you received them ? They should be in your mail box. Please let me know.

Bill

Hi, I've been away and haven't written in a while, but just read your messages.  While my husband was diagnosed last October with MF, there's been no symptoms, just enlarged spleen and liver. 

It's good to hear of another doctor who has information and could possibly help.  As this is a rare disease, very few doctors have relative information, and no research except for the City of Hope in California.  They will treat anyone with MF, even those who are greatly advanced, and will even do bone marrow transplants, regardless of age or condition.

I know how it feels to have a loved one diagnosed with this and to be told there's nothing to do, very defeating.  But there is hope and support.  Please keep us informed how you're doing, everyone here cares, we're in the same situation.