Myelofibrosis

Hello to everyone,

I was diagnosed at age 46 , in April 2001 with mf. I continue working as a massage therapist part time until June 2005.  I would only get my blood checked every2-3 weeks.  My energy level was getting lower and my spleen was getting bigger.  The oncologist started me on Hydrea 500mg 1xday but my platelets started going down . He reduced the amount to 3xweek.  Taking the pills was giving me a lot of sharp pains in different areas in my body and my feet were very sore.  In 2007 my spleen was taking more space in my body.My sleeping and mobility  was very uncomfortable.  My platelets were down to 54 and the energy was getting lower. With the oncologist of Ottawa Canada, I therefore decided to get my spleen removed.  On the 2 Nov.2007 the  spleen weighting 20lbs was removed. This was a big operation, but everything went well and they send me home 4 days after.  I was on tylenol3 for 6 days but constipation started and I stop taking them. I then was able to take tylenol extra strenght for 2-3 days. Then the 14 Nov. my left side started to hurt me so much that I could not breath.  I ended up to the hospital where they had to put me on morphine and tylenol extra strengh.  They kept me 2 days and send me home with endocet where again the pain finally left me. At the hospital they gave me a scan test where they found a deposit of blood and a big bruise on the left side .  Then again because of the pills endocet I got very constipated and for 2nd time have to struggle to manage to empty my bowels. The monday after I started to get very sharp pains in my feet and bottom of my legs.  I could not stand or walk too long with that. I still feel that at this moment and placing my legs up and laying down with hot pads and chinese oil on my legs the pains is almost gone in the morning.  I went to see my Oncologist on the 28 Nov.  He ask me to take B12 and folic acid with vit.D on top of my Multi vit. and euchanacea , Vi.C , HMS90 .  I also have diabetes type 2 since 2000.  I manage with that ok. I also watch what I eat and cut my fat intake by 20% I eat more veg. and fruits and take moderate proteins.  I also have 2-3 donners for bone marrow which are a match with me so if I have to, I will probably proceed to a mini bone marrow transplant in the futur.  Hopefully this will give good input for everyone.  Thanks to all of you who writes us their info .  God bless you all!

Marie from Canada

On 12/3/2007 Marie-Claire wrote:

Hello to everyone,

I was diagnosed at age 46 , in April 2001 with mf. I continue working as a massage therapist part time until June 2005.  I would only get my blood checked every2-3 weeks.  My energy level was getting lower and my spleen was getting bigger.  The oncologist started me on Hydrea 500mg 1xday but my platelets started going down . He reduced the amount to 3xweek.  Taking the pills was giving me a lot of sharp pains in different areas in my body and my feet were very sore.  In 2007 my spleen was taking more space in my body.My sleeping and mobility  was very uncomfortable.  My platelets were down to 54 and the energy was getting lower. With the oncologist of Ottawa Canada, I therefore decided to get my spleen removed.  On the 2 Nov.2007 the  spleen weighting 20lbs was removed. This was a big operation, but everything went well and they send me home 4 days after.  I was on tylenol3 for 6 days but constipation started and I stop taking them. I then was able to take tylenol extra strenght for 2-3 days. Then the 14 Nov. my left side started to hurt me so much that I could not breath.  I ended up to the hospital where they had to put me on morphine and tylenol extra strengh.  They kept me 2 days and send me home with endocet where again the pain finally left me. At the hospital they gave me a scan test where they found a deposit of blood and a big bruise on the left side .  Then again because of the pills endocet I got very constipated and for 2nd time have to struggle to manage to empty my bowels. The monday after I started to get very sharp pains in my feet and bottom of my legs.  I could not stand or walk too long with that. I still feel that at this moment and placing my legs up and laying down with hot pads and chinese oil on my legs the pains is almost gone in the morning.  I went to see my Oncologist on the 28 Nov.  He ask me to take B12 and folic acid with vit.D on top of my Multi vit. and euchanacea , Vi.C , HMS90 .  I also have diabetes type 2 since 2000.  I manage with that ok. I also watch what I eat and cut my fat intake by 20% I eat more veg. and fruits and take moderate proteins.  I also have 2-3 donners for bone marrow which are a match with me so if I have to, I will probably proceed to a mini bone marrow transplant in the futur.  Hopefully this will give good input for everyone.  Thanks to all of you who writes us their info .  God bless you all!

Marie from Canada

Hello to everyone,

I forgot to let you know that after the operation my platelets went up to 300 and are continuing to go up.  My hemoglobin as of a week ago were up to 95 and now the platelets are up to 485.  I'm feeling ok except the feet and legs are still very sore at times.  Hopefully health will get better.

Marie from Canada 

On 12/3/2007 Marie-Claire wrote:

Hello to everyone,

I was diagnosed at age 46 , in April 2001 with mf. I continue working as a massage therapist part time until June 2005.  I would only get my blood checked every2-3 weeks.  My energy level was getting lower and my spleen was getting bigger.  The oncologist started me on Hydrea 500mg 1xday but my platelets started going down . He reduced the amount to 3xweek.  Taking the pills was giving me a lot of sharp pains in different areas in my body and my feet were very sore.  In 2007 my spleen was taking more space in my body.My sleeping and mobility  was very uncomfortable.  My platelets were down to 54 and the energy was getting lower. With the oncologist of Ottawa Canada, I therefore decided to get my spleen removed.  On the 2 Nov.2007 the  spleen weighting 20lbs was removed. This was a big operation, but everything went well and they send me home 4 days after.  I was on tylenol3 for 6 days but constipation started and I stop taking them. I then was able to take tylenol extra strenght for 2-3 days. Then the 14 Nov. my left side started to hurt me so much that I could not breath.  I ended up to the hospital where they had to put me on morphine and tylenol extra strengh.  They kept me 2 days and send me home with endocet where again the pain finally left me. At the hospital they gave me a scan test where they found a deposit of blood and a big bruise on the left side .  Then again because of the pills endocet I got very constipated and for 2nd time have to struggle to manage to empty my bowels. The monday after I started to get very sharp pains in my feet and bottom of my legs.  I could not stand or walk too long with that. I still feel that at this moment and placing my legs up and laying down with hot pads and chinese oil on my legs the pains is almost gone in the morning.  I went to see my Oncologist on the 28 Nov.  He ask me to take B12 and folic acid with vit.D on top of my Multi vit. and euchanacea , Vi.C , HMS90 .  I also have diabetes type 2 since 2000.  I manage with that ok. I also watch what I eat and cut my fat intake by 20% I eat more veg. and fruits and take moderate proteins.  I also have 2-3 donners for bone marrow which are a match with me so if I have to, I will probably proceed to a mini bone marrow transplant in the futur.  Hopefully this will give good input for everyone.  Thanks to all of you who writes us their info .  God bless you all!

Marie from Canada

Hi Marie from Canada,

Thanks so much for writing here, what you had to say is really important. The Hydrea you mentioned is what they wanted to put my husband on, and he said no, then our general doctor agreed, since it's chemotherapy and could cause more problems than helping.

So far, no symptoms appear.  However, I did some research and found the City of Hope in California, that does stem cell research and transplants for any age patient, in any health condition, sometimes the desparately ill even.  It's just something I pass on to people, since so many other hospitals are too scared of trying sometimes.

Thanks for explaining your symptoms and what's going on, it could help so many others.  This disease is so confusing, confounding and emotional numbing.  There's not much to say, except I send my prayers to keep you boosted up, health wise and emotional wise. 

I really appreciate the information I get here.  It is so good to read others with myelofibrosis. My husband has mf.

We went to M.D.Anderson last week and don't have to go back for 6 months.  That is the longest time we have been away from there since June 06.  He had a CBC and his lactate dehydrogenase is still very high 1175.  Can anyone out there explain lactate dehydrogenase?

Thanks for being there.

retired teacher

On 12/11/2007 retired teacher wrote:

I really appreciate the information I get here.  It is so good to read others with myelofibrosis. My husband has mf.

We went to M.D.Anderson last week and don't have to go back for 6 months.  That is the longest time we have been away from there since June 06.  He had a CBC and his lactate dehydrogenase is still very high 1175.  Can anyone out there explain lactate dehydrogenase?

Thanks for being there.

retired teacher

Hi Retired Teacher,

I have no information for you, but had to write to say.... Imagine 6 months!!  Wow, that's really wonderful news. 

Friday, the specialist called up to tell us that my husband's blood test was just wonderful, perfectly normal, there's nothing to report.  It felt good that she took the time to call herself, and the report, well, it puts smiles on our faces.

Nothing else to say, except, I'm so glad your husband and you are doing well.  Prayer really helps.  Have a wonderful Christmas, and a Happy Joyous Healthy New Year, 2008 - 2009 - 2010 and so forth.

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

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. 

Dear Very Hopeful,

How did your appointment go?

I have been substituting this month and I have had little time to go on the internet.

Lee is doing okay.  He looks good and feels pretty good.

Retired teacher

Hi Everyone,

It has been over a month since someone has posted on this message board.  I hope all are okay.  I know that Allen was to go to his doctor the following Friday, but have not hear from them.  I hope very hopeful is okay.  We have had the flu and were really sick for two days and then not feeling well for about 2 weeks.  I miss hearing from you all.

Retired teacher

On 1/16/2007 Eeyoretwins wrote:

 

On 12/8/2006 Viv_c wrote:

I would just like to wish everyone better health and high blood counts in the coming year. This past year has been rough on us so with a little luck and a lot of prayers maybe we can get thru 2007 in better shape. Keep those spirits up and try to count your blessings each and every day. I am holding steady with mine, some days are better than others but I try to meet each one with a smile and a lil laughter. God bless each and every one of you.

I would like to thank you for the well wishes, and extend my own to all those who frequent here.  I hope this new year finds you all with positive outlooks.

 I realize this thread has not had much action for a while, but was hoping by posting, maybe I let this thread be re-born again with some activity.

I was just diagnosed with myelofibrosis.  I have read all I can find online, and have reached a point of mental overload, so I can't even begin to think of a question to ask. 

Still getting over the shock, I suppose my only concern is how much of my 12 year old twins lives, am I going to get to continue to enjoy? 

For a rare condition with no cure, there certainly is a wide range of time frames regarding expectations of life.

 Thank you for allowing me to take up space on here, and I hope you all have a great day!