Myelofibrosis

On 5/8/2008 very hopeful wrote:

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.

Hi Very Hopeful,

Actually there is alot of research going on to treat Mf. You name it, Oregon, Texas, Cleveland, California, are all conducting Clinical Trials to find answers. Once the Baby Boomers join the Mf age group the disease will gain in numbers and that should create even more funding to find ways to treat/cure Mf.

I am currently taking Thalidomide to clear the fiber out of my Bone Marrow. I have been on it for 30 days now. My Hematologist is working under the direction of one of the Asst.Professors of Hematology at OHSU. Since taking Thalidomide my Hg. has steadied somewhat and I have not had a transfusion for 12 weeks now. My Hematologist does not believe in any more transfusions than necessary.

God Bless You,

Bill

On 5/18/2008 forester wrote:

 

On 5/8/2008 very hopeful wrote:

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.

Hi Very Hopeful,

Actually there is alot of research going on to treat Mf. You name it, Oregon, Texas, Cleveland, California, are all conducting Clinical Trials to find answers. Once the Baby Boomers join the Mf age group the disease will gain in numbers and that should create even more funding to find ways to treat/cure Mf.

I am currently taking Thalidomide to clear the fiber out of my Bone Marrow. I have been on it for 30 days now. My Hematologist is working under the direction of one of the Asst.Professors of Hematology at OHSU. Since taking Thalidomide my Hg. has steadied somewhat and I have not had a transfusion for 12 weeks now. My Hematologist does not believe in any more transfusions than necessary.

God Bless You,

Bill

Hi Bill, (Forester),

Can't thank you enough for answering, it's just wonderful to hear this news, which I will certainly check out.   Last September, when the doctors told my husband, Allen, 66 yrs, he had this disease, which cannot be treated until symptoms show, I lived in dread and great depression knowing that nothing can be done until ....   Then I realized to stop that and live life, thoroughly trusting G-d.  Symptoms have never shown itself.  He still works a full time job, takes care of the house and all that entails, mowing, gardening, even bicycling, etc.,   However, I still did research to be prepared, and found little offered, just the City of Hope in California.

Your email has brought great hope to me.  Not only are you right about us Boomers, for we have changed "everything", but explaining about that drug is something I'll ask his hematologist about.  We live in Rochester, New York, where there's little research and knowledge even though Strong Hospital is in the forefront of "other" researches.

So far, as I've said, there's been no symptoms, and his blood tests (no JAK 2) are fine, although he still has the same enlarged liver and spleen that he's had for a long long long time.

So how did the "experts" determine Allen has MF.  Last September he developed a black & white spot in his inner thigh, which increased and swelled from 1 inch to envelope most of his thigh.   Apparently it wouldn't clot and kept bleeding internally, eventually they operated to drain the blood, which worked.  But they couldn't figure out why he bleed so much.  A few weeks later, they did a blood marrow test, which showed nothing as well, but determined he had MF.  Something we still don't think he has, but of course, we took it to heart, and did our research , while I found this board and poured my heart out, finding much comfort and knowledge.

Please keep in contact here, as I consider you a great source of comfort,  as while as information.  Another contact person here is Retired Teacher, who has tremendously helped me.  Thank you for answering, thank you for being here, thank you for your prayers.  I will include you as well, may G-d bless you.

Arlene

Hi Bill,

Many thanks again, you're a breath of fresh air.  This news will really help Retired Teacher, as her husband is taking blood transfusions occasionally.  I'll also relay this news to our specialist, and hopefully she's up-to-date on this, at least it will test her knowledge.

Please keep writing with how you are, and any other news you have, it really hopes all of us.

I pray that Retired Teacher reads these, and will ask their specialist also.

Good news for all.

Thanks again,  Arlene

Hi Retired Teacher,

Didn't know how each to reach you with this exciting news. 

Another person is now responding to this message board for MF, and has great news.  Please look up the last few messages, from Forester, he has great news that you should ask your specialist about.

There are now many clincal trials going on, as well as the prescriptive:  Thalidomide, which we heard about years and years ago for birth defects, but now it's being used for MF with great results.

So far, Allen, my husband, is fine, no symptoms and is still working full time, but just hearing about this drug puts a smile on my face.

Please let me know how you're both doing. 

Many blessings, Arlene

On 5/18/2008 very hopeful wrote:

Hi Retired Teacher,

Didn't know how each to reach you with this exciting news. 

Another person is now responding to this message board for MF, and has great news.  Please look up the last few messages, from Forester, he has great news that you should ask your specialist about.

There are now many clincal trials going on, as well as the prescriptive:  Thalidomide, which we heard about years and years ago for birth defects, but now it's being used for MF with great results.

So far, Allen, my husband, is fine, no symptoms and is still working full time, but just hearing about this drug puts a smile on my face.

Please let me know how you're both doing. 

Many blessings, Arlene

Hi Very Hopeful,

Sorry that I haven't posted lately.  The month of May was filled with graduations and weddings.  It is really fun to be a part of our grandkids weddings and graduations.

We went to M.D.Anderson Cancer Center the first week of June.  Our doctor said that Lee didn't need to go back to Houston for a year.  That is wonderful.  It is doing fine, he gets really tired, but he works every day.  Our small town doctor changed again (we are so small, it is hard to keep a doctor for a long time).  He wanted Lee to go to K.U. Cancer Center, which is 80 miles from home,  That is much much closer than Houston.  We went to K.U. Cancer Center in Kansas City the second week of June.  They have treated Myelofibrosis.  Our local doctor thought that if we had a problem they would know what to do for Lee.  The first onc/hem we went to didn't know any thing about Myelofibrosis.

It is good to hear that Allen is going so well too.  Please keep in touch, it really does help to talk to someone in the same boat.

God bless you!

retired teacher

On 6/24/2008 retired teacher wrote:

 

On 5/18/2008 very hopeful wrote:

Hi Retired Teacher,

Didn't know how each to reach you with this exciting news. 

Another person is now responding to this message board for MF, and has great news.  Please look up the last few messages, from Forester, he has great news that you should ask your specialist about.

There are now many clincal trials going on, as well as the prescriptive:  Thalidomide, which we heard about years and years ago for birth defects, but now it's being used for MF with great results.

So far, Allen, my husband, is fine, no symptoms and is still working full time, but just hearing about this drug puts a smile on my face.

Please let me know how you're both doing. 

Many blessings, Arlene

Hi Very Hopeful,

Sorry that I haven't posted lately.  The month of May was filled with graduations and weddings.  It is really fun to be a part of our grandkids weddings and graduations.

We went to M.D.Anderson Cancer Center the first week of June.  Our doctor said that Lee didn't need to go back to Houston for a year.  That is wonderful.  It is doing fine, he gets really tired, but he works every day.  Our small town doctor changed again (we are so small, it is hard to keep a doctor for a long time).  He wanted Lee to go to K.U. Cancer Center, which is 80 miles from home,  That is much much closer than Houston.  We went to K.U. Cancer Center in Kansas City the second week of June.  They have treated Myelofibrosis.  Our local doctor thought that if we had a problem they would know what to do for Lee.  The first onc/hem we went to didn't know any thing about Myelofibrosis.

It is good to hear that Allen is going so well too.  Please keep in touch, it really does help to talk to someone in the same boat.

God bless you!

retired teacher

Hi Retired Teacher, 

I'm so very very happy to hear from you, even more happy that things are going so well for Lee.  It's really great news that the doctor doesn't need to see him for such a long period of time.

We're been fine here also.  Although Allen broke down and admitted that he feels he under a death sentence since last September when the diagnosis came.  That really explained why he's been so anxious and nervous since then.  He finds it hard to express what's going on inside, and that makes life so much harder for both of us. 

Then again, his contract job was over last month and now he's home "constantly", you could imagine the stress here.  Yes, he's constantly doing something though, gardening, taking care of the house, bicycling again (thank the Lord he's back to that, since his injury last September that led to the diagnosis!!).  He hardly even rests, it's probably the nervous energy and the fear of being tired and sick that drives him.

His blood tests have also been fine.  In fact, I'm really questioning whether he has this or not, however, I know it's G-d who is in total control and is providing good health for him.

Yes, please keep in touch with me, although I do know how busy life gets.  I've also noticed how this board hasn't gotten really slow in the past few months, do you think this subject line is old and needs updating for more people to find it?

Much love,  Arlene

On 6/24/2008 very hopeful wrote:

 

On 6/24/2008 retired teacher wrote:

 

On 5/18/2008 very hopeful wrote:

Hi Retired Teacher,

Didn't know how each to reach you with this exciting news. 

Another person is now responding to this message board for MF, and has great news.  Please look up the last few messages, from Forester, he has great news that you should ask your specialist about.

There are now many clincal trials going on, as well as the prescriptive:  Thalidomide, which we heard about years and years ago for birth defects, but now it's being used for MF with great results.

So far, Allen, my husband, is fine, no symptoms and is still working full time, but just hearing about this drug puts a smile on my face.

Please let me know how you're both doing. 

Many blessings, Arlene

Hi Very Hopeful,

Sorry that I haven't posted lately.  The month of May was filled with graduations and weddings.  It is really fun to be a part of our grandkids weddings and graduations.

We went to M.D.Anderson Cancer Center the first week of June.  Our doctor said that Lee didn't need to go back to Houston for a year.  That is wonderful.  It is doing fine, he gets really tired, but he works every day.  Our small town doctor changed again (we are so small, it is hard to keep a doctor for a long time).  He wanted Lee to go to K.U. Cancer Center, which is 80 miles from home,  That is much much closer than Houston.  We went to K.U. Cancer Center in Kansas City the second week of June.  They have treated Myelofibrosis.  Our local doctor thought that if we had a problem they would know what to do for Lee.  The first onc/hem we went to didn't know any thing about Myelofibrosis.

It is good to hear that Allen is going so well too.  Please keep in touch, it really does help to talk to someone in the same boat.

God bless you!

retired teacher

Hi Retired Teacher, 

I'm so very very happy to hear from you, even more happy that things are going so well for Lee.  It's really great news that the doctor doesn't need to see him for such a long period of time.

We're been fine here also.  Although Allen broke down and admitted that he feels he under a death sentence since last September when the diagnosis came.  That really explained why he's been so anxious and nervous since then.  He finds it hard to express what's going on inside, and that makes life so much harder for both of us. 

Then again, his contract job was over last month and now he's home "constantly", you could imagine the stress here.  Yes, he's constantly doing something though, gardening, taking care of the house, bicycling again (thank the Lord he's back to that, since his injury last September that led to the diagnosis!!).  He hardly even rests, it's probably the nervous energy and the fear of being tired and sick that drives him.

His blood tests have also been fine.  In fact, I'm really questioning whether he has this or not, however, I know it's G-d who is in total control and is providing good health for him.

Yes, please keep in touch with me, although I do know how busy life gets.  I've also noticed how this board hasn't gotten really slow in the past few months, do you think this subject line is old and needs updating for more people to find it?

Much love,  Arlene

 

Hi Arlene,

It is good to hear from you.  Thanks!

My husband is also very quiet.  I think he keeps so busy to keep his mind off his myelofibrosis.

On another Cancer message board there is a man that has had myelofibrosis for 18 years.  I think that myelofibrosis is so rare that people don't know how long people live with it.

Take care, God Bless,

retired teacher

Hi Retired Teacher,

I agree, people know hardly anything about this, and life spams are something that really confuses and upsets everyone.  Especially when all the literature, research, etc., says that most people will die (it's difficult writing that word) within 5 years of the diagnosis.

Have you ever heard of anything so stupidly said?  Allen has had an enlarged spleen and liver for over 10 years, was only diagnosed last September, still no symptoms (thankfully), and yet thinks of himself as under a death sentence.

I've tried to say to him that everyone will die eventually, including himself.    If someone wants to be negative, and go around in their life pouting, they could say that from birth there's a death sentence.   But I know that the Lord made us to live our life with conviction and positive thoughts, heavens.... He gave us a life confirming sentence!!   So, now I'm tempted to say to Allen sometimes, why don't you get a shovel and get it over with, dig your own hole under the tree out back???!!!  I'm really smiling right now when I think of this.

When someone is negative, it just shortens your life.  I try to keep up with the advances of MF so we're aware of what's going on, while living our lives.

Thanks for being there, you're sensible, smart and very comforting, and allow me to blow off these emotions.  That really helps.

stay well, Arlene

Hi Arlene,

We were looking at some pictures taken when Lee was first dx, and he looks so much younger now than early 2006.

I wonder what the Lord has in mind for us.  We are so much more sensitive to others with illnesses.

We live in the country.  I would like to get a part time job, but with the cost of gas I'm not sure that would be feasible.  I really appreciate talking to you.  Thanks for being there.

God Bless,

Virginia--retired teacher

Hi there again,

When you said sensitive to others, I really feel that what the Lord wants is for us to be there for so many others, not only to pass on whatever research we're learning, but to encouragement. 

That you allowed me to spill my emotions flat out, the anxiousness and worry about losing Allen, as well as being alone then are real fears that so many others have and are scared to communicate.

Sometimes all we need is a person to listen.  It's the Lord's plan to just love.  Many times He places us in trial positions that will grow us, after all, it's in the problem areas that we most grow spiritually.  That Lee and Allen are doing fine, and even looking younger so shows us that by giving out we're meeting His plan for us.  This might even be a ministry onto it's own.

Considering the price of gas now, many are just staying home.  We live in Rochester, New York where it's over $ 4.50 for basic gas!!!   That puts a crimp in everything and for everyone. 

I'm even learning to appreciate Allen more than ever, and all he does daily, from gardening, taking care of his vegetable garden, household chores, even food shopping and cooking right now, and so much more.  Seems he doesn't sit still ever, which is probably good for him.

You and I have great husbands, who WILL live a long time..... 

much love, Arlene