Myelofibrosis

Hi, my dad has myelofibrosis and will be 59 in a couple of months .  Prior to his diagnosis he went for a physical back in 1992 and was told they thought he had Leukemia due to blood testing.  He was told he just had some rare blood disorder, no big deal.  He continued to live his life normally until complications like joint pain, shortness of breath and spleen swelling caused him to go to the dr and then he was diagnosed with myelofibrosis.  That was back in 2004.  We have been to some of the top Oncologists at Johns Hopkins Hospital and due to his circumstances there is not anything that can be done.  Basically he has been through every medication and therapy listed except the transplants.  Transplants are not an option and either is a splenectomy.  His spleen is the size of a football.  He started getting sporadic transplants for a year and now gets transfused every other week.  He is a landscaper and although he occasionally misses a day of work he is continuing to work (he is my hero!).  He has withered away to skin and bones except for his protruding stomach.  He is starting treatment for Lymphedema tomorrow because he can no longer get his shoes on due to swelling in his legs and feet.  He has really been through some tough times but every time we think he is going to hang on much longer he pulls through.  I hope this provides some hope to all of you out there dealing with this cancer.  The lack of information is very frustrating.  I truly believe my dad has had this since 1992, but no one really knew what it was.  If so this surpasses all the prognosis that I have found.  Please feel free to contact me if you have any additional information or just want to discuss this cancer. 

Hi Horsecrazy

I just want to say your Dads a great fella, I hope the best for you both

Angela x

 

On 3/6/2008 Angelac wrote:

Hi Horsecrazy

I just want to say your Dads a great fella, I hope the best for you both

Angela x

Thank you. 

Hi Horsecrazy,

I am a 64 year old male who was diagnosed with MF two years ago and have only been treated with Procrit and Aranesp at this point. My last Bone Marrow Biopsy revealed that Fiber has totally cloged my Marrow which was evidenced by my declining Hmg. numbers, and double vision. I had two units of RBC's and I'm good to go for the next month ? During which time my Hematologist will confer with the Hematologist at Oregon Health Sciences University to plan the next treatment method for me.

I retired in Jan. '08 and I am so happy that I did. Every morning I wake up and Thank God that I don't have to go to job/work today. I am however active working around our 10 ac.of scattered timber for about 4hrs.before my Snooze time    kicks in for 20-30 mins. Then I resume my normal day.

I love working out of doors and your story of your Dad still working is an inspiration to me. I find myself searching for the balanced amount of work/rest to get all of the mileage I can out of the transfusions, but, still stay busy with my chores.

Quite a routine change for a guy who had a full time forestry job just two months ago and no Snooze.

Give your Dad a hug. They don't make em like they used to.

May God Bless You and your Dad.

 

On 3/6/2008 horsecrazy wrote:

 

On 3/6/2008 Angelac wrote:

Hi Horsecrazy

I just want to say your Dads a great fella, I hope the best for you both

Angela x

Thank you. 

 

Hi RetiredForestService,

I'm sorry to hear you too are living with this cancer.  My dad's bone marrow biopsy was the same.  Are you experiencing issues with your spleen swelling?  We were told that once the bone marrow is shot this is when the spleen begins getting over worked and inflammed due to trying to produce the blood cells.  My mom just told me that my dad's went from football sized to basketball sized.  My dad did the Procrit and Thalidomide.  He went off the Thalidomide, but had to go back on 2 years ago and is still on that along with Hydroxrea.  He also takes motrin throughout each day, a strong water pill & potassium pill.  He just finished the lymphedeam therapy and now is wearing pressure support nylons during the day and a different type at night.  He said his legs are super tired out by lunch time.  His spleen seems to be swelling more and more.  So many (non-medical) people kept saying that he was in danger of his spleen bursting, but his Hematology doctor told us that is very rare and not to worry.  His spleen gives him a lot of discomfort and his joints hurt.  He also gets winded very easily.  I will continue to update this board with his progress and treatment.  I'm hoping some type of breakthrough will happen to cure this cancer.  Thank you for your kind words and God bless you as well.

3/11/2008 RetiredForestService wrote:

Hi Horsecrazy,

I am a 64 year old male who was diagnosed with MF two years ago and have only been treated with Procrit and Aranesp at this point. My last Bone Marrow Biopsy revealed that Fiber has totally cloged my Marrow which was evidenced by my declining Hmg. numbers, and double vision. I had two units of RBC's and I'm good to go for the next month ? During which time my Hematologist will confer with the Hematologist at Oregon Health Sciences University to plan the next treatment method for me.

I retired in Jan. '08 and I am so happy that I did. Every morning I wake up and Thank God that I don't have to go to job/work today. I am however active working around our 10 ac.of scattered timber for about 4hrs.before my Snooze time    kicks in for 20-30 mins. Then I resume my normal day.

I love working out of doors and your story of your Dad still working is an inspiration to me. I find myself searching for the balanced amount of work/rest to get all of the mileage I can out of the transfusions, but, still stay busy with my chores.

Quite a routine change for a guy who had a full time forestry job just two months ago and no Snooze.

Give your Dad a hug. They don't make em like they used to.

May God Bless You and your Dad.

 

On 3/6/2008 horsecrazy wrote:

 

On 3/6/2008 Angelac wrote:

Hi Horsecrazy

I just want to say your Dads a great fella, I hope the best for you both

Angela x

Thank you. 

 

 

Hello Horsecrazy,

From all I am told we all share the same disease, but, we react differently to it. God made us all unique in one way, or, another. Two months ago my Spleen had actually shrunk in size and the Hematologist took that as good news. Then the BMB two weeks ago showed an increase in fiber ?  Yes, I do get winded, but, living on the slope can cause that too.

 I am still waiting to hear from my Hematologist as to what OHSU has to say. Next week I have my next CBC, so, I am praying for good numbers.

Does you Dad get hives ?  Do his ankles swell ?  How is his vision ?  How long has he had MF ? 

I hope you and your Dad don't mind me praying for you ?  I know that God can use any of us to do His will. Praying keeps me positive and focused on Him and not on myself.

 I'll get back to you when I hear from my Dr's.

 

On 3/13/2008 RetiredForestService wrote:

Hello Horsecrazy,

From all I am told we all share the same disease, but, we react differently to it. God made us all unique in one way, or, another. Two months ago my Spleen had actually shrunk in size and the Hematologist took that as good news. Then the BMB two weeks ago showed an increase in fiber ?  Yes, I do get winded, but, living on the slope can cause that too.

 I am still waiting to hear from my Hematologist as to what OHSU has to say. Next week I have my next CBC, so, I am praying for good numbers.

Does you Dad get hives ?  Do his ankles swell ?  How is his vision ?  How long has he had MF ? 

I hope you and your Dad don't mind me praying for you ?  I know that God can use any of us to do His will. Praying keeps me positive and focused on Him and not on myself.

 I'll get back to you when I hear from my Dr's.

Hi Retired Forest Service,

My husband too has MF, he was dx two years ago. He just turned 69. Our doctor sent him to M.D. Anderson in Houston.  He was on a clinical trial and did 14 cycles to chemo.  He is feeling better.  He still get tired, but not as bad.  He now takes allopurinol for high levels of uric acid.  Do you have blasts in your CBC?  The indicator for my husband was elevated white blood count, but I see from this message board that it differs with different people.

I will keep you in my prayers.  How often do you have a BMB?  It is good to talk to someone that has this cancer.

 

On 3/14/2008 retired teacher wrote:

 

On 3/13/2008 RetiredForestService wrote:

Hello Horsecrazy,

From all I am told we all share the same disease, but, we react differently to it. God made us all unique in one way, or, another. Two months ago my Spleen had actually shrunk in size and the Hematologist took that as good news. Then the BMB two weeks ago showed an increase in fiber ?  Yes, I do get winded, but, living on the slope can cause that too.

 I am still waiting to hear from my Hematologist as to what OHSU has to say. Next week I have my next CBC, so, I am praying for good numbers.

Does you Dad get hives ?  Do his ankles swell ?  How is his vision ?  How long has he had MF ? 

I hope you and your Dad don't mind me praying for you ?  I know that God can use any of us to do His will. Praying keeps me positive and focused on Him and not on myself.

 I'll get back to you when I hear from my Dr's.

Hi Retired Forest Service,

My husband too has MF, he was dx two years ago. He just turned 69. Our doctor sent him to M.D. Anderson in Houston.  He was on a clinical trial and did 14 cycles to chemo.  He is feeling better.  He still get tired, but not as bad.  He now takes allopurinol for high levels of uric acid.  Do you have blasts in your CBC?  The indicator for my husband was elevated white blood count, but I see from this message board that it differs with different people.

I will keep you in my prayers.  How often do you have a BMB?  It is good to talk to someone that has this cancer.

Hi Horsecrazy,and retired teacher,

My screen name was RetiredForestService, but, I had to change it to forester as I forgot my old password and had to rejoin. The system wouldn't let me keep my old screen name.Sorry !

Horsecrazy, I still havn't gotten a new treatment plan from my hematologist's yet. However, the FDA is reevaluating the use of Aranesp & Procrit, so I imagine that my have something to do with the plan ?  Anyway, I am patiently waiting for an answer, and still praying for you too.

retired teacher, Yes it is good to talk to others afflicted with the same disease and to pray for eachother. Interesting how much we can help eachother.

I had just, within the last two weeks, found a web site that lists clinical trials for different cancers, but, not myelofibrosis ? It is good to hear of some more treatments. If I lose the use of Aranesp I may become transfusion dependent ?  God is in control and He will see us through. I know what His plan is for us.    (Jer 29:11)  

I have never heard of Blasts detected in my CBC's. I will add that to my list of "ask the Dr." questions. I have low Red Blood Cell counts. My White Blood Cells are always normal ? You are very correct when you say that symptoms vary with different people.

When my count gets up to 10, or better, I have a tough time telling myself that I even have a blood disorder. I just want to get out and run. Working out a good balance becomes the challenge.

I have had 5 BMB's in two years.

Thanks for sharing and your prayers.  

 

Hi Forester,

Thanks for writing back.

Some of the people that we have talked to with MF say that they were healthy all their life until they got MF.  That is the the same way with my husband.

The clinical trial was a 21 day cycle, five days of chemo then sixteen days off.  After the first two cycles we were allowed to go back home to Kansas for the two weeks at home.  My husband lost his white hair, but when it came back his hair is more black than white.  M. D. Anderson Cancer Center in Houston is truly good place to go.  The people are so uplifting.  From the doctors, nurses, front office people and even just the people on the elevator, they are all friendly and helpful.

Please keep in touch and let us know how you are doing.

You are in our prayers

retired teacher

Dear Forester,

I sent a message yesterday, but I don't find it on the message board. Did you get it?

How are you doing?

Retired Teacher