My husband: MF and ET diagnosed 25 years ago at age 40.
I lead with this because at the time life expectancy was 8 years, he is now 65 and he has never stopped working. His spleen is a bit enlarged (since first dxd) and so is his liver. He is on no treatment except Anegrelide for the ET. He did start eating more healthy.
He was first dxd with ET (Essential thrombocythemia - platelets grew to a 1.3 M. His "Boston" Chief of Hematology couldn't get a BMB with two tries - when I asked to get another doctor to do it he said, "He doesn't really need one....When and if he gets MF, I can tell through blood tests.....AND, Do you want me to be the laughing stock of the hospital?"
With that, we went to NYC and saw super specialist Dr. Silver who easily did the BMB and we walked around enjoying NYC all day. The BMB confirmed MF. Dr. Silver suggested a BMT.
After seeing Dr. Silver, my husband left the "Narcissistic Harvard Teaching Hospital Hematologist" and started seeing Dr. Stone at Dana Farber - what a God send. Stone thought it was too soon to have a BMT, but suggested that we speak to the BMT depts at 3 of the major hospitals in Boston. We did and put his name on the transplant list as his only sibling was not a match. We didn't have to decide until a match was found. I read all the MF BMT support group messages there were at the time...lots of tears. No match ever came.
At that time blood tests didn't show up on graphs making it difficult to follow blood counts and cell shapes over time, so I created my own on Excel and shared it with the doctors. Looking at the graph helped us feel at ease...sometimes the numbers go off, but then they would become "better".
All this said boils down to these message boards helped us push for more and better answers; asking for more testing and the latest options. Sometimes I get overwhelmed and scared with info from message boards. So I leave the reading for another day.
Hi Kathy. Welcome to Connect! Thank you for sharing your husband’s experience about his 25 year with ET and MF.
Kudos to both of you taking matters into your hands to find a better doctor; one who puts the patient’s needs first and doesn’t let ego take center stage.
It’s very encouraging to see that your husband continues to do well with the Anegrelide keeping his platelet level under control.
I’m curious about how long ago the BMT was suggested. I realize no match was found but if that was 20 years ago, so much has changed since then. From my latest information there are over 41 million members and 803,000 cord blood units on the international donor registry. That has grown by 20 million since I had my BMT almost 6 years ago. So the prospects of finding a donor for your husband is much more vast than it was 20+ years ago.
Has there been any changes in his MF diagnosis?
My husband was diagnosed with myelofibrosis a month ago. He has had 6 platelet transfusions. His platelets go below 20 about every 3 days. Has any one else had this problem?
As far as I know there is no cure for MF. When I was diagnosed I had just turned 60 years old. They told me at Stanford Medical Center that the average life expectancy was 5yr. Treatments were for the most part directed towards symptoms. I tried one route for a while and then switched to a doctor that thought a different path was better. He has moved me around from this to that to something else. Some worked better than others. Some had side effects that were a bit unpleasant, but the overall effect was worth it. After a long run of taking both Dacogen and Vonjo, things reached a point that we needed to stop the Chemo (Dacogen). Within the month things turned around dramatically. My CBC's came up to low-normal. I didn't need any more Blood Transfusions, and my twice a week routine became once a month. This went on for a year, and then turned back around and started dropping very rapidly. Numbers were falling as fast as they could test them. That was about 2 months ago. They started the Dacogen infusions again and put me on Ojjaara. My need for Blood Transfusions has returned. I have a new set of side effects with the Ojjaara vs the Vonjo. I get really dissy with the new drug. I will be 77 yr old in October. So... don't say that they can't do anything about MF! I'm still here. As far as I can see, my quality of life is just as good as most of the other OLD PEOPLE I see fumblin around. Don't get discouraged, and stay positive. I've seen a few "Miracle" drugs come down the road, and for the most part each one has been a little better than the last.
Snakebite, my husband was diagnosed with MF one month ago. I showed him your comments and I want to thank you because it gave him hope and brought tears to his eyes. We know every prognosis is different but without hope we have nothing. Thanks again.
Snakebite, my husband was diagnosed with MF one month ago. I showed him your comments and I want to thank you because it gave him hope and brought tears to his eyes. We know every prognosis is different but without hope we have nothing. Thanks again.
Tell him to hang in there. I am still doing great. No blood needed and no other drugs outside of the Ojjaara. CBC has been holding. Just got back from a week camping. How about that! Every day they are making gains. Living with MF is now doable. God bless you and give you hope.
Yes ! I have been diagnosed with MF , taking JAKAFI my lipid levels skyrocketed
Low good cholesterol!
Just had blood tests done
I take half dose of JAKAFI
Because full dose brought my numbers very low including my hemoglobin
Very anemic !
Have to monitor this illness closely! Affects entire body and all systems!
Good luck ! Educate yourself on this topic
Welcome new members,@vas and @erincarrasco2024. As you may have learned as you start on this journey with myelofibrosis, it is a bone marrow cancer that disrupts the body's normal production of blood cells. It can cause scarring in the bone marrow and lead to anemia that can cause weakness and fatigue.
As @snakebite mentioned, treatments are no curative, but can help manage the condition. Treatment can include active surveillance, transfusions, chemotherapy or targeted therapy and sometimes a bone marrow transplant.
What treatment options have your doctors discussed with you? Have you had a positive cytogenetic test run to determine if there is a mutated gene causing MF?
Colleen, you had asked me to let you know how my husbands appt went with specialist at Charlotte. The Dr. said he was seeing some leukemia cells showing up in his blood work. He didn’t seem to want to give a lot Hope. He told us he would send the treatment to our local oncologist. We had an appt. today with our Dr. he told my husband he would start treatments for 7 days thru pic line with Vidaza. Then off for a month to see how he reacts to the chemo. We have been told from the beginning there is no cure for myelofibrosis which we get and accept, but we don’t understand why they don’t even talk about hope for some time. Maybe it’s because his platelets are always low and has platelet transfusions 2 times a week. My husband has always been very healthy, so it is a nightmare now.
Dax1million
Hi Kathy. Welcome to Connect! Thank you for sharing your husband’s experience about his 25 year with ET and MF.
Kudos to both of you taking matters into your hands to find a better doctor; one who puts the patient’s needs first and doesn’t let ego take center stage.
It’s very encouraging to see that your husband continues to do well with the Anegrelide keeping his platelet level under control.
I’m curious about how long ago the BMT was suggested. I realize no match was found but if that was 20 years ago, so much has changed since then. From my latest information there are over 41 million members and 803,000 cord blood units on the international donor registry. That has grown by 20 million since I had my BMT almost 6 years ago. So the prospects of finding a donor for your husband is much more vast than it was 20+ years ago.
Has there been any changes in his MF diagnosis?
@loribmt asked about changes in my husband's ET & MF of 25 years ago.
There have been no changes in the diagnosis. He had low hemoglobin 2 years ago, so he had to have EPO injections twice. BUT....
BUT, his Hemo Doc and his Urologist a the same hosptial clearly were not reading med notes. He had prostate cancer a year before and proton therapy radiation. His Urologist had said the bleeding was normal (for a year!) but I finally pushed for a colonoscopy which found he was. bleeding from his large intestines. When the two bleeds were cauterized, his hemoglobin went back up.
Just because one has ET/MF doesn 't mean the issues are always due to that illness.
@loribmt asked about changes in my husband's ET & MF of 25 years ago.
There have been no changes in the diagnosis. He had low hemoglobin 2 years ago, so he had to have EPO injections twice. BUT....
BUT, his Hemo Doc and his Urologist a the same hosptial clearly were not reading med notes. He had prostate cancer a year before and proton therapy radiation. His Urologist had said the bleeding was normal (for a year!) but I finally pushed for a colonoscopy which found he was. bleeding from his large intestines. When the two bleeds were cauterized, his hemoglobin went back up.
Just because one has ET/MF doesn 't mean the issues are always due to that illness.
Hi Kathy, We certainly have to be our own advocates for healthcare…this is another example with the unexplained bleeding for your husband! I’m glad this had a happy ending with finding the 2 areas that were the culprits! You did an exemplary job with pushing for an answer!
Your last sentence is spot on! I think sometimes when we have a blood cancer or any illness, we tend attribute unexplained issues to that cause. But it’s not always so! That’s a great reminder. ☺️
Colleen, you had asked me to let you know how my husbands appt went with specialist at Charlotte. The Dr. said he was seeing some leukemia cells showing up in his blood work. He didn’t seem to want to give a lot Hope. He told us he would send the treatment to our local oncologist. We had an appt. today with our Dr. he told my husband he would start treatments for 7 days thru pic line with Vidaza. Then off for a month to see how he reacts to the chemo. We have been told from the beginning there is no cure for myelofibrosis which we get and accept, but we don’t understand why they don’t even talk about hope for some time. Maybe it’s because his platelets are always low and has platelet transfusions 2 times a week. My husband has always been very healthy, so it is a nightmare now.
Dax1million
Excerpt
"... hope is linked to the future and to the plans and wishes you have for the future. A serious illness puts question marks over how much future you will have and what it will be. It threatens your control over your future. ... If it becomes clear that there is no cure, your hope may shift to living the rest of your life as well as possible. There is the hope to love and be loved, to feel good about the life you have lived, and to live in the present moment with satisfaction and a measure of peace."
What does hope look like for you and your husband? What helps to reframe hope?
Excerpt
"... hope is linked to the future and to the plans and wishes you have for the future. A serious illness puts question marks over how much future you will have and what it will be. It threatens your control over your future. ... If it becomes clear that there is no cure, your hope may shift to living the rest of your life as well as possible. There is the hope to love and be loved, to feel good about the life you have lived, and to live in the present moment with satisfaction and a measure of peace."
What does hope look like for you and your husband? What helps to reframe hope?
Colleen, thank you for the nice message and the insert of thoughts that we are facing in this roller coaster ride.
The hardest thing for my husband is he was always a very active person, keeping a perfect yard, repairing anything that needed fixing around the house, or our vehicles. It makes him sad looking around knowing he want be able to do those things. We both pray with Gods wonderful grace and healing of mind and spirit some things can be replaced with other joy and accomplishments in this dark part of life and the sun will shine again. We have loving families to love and friends to cherish and God to guide us.
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Hi Kathy. Welcome to Connect! Thank you for sharing your husband’s experience about his 25 year with ET and MF.
Kudos to both of you taking matters into your hands to find a better doctor; one who puts the patient’s needs first and doesn’t let ego take center stage.
It’s very encouraging to see that your husband continues to do well with the Anegrelide keeping his platelet level under control.
I’m curious about how long ago the BMT was suggested. I realize no match was found but if that was 20 years ago, so much has changed since then. From my latest information there are over 41 million members and 803,000 cord blood units on the international donor registry. That has grown by 20 million since I had my BMT almost 6 years ago. So the prospects of finding a donor for your husband is much more vast than it was 20+ years ago.
Has there been any changes in his MF diagnosis?
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Helpful -
Hug
2 ReactionsMy husband was diagnosed with myelofibrosis a month ago. He has had 6 platelet transfusions. His platelets go below 20 about every 3 days. Has any one else had this problem?
Snakebite, my husband was diagnosed with MF one month ago. I showed him your comments and I want to thank you because it gave him hope and brought tears to his eyes. We know every prognosis is different but without hope we have nothing. Thanks again.
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Like -
Helpful -
Hug
1 ReactionTell him to hang in there. I am still doing great. No blood needed and no other drugs outside of the Ojjaara. CBC has been holding. Just got back from a week camping. How about that! Every day they are making gains. Living with MF is now doable. God bless you and give you hope.
-
Like -
Helpful -
Hug
4 ReactionsYes ! I have been diagnosed with MF , taking JAKAFI my lipid levels skyrocketed
Low good cholesterol!
Just had blood tests done
I take half dose of JAKAFI
Because full dose brought my numbers very low including my hemoglobin
Very anemic !
Have to monitor this illness closely! Affects entire body and all systems!
Good luck ! Educate yourself on this topic
Colleen, you had asked me to let you know how my husbands appt went with specialist at Charlotte. The Dr. said he was seeing some leukemia cells showing up in his blood work. He didn’t seem to want to give a lot Hope. He told us he would send the treatment to our local oncologist. We had an appt. today with our Dr. he told my husband he would start treatments for 7 days thru pic line with Vidaza. Then off for a month to see how he reacts to the chemo. We have been told from the beginning there is no cure for myelofibrosis which we get and accept, but we don’t understand why they don’t even talk about hope for some time. Maybe it’s because his platelets are always low and has platelet transfusions 2 times a week. My husband has always been very healthy, so it is a nightmare now.
Dax1million
@loribmt asked about changes in my husband's ET & MF of 25 years ago.
There have been no changes in the diagnosis. He had low hemoglobin 2 years ago, so he had to have EPO injections twice. BUT....
BUT, his Hemo Doc and his Urologist a the same hosptial clearly were not reading med notes. He had prostate cancer a year before and proton therapy radiation. His Urologist had said the bleeding was normal (for a year!) but I finally pushed for a colonoscopy which found he was. bleeding from his large intestines. When the two bleeds were cauterized, his hemoglobin went back up.
Just because one has ET/MF doesn 't mean the issues are always due to that illness.
-
Like -
Helpful -
Hug
3 ReactionsHi Kathy, We certainly have to be our own advocates for healthcare…this is another example with the unexplained bleeding for your husband! I’m glad this had a happy ending with finding the 2 areas that were the culprits! You did an exemplary job with pushing for an answer!
Your last sentence is spot on! I think sometimes when we have a blood cancer or any illness, we tend attribute unexplained issues to that cause. But it’s not always so! That’s a great reminder. ☺️
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Like -
Helpful -
Hug
2 Reactions@dax1million, I believe there is always hope. Hope may have to be redefined or reframed upon acceptance of the realities we face as they evolve.
I like this writing in an article written by a former colleague Glen Horst called Hope and Denial https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Emotional+Health/Hope+and+Denial.aspx
Excerpt
"... hope is linked to the future and to the plans and wishes you have for the future. A serious illness puts question marks over how much future you will have and what it will be. It threatens your control over your future. ... If it becomes clear that there is no cure, your hope may shift to living the rest of your life as well as possible. There is the hope to love and be loved, to feel good about the life you have lived, and to live in the present moment with satisfaction and a measure of peace."
What does hope look like for you and your husband? What helps to reframe hope?
Colleen, thank you for the nice message and the insert of thoughts that we are facing in this roller coaster ride.
The hardest thing for my husband is he was always a very active person, keeping a perfect yard, repairing anything that needed fixing around the house, or our vehicles. It makes him sad looking around knowing he want be able to do those things. We both pray with Gods wonderful grace and healing of mind and spirit some things can be replaced with other joy and accomplishments in this dark part of life and the sun will shine again. We have loving families to love and friends to cherish and God to guide us.