Thanks for mentioning Procrit. That's where I am at, and my HGB is not moving. We are talking about changing, but to what. I am not entertaining the stem cell solution. The information about the new drug is appreciated.
Since you have been through this for so long, what are your side effects. Do you have to be treated for anything else? Before the bone marrow problem I had Sjogren's so stopped methotrexate when I realized that it was the bone marrow culprit. Believing for miracles, however.
I didn't change from the Procrit until my HGB started dropping. As for other treatments, I have MDS, which is certainly related to the MF, and my Kidney function is low. I believe these are somewhat common is situations like mine. The side effects have become a necessary part of life for me. For the most part I have learned to deal with them. Most of the Chemo drugs have kept me with a constant case of Diareha. There are various drugs that can help you deal with that. The Dacogen infustions were for 5 days straight, every 28 days. There is no doubt that it made me feel poorly, and it certainly lowered my White blood cell count to the point that I had to be exreamely careful about being around anyone that was sick. Infections of one kind or another was a major concern. The treatment also lowered my Platelets and HGB. So why did I take the infusions.... because they also killed cancer cells in the Bone Marrow. At the end of the week's treatment I vertually always needed Blood transfusion to bring my HGB back up. The boost from the new blood would hold me until i could produce some of my own new "Good" cells. After about a year, the Dacogen infusions had reached a point that they didn't seem to be giving me any improvement. When I recently put the Dacogen on hold, my White cells showed imporovement, and my HGB seems to be holding above 8. One of the major reasons for taking Dacogen was to become less dependent upon blood transfusions to survive. At this point it looks like it might have accomplished that, even thought the counts are still very low, they seem to have stabilized, at least for the time being. It's too early to really tell. The Vonjo has the usual Chemo sides effects, but using it gave almost immediate results. I had already been mapped for Radiation to shrink my Spleen when I started the Vonjo. Within weeks it shrunk my spleen negating the need to have it radiated or removed. No doubt that having the spleen is a good thing. I don't know if you are aware, but it helps pick up the slack of blood poduction when the Bone Marrow falls short. IMO, THAT is the main reason that I have survived MF as long as I have. As for the stem cell solution, I was certainly up to give it a try but all of my Doctors gave me the same feedback.... the said that I was too old, and was very likely to not survive the preparation for stem cell treatiment.... they have to Radiate you heavily to kill all the current bone marrow then give you the stem cells and start all over again. As for miracles.... heck, every day is a miracle and i am thankful for most of them. If possible, stay as cheerful as possible, make yourself look as good as possible and continue with your life as best you can. One thing that I know for sure is that contact with other people is good medicine. It helps you keep up a good attitude. If you look bad, constantly whine and carry on around others they would prefer to just stay away. So don't run folks off. If they ask how you are doing, give them a short honest answer that isn't too negative then move on and ask them how their garden is coming along.
I didn't change from the Procrit until my HGB started dropping. As for other treatments, I have MDS, which is certainly related to the MF, and my Kidney function is low. I believe these are somewhat common is situations like mine. The side effects have become a necessary part of life for me. For the most part I have learned to deal with them. Most of the Chemo drugs have kept me with a constant case of Diareha. There are various drugs that can help you deal with that. The Dacogen infustions were for 5 days straight, every 28 days. There is no doubt that it made me feel poorly, and it certainly lowered my White blood cell count to the point that I had to be exreamely careful about being around anyone that was sick. Infections of one kind or another was a major concern. The treatment also lowered my Platelets and HGB. So why did I take the infusions.... because they also killed cancer cells in the Bone Marrow. At the end of the week's treatment I vertually always needed Blood transfusion to bring my HGB back up. The boost from the new blood would hold me until i could produce some of my own new "Good" cells. After about a year, the Dacogen infusions had reached a point that they didn't seem to be giving me any improvement. When I recently put the Dacogen on hold, my White cells showed imporovement, and my HGB seems to be holding above 8. One of the major reasons for taking Dacogen was to become less dependent upon blood transfusions to survive. At this point it looks like it might have accomplished that, even thought the counts are still very low, they seem to have stabilized, at least for the time being. It's too early to really tell. The Vonjo has the usual Chemo sides effects, but using it gave almost immediate results. I had already been mapped for Radiation to shrink my Spleen when I started the Vonjo. Within weeks it shrunk my spleen negating the need to have it radiated or removed. No doubt that having the spleen is a good thing. I don't know if you are aware, but it helps pick up the slack of blood poduction when the Bone Marrow falls short. IMO, THAT is the main reason that I have survived MF as long as I have. As for the stem cell solution, I was certainly up to give it a try but all of my Doctors gave me the same feedback.... the said that I was too old, and was very likely to not survive the preparation for stem cell treatiment.... they have to Radiate you heavily to kill all the current bone marrow then give you the stem cells and start all over again. As for miracles.... heck, every day is a miracle and i am thankful for most of them. If possible, stay as cheerful as possible, make yourself look as good as possible and continue with your life as best you can. One thing that I know for sure is that contact with other people is good medicine. It helps you keep up a good attitude. If you look bad, constantly whine and carry on around others they would prefer to just stay away. So don't run folks off. If they ask how you are doing, give them a short honest answer that isn't too negative then move on and ask them how their garden is coming along.
Thanks for taking the time to reply. You know, I just noted that within a few hours two different person told me, you look good and was just going from one doctor to the other. Yes, we thrive on miracles, even the ones we are not aware of.
Appreciate note about the Spleen. I see why my hematologist keeps checking and saying...your spleen is OK. Best
I agree that there are many unknowns about MF, even despite all the advances in research lately regarding MPN's, the prevailing knowledge varies greatly. I saw an orthopedic Dr last week for an ankle sprain, and he had to look up myleofibrosis... he had no clue. And yes, it is interesting to get to look at different experiences and points of view. They say that each MF patient is different. For sure !
I had ET for 17 years had become resistant to hydroxyurea, was on interferon injections for the past 7 1/2 years, and upon being diagnosed that my ET has transitioned to MF am told that I am already at an advanced stage with a prognosis of maybe 8-12 months left - unless this disease transitions further to AML which is very likely, and means a certain shortened end. So why would one commenter question so ardently that one patient has a five year prognosis and suggest a second opinion just because their mother had MF for 30 years ? We are all different and here under different circumstances. I have been waiting for my "urgent" stem cell transplant to be scheduled for over 4 months and the clock is ticking, louder and louder. Finally have a third "approved" consultation at Mayo for Dec 01, 2023. All this delay because insurance bureaucrats know better than Drs. So we keep tackling issues in front of us, do what we can to feel as good as we can to face the next day. As another commenter said, only God knows. Bless you all and may you have favor with all you have to endure.
I agree that there are many unknowns about MF, even despite all the advances in research lately regarding MPN's, the prevailing knowledge varies greatly. I saw an orthopedic Dr last week for an ankle sprain, and he had to look up myleofibrosis... he had no clue. And yes, it is interesting to get to look at different experiences and points of view. They say that each MF patient is different. For sure !
I had ET for 17 years had become resistant to hydroxyurea, was on interferon injections for the past 7 1/2 years, and upon being diagnosed that my ET has transitioned to MF am told that I am already at an advanced stage with a prognosis of maybe 8-12 months left - unless this disease transitions further to AML which is very likely, and means a certain shortened end. So why would one commenter question so ardently that one patient has a five year prognosis and suggest a second opinion just because their mother had MF for 30 years ? We are all different and here under different circumstances. I have been waiting for my "urgent" stem cell transplant to be scheduled for over 4 months and the clock is ticking, louder and louder. Finally have a third "approved" consultation at Mayo for Dec 01, 2023. All this delay because insurance bureaucrats know better than Drs. So we keep tackling issues in front of us, do what we can to feel as good as we can to face the next day. As another commenter said, only God knows. Bless you all and may you have favor with all you have to endure.
You are correct, everyone is different. 16 year ago a routine physical showed that my platelets were sky high. I was diagnosed with ET. and they started me on treatment with Anagrelide. That brought the platelets down, but it also brought everything else down too. So, I was switched to Hydroxyurea. The decline slowed but things didn't come back. A Bone marrow biopsy showed MF and MDS. Things kept dropping and Procrit was added. That helped, and I stayed with that for a while. It finally stopped working and I was switched to Aranesp. That did a pretty good job so I stayed with it. After a good while things were again dropping and Reblozyl was added. Once again things picked up. My goal was to maintain hb at 10 or above. That was a touch and go thing. I spent a good while between 9-10. But, once again things started dropping, biopsy showed a decline, and I was not able to keep hb above 8. I started getting blood transfusions. At first one unit would keep me above 8 for a few weeks but as time went on it was necessary to get them every couple weeks to stay above 8. My spleen was greatly enlarged and they were getting me ready for radiation to shrink it. A couple weeks before the radiation, the oncologist decided to try Vonjo. Within a very short time my pain from the spleen stopped and it started shrinking. It became easier to maintain a hb of 8+. Again, after some time blood transfusions became more frequent and I started infusions of Dacogen. They told me it would take me downhill and they were correct. It made me feel really bad and it drove my numbers down even lower. I got to the point that I needed blood every 1-2 weeks. I was on Dacogen for a year! It finally reached the point where my numbers were so low that they had to take me off of it. WBC was down to about nothing, my hb hit a low of 6.1 and I was basically on my way out. BUT, very soon after stopping the Dacogen my numbers started moving up! My CBC showed improvement week after week. It's now been about 6 months since I had a blood transfusion, and my numbers continue to rise. I no longer qualify for either Aranesp or Reblozyl. I still take Vonjo. My hb is in the 13 range and still moving up! My wbc, rbc and platelets are just about normal and I feel better and have more energy than I can remember. I don't know how long all of this will last but I'm enjoying it to the max. I was out of options when they stopped treatment, and I credit God for help. If it returns there is now a new drug available for me to try. I'll hope and pray it is not needed, but it's nice to know that there is more untried treatment available. I am 76 years old. If things stay like they are now I'll die of Old Age before it gets me. I say: Keep the Faith and never give up!
I was diagnosed with MF proximately two years ago. My platelets were extremely high but we’ve been able to get them down to around 500 by taking 1000 mg of Hydrea twice a day. I’ve been having extreme pain in hands, joints and feet. Daytime fatigue and tiredness I have been extremely unbearable. I feel like mentally I am losing or starting to lose the battle. Need a good person to just discuss problems with. Thank you.
I was diagnosed with MF proximately two years ago. My platelets were extremely high but we’ve been able to get them down to around 500 by taking 1000 mg of Hydrea twice a day. I’ve been having extreme pain in hands, joints and feet. Daytime fatigue and tiredness I have been extremely unbearable. I feel like mentally I am losing or starting to lose the battle. Need a good person to just discuss problems with. Thank you.
I was diagnosed with MF proximately two years ago. My platelets were extremely high but we’ve been able to get them down to around 500 by taking 1000 mg of Hydrea twice a day. I’ve been having extreme pain in hands, joints and feet. Daytime fatigue and tiredness I have been extremely unbearable. I feel like mentally I am losing or starting to lose the battle. Need a good person to just discuss problems with. Thank you.
Hi @jeffrad1, I hope you saw @eileen11108's kind reply to you. I'm sorry to hear that you feel like you're losing the battle and struggling mentally. We're here to support you. How are you doing today?
Hi, Steve, I was diagnosed with MF in late 2010, though I must have had it a while before then. I have taken no medication at all, but I make my own Liposomal vitamin C (see online & videos). I also take a good multivitamin, medicinal mushroom capsules, vitamin D3, Magnesium and several other supplements. My consultant recently told me in front of a student that I am unusually stable and to carry on with whatever I am doing! If you want more details I can give you pointers. For some years I communicated with others on 'CancerCompass'. Several were following a similar (though personally varied) protocol and everyone was showing improvements! On this protocol, my PSA went recently from 15.5 to 7.6! The nurse asked me what was I doing to make this happen so I told her the supplements!
I personally believe not in 'zapping' the problem but in building health so that your body does it for you. Finding a good nutritionist could help to pinpoint weaknesses!
Best wishes,
Roger
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I didn't change from the Procrit until my HGB started dropping. As for other treatments, I have MDS, which is certainly related to the MF, and my Kidney function is low. I believe these are somewhat common is situations like mine. The side effects have become a necessary part of life for me. For the most part I have learned to deal with them. Most of the Chemo drugs have kept me with a constant case of Diareha. There are various drugs that can help you deal with that. The Dacogen infustions were for 5 days straight, every 28 days. There is no doubt that it made me feel poorly, and it certainly lowered my White blood cell count to the point that I had to be exreamely careful about being around anyone that was sick. Infections of one kind or another was a major concern. The treatment also lowered my Platelets and HGB. So why did I take the infusions.... because they also killed cancer cells in the Bone Marrow. At the end of the week's treatment I vertually always needed Blood transfusion to bring my HGB back up. The boost from the new blood would hold me until i could produce some of my own new "Good" cells. After about a year, the Dacogen infusions had reached a point that they didn't seem to be giving me any improvement. When I recently put the Dacogen on hold, my White cells showed imporovement, and my HGB seems to be holding above 8. One of the major reasons for taking Dacogen was to become less dependent upon blood transfusions to survive. At this point it looks like it might have accomplished that, even thought the counts are still very low, they seem to have stabilized, at least for the time being. It's too early to really tell. The Vonjo has the usual Chemo sides effects, but using it gave almost immediate results. I had already been mapped for Radiation to shrink my Spleen when I started the Vonjo. Within weeks it shrunk my spleen negating the need to have it radiated or removed. No doubt that having the spleen is a good thing. I don't know if you are aware, but it helps pick up the slack of blood poduction when the Bone Marrow falls short. IMO, THAT is the main reason that I have survived MF as long as I have. As for the stem cell solution, I was certainly up to give it a try but all of my Doctors gave me the same feedback.... the said that I was too old, and was very likely to not survive the preparation for stem cell treatiment.... they have to Radiate you heavily to kill all the current bone marrow then give you the stem cells and start all over again. As for miracles.... heck, every day is a miracle and i am thankful for most of them. If possible, stay as cheerful as possible, make yourself look as good as possible and continue with your life as best you can. One thing that I know for sure is that contact with other people is good medicine. It helps you keep up a good attitude. If you look bad, constantly whine and carry on around others they would prefer to just stay away. So don't run folks off. If they ask how you are doing, give them a short honest answer that isn't too negative then move on and ask them how their garden is coming along.
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1 ReactionThanks for taking the time to reply. You know, I just noted that within a few hours two different person told me, you look good and was just going from one doctor to the other. Yes, we thrive on miracles, even the ones we are not aware of.
Appreciate note about the Spleen. I see why my hematologist keeps checking and saying...your spleen is OK. Best
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Like -
Helpful -
Hug
1 ReactionI agree that there are many unknowns about MF, even despite all the advances in research lately regarding MPN's, the prevailing knowledge varies greatly. I saw an orthopedic Dr last week for an ankle sprain, and he had to look up myleofibrosis... he had no clue. And yes, it is interesting to get to look at different experiences and points of view. They say that each MF patient is different. For sure !
I had ET for 17 years had become resistant to hydroxyurea, was on interferon injections for the past 7 1/2 years, and upon being diagnosed that my ET has transitioned to MF am told that I am already at an advanced stage with a prognosis of maybe 8-12 months left - unless this disease transitions further to AML which is very likely, and means a certain shortened end. So why would one commenter question so ardently that one patient has a five year prognosis and suggest a second opinion just because their mother had MF for 30 years ? We are all different and here under different circumstances. I have been waiting for my "urgent" stem cell transplant to be scheduled for over 4 months and the clock is ticking, louder and louder. Finally have a third "approved" consultation at Mayo for Dec 01, 2023. All this delay because insurance bureaucrats know better than Drs. So we keep tackling issues in front of us, do what we can to feel as good as we can to face the next day. As another commenter said, only God knows. Bless you all and may you have favor with all you have to endure.
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Helpful -
Hug
3 ReactionsYou are correct, everyone is different. 16 year ago a routine physical showed that my platelets were sky high. I was diagnosed with ET. and they started me on treatment with Anagrelide. That brought the platelets down, but it also brought everything else down too. So, I was switched to Hydroxyurea. The decline slowed but things didn't come back. A Bone marrow biopsy showed MF and MDS. Things kept dropping and Procrit was added. That helped, and I stayed with that for a while. It finally stopped working and I was switched to Aranesp. That did a pretty good job so I stayed with it. After a good while things were again dropping and Reblozyl was added. Once again things picked up. My goal was to maintain hb at 10 or above. That was a touch and go thing. I spent a good while between 9-10. But, once again things started dropping, biopsy showed a decline, and I was not able to keep hb above 8. I started getting blood transfusions. At first one unit would keep me above 8 for a few weeks but as time went on it was necessary to get them every couple weeks to stay above 8. My spleen was greatly enlarged and they were getting me ready for radiation to shrink it. A couple weeks before the radiation, the oncologist decided to try Vonjo. Within a very short time my pain from the spleen stopped and it started shrinking. It became easier to maintain a hb of 8+. Again, after some time blood transfusions became more frequent and I started infusions of Dacogen. They told me it would take me downhill and they were correct. It made me feel really bad and it drove my numbers down even lower. I got to the point that I needed blood every 1-2 weeks. I was on Dacogen for a year! It finally reached the point where my numbers were so low that they had to take me off of it. WBC was down to about nothing, my hb hit a low of 6.1 and I was basically on my way out. BUT, very soon after stopping the Dacogen my numbers started moving up! My CBC showed improvement week after week. It's now been about 6 months since I had a blood transfusion, and my numbers continue to rise. I no longer qualify for either Aranesp or Reblozyl. I still take Vonjo. My hb is in the 13 range and still moving up! My wbc, rbc and platelets are just about normal and I feel better and have more energy than I can remember. I don't know how long all of this will last but I'm enjoying it to the max. I was out of options when they stopped treatment, and I credit God for help. If it returns there is now a new drug available for me to try. I'll hope and pray it is not needed, but it's nice to know that there is more untried treatment available. I am 76 years old. If things stay like they are now I'll die of Old Age before it gets me. I say: Keep the Faith and never give up!
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8 ReactionsI was diagnosed with MF proximately two years ago. My platelets were extremely high but we’ve been able to get them down to around 500 by taking 1000 mg of Hydrea twice a day. I’ve been having extreme pain in hands, joints and feet. Daytime fatigue and tiredness I have been extremely unbearable. I feel like mentally I am losing or starting to lose the battle. Need a good person to just discuss problems with. Thank you.
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4 ReactionsJeff,
Your dose of Hydroxyurea is very high. It can cause many side effects. Have you seen an MPN specialist yet? Has your doctor mentioned Pegasys?
Best wishes, Eileen
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1 ReactionHi @jeffrad1, I hope you saw @eileen11108's kind reply to you. I'm sorry to hear that you feel like you're losing the battle and struggling mentally. We're here to support you. How are you doing today?
hello steve i also have mf which cause my spleen to b enlarge can you please share your daily regiments...
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1 ReactionWelcome, @bundy144. I'm tagging @stimme to make sure he (Roger) sees your request.
Bundy, have you considered getting a referral to an oncology dietitian to help develop a food and supplement regimen that is right for you?
yes
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