2nd visit - this time with the specialist in BMT. He was a wonderful resource of information. He reviewed my health information and was thoughtful about next steps. Because of my current health he is recommending monitoring until I have another mutation and or am experiencing more symptoms. He thinks 3 years most likely. He recommends continuing my current health regime and staying on my Mediterranean type diet. This means 68ish for the BMT. Mayo is getting my blood typing to see if there is a pool of potential donors. I will do a phone visit in 2 months for the next check up.
2nd visit - this time with the specialist in BMT. He was a wonderful resource of information. He reviewed my health information and was thoughtful about next steps. Because of my current health he is recommending monitoring until I have another mutation and or am experiencing more symptoms. He thinks 3 years most likely. He recommends continuing my current health regime and staying on my Mediterranean type diet. This means 68ish for the BMT. Mayo is getting my blood typing to see if there is a pool of potential donors. I will do a phone visit in 2 months for the next check up.
Thanks for your update. Good to hear you had a positive appointment with BMT specialist and that he was a wonderful resource of information. It is so important to have a very good match for a bone marrow transplant for best success I gave read so good to start early and not be rushed. It sounds like you are not on meds at this time and just doing healthy Mediterranean Diet. I bet you are less frustrated now which is so positive.
I'm just starting on Jakafi and am anxious about the side effects and the necessity of taking Acyclovir with it (Herpes med).
Have phlebotomies helped or is that procedure stopped?
Had done them along with Hydroxyurea for PV for previous 3 months before bone density/aspiration showed early detection of Myelofibrosis. TET2 + ASXl1 determined.
Just a update on my post of Jul 10,2024. It is now1/31/2025. I am still taking the Ojjaara. I take nothing else. I've had a CBC every week, and they are all great! Who knows how long this will last, but for now things are great!
Great! Ive just been diagnosed ? 72 yo. I'm planning on mirroring your approach and keeping going for a lot longer than some believe possible--though dont know yet if I will have access to the same medicines (in South Africa).
Great! Ive just been diagnosed ? 72 yo. I'm planning on mirroring your approach and keeping going for a lot longer than some believe possible--though dont know yet if I will have access to the same medicines (in South Africa).
I don't know what is available there. However, IMO it is very important to not give up hope. I've been on the last road a couple of times and managed to delay my arrival. I think you can do the same thing. For me, faith was very important. Bless you and may your journey be fruitful.
Hello! My Clinical Trial MD reached out today- she said I won’t get on the trial for a year. With my hemoglobin at 8 she is prescribing aranesp 500 mcg subcutaneous every 3 weeks until my hemoglobin is at 11. I think the reason is that if I take momeloteniab then I won’t get in the clinical trial. I will be 66 in November and in good physical health. My spleen is at 14 so minimal enlargement. My goal is to have a SCT while I’m healthy. I retire in April and would like some time with family maybe travel before SCT. Thoughts or advice? Anyone ever take aranesp for low hemoglobin? Thank you!
So I am just waiting on a call from the Ottawa Hospital where I will be having this done...meanwhile I've been reading up on the disease to learn as much as possible.
Hang in there....
@tamijulien Can you summarize your experience? I am hoping that you have had a successful treatment and can share a summary of your experience and any suggestions for someone just starting Jakafi in preparation for stem cell transplant. All the best.
My husband has just been diagnosed with Secondary Myelofibrosis. Previously he had Polycaethaemia Vera for 4 years. His haemotologist has prescribed Ruxolitinib 10 mg and he has to have 2 weekly blood tests to see how the drug is working or if the size of the dose may need changing. Has any other sufferer been prescribed this drug and how are you coping with it and its side effects?
My husband has just been diagnosed with Secondary Myelofibrosis. Previously he had Polycaethaemia Vera for 4 years. His haemotologist has prescribed Ruxolitinib 10 mg and he has to have 2 weekly blood tests to see how the drug is working or if the size of the dose may need changing. Has any other sufferer been prescribed this drug and how are you coping with it and its side effects?
Hi @nisi Welcome to Mayo Connect. I’m so sorry to see that there’s been a change in your husband’s health. I know how concerning that can be so I’m very glad that you’ve joined in the conversation. I think you’ll find a lot of helpful members here.
It can be frightening starting a new medication so it can be helpful to see what others are experiencing. There are quite a few who have polycythemia vera (PV) and/or myelofibrosis (MF) who also take the medication Ruxolitinib, (Jakafi). It’s one of the frontline medications for this condition. In fact, another new member @jgjacksonmn1 shared a similar story with his wife having PV which is transitioning to MF and is now taking Jakafi. You might want to read their discussion. Here is the link:
This is new and overwhelming. Wife is diagnosed and we need support. https://connect.mayoclinic.org/discussion/this-is-new-and-overwhelming-wife-is-diagnosed-and-we-need-support/
Has your husband started taking his medication yet?
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Hi @davi0397,
I hope your EKG and doctor appointment went well.
Happy Weekend!
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1 Reaction2nd visit - this time with the specialist in BMT. He was a wonderful resource of information. He reviewed my health information and was thoughtful about next steps. Because of my current health he is recommending monitoring until I have another mutation and or am experiencing more symptoms. He thinks 3 years most likely. He recommends continuing my current health regime and staying on my Mediterranean type diet. This means 68ish for the BMT. Mayo is getting my blood typing to see if there is a pool of potential donors. I will do a phone visit in 2 months for the next check up.
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2 ReactionsHi @davi0937 ,
Thanks for your update. Good to hear you had a positive appointment with BMT specialist and that he was a wonderful resource of information. It is so important to have a very good match for a bone marrow transplant for best success I gave read so good to start early and not be rushed. It sounds like you are not on meds at this time and just doing healthy Mediterranean Diet. I bet you are less frustrated now which is so positive.
-
Like -
Helpful -
Hug
2 ReactionsI'm just starting on Jakafi and am anxious about the side effects and the necessity of taking Acyclovir with it (Herpes med).
Have phlebotomies helped or is that procedure stopped?
Had done them along with Hydroxyurea for PV for previous 3 months before bone density/aspiration showed early detection of Myelofibrosis. TET2 + ASXl1 determined.
-
Like -
Helpful -
Hug
1 ReactionGreat! Ive just been diagnosed ? 72 yo. I'm planning on mirroring your approach and keeping going for a lot longer than some believe possible--though dont know yet if I will have access to the same medicines (in South Africa).
I don't know what is available there. However, IMO it is very important to not give up hope. I've been on the last road a couple of times and managed to delay my arrival. I think you can do the same thing. For me, faith was very important. Bless you and may your journey be fruitful.
-
Like -
Helpful -
Hug
1 ReactionHello! My Clinical Trial MD reached out today- she said I won’t get on the trial for a year. With my hemoglobin at 8 she is prescribing aranesp 500 mcg subcutaneous every 3 weeks until my hemoglobin is at 11. I think the reason is that if I take momeloteniab then I won’t get in the clinical trial. I will be 66 in November and in good physical health. My spleen is at 14 so minimal enlargement. My goal is to have a SCT while I’m healthy. I retire in April and would like some time with family maybe travel before SCT. Thoughts or advice? Anyone ever take aranesp for low hemoglobin? Thank you!
@tamijulien Can you summarize your experience? I am hoping that you have had a successful treatment and can share a summary of your experience and any suggestions for someone just starting Jakafi in preparation for stem cell transplant. All the best.
-
Like -
Helpful -
Hug
2 ReactionsMy husband has just been diagnosed with Secondary Myelofibrosis. Previously he had Polycaethaemia Vera for 4 years. His haemotologist has prescribed Ruxolitinib 10 mg and he has to have 2 weekly blood tests to see how the drug is working or if the size of the dose may need changing. Has any other sufferer been prescribed this drug and how are you coping with it and its side effects?
-
Like -
Helpful -
Hug
1 ReactionHi @nisi Welcome to Mayo Connect. I’m so sorry to see that there’s been a change in your husband’s health. I know how concerning that can be so I’m very glad that you’ve joined in the conversation. I think you’ll find a lot of helpful members here.
It can be frightening starting a new medication so it can be helpful to see what others are experiencing. There are quite a few who have polycythemia vera (PV) and/or myelofibrosis (MF) who also take the medication Ruxolitinib, (Jakafi). It’s one of the frontline medications for this condition. In fact, another new member @jgjacksonmn1 shared a similar story with his wife having PV which is transitioning to MF and is now taking Jakafi. You might want to read their discussion. Here is the link:
This is new and overwhelming. Wife is diagnosed and we need support.
https://connect.mayoclinic.org/discussion/this-is-new-and-overwhelming-wife-is-diagnosed-and-we-need-support/
Has your husband started taking his medication yet?
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Like -
Helpful -
Hug
1 Reaction