jseeker.
Have you message The Moffitt center or her current dr for help with this symptom? I know someone else will reply, but i also wanted to ask if your wife had been offered a transplant on the original MDS diagnosis? Treatments have changed a bunch in 10 years.
myelofibrosis- So much info was posted by Lori and others in the upper comments. I also want to add, what is normal? Some have few symptoms, and others a host of different one.
JAK2 Myelofibrosis
I have been on Ojjarra for almost three months. It is a half dose (100mg) per day. Next month I will go on a full 200mg dose and will report back.
I have not experienced any adverse effects to date. My spleen pain has gone away. My white count is now upper normal. Still waiting for my platelets to stabilize. They range from 600,000 to 900,000. Maybe the full dose will help with that.
Other than that I feel like nothings wrong. I’m still shocked that I have this disorder.
I feel confident in the hands of the Mayo Clinic expert in Primary Myelofibrosis, Dr. Teffari.
Thank you for responding so quickly. My doctor has prescribed 200 mg, because that’s the recommended dosage, but I’ve heard that upset stomach is common. Nice to hear that 100 mg is helping without side effects.
Hi @sharonm2023. Welcome to Connect. I promise you won’t be alone here! There are quite a few members who have multiple fibrosis or one of the other blood conditions associated with the CALR mutation such as polycythemia vera or essential thrombocythemia.
You may have already read the links to articles I provided for @rhollis in this comment… https://connect.mayoclinic.org/comment/1201587/
If not, take a few minutes to read through.
There are medications available to slow the progress of the fibrosis to the bone marrow, but ultimately, a bone marrow transplant remains the only cure for this condition. A good friend of mine, whom I met while we were both having our bone marrow transplants in 2019, had MF. She is now 5.5 years post transplant like me, and is doing well. Perfectly healthy and no signs of the MF returning.
I know you’re concerned about your hemoglobin levels after you’re out of the clinical trial. That can be a side effect of the disease itself. With a clinical trial you don’t know if you’re on a drug or a placebo. So your blood numbers may not change after you’re out of the trial if you’re on the placebo. Right now, active surveillance would be appropriate until you know. If your numbers start changing in the future and your current hematologist is reluctant to explore any other treatment options, it may be in your best interest to seek 2nd opinion with a larger teaching/research hospital such as Mayo Clinic, Cleveland Clinic for examples…
In the meantime Jakafi is one of the standard medications for MF and has a good track record. Are you having any side effects from the medication?
Thank you for the comments--I will check out the article. The clinical study I'm on is not a blind study--So I am definitely on the drug. The study is being conducted through Mayo. I am hoping once the study is done I can transfer my care to Mayo, in the meantime I am being seen at CentraCare in St. Cloud. This is where my Jakafi is prescribed and as you know it is expensive the kind pharmacist has found a grant to help with costs. This was not so at Mayo--the pharmacist there was not helpful--probably too much going on.
Sorry I'm rambling, to answer you question about Jakafi--yes I have side effects, diarrhea, leg muscle spasms. night sweats and low grade headaches.
The good news is my hemoglobin was at a 10--this last check.
Welcome to Connect, @tamijulien. At this time, a stem cell transplant remains the only possibility for a cure with certain blood cancers like Myelofibrosis. I had a transplant for AML five years ago. I feel amazingly fit and healthy…best yet, being cancer free for 5 years!
It is a long, challenging process but quite a few of us in the forum have had a bone marrow/stem cell transplant and we’re all here to help you through your journey when ready.
Is there any specific information I can help you with?
I am Phase I (no fibrosis yet), and my Dr has recommended Interferon. There is some evidence that it prevents disease progression in some patients. I have not yet started treatment (I was just diagnosed 12/16) but am likely going to try this course of treatment. Pegasus is approved for use in MF patients, Besremi is in clinical trials.
Thank you for the comments--I will check out the article. The clinical study I'm on is not a blind study--So I am definitely on the drug. The study is being conducted through Mayo. I am hoping once the study is done I can transfer my care to Mayo, in the meantime I am being seen at CentraCare in St. Cloud. This is where my Jakafi is prescribed and as you know it is expensive the kind pharmacist has found a grant to help with costs. This was not so at Mayo--the pharmacist there was not helpful--probably too much going on.
Sorry I'm rambling, to answer you question about Jakafi--yes I have side effects, diarrhea, leg muscle spasms. night sweats and low grade headaches.
The good news is my hemoglobin was at a 10--this last check.
Your comment on the pharmacist caught my attention.
The pharmacy at CARTI in Little Rock was top notch, and had me signed up for the copay plan (with my permission of course) before I even picked up my first script.
I am Phase I (no fibrosis yet), and my Dr has recommended Interferon. There is some evidence that it prevents disease progression in some patients. I have not yet started treatment (I was just diagnosed 12/16) but am likely going to try this course of treatment. Pegasus is approved for use in MF patients, Besremi is in clinical trials.
Good morning, @rhollis. This is all so new for you yet, I’m sure it seems surreal. But the good news there are treatment options to help slow progression of the MF and hopefully relieve some of the symptoms you’ve been having. How soon will you start the Pegasus?
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jseeker.
Have you message The Moffitt center or her current dr for help with this symptom? I know someone else will reply, but i also wanted to ask if your wife had been offered a transplant on the original MDS diagnosis? Treatments have changed a bunch in 10 years.
myelofibrosis- So much info was posted by Lori and others in the upper comments. I also want to add, what is normal? Some have few symptoms, and others a host of different one.
Thank you for responding so quickly. My doctor has prescribed 200 mg, because that’s the recommended dosage, but I’ve heard that upset stomach is common. Nice to hear that 100 mg is helping without side effects.
Thank you for the comments--I will check out the article. The clinical study I'm on is not a blind study--So I am definitely on the drug. The study is being conducted through Mayo. I am hoping once the study is done I can transfer my care to Mayo, in the meantime I am being seen at CentraCare in St. Cloud. This is where my Jakafi is prescribed and as you know it is expensive the kind pharmacist has found a grant to help with costs. This was not so at Mayo--the pharmacist there was not helpful--probably too much going on.
Sorry I'm rambling, to answer you question about Jakafi--yes I have side effects, diarrhea, leg muscle spasms. night sweats and low grade headaches.
The good news is my hemoglobin was at a 10--this last check.
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2 ReactionsI am Phase I (no fibrosis yet), and my Dr has recommended Interferon. There is some evidence that it prevents disease progression in some patients. I have not yet started treatment (I was just diagnosed 12/16) but am likely going to try this course of treatment. Pegasus is approved for use in MF patients, Besremi is in clinical trials.
Your comment on the pharmacist caught my attention.
The pharmacy at CARTI in Little Rock was top notch, and had me signed up for the copay plan (with my permission of course) before I even picked up my first script.
Good morning, @rhollis. This is all so new for you yet, I’m sure it seems surreal. But the good news there are treatment options to help slow progression of the MF and hopefully relieve some of the symptoms you’ve been having. How soon will you start the Pegasus?