So I turn 70 next year. Transplant has never been mentioned, I hope there is some other help in the future. I'm on Jakafi and Drugs are expensive and not helping much with my anemia. My hemoglobin is 8.9 and platelets are low. I'm maintaining and try not to worry. BTW myelofibrosis and hypothyroidism are separate incidents.
Hi,
I hope this discussion restarts! After having high platelets on a routine physical with lab work done in December 2024, I was given diagnosis of ET in January 2025. After I found out from NGS testing from my O/H that I have CALR1 mutation, I read that could be ET or myelofibrosis, so I asked her for a bone marrow biopsy. She ordered one which was done in February 2025. She changed my diagnosis to primary myelofibrosis after talking with the pathologist on the phone who told her it looked more like that. My risk analysis for myelofibrosis is low risk and very low risk on the two tests they ran. My CT pelvic scan in June 2025 showed normal spleen size and no blood clots. I am 65 and take low dose daily aspirin. I have no symptoms and underlying health issues except a very enlarged right ring finger joint that is painless but makes it difficult to write. My O/H also referred me to bone marrow transplant specialist and I have appt early August 2025. I will go as my O/H said bone marrow transplant must be done by age 70 although she said it is not time for one now.
Just switched to Jakafi this past week. So far no improvement but I will give it some time to see if it reduces my spleen and the associated pain. Overall, hanging in there.
I can relate to blindsided, I was diagnose with Primary myleofibrousis (anemic) in July 2023. I put on Jakafi in September of 2023. 10mg twice daily. I decided not to let this define me and trying to keep my life in order. My question or maybe just a statement--it seems like the oncologist only looks at my blood counts and asked about symptoms only related to Jakafi and myleofibrousis. I also have hypothyroidism, but only my GP looks at that. It seems like no one is looking a whole person approach. Just wonder it there is any relationships to the two diseases.
I agree that the whole person approach is better. I finally have a decent primary doctor who listens. I just saw the O/H and she feels I do have Myelofibrosis rather than ET. That is probably because I asked for a bone marrow biopsy. The good news is I am very low rush on one scales and low risk on the second one. So just aspirin for me right now and still no symptoms for which I thank God!
I can relate to blindsided, I was diagnose with Primary myleofibrousis (anemic) in July 2023. I put on Jakafi in September of 2023. 10mg twice daily. I decided not to let this define me and trying to keep my life in order. My question or maybe just a statement--it seems like the oncologist only looks at my blood counts and asked about symptoms only related to Jakafi and myleofibrousis. I also have hypothyroidism, but only my GP looks at that. It seems like no one is looking a whole person approach. Just wonder it there is any relationships to the two diseases.
Hi Elizabeth! That’s really great news about your husband’s response to the Vidaza. It has a good track record. I know it can feel alarming to see those numbers going down but it is all part of a normal chemo cycle. The anti-fungal and anti-bacterial meds will act as a temporary immune system for him! So hang in there and give your husband an ‘air hug’ from me…yes, I’m a hugger. 😅
Next question is, how are YOU doing?
Hanging in there and taking care of him. I have always been a people person that always has something going on but he is my biggest concern now. He encourages me to get out but I’m afraid he might need me. Especially when he is so weak. I’ll make it tho.
Thanks for all your kind words and most of all for experience and information.
Elizabeth
You’re so right it is Vidaza. He had his follow up with his wonderful doctor at Levine cancer center Charlotte. The doctor seemed please with his chemotherapy, he said it is doing exactly as he thought it would for the first round of treatment. He prescribed some medicines as precautions such as an antibiotic and anti fungal. He told us in the beginning the chemo would bring his numbers down and start to go back up. We left with hope that that he is responding and God answers prayers. Thank you Lori, so kind of you to inquire about him. His next appt with the doctor is May 6, I will let you know how it goes. Sincerely Elizabeth
Hi Elizabeth! That’s really great news about your husband’s response to the Vidaza. It has a good track record. I know it can feel alarming to see those numbers going down but it is all part of a normal chemo cycle. The anti-fungal and anti-bacterial meds will act as a temporary immune system for him! So hang in there and give your husband an ‘air hug’ from me…yes, I’m a hugger. 😅
Next question is, how are YOU doing?
Hi @dax1million I just wanted to check in with you to see how your husband is doing after this first chemo cycle. I’ve not heard of Vicaba. Could it be Vidaza?
You’re so right it is Vidaza. He had his follow up with his wonderful doctor at Levine cancer center Charlotte. The doctor seemed please with his chemotherapy, he said it is doing exactly as he thought it would for the first round of treatment. He prescribed some medicines as precautions such as an antibiotic and anti fungal. He told us in the beginning the chemo would bring his numbers down and start to go back up. We left with hope that that he is responding and God answers prayers. Thank you Lori, so kind of you to inquire about him. His next appt with the doctor is May 6, I will let you know how it goes. Sincerely Elizabeth
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So I turn 70 next year. Transplant has never been mentioned, I hope there is some other help in the future. I'm on Jakafi and Drugs are expensive and not helping much with my anemia. My hemoglobin is 8.9 and platelets are low. I'm maintaining and try not to worry. BTW myelofibrosis and hypothyroidism are separate incidents.
Hi,
I hope this discussion restarts! After having high platelets on a routine physical with lab work done in December 2024, I was given diagnosis of ET in January 2025. After I found out from NGS testing from my O/H that I have CALR1 mutation, I read that could be ET or myelofibrosis, so I asked her for a bone marrow biopsy. She ordered one which was done in February 2025. She changed my diagnosis to primary myelofibrosis after talking with the pathologist on the phone who told her it looked more like that. My risk analysis for myelofibrosis is low risk and very low risk on the two tests they ran. My CT pelvic scan in June 2025 showed normal spleen size and no blood clots. I am 65 and take low dose daily aspirin. I have no symptoms and underlying health issues except a very enlarged right ring finger joint that is painless but makes it difficult to write. My O/H also referred me to bone marrow transplant specialist and I have appt early August 2025. I will go as my O/H said bone marrow transplant must be done by age 70 although she said it is not time for one now.
Has interest in this discussion died?
Just switched to Jakafi this past week. So far no improvement but I will give it some time to see if it reduces my spleen and the associated pain. Overall, hanging in there.
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Helpful -
Hug
1 ReactionHi,
I agree that the whole person approach is better. I finally have a decent primary doctor who listens. I just saw the O/H and she feels I do have Myelofibrosis rather than ET. That is probably because I asked for a bone marrow biopsy. The good news is I am very low rush on one scales and low risk on the second one. So just aspirin for me right now and still no symptoms for which I thank God!
I can relate to blindsided, I was diagnose with Primary myleofibrousis (anemic) in July 2023. I put on Jakafi in September of 2023. 10mg twice daily. I decided not to let this define me and trying to keep my life in order. My question or maybe just a statement--it seems like the oncologist only looks at my blood counts and asked about symptoms only related to Jakafi and myleofibrousis. I also have hypothyroidism, but only my GP looks at that. It seems like no one is looking a whole person approach. Just wonder it there is any relationships to the two diseases.
-
Like -
Helpful -
Hug
2 ReactionsHanging in there and taking care of him. I have always been a people person that always has something going on but he is my biggest concern now. He encourages me to get out but I’m afraid he might need me. Especially when he is so weak. I’ll make it tho.
Thanks for all your kind words and most of all for experience and information.
Elizabeth
-
Like -
Helpful -
Hug
1 ReactionHi Elizabeth! That’s really great news about your husband’s response to the Vidaza. It has a good track record. I know it can feel alarming to see those numbers going down but it is all part of a normal chemo cycle. The anti-fungal and anti-bacterial meds will act as a temporary immune system for him! So hang in there and give your husband an ‘air hug’ from me…yes, I’m a hugger. 😅
Next question is, how are YOU doing?
You’re so right it is Vidaza. He had his follow up with his wonderful doctor at Levine cancer center Charlotte. The doctor seemed please with his chemotherapy, he said it is doing exactly as he thought it would for the first round of treatment. He prescribed some medicines as precautions such as an antibiotic and anti fungal. He told us in the beginning the chemo would bring his numbers down and start to go back up. We left with hope that that he is responding and God answers prayers. Thank you Lori, so kind of you to inquire about him. His next appt with the doctor is May 6, I will let you know how it goes. Sincerely Elizabeth
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Helpful -
Hug
2 Reactions@dl69, a diagnosis does blindside you, doesn't it? How are doing on Jakafi?