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
Thank you.
I will be 69 years old next month and was diagnosed with PMF in January. My spleen is already 19 cm as is my liver as well. I have varying but constant abdominal pain/discomfort. My doctor prescribed hydroxyurea last month and it seems to be starting to help as my pain level is coming down.
I have sporadic fatigue. Some days it's hard to get anything done. My only other bother is diarrhea.
I also have Type 2 Diabetes which pretty much dictates what and when I eat.
I'm trying to maintain a positive attitude but it's a challenge some days. @dunewalker 's message was a helpful reminder to keep up a proper perspective.
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?
I was diagnosed with myelofibrosis a year ago, along with B-cell lymphoma. I’m taking Hydroxyurea with no side effects, feeling remarkably good, have labs done every two months. I’m 83, active and thankful for this platform with which to raise awareness and questions.
Try to continue your usual activities and enjoy life. This diagnosis does not define you; it’s just a bump in the road. Stay positive and thankful and you can handle whatever comes. Of all the kinds of cancers out there, myelofibrosis is not a bad one to have.
Since I really do not know what I actually have, a have not taken Hydrea ever. With my ET diagnosis seemingly changed to Myelofibrosis, I am concerned that Hydrea would lower red, white, as well as platelets too much trending toward leukemia. Great to hear yours are doing well.
Since the day my O/H changed my diagnosis from ET to Myelofibrosis, I have had two labs and my red cells and hemoglobin are normal but the lab earlier once only showed them low.
I still have no symptoms and feel fine, but do take baby aspirin as my platelets are high on all labs.
I totally agree with your advice to keep busy doing your normal activities and stay positive.
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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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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.
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Like -
Helpful -
Hug
1 ReactionHanging 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
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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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2 Reactions@dl69, a diagnosis does blindside you, doesn't it? How are doing on Jakafi?
Good morning, @chrisatwell. Thought it was time to check in with you! How are you doing today?
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?
Hi dunewalker,
Since I really do not know what I actually have, a have not taken Hydrea ever. With my ET diagnosis seemingly changed to Myelofibrosis, I am concerned that Hydrea would lower red, white, as well as platelets too much trending toward leukemia. Great to hear yours are doing well.
Since the day my O/H changed my diagnosis from ET to Myelofibrosis, I have had two labs and my red cells and hemoglobin are normal but the lab earlier once only showed them low.
I still have no symptoms and feel fine, but do take baby aspirin as my platelets are high on all labs.
I totally agree with your advice to keep busy doing your normal activities and stay positive.
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Like -
Helpful -
Hug
2 Reactions