Anyone want to talk about Myelofibrosis?

Hi,

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.

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

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?

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

@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.

Hi chrisatwell
I am 65 and was diagnosed with ET on January 10, 2025 which my O/H changed to maybe Myelofibrosis on February 10, 2025. That leads to me to question if O/H really know what I have. I do have high platelets that fluctuate 300 units but are still high, normal hemoglobin and red blood cells on four of five blood labs and two the most recent, as well as lowering white cells consistently but still high. I did finally have two decent appointments with my finally new primary doctor (after first one I chose canceled my appointments four times) and finally with a hand orthopedist today who did not know why I have enlarged non painful right ring finger proximal phanageal joint and clavicular-sternal joints. I appreciate that my primary doc, rheumatologist, and now orthopedist have said they do not know what I have which is unlike my O/H who first insisted I had ET and then changed that to Myelofibrosis. Since I really do not know what I have, before I take meds I would like to know. I am CALR mutation and not JAK2 or MPL mutations. I am only taking baby aspirin. I have no symptoms and no underlying health conditions so I am just still very frustrated with my O/H. I really do believe I need to have a second opinion outside of my current medical group to determine what I actually have and what needs to be treated. At least the orthopedic hand specialist agreed to do a procedure to determine what my enlarged swollen nonpainful finger joint has in the pannus fluid showing inflammation around the joint which has never been done and he can do an outpatient procedure. He did not know why the referrals earlier to check that was deemed unnecessary and not done by higher ups in the health plan earlier and is going to call the rheumatologist to discuss my case as she referred me for that twice.
I can understand why you are taking Hydrea since your spleen is enlarged and you have pain. Perhaps I could if had symptoms for which I am glad I do not.
This is a very helpful group and I am sure you will feel relief knowing others are in your shoes and want to help.
Definitely keep your positive attitude as will I. I hope you feel better very soon.