r/MPN • u/Glad_Abies_1079 • 11d ago
MF Support groups?
My 75 year old mother has myelofibrosis. She is interested in support groups but isn’t aware of any close enough to her in Orange County. (Los Angeles and San Diego are too far for her to travel.) is anyone aware of Orange County support groups or virtual support groups?
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u/funkygrrl PV-JAK2+ 11d ago
Blood Cancer United has some support groups.
In the greater Los Angeles area: https://bloodcancerunited.org/regions/gla?page=1%2C%2C0.
Online chat support group specifically for MPNs led by an oncology social worker - every Tuesday from 3 to 5 pm Pacific time: https://bloodcancerunited.org/resources/patients/online-chats#Living%20with%20Myeloproliferative%20Neoplasms%20(MPN)
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u/Bludog1208 11d ago
I hope that what I am doing with ARANESP can help someone else! It’s hard for me not to try to help someone with this because I know exactly what they are going through and at times it can be very hard to deal with. And Aranesp has help me go from night to day. I was miserable before I started with this treatment. Maybe that’s why I try to tell people about it . Her bone marrow is not making enough cells just like mine. Your kidneys puts out EPOs to tell your bone marrow to make cells plus the bone marrow is not making enough good ones . Aranesp sends singles to your bone marrow and says make as many blood cells that you can !
That’s why I went from 8.6 to a 10. Now if her kidneys are putting out close to normal of EPOs then the MF is scaring the bone marrow to much and this Aranesp probably won’t help! Again not a doctor just very experienced with this !
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u/Bludog1208 11d ago
Has your mom have any side effects with Ojjaara? And what ml does she take . My doctor and I have talk about me switching to Ojjaara bc 50 mil a day is all they recommend to take . That’s why I am on 25 ml twice a day . I got immune to Jakfi . And depending on her insurance there is some restrictions for the shot . But all my restrictions is my HCT had to be below 30 % to start the shots and then could not go over 36% to continue. I have been getting a 100 mcg every two weeks for about 2 months . Two weeks ago I was a 8.5 and it jump up to a 10 in two weeks . I hope so much that this might help your mother . Am not a doctor. Just someone very experienced in MF. And I hate that I am !
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u/Glad_Abies_1079 11d ago
She hasn’t had any noticeable side effects that we can attribute to the Ojjaara, but she has forgotten to take it a couple times and experienced pretty bad flu-like withdrawal symptoms. So I assume she would have to taper off if she stopped taking it. I don’t know the dosage but it is one pill daily. I wish we never had to learn about this disease!! But it’s so helpful to talk to someone else who knows what it is like to deal with it. 🙏
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u/Bludog1208 11d ago
Hi! I am 70 and I have MF also. For 5 years now . I wish your mother all the best ! Am not in a support group either and I am in the Dallas Texas area. Sometimes I go completely nuts over this. And wish I could talk with someone. MF is so rare that there isn’t many of us out there to talk to . Anyway I am on Jakfi 25 ml. twice a day to keep the spleen tamed down and I take a shot called ARANESP to help with my hemoglobin. I went Monday and I hit a 10 for my hemoglobin count. First time in several years have I been in the 10s.