Hi there you certainly seem worried and concerned about the changes in your husbands condition and although this is a great site in providing support, the best person to be telling of your worries is your consultant who knows your husbands condition better than anyone. If you are not happy with him tell them and ask for a second opinion. I did and found my PV had moved onto PVMF, the results of a BMB provide the answer and I went through a whole load of changes after 15years with PV and even when things started to settle down from January 2022 to January this year I was continuously finding a shortness of breath and fatigue, further investigation revealed that after years of thick blood, this had brought on AF and heart failure and although this sounds scary knowing what was going on really helped and has given me back a good if not limited quality of life. Stick with it and I really hope things improve for the both of you soon.
thanks for your reply yes the MPN doctor is very aware of his condition since she has been treating him since it was first discovered back in 2020. We normally go for blood labs every 3 -4 months and in Dec I did ask if we should do another BMB to see if his disease has progressed. The doctor said no since he never had these really bad symptoms and his numbers platelets WBC and RBC were always the same numbers till March where he was really dizzy shortness of breath fatigue it was like it was overnight this happened and all the doctors thought he had an infection / virus since his WBC really went up to over 20 and he also has a little pain since the ER said when they took images that his spleen is enlarged.
At the ER they said it was not his heart so that is good
After reading these posts I suspected his disease has progressed and perhaps that the droxia is not working or a different therapy is required
Just curious what therapy are you on?
And the BMB is scheduled for May 2 And hope the therapy that they will put him on gives him some more energy however I am not sure if that will happen but I just pray it does
Hi there its so difficult having to adjust to the changes in your body and although every one has the main diagnosis of one sort or another, how we are effected individually can vary in so many ways and sometimes many doctors fail to appreciate or understand but do stick with it. I was changed from hydroxacarbomide after the mutation was confirmed to ruxolitinib, I found it very harsh on the 20mg x 2 I was started on and enjoy a reasonable quality of life apart from poor sleep most nights but I'm still alive and kicking after feeling so poorly for the last year. I'm 67 in July so hope to get a few more years I yet! Hope your husband starts to improve and feel better soon and you can enjoy your life together.
I am post Et Mf and I just had my 3rd BMB since 2019. I think they are the best way to figure out what is going on. The symptoms that your husband is having are, unfortunately, normal for MF. MF progression is different for everyone. It’s sounds like your doctor is being proactive and even though a BMB is uncomfortable, it’s a great diagnostic tool.
Cindy thanks for your reply and yes unfortunately it is the symptoms but the strange part is that we would go for labs every 3-4 months and the numbers were always stable and he never had this severe symptoms till March the dizzying, shortness of breathe, sweating came about and WBC jump to over 20 and RBC low to about 2.99 so even the ER and doctors thought he had an infection or virus. The strange part to me it’s like this happened over night and did anything trigger this who knows
But the BMB will tell us more and that is scheduled for May 2
Also just curious what therapy are you on for your MF ?
So currently I only take hydroxyurea and baby aspirin. When my hemoglobin goes under 10.2, she gives me a Procrit injection. I am at the point where my Hematologist wants me to have a consultation regarding a SCT. I just had my third BMB on Wednesday just so I could show the results to the transplant doctor in June.
Hi Cindy well the BMB confirmed the MF has progressed and now my husband is high risk MF, his hemoglobin is still measuring about 8.5 and hematocrit at 27 , WBC still high around 27 and RBC around 4.9 so very anemic and spleen is getting enlarged since he feels pain, so per the appointment she wants to get him on jakifi at 20mg which I read others start off lower and this will probably get him more fatigue and at the same time she wants him to consult with SCT which to me is high risk. Overall I am debating for another opinion at Mayo Clinic or MD Anderson. The doctors we see are MPN specialists at a cancer center where we live but I just don’t know what else to do at this point
I was high risk MF and was put on 20mg of Ruxolitinib twice a day. It was like a miracle - my energy increased and I felt genuinely well. My haemoglobin decreased but stabilised when I started EPO injections. My platelets dropped too low but by then I had already decided to go for a stem cell transplant. Yes it is a risky procedure but I decided it was worth the risk. Now, eight months on, my consultant told me today that I am doing very well. Hope this helps somewhat. Jennie
thanks to hear that jakifi worked for you the Doctor wants to start him at 20 mcg daily I think it’s 10 twice a day so next week we have an appointment with the pharmacist to go over this chemo drug did not realize it was a chemo drug as well since he was on HU since 2020 I guess everyone reacts differently since right now he is very anemic and I hear jakifi can make you more fatigue
the doctor also mentioned epo not sure what that is ? And we do have a consult with the doctor end of May to talk about the transplant
My husband is 73 so he is getting to the age where there are other conditions that may not make him suitable for the transplant
Jakavi is a "protein kinase inhibitor" not a chemotherapy drug. I think it can increase fatigue but, as I said, it actually increased my energy. EPO is something naturally produced by the kidneys - it is needed for the production of red cells. Before EPO, I was having fairly regular transfusions, but once I started EPO I didn't need any more (until my SCT treatment started). I was still somewhat anaemic, but I was able to function perfectly well. Good luck for the SCT consultation.
hi, I’m sorry to hear about your husband’s progression. On my last report with my doctor, she wrote I was intermediate 2/high-risk based on my symptoms and blood work. I have an appointment next week to discuss my results of my BMB with my hematologist and I’m flying to Dana Farber in June to get an evaluation for an SCT. It’s all very scary.
Your’re doing all the right things. Going for a second opinion is very important. There’s nothing much we can do to be on that right now.
thanks for your note. My husband will do a consult with the SCT Doctor end of May to see if he is even a candidate. We go to Fred hutch and they state they have done over 17k transplants. Thanks again
thanks and good to know since that is also where his hemo blood doctor is at Fred hutch
I think we will try the jakifi for some time to see how it works for him but he is just terrible now anemic , low appetite due to spleen size and also now has bone pain in his shoulder all the symptoms of MF
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