My husband’s mylofrobisis has progressed to high risk . He was just put on jakafi at 10mg twice a day for about a month now
He feels much better after changing from droxia to Jakafi and his appetite is good and not as anemic.. however we just came in from seeing his MPN doctor and his hemoglobin is 7.0 hematocrit 23 platelets normal 363 , RBC 2.56 and WBC 25.21 His doctor recommends a blood transfusion yet he feels better and not as anemic as he was a month ago
The doctor said that Jakafi can lower your hemoglobin and it seems it is but he feels good
He has never had or needed a blood transfusion so just wondering what it entails and any adverse side effects and I wonder if he does not have the transfusion will he be out of breath and not enough oxygen
Thanks
Written by
Bainbridge
To view profiles and participate in discussions please or .
I dont have any MF experience but hearing from others with MF on Rux it can and probably lower Hgb etc , but it can also come back up again after a while, I dont know if your haem mentioned that. Hgb at 7 is pretty low and although he may feel okay currently he probably needs to get Hgb up a bit. There are also other meds your doc can prescribe that my increase Hgb, you may want to enquire about that. Others with MF may have more detail for you.
thanks for the insights and did not know about the hemoglobin can go back up which is promising and hope other MF people can add some more insight. He will have one unit of blood this Friday and he has spoken to another doctor about STC but his age is 74 and donor match is not a 10 so difficult decisions thanks for your support. This group is so helpful and I love reading all the posts
Hi, I'm transfusion dependant....atm transfusions every week.I get very light headed and dizzy when my hb drops even in the eighties.Mostly dreadful when it fall into seventies..... breathless, forgetful (oxygen to the brain!) not too much energy. My ferritin is high still around 1800 even though on meds to lower it but also a problem with having the transfusions.Waiting to see if maybe a candidate for the new drug momelotnib (if approved).
Keep smiling we're lucky to have mostly great haematology doctors but we do have to fight our own corner at times.
HiI have had primary MF for 8 years now. Moved to Ruxolitinib from Hydroxy at end of last year as platelets had climbed up to 900 and wouldn't come down. Rux was great at first, brought platelets down to 250. Then my Hb levels started to fall rapidly, down to 78 and I had to have a couple of blood transfusions.
Bit of a convoluted process having them. Needed a cross match blood test then it takes about 3 hours to transfuse 1 unit of blood, (I had 2!). Did bring Hb up a bit and it is currently 89, still low but consultant is happy with it and says it should slowly rise. Do feel breathless and dizzy sometimes.
There is an alternative to blood transfusion and that is Erythropoietin (EPO) injections which stimulate red blood cell production. Consultant said we could try those if Hb levels dip again, but not needed so far. Sorry for long post but hopefully your husband's Hb levels will rise back up.
hi thanks for the info and yes the Dr mentioned the EPO but she said she wants to wait since it can increase the spleen and RUX should be reducing the spleen. My husband was diagnosed in 2020 and then this past March for whatever reason his primary MF went off and now he is high risk MF where they are talking to him now about SCT which at his age 74 is risky and we can’t find a 10/10 donor match.
Let me ask you how long did it take for the hemoglobin to come back up ? After how long on RUX? I know each person is different but just curious
And Friday my husband will do another blood test and if the levels are still low will do one unit of blood which takes like you said two hours
Also the cross match blood test is this something I should ask them about to do? For the transfusion? My husband is really scared since he has never had a transfusion done before
A cross match is important for transfusion safety. The transfusion itself is fine, quite relaxing really. I assume that 7.0 is the equivalent of 70 in UK measurement. That seems very low, whenever my Haemoglobin dropped below 90 I felt pretty bad and struggled even to go for a walk.
thanks I just looked it up and I will make sure it’s done. I am sure they do since we are doing this at the cancer center . My husband as I informed you last time went to high risk MF he was put on RUX for about a month now 10MCG twice a day which has caused his hematocrit to 27 and hemoglobin to 7 . It’s odd that he does not feel not as bad as he was two months ago when he was still on the HU so tomorrow we will do the blood test again to see the results and I gather the cross match then the transfusion of the number is still low
He also did consult for SCT but the match is not a 10/10 so we are checking with siblings now. SCT seems very high risk for him and I recall you decided to do SCT
HiHb came back up pretty quickly after transfusion. I had been on Rux about 3 months when Hb dropped and now after about 6 months it is stable at around 89, still low but not dropping.
I think (at least in UK) they have to do a cross match to ensure the blood they are transfusing matches any antibodies in your blood, (not an expert!). I was a bit apprehensive about my first transfusion but it was painless, just boring sat there for several hours, so you husband shouldn't be scared by the process.
Paul thanks so much for the info and It sounds like you only did the transfusion once ? Or a few times ? We hope this new drug that should be out in the next few months is better than RUX when it comes to the anemic situation
I had 2 transfusions a few weeks apart. First with 2 units of blood and second with one unit. Yes the new drug is supposed to not drop the Hb and sounds really promising. Trouble is it usually takes the UK a long time to approve new treatments after the USA has done so. I hope all goes well for you and your husband. I think we are lucky that treatments like Rux will hopefully give us a normal lifespan.
According to MPN specialist speaking on new drugs at the ASH convention, he expects Momenlonib to be approved in summer of 2023 in the US. Should solve the rbc with Rux.
I’ve only been on 5mg 2x a day for 9 days now. I had labs yesterday & my Dr was happy. My platelets have risen some (after being on Besremi for 9 months). I’m no longer anemic so that’s good
This is a difficult one. I may at some point be advised to have a transfusion but I am not happy at the idea. I have myelofibrosis (progressed from PCV) and my hematocrit is rather low, although not falling fast. I get quite breathless. I have been on Jakavi for two years. I would prefer EPO to transfusion, but I don't want to be reliant on either. I knew someone who had transfusions for the same condition 3x a week and his wife said it was terrible, they spent all their time at the hospital and he passed away anyway. I am 81.
You should discuss this with your hematologist, ask about alternatives and explain that you don't feel ill at present. Any chance your dose of Jakavi could be reduced? I go down to 2x 5mg when my platelets fall too low, otherwise I am on 10mg and 5mg daily.
Good luck and don't be afraid to discuss your situation with the hematologist. If you are unhappy, ask for a second opinion.
thanks for that advice. My husband is 74 and they also did talk about SCT for him which scared the heck out of him especially when the donor match was not a 10 out of 10. He is on 10mg twice a day I wondered if he reduced it would his hemoglobin not decrease as rapidly. His hematocrit is 27 now and platelets within the normal range
Overall he does feel better on RUX and like you he rather not be transfusion dependent so we will do blood work this Friday again then see what the numbers are
Also did they give you EPO? Since the Dr did say she would but after a few months on RUX since it increases the spleen
Yes, one of the problems with transfusions and SCT is the risk of kidney problems. I already have moderate kidney damage, due to the breakdown of RBCs. I have not had EPO and would avoid any change in treatment if at all possible. If your husband can remain reasonably well...if it aint broke don't fix it! I've survived 13 years so far.
Very best wishes. It is always a balancing act with this cancer. I am much better on Jakavi, got terrible itching on Hydrea but after many years. If the hematocrit remains too low, perhaps a short spell on 5mg daily? Ask the hemologist.
Hi, Bainbridge, I also have myelofibrosis. When my hemoglobin goes below 10.2, I get an EPO injection. My illness started progressing last year and I became much more symptomatic. . I was on hydroxyurea for years but recently started jakafi. I’m sure it will lower my blood counts even more, but the injections really help. I’ve never had an infusion, but I believe the protocol is when the hemoglobin drops to 7, an infusion is called for.
thanks for the feedback , my husband started jakifi 10 mcg twice a day for about a month now and has felt much better but the hemoglobin continued to go down to the other day to 6.6 which is why they did the blood transfusion. The doctor said the EPO can increase the spleen so she would wait a few months with the jackifi . How long have you been on jackifi and what dosage? seems the therapy is clearly helping but the hemoglobin decreases . Thanks
I was on it a few years ago before I even got diagnosed with Myelofibrosis , when I had ET. In 2019 I changed doctors because I felt I was progressing but my local hematologist didn’t think so. My new doctor took me off Jakafi because my hemoglobin was in the eights and she felt that it was contributing to my anemia. She also diagnosed me with post Et Mf. I just started it again a week ago to alleviate some of my symptoms. I do not have a large spleen.
Unfortunately, everyone is different and it’s a balancing act with all these medications.
thanks since it seems the jackifi is doing the same to my husband lowers his hemoglobin. At that time that you were on jackifi what dosage did you start with and now what did they start you on again? I am wondering after his blood transfusion yesterday if we should ask the doctor to lower the dosage? My husband was primary MF and progressed to high risk MF but the jackifi is helping him with the symptoms . Yes this disease is all a balancing act and we do see a MPN doctor at the cancer center where we live
I believe it was the same as I am now, 10 mg twice a day. I was on it before for like 3 1/2 years, from 2016 to 2019. Then my new MPNspecialist put me on hydroxyurea. I just started the jakafi again a week ago. I had gone to Dana Farber Cancer Institute in Boston for a consultation regarding a SCT. he wants me to try it for three months and then see where we are from there. They are saying I am intermediate 2/high risk, depending on the scoring system that they’re using.
thanks my husband was on HU since 2020 then when he went to high risk they changed to Jackifi we go to Fred Hutch in Seattle and my husband did get a consult and spoke with a Dr who does SCT with specialized with mylofrobisis. He is 74 and the Dr said it would be high risk for the full dose of SCT so they would do lower chemo dosage However we need to find the match
We don’t have a 10/10 donor match so that is concerning and testing his siblings now
Dana Farber said the same to me. It’s called reduced intensity chemo. I still don’t know if I’m a candidate or not because I have lung issues. I should know soon.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Getting transfusion dependent 
Besremi and Hematocrit Control
New here, question on blood pressure, fatigue
Sudden increase in hematocrit while on Pegasys?
