Is anyone here with MF taking momelitinib.I'd like to know how you're doing on the drug and if you have any side effects? I may qualify to take it....I've received a letter from my haematology doctor and meet up with him soon.At the.moment I am transfusion dependant .
I am Jak 2.
Thanks Lynn.
I have M F ,live in France,my consultant has mentioned M but for now I take a low dose of Jakavi & have injections to boost my bloods which does seem to be helping.Still get fatigue & wobbly sometimes.I am way too old for transplant,had P V for 11 yrs before M F 2 yrs ago. Best of luck to you.
Thank you for your reply.I have been sent a leaflet on the medication and I'm having 2nd thoughts....there are a lot of side effects. What injections do you take? Regards Lynda
My injections are Aranesp 500 msg,My nurse comes to to the house to do them & my. Pris de sang every 2 weeks.I suppose there will be similar in UK as mine is a French med.I hope you manage Lynda,I feel they are helping me,I also have protein drinks as I am anaemic .I know from my consultant that M / lib has side effects but everyone reacts differently,I have had Rux for 6 yrs as Hydrea did not work for me .Then Rux wasn’t available in U K,it is now & worked well for me.Very Good Luck to you ,Sally
I have taken Rux when first diagnosed in 2017 but my haematology doctor changed me to Lenalidamide in 2018 (I also have MDS). I had a great 2 years .Due to toxicity of lenalidamide with my Bronchiectasis I was started on Hydroxicarbimide which I'm on at the moment.My platelets are now in range but I'm transfusion dependant .I have given it a lot of thought and now feel I must give Momelitinib a go..I will keep you all posted....it won't be for at least a couple weeks.
Lynn.
Momelotinib offers significant potential benefit for those with MF with anemia. Like all of the treatment choices we have, it comes with a risk/benefit profile. Remaining on your current path of treatment also has a risk/benefit profile. It will be necessary to objectively evaluate the risks and benefits of each of your choices. It is important to remember that just because something can happen does not mean that it will happen.
Evaluating this decision requires that you also look at the contraindications for this medication that are based on your medical profile. In the absence of contraindications, then look at the cautions so that you are aware of them. Cautions do not mean that you cannot take a medication but do indicate a need for monitoring.
Here is some information that may help you evaluate your decision.
epocrates.com/online/drugs/...
drugs.com/monograph/momelot...
onclive.com/view/momelotini...
cancernetwork.com/view/mome...
I would certainly consider momelotinib if I had MF with anemia. I was an early user of Besremi when it first was approved. I understood there was a risk/benefit profile for this new drug. I started on it knowing that there were unknowns but believing it was in my best interests. Thankfully, this has been proven correct. We can try a new drug to see how it works. If it does not work for some reason, we can always discontinue the medication and try something else.
Wishing you all the best as you evaluate your options.
Thank you Hunter. I probably will go ahead and give it a try.My reluctance is mostly because I also have Bronchiectasis (much worse than it used to be) Initially it was diagnosed with hymopsis which still happens from time to time and last time was horrendous. I nebulise twice daily also . My main worry is picking up infection. Also I have MDS-5q deletion but I would say the momelitinib would help rather than hinder.I have found your help and knowledge invaluable.... thanks again.
Hi, I have primary MF and for the last 9 years have been on Ruxolitinib. Sadly recently this stopped managing things with my spleen enlarging again and my platelets and Hb getting lower each blood test. I have just received my Mom tablets and have been reducing my Rux dosage ahead of starting Mom hopefully on Tuesday. I have to have blood tests on Monday to get a baseline of my bloods.
I live in Southampton and am apparently the first patient to start Mom in the area.
I can keep you updated on how things go if you feel this would be helpful.
Caroline.
Hi CarolineI've had primary MF for 10 years and have been on Rux for 18 months after hydroxy stopped being effective. It's working well on platelets but I have low Hb around 85 so have been self administering EPO injections once a week and have had a few transfusions.
I too am attending Southampton General and my Consultant has said we could try Mom when it's available at the hospital. So it is good to know you have got hold of it. I'm speaking to Consultant in 3 weeks so will see if he can prescribe it for me, if he thinks it's suitable.
Hopefully it will work for you, please keep us updated on how you get on.
Best regards
Paul
Wow it is good to hear from someone else at the General. I am on my 3rd day of Mom. To be honest, yesterday my fatigue was really bad and I don't feel great at the moment. I think that is more to do with my low platelets and Hb and changeover from Rux rather than the new drug. I will keep you updated. I wish you well. Caroline
Yes it will no doubt take a while to get used to the changeover. Fatigue has always been a major problem for me too. Hope you feel better soon. All the best, Paul.
I'm coming up three weeks on Momelitinb (1 x 200mg) after finding Rux. caused toxicity issues. As implied by hunter5582, I'm on it for anaemia issues being Post-PV MF Stage 2. So far, so good with no obvious side-effects and is already helping on the anaemia side but not so much with the high platelets so I'm also on a very low-dose hydroxy tablet daily. However, consultant states it's still way too early on the new regime and will be a few weeks yet before things start to (hopefully) settle.
atvb
Kevin
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