I’ve been for a check up this afternoon, after about 7 weeks on Momelotinib there are a few changes which worry me.
Attached a pic of the doctors computer screen.
Chnages:
Platelets up from 227 in June, 529 last month after 3 weeks on Momelotinib to 1016 today, a heck of a jump
WBC 5.9 in June, 7.2 last month up to 8.7 today
Haemoglobin 78 in June, 81 last month, 95 today
Haematocrit 0.23 in June, 0.25 last month, 0.31 today
Mean corpsular haemoglobin 29.3 in June, 28.5 last month, 26.6 today
RDW 19.0 in June, 20.2 last month, 19.5 today
Blasts 0 in June, 0.1 in June, 0.1 today
Creatinine 91 in June, 91 last month, 86 today
Nucleated RBCs/100 WBC 1/100 WBC in June, same last month and today
Myelocytes 0 June, 0 last month, 0.1 today
Mean Corpsular haemoglobin 334 in June, 323 last month, 306 today
Other results in normal ranges, more or less.
I know a lot of the results aren’t vastly different. The doctor did say two months showing 0.1 blasts two months in a row was worth noting as previously the blasts disappeared after one month.
The doctor said usually he would add another drug to lower the platelets but wasn’t sure if that would work with Momelotinib.
Also just under two weeks ago I had a steroid injection in my knee (it didn’t work)
He checked my spleen and lymph nodes, all ok.
So I’m to carry on with daily Momelitinib and twice weekly EPO injections. Go back in 4 weeks, when he’ll decide if I need a BMB.
I’d appreciate any input /advice, obviously I am very worried about progression to AML as I have ASLX and TET mutations.
Thank you i advance.
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lizzziep
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In a prior post you said "the doctor said he expected my platelets to go up". Did Dr explain why? A different Jak-i, Vonjo, is for those with low PLT and so platelets going up on that drug is a good thing. But Momelotinib is for anemia as you know, and it's curious why it cannot reduce or maintain PLT counts as Rux does.
From this report "...platelet levels are generally maintained on momelotinib therapy without the need for dose adjustments". So you have good reason to ask your Dr for more details about this.
On the BMB my Dr said the time to do another one is when something of interest changes. I suspect your Dr will find that has happened. Do you have one from before to compare?
Thank you. I had a bmb at the beginning of last year, the only result I know from it is that my ET had turned to MF, stage 2, plus the ASLX, TET and another couple of mutations. I’m going to send the results to the doctor I speak to at Guys and see if they have any views.
You concern is understandable and does need follow up.
The rise in platelets is not too surprising as momelotinib has less impact on platelets as well as erythrocytes. In addition, if you are having significant inflammation/injury with the knees then some reactive thombocytosis may also be an issue.
Finding data on such a new drug could be a challenge. I am supposing that the usual cytoreductive agents would be under consideration in combination with momelotinib. Hopefully your hematologist can consult with the docs who have been involved in momelotinib research.
I also experience issues with my knees, osteoarthritis and deterioration fu to previous injuries/surgeries. I have been using hyaluronic acid injections to manage this problem. It makes a huge difference in my level of pain and function. The last time i used a newer formulation, Durolane. It is thinker, only requires one injection, and is supposed to last longer. With everything else going on, perhaps you can find something to help with the knees.
When the worries start to pile up, I rely on my list of coping strategies. One of the most important is saying the Serenity Prayer and following its philosophy. Shortened version
God grant me
Serenity to accept the things I cannot change
Courage to change the things I can
Wisdom to know the difference
Enjoying on moment at a time
Living Life one day at a time
Accepting hardship as the pathway to peace
Wishing you serenity and success moving forward as you seek to identify a viable path for treatment.
Thank you, I know I should try not to worry so much, but it’s hard not to. I do try to be more accepting of what my future holds. I asked my GP about hyaluronic injections but he said they don’t do them on the NHS, I think I’ll see if I could afford them privately.
I hope you can request an exemption for coverage since the cortisone injections did not work. I would pay privately for it if I had to. It is worth it.
my first impression looking at those labs is that I don’t think they are so bad, 7 weeks on any powerful drug we take will likely rock the boat a bit, I am no expert on blasts but I think your Haem will be quite relaxed about that reading, that’s the important one. As I have posted before platelets of 1m may not need treated unless you have other relevant risks or symptoms so I wouldn’t worry about that too much for now and let’s see what your Guys Haem says. Your Hgb and other red markers are up which is good, whites are within normal range.
I see you are going to ask Guys what they think, that’s the best idea, I don’t know if you have access to Clair Harrison but that would be ideal. I know it’s hard not to worry about any changes you don’t quite understand but I think your expert might be reasonably happy with progress so far, and remember it’s only 7 weeks which is not long.
Hi lizzziepI occasionally get blasts I'm my CBC and of course I panic every time. .
My first blast reading was 0.4 and I thought I had AML for sure. But my WBC at the time was also high and to calculate the % of blasts in your peripheral smear you have to divide the blast number by the WBC number (I'm pretty certain this is correct but am travelling at the moment and do not have the bit of paper in front of me where the clinical nurse showed me how to do the calculations so please confirm with your doc).
In your case
Blasts ÷ WBC = % blasts
0.1 ÷ 8.7 = 1.149%
My docs tell me blasts are evil (not quite their words) but they are not rushing me for another bmb unless I consistently have higher than 3% blasts (again that number if from memory).
I just wanted to reassure you that you can't read the blast number as quoted on the CBC.
I have not enough knowledge to comment on the bloods but hope Guys will be able to shed more light. I suffer with grade 4 arthritis in hips and knees. Had injections of steroids in my hips and hyaluronic acid in my knees privately. I was told hyaluronic acid is not yet available on NHS, which I was told 2 years ago. The injections were all very successful and have lasted well. It is best if done under fluoroscopic X-ray, rather than without any imaging guidance.
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