So I never posted test results but I’ve been feeling so poorly lately, I decided to reach out to my mpn friends for your sage advice. I’ve been taking blood tests every couple of months for 14 years. But I don’t remember seeing this kind of list after the result. For several months I’ve been getting rigors (chills, fever, shaking, and muscle weakness), with the weakness lasting several days. My fatigue is constant and unwavering. I’m post Et MF and I take hydroxyurea and baby aspirin.
Sorry for my rant. I hope you all have a blessed evening (or day if you’re in a different time zone)
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Cja1956
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Sorry to learn that you are feeling so poorly at the present...
I cannot see your Hct% or those of your Platelets, however, based upon what I can see, I am not too surprised about your feeling so fatigued. Your RBCs are quite low, as is Hgb.
The tear drops, burr cells, ovalocytes, macrocytes are consistent w/ a diagnosis of anisocytosis, which means that your Red Blood cells values are currently of a variety of shapes & sizes. When RBCs are normal, they are doughnut shaped & proportional of similar size etc.
When was the last time you had a review of your Med's? How much HU are you on daily?
It might be worth asking for some input from your medical team? Sometimes a dosage reduction adjustment can assist, or if you are Post ET/ MF, maybe it's time to start considering other Med's too...(?) However, all the more reason to run this by your Specialist Cindy...
Hey, Steve. Seems you always have my back, even from the other side of the world. Your explanation was very easy to understand. 😊My doctor actually keeps increasing my meds. I was taking 14 hydroxyurea pills / week and she added 2 more. I go back to her in a month.
As Steve says here, has your Dr discussed other med options? Rux (Jakafi) can be indicated for MF, and some members have good relief with it, but that is a question for your experts.
If low platelets limit your options with Rux, another jak inhibitor very recently approved (if you're in the US) is Vonjo. This can be used in post ET MF if platelets are low.
Thanks for your input. My platelets are actually quite high. They average from the 700’s to the 800’s. I’ve also been on jakafi in the past but I became anemic with my hemoglobin at 8.9. I’ve never heard of Vonjo. I’ll look into that.Thanks again.
With high PLT, Vonjo is not likely to be the right one. But with anemia limiting Rux (the most common reason Rux is stopped) you might benefit from Momelotinib. It a Jak inhibitor that reduces the anemia problem. They just applied for FDA, so we can hope it will be available soon. It has "fast track" at FDA which can help it get approved faster.
Looking at your bloods, it’s understandable that you’re feeling so fatigued and generally unwell. I agree with Steve about a review of your meds.
I don’t know if it’s just my thinking, but I really don’t understand what is going to be achieved by increasing your hydrea yet again, other than a further decline in your red cell count. Do you know if your haematologist is basing this recent decision just on your 700/800 platelet count? It just doesn’t seem right to me. Your quality of life is being dramatically affected. Surely there has to be a better suited treatment for you, such as those noted by EPguy.
I think it’s time to strongly advocate your case at your next consultation.
Evidently, my case is unusual. It’s always been a challenge to lower my platelets because then my other numbers go down. It’s my understanding that most of the new medications for MF are for those that have falling platelets.
See the note above on Momelotinib that is in FDA review. It's supposed help for MF with anemia. It's too new for now, but you and Dr can watch for if/when it's approved, if you're in the US.
I'm so sorry you are feeling unwell. It's really hard to be positive when we are physically weak and ill.I'm not knowledgeable enough to comment on your results (and others have done that) but would it be worth asking for another BMB, just in case there has been a change?
Very best wishes for getting this sorted out, Jennie
Hey, Jennie, so nice to hear from you. In answer to your question, I had a BMB last year which I requested to see if I was a candidate for a SCT. I also had a second opinion. Both doctors agreed that I wasn’t “ready”. So I don’t know if my doctor will agree to another BMB for now.
Hi Cindy, thanks, I have just posted an update. I'm going back into hospital on 23rd August. In the meantime I am feeling pretty well.I really hope you feel better soon.
As others have already suggested, a change in treatment plan may be in order. Would also suggest getting a second opinion from a MPN Specialist at this point. Also a reminder to the treating docs about what your treatment goals are and what is/is not acceptable/tolerable in terms of treatment effects.
All the best and hoping you are feeling better soon.
Thanks, Hunter. So I’ve been going to a specialist for a while. She was on that original list you sent out when I first joined this site about 3 years ago. She’s the one that diagnosed me with post ETMF. I have another appointment with her August 31, so I’ll see what she has in mind for me at that time.
That sounds like a good plan. I would add to it, what plan you have for yourself. What are your treatment goals and what are you willing to tolerate to achieve those goals? Are you willing to consider another type of JAK inhibitor or one of the other classes of treatment for MF - including clinical trials. As EPguy suggests, perhaps Momelotinib could be a consideration when approved.
Hi, have you tried Anagrelide? My wife has MF and is currently on three x 500mg Anagrelide a day with three 500mg hydroxycarbamide a week. The Anagrelide is supposed to lower platelets only while the hydroxycarbamide lowers all blood cell types. When she's not bleeding from a GI bleed, (about 10 times in past four years, causing hospital time) she is fine. White cells are high at around 30 reds are low normal, platelets normal. If taken off the drugs her platelets rise very quickly to over a million.Hope you find a good balance of your drugs.
Thanks for your reply, Jointpain. Yes, I’ve tried Anagrelide in the past but I couldn’t tolerate it.
Your wife and I have something in common. It’s rare to find somebody with MF who also has high platelets. This disease affects everyone in so many different ways and it seems so difficult to treat. Please give her my best.
As a few have said, it would probably be wise if you can to see a MPN specialist for a second opinion, they could hopefully work with your local Haem to optimise your treatment, wishing you good luck.
Hi I’ve had to google a few things. Your WBC seems low. I really think you need to consult with your specialist. I do hope things look up for you. When is your next appointment ?
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