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MPN Voice
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Good news!

So I went to the hematologist today and for the first time in years my platelets were at normal levels. But my anemia is getting worse. He took me off hydroxyurea which I’ve been taking every day for over over 11 years. I also take 20 mgs of Jakafi every day. I have ET Jak2 positive and PV. Any thoughts?

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Maybe turning into myelofibrosis? Or maybe the result of your two medications. I'm guessing he will recheck your bloodwork and see if the anemia still trends downwards and take it from there.

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I really don't understand those doctors! Their aim is to bring down the platelets no matter what and giving tons of drugs 2 and 3 together? What is the use of this treatment if it leads to a much worse condition?

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Yes, I’m going back in 6 weeks. I am a little nervous about going off hydroxy but also happy not putting chemo in my body for now. Why do you think it might be turning into myelofibrosis?

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Well, one of the symptoms of MF is anemia. But, anemia can be a side effect of some of the medications too. Also, another sign of MF is the platelets will start trending downwards. But I don't know much about side effects of HU and Jakafi so it all may be related to your meds so try not to worry just yet.

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Thanks for your support.

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Maybe you should ask for BMB to confirm it

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I also just got an anemia diagnosis after being on phlebotomies for about 9 months. Was on hydroxyurea, but has already discontinued about 2 months ago. Right now, my iron levels are very low, but I am mostly asymptomatic - just a little more easily fatigued than usual. The MPN-consultant is not particularly worried and states that when your erythrocytes are lower due to treatment, the iron tests are not as accurate. He is concerned that iron supplements will trigger erythropoiesis and raise my red blood cell count too high (increased risk of thrombosis). My regular hematologist is concerned the iron levels are too low and does have me on an OTC iron supplement. For now, I am going to go ahead with the supplements and try to get my iron levels a bit higher, but really watch the red blood cell count and d/c the iron if they creep up too much. It is not always clear what is best. Sometimes we just have to make the best call we can

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Have your ferritin levels been checked.?

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I’m embarrassed to say I don’t even know what that is. I know it has to do with iron.

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From our friends at Wikipedia "Ferritin is found in most tissues as a cytosolic protein, but small amounts are secreted into the serum where it functions as an iron carrier. Plasma ferritin is also an indirect marker of the total amount of iron stored in the body, hence serum ferritin is used as a diagnostic test for iron-deficiency anemia."

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thank you. I now even know more 😬

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Ferritin <8.0 - below linearity (could not be measured at that level). Iron measurement = 12. Iron % saturation (transferrin saturation) = 3%. Unsaturated iron-binding capacity = 395. Hemoglobin = 10.5. Hematocrit = 34.8%. Short version is that while iron levels are depleted, the only symptom is that I am maybe getting fatigued easier than usual. I did not really notice it much until I thought about a few recent occurrences. Plan is to stay on iron supplement until HGB get up to 12.0. Then will hold off phlebotomies until HGB gets up to the 14-15 range. It is all a balancing act. At least my platelets are riding around 557right now. With leukocytes normal and erythrocytes still low from the phlebotomies - not much risk of thrombosis. Actually have never had any thrombosis in over 30 years I have had an MPN. Will just have to see what the future holds.

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Yes, thank you,Hunter, you are always so informative. So my numbers this week on my hemoglobin was 9.7 and hematocrit was 29. My doctor was still reluctant to put me on iron supplements. We’ll see what happens when I go back in July.

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Those numbers sound rather low. Are you also doing phlebotomies? is your anemia symptomatic or just numbers on a blood test? Apparently the docs do not always agree on what to do in this situation. it made sense to me to go with a low dose of OTC iron and modify my diet a bit to include more heme-iron (animal based). Nothing to radical. The doc actually just wants to get my HGB back up above 12 and will then cut out the iron supplement. Seems like a reasonable approach, so I went with that plan. So far, tolerating the iron supplement (Vitron C) without any trouble.

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No, I never had a phlebotomy. My doctor always thought it was too extreme in my case.

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Those are some really low numbers, especially with you not doing phlebotomy - certainly would want to get to the bottom of it. Maybe the combo of HU and Jakafi is just too much for your body to tolerate. You saw the list of what my doc did on an iron panel above. If the doc has not already done all of those ( serum Iron, serum ferritin, total iron-binding capacity, unsaturated iron-binding capacity, transferrin saturation) it would help shed light on things I would think. Hope you get some answers soon. FYI - the only other thing I have done is to increase my intake of iron rich foods. Nothing too crazy - just eating bit more of things that will help. Heme-iron (animal based) turns out to be much more easily absorbed than non-heme-iron (plant based). Here is a great resource for what foods have what amount of iron ferralet.com/patients/about... . There is some other good info on this site too - just ignore the drug product adds unless it becomes relevant.

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Thank you, Hunter. I’ve never had all of those iron tests. I’ll have to ask my doctor about them. My father was a physician so I think I just go along with what the doctors are saying that asking too many questions. I’ve learned more from this site than from anyone. :-)

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I meant to say “without asking too many questions.”

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I learned the hard way from a surgery back in Jan 2018 to ask LOTS of questions. Docs don't always tell you what you need to know. Sometimes they don't know themselves. Sometimes they are just so busy they lose sight of what they need to cover. the third party payers really don't seem to want docs to spend much time with patients - too expensive. I have a new hematologist that I relay like. While he had only had 5 MPN patients in his whole career (20 years+) he spends lots of time and actually listens to me and answers questions. He has even called my on the phone twice to talk and share info I needed. Be sure to ask - ask - ask. I think any doc that won't listen and answer is the wrong doc to have for me. All the best to you.

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Lol no worries. I’m anaemiic. I lack heamoglobin. In turn it causes fatigue . I can’t take iron supplements which help create heamoglobin because I have too much iron (ferritin ) stored in my body but the hydroxi won’t let it be used to create the heamoglobin.

The blood tests show up as ferritin levels not iron levels.

Hope this helps.

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Yes, that’s how I feel. I’m really happy to be off the chemo but it’s really just a trial basis to see what happens.

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I'm so happy for you!!!!!!

If you don't mind me asking your age?

I love to hear of people doing so well!

Jamie x

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Thanks. I’m 63.

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That's amazing...here's to 30 more!! I'm 50 and just diagnosed with ET. I want to be doing a jig in my 80's...

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Well, they’re doing more and more research and finding different treatments all the time. With that attitude, I’m sure you will :-). From everything I’ve read, you can have a normal life span with treatment. You will find a lot of information and support on this site. You can reach out to me anytime. I’ve had a lot of experience with this disease.

Take care,

Cindy

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Thank you Cindy-

I appreciate it... and I love to hear good news, so thanks for letting us know that your platelettes are down. Mine are in the 900's. Hoping one of these days they will go back down too.

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Just a few months ago mine were at 847,000. My doctor and I have been working to get them down. Don’t worry, you’ll get there.

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Oh dear I’m sofa ridden when they are in the 500s!!!!

We are all so different.

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i was also feeling awful at 847,000. I was feeling really dizzy and I couldn't even drive myself to the doctor. My partner had to take off work to drive me there. That's why I'm so happy that my platelets are normal again. I still tire very easily but I feel like I can do more now. I just hope it lasts and that my anemia improves.

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So pleased for you. At time of my original diagnosis I read quality of life would be normal. How wrong is thAt!!

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I’m Calr ET I after 3 years, have now got my platelets under control ( still too early to be sure) I’m anaemia- 102 I’m on hydroxi and anagrelide.

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I guess we can assume that lowering your platelets lowers your red blood cells. It seems to be the common thread.

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Yep unfortunately it lowers my heamoglobin too.

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