About 3-4 months ago I started to become anaemic with increasing nausea fatigue etc. MY haematologist reduced the dose of hydroxy I was taking, and I almost immediately felt better, marked decrease in symptoms . However this proved short lived, and after about 3 weeks my nausea returned with a vengeance, as did the fatigue and so on;
I had my bloods done on Monday and my haemoglobin has fallen again to 102.I don,t see the haematologist until the end of August and just wanted to know anyone elses experience of similar position. Is this allrelated to the hydroxy or the way my PV is progressing or a combination of both ?
Kind regards
Paddy
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paddy67
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HI Paddy, sorry to hear you are experiencing this, I am afraid I don't know the answer but as you are not seeing your haematologist until Aug it might be worth contacting the nurse specialist at the hospital to ask for their advice on the nausea and fatigue. Best wishes, Maz
Hi Maz, I should have said I was started on Stemetil for nausea when at clinic in June ,which helps ,though you don’t want to be taking it too often or for too long , apparently ! I’m more concerned about the anaemia, especially when b12 and folate and ferritin levels are normal. I dare say I’ll find out more next month !
Nausea is a common side effect of HU, along with other GI effects. It can also cause drowsiness. asthenia (lack of energy) and dyspnea (shortness of breath). NOTE: Folks with MPNs often report fatigue as a symptom. It is important to understand that like may forms of chemotherapy HU is a toxic substance. Because it is therapeutically weak, the doc often has to find a balance where the patient can tolerate the adverse effects while achieving the desired benefit of reduced hematopoiesis. Some people tolerate HU with few or no noticeable side effects. Others cannot tolerate HU. My own experience with HU is that with three cycles of being on HU - the first two times - no real problems. The third time, in the last year, I became HU intolerant. I experienced signs of HU toxicity even with reduced doses. Most of these adverse effects diminished after I discontinued the HU.
It is impossible for any of us to know for sure what your situation is. Your surmise that it may be a combination of the MPN and the HU makes sense. Suggest you pay attention to what your body is telling you. I have found that some docs can be very dismissive of HU adverse effects (hopefully not something you will experience). You may need to be very assertive in getting your concerns addressed. Additionally, systems of care often prefer (even require HU failure) to other medications as the other meds are more expensive. If this is so in your system of care, then you will have to be even more assertive. Assertive patients receive higher quality care. Passive patients do not. Please feel empowered to get the care you deserve and I hope you get your concerns addressed ASAP.
It is very important to understand that even with the "same" diagnosis, the unique presentation of each of our MPN profiles can drive different treatment approaches. I am Age>60 JAK2+PV. (JAK2 mutant allele burden=25%) The "standard" treatment protocol most everywhere is Hydroxyurea - low dose aspirin - phlebotomy. That is what I was on until recently. When I consulted with a MPN Specialist (not just a regular hematologist) he changed the treatment recommendation based on my individual profile. It turns out that I have developed HU-intolerance. I was getting toxic effects even at low doses. It also turns out that I am one of a subset of MPNs (ET/PV) who actually have an increased risk of hemorrhage rather than thrombosis when my platelet level increase. My von Willebrand Factors tend to drop below norm, particularly when platelet levels are in the 800Ks. In 30+ years of MPN, I have never had any thrombosis. I have had easy bruising and bleed too much, especially when on aspirin. The MPN specialist rather prophetically stated "You really do not want to get a brain bleed." A couple weeks after seeing him, I was diagnosed with a hemorrhagic brain tumor that was surrounded by significant edema. This tumor was related to my Neurofibromatosis type 1 not the MPN. However, it is a good example of the need to looks at the entire profile of each MPN patient, both how their MPN presents and their MPN related and all other medical conditions. For some people with PV - aspirin will prevent a clot that causes a stroke. For others, it may increase risk of a brain hemorrhage. For some MPN patients, HU is well tolerated and prevents significant problems associated with their form of the MPN. For others, HU causes worse problems than the disease itself.
This is a rather long winded way of getting to the main point. You have a unique MPN profile that needs to be assessed on an individual basis by a competent MPN expert doc. MPNs are rare disorders (1/300,000). Even hematologists see only a small handful of MPN patients in their entire career. Most simply lack the experience and knowledge base to individualize your treatment. They have no choice but to default to standard protocols to determine your treatment. The way you respond to the treatment options is also unique to you. We each can respond very differently to the various medications and other treatment choices. You really need a doc who can help sort all of this out. I found the MPN Specialist on this list of patient-recommended MPN experts mpnforum.com/list-hem./ . There is a lot of promising research on MPNs underway and the thinking on MPN treatment is changing, particularly among the docs who are staying on top of what is cutting edge of effective treatment.
Finally - to answer your question - my treatment for PV is phlebotomy only. I cannot take HU - I am intolerant. I cannot take aspirin or any other blood thinner - between how my MPN effects me and the risk of tumor recurrence, that would be a really bad idea. The MPN expert doc did not recommend trying any other chemo because my PV symptoms are so mild that the benefits do not justify the risks. Phlebotomy adequately controls the erythrocytes and my platelets mostly hover between 500K - 650K. Leukocytes have always stayed in the normal range. I have never had any thrombosis (in 30+ years) and the very mild splenomegaly I experience has actually decreased in recent years. All of this could change over time if my MPN progresses. Perhaps I will need some other form of chemo at some point. Perhaps I will need chemo for the tumor if it recurs (FYI - had successful craniotomy/resection on June 17).
I hope this helps. Please know that your situation may be quite different than mine, so your treatment plan may need to be different as well I am blessed to have been able to create a really great treatment team to address my needs for all of the various medical issues I am facing. I pray that you will be able to do the same. One thing I have learned from all of this is that educated assertive patients get higher quality care. Passive patients do not. I hope you will be able to do this for yourself and get the answers and the care you deserve.
Hi Hunter,thanks for your well informed response ! I’ve been trying to figure out when and how they will treat my anaemia. One suggestion is that when my haemoglobin drops to about 70, I may have a blood transfusion (it’s 102 just now),and that would correct the anaemia along with reducing my hydroxy dose . Do you think this is logical ?
I am not sure what the numbers you are citing refer to. I suspect we may be looking at something somewhat different or rather different scales. The normal HGB range is 12.0 - 18.0 g/dL. I am just guessing at this, but perhaps the numbers you are referring to would translate as 102 = 10.2 g/dL and 70 = .70 g/dL . I truly am just guessing at that. Regardless, your hemoglobin numbers give a rough estimate of your level of anemia, but the more accurate assessment is in other values.
•Serum iron. This test measures the amount of iron in your blood.
•Serum ferritin. This test measures how much iron is stored in your body. When your iron level is low, your body will pull iron out of “storage” to use.
•Total iron-binding capacity (TIBC). This test tells how much transferrin (a protein) is free to carry iron through your blood. If your TIBC level is high, it means more transferrin is free because you have low iron.
•Unsaturated iron-binding capacity (UIBC). This test measures how much transferrin isn’t attached to iron.
•Transferrin saturation. This test measures the percentage of transferrin that is attached to iron.
I also have anemia currently - induced by phlebotomy. In fact, the doc said "we have been over-phlebotomizing you." My ferritin levels were so low they could not even measure them. I went on a brief stint of iron supplements to get the iron levels back up. Here is the tricky part - raising iron levels also raises your body's production of red blood cells and I believe platelets as well. Thus you end up needing more chemo or phlebotomy to control the hematopoiesis. So it is a balancing act. Not all docs agree how to approach maintaining this balance.
The really critical number to watch with PV is actually Hematocrit. HCT needs to be kept below 45% for PV to be adequately managed. From my perspective, I would rather put up with a bit of iron deficiency than have my HCT get too high. But it is all relative and there not absolutes with all of this. Some of what is best depends on what is best for you individually rather than some sort of universal right answer.
You have not mentioned whether you are including phlebotomy (aka venesection) as part of your treatment regimen. Most docs consider it an integral component of PV treatment. Having said that, I have no idea of what your treatment package looks like nor what it should be. I am not a medically trained professional, just a fairly well read MPNer who knows how to do research (actual background is in Clinical Psychology).
I will go back to what I said before - be sure to connect with a doc who really does have expertise in the treatment of MPNs. Most hematologists do not have the KSAs to qualify as MPN-experts. My approach is that I found a local hematologist who is a terrific doc - he actually spends time with me, listens to me, answers my questions, and respects my right to make decisions about my own care. I am only his 6th MPN case and 2nd PV case in 20+ years hematology practice. I also have a MPN specialist who acts as a consultant on my case. I have to travel 2 hours to see him. He advises me and my hematologist based on his extensive knowledge and experience with hundreds of MPN cases. The two docs do not always agree. That is OK as I listen to both and then make my own decisions about what is best for me.
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