Hi, I was diagnosed with ET JAK 2 last year and I'm 60 this year. Like many of us I've been suffering with fatigue, this seems to have got worse lately. I'm on hydroxy, 1000/500 alternating daily.
I had my 3 monthly check up this week, my platelets are fine but my Hb level is low so I'm now anaemic, which obviously doesn't help the fatigue. The consultant said there was nothing I can do about this and it will be monitored every 3 months. I'm not having hospital appointments going forward, I will be having the bloods done at my local surgery, they will then be sent to the hospital for analysis. However, I do have what they call an open appointment, which means I can book anytime to see the consultant. I also have stage 1 prostate cancer and am on a similar tracker for that, which seems to work well and thankfully my PSA is stable.
As an aside, I've recently developed a craving for chocolate, I've never been a massive fan but now can't get enough of it! I'm guessing this is down to the anaemia. I wondered if anyone else has had a similar experience?!
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Trueblue8
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I would ask again about being anaemic as I could understand little could be done if you had PV but with ET increasing your iron levels shouldn't be such an issue - I'm obviously not a medic but if its affecting your quality of life through the fatigue then even for PV patients they do offer meds to boost the iron levels in a controlled way. Particularly when you also have prostate cancer to contend with, pleased to read that's stable though.
You could be right on craving chocolate to help your levels, dark chocolate is especially good for its iron content - even if it doesn't increase it, a bit of chocolate is never a bad thing 😉
Good morning Trueblue, Interesting about your craving symptom, I was diagnosed in 2007 with PV jak2, after a few years been treated with interferon injections, i then started Hydroxy 500 daily, Yes the fatigue is my main issue, my battery just goes completely flat, but i developed cravings, i have craved different foods for example, like yourself chocolate, porridge ( i hate porridge ), dorito crisps, fresh fruit to name a few, all cravings would last about 6/7 months. These cravings have left me now. Keep well..
Thanks for your reply and it's interesting that you've also had cravings. I've read that the chocolate one could be due to low magnesium levels. All the best
Hi thanks for your reply. I'm going to get an appointment with my GP just to chat things through and see what he recommends. I think with haemotologists it's not always easy to find one who knows a lot about MPNs, and therefore perhaps the advice isn't always the best!
You could always ask to be referred to an MPN specialist. Don't assume that the people who are currently dealing with you are making the best decisions for you … most of us sadly have learnt that we have to be more demanding to get the best treatment available. Good luck! Sakkie
I totally agree with making a GP appointment. I had a craving for all sweet things until I got PV. Now I have a craving for pomegranates. MPN’s are strange how they impact everyone differently.
Hi there. The anaemia is a hard one. It’s a difficult balancing act. The only thing I can add is that when I had ET and was very anaemic I was put on very low doses of daily iron. (I’m looked after by the team at Guy’s.) Clearly not the doses I would have been prescribed had I not had ET but every little helps! When my diagnosis was revised to PV (my HCT levels began to climb) I came off the iron. So yes, if you’re not with an MPN specialist I would definitely seek a second opinion and in any event it’s worth another conversation with your consultant. It’s hard to know to what extent the anaemia accounts for your fatigue. There’s quite a lot going on for you. Maybe the HU could be tweaked. Wishing you well.
Having prostrate cancer along with a MPn is a double whammy. I’m Et Calr. I am afraid anaemia affects me. I’m hoovering between 960-103. I’m limited as to only one iron tablet a day as it then pushes up my ferritin levels. I keep on trying to push up my heamoglobin. Dark Chocolate has a high magnesium content. So now I have 2 pieces of 90% coca with coffee. I also take magnesium tablets. It’s too early to tell if it will have a positive impact. Maybe your chocolate craving is linked.
I was diagnosed with ET Jak2 in 2008 but didn’t become anemic until las year. My hematologist advised me, as well, not to take iron, but was unable to bring up my levels. I found an mpn specialist and started seeing her last September. Through a bmb and extensive lab work, she said I had progressed to MF. I started seeing her weekly and when my hemoglobin went below 10.2, I got an Epo injection. She also started me on a new drug called Fedratinib. My last 3 visits my hgb was 10.9 and I don’t have to see her for another 8 weeks and I’m feeling much more energetic. By the way, my iron levels were normal in my original lab tests in September.
As for your cravings, I love chocolate, but I never developed any unusual cravings due to my mpn.
Take care. I hope you get some relief from your anemia soon.
With fatigue it is hard to say what is the iron deficiency, what is the ET, and what is the hydroxyurea (note side effect of asthenia). Perhaps a combination of all three. I expect the other feedback you received is correct that you could consider boosting your iron levels a bit with ET (usually not done with PV). However, this is all a balancing act. If you have not already seen a MPN Specialist, it would be good to do so. Most docs, even hematologists, rarely deal with MPN patients and do not always have the KSAs you need. Here is a list of patient recommended docs mpnforum.com/list-hem./ .
Sorry to hear about the Prostate Cancer. There is some evidence that those of us with MPNs are at increased risk for secondary cancers. ncbi.nlm.nih.gov/pubmed/250... . Hope you find effective treatment for that issue as well.
Chocolate is good for the soul! Dark chocolate (70% or higher) is packed with antioxidants. Chocolate also releases brain chemicals that boost your mood. In moderation - it is great stuff!!
I didn’t realise but I had ET Jack 2 from 2015 and only found out last year. I do not have a sweet tooth but I have always craved chocolate until I found out before my diagnosis that I was borderline diabetic. Stopped eating all sweet things and cut out my chocolate and my cholesterol level and sugar level went back to normal. Once I found out afterwards that I had ET I have found it really easy not to eat chocolate as I know not good for me to have the sweet things. But occasionally I treat myself. I’m wondering like you if chocolate is something good for the body with ET.
If EPO injections are available for you, then they can be a good way of bumping up yr HgB levels. However, my experience (I have MF) is that despite the HgB numbers going up to normal levels, I still feel fatigued and fuzzy. A unit of blood helps, but clearly not a good thing if it pushes my levels up too high. Tricky.
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