I have MF, and tho Ive been a member of this group for about 6 yrs haven’t posted for a while. I’m now being treated at the Marsden in Sutton ( BTW, anyone else seen there?) and as I had sarcomatoid sccs triggered by the rux (excised, radiotherapy) I’m reluctant to take any meds that might make them worse. I’ve seen something somewhere ( can’t recall where- brain fog) that suggests EPO nit a good idea with solid tumours.
I hadn’t developed the sccs when I tried EPO before. It did raise my Hb. But was a huge hassle as needed a personal cold chain. Occasional transfusions seemed s better bet.
Am now being offered EPO again as need more regular transfusions. But am concerned abt scc risk. Haematologist is checking with derm, but that could take time.
Anyone have any experience, research info to help?
rachelthepotter
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Rachelthepotter
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We have to balance the pros and cons of different treatments. I'm sorry that you've had an SCC and I can see how that would make you wary of anything that might increase the liklihood of another. I've never heard of EPO affecting tumour development but someone else here might know something. However, there is definitely an issue with reliance on frequent transfusions as they can overload you with iron, which can be serious. I had many, many transfusions during my SCT treatment, sometimes every day. I now have very high ferritin and am shortly to start venesections to try to reduce it. In your position I would go for EPO and monitor your skin.
There are several options for treating anemia that may accompany MF. EPO and transfusion are not the only two options. Suggest that this is a question that needs review with a MPN Specialist who can best give you case specific consultation on appropriate options for your case.
hi hunter: its the general angiogenesis effect of epo now being recognised as potentially promoting tumour growth. Can’t manage to paste in link to article : but if you google you’ll find it.
I've been on both Rux and EPO injections for a number of years and certainly hadn't heard or read of any connection with EPO and SCCs. It would be helpful though to hear the advice given to your haematologist by the dermatologist.
I would however echo Jennie's point about more regular transfusions. I had to have a lot and now am in the same position of having too high ferritin levels. I have to have regular venesections which of course then send the counts down until quite a few EPO injections bring them up again. I don't feel great, to put it mildly, after them and they regularly have to be paused for other problems like infections to clear.
As you say the injections have to be kept in the fridge. Just after I started it my elderly mother got very unwell. Not living near me I was faced with having to stay in hotels. However a friend with a son with type 1 diabetes told me I'd have no problem with hotels, big or small, putting them in their fridges (which proved to be the case) and an easily purchased small cold case gets them from A to B for any trips.
Pre Rux I was on the steroid Danazol to get my Hb levels up. It was successful but came with its own challenging side effects and then affected my liver and I was taken off it abruptly. Presumably though it is successful for other people but obviously I don't know if it's used in conjunction with Rux. Your haematologist would advise.
No sorry that was ambiguous. It is having to have the venesections which then make me anaemic again and that makes life more difficult. In fact after the first when they took off what is considered the safe full amount I felt fairly wretched and it took quite a few months for the EPO to get the figures up. Before I even reported feeling way below par it had been decided at the hospital that only half the amount would be taken off about every two months in the future and that is only if I'm well. This of course means extra blood tests and visits to the hospital between routine appointments. The original blood transfusions were needed clinically but this is what has occurred in my situation.
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