Well, seems that I am anaemic after all: blood tests at Marsden showef Hb of 114: low enough for me to feel lousy but not low enough for transfusion. Maybe one unit in s couple of weeks time if on retesting. Its dropprd below 110.
Will then try starting EPO injections when I get back from holiday - probably early October. Was reassured by derm/ max fac surgeon that risk of recurrence of scc was now low so EPO not an issue. Feeling down.
Rachel
Rachel I am so sorry you’re feeling so lousy. It is good to have this forum which can provide support. It’s not surprising you’re feeling down. Anaemia can make you so fatigued and as a fellow widow I know how hard it is dealing with everything without our partner. Could you possibly start the EPO injections now/ sooner than October ? I know my husband felt more or less immediate benefit when he started them.
If there is a Maggie’s Centre near you it may be worth popping in or ringing them to talk about what’s going on and how you’re feeling. I’m recovering from Endometrial cancer treatment and very fatigued. My local Maggie’s is doing a couple of workshops on Fatigue. Are there any other local cancer charities which offer complementary therapy - it can be so helpful to well being.
I hope your holiday helps too.
Thanks, Fika. I’m hoping that one more transfusion will keep me going through the holiday in Denmark. It does help to have understanding people here.
I sympathise Rachel, can only suggest more exercise which helps me.
My Hb is currently 110 but the consultant won’t let me have EPO injections (despite me having six of them in my fridge mistakenly prescribed last October!). I think if I was in the US I’d be allowed some EPO at this level as it would be considered below normal for a female. I do know it puts the platelets up. Best regards Jo
Thanks, Jo.
My hb went below 90 despite iron infusion, so I was put on EPO injections, been on them about 10 weeks and hb now in normal levels (just) but was told to stay on them as started on peg which may affect hb. I feel a lot better since taking them. I’m in the UK.
Hi Lizzie
Good to know you feel better on EPO: I’ll see how I go when I start it.
My hematologist only gives me EPO injections if my hemoglobin drops below 102. In the US, 114 is nearly normal. Infusions are usually not given until your hemoglobin drops to 7.
Sorry to hear you are are feeling a bit down. Hopefully you will feel better on holiday. Not sure if your iron levels are also a bit on the low side, but perhaps a bit more iron in the diet would help. The emphasis would be on the yummy versions of iron in the diet. I love clams, oysters, and other foods rich in iron. Even if it does not help with the energy levels, at least you can have more reason to eat yummy food while on holiday.
Happy travels.
Sorry to learn you are feeling so low, I am a widow and it can be a lonely place at these times. Forgive my ignorance, what is EPO?
Hang in there Rachel. I went through that a year ago and it left me so weak I could barely walk my dog (and I'm a major walker). Get the proper treatment and you will feel a lot better. I promise. In my case, it was caused by my now former hematologist missing what was going on. Frankly, I don't think this should ever be the case when we're being treated for this disease but that's another discussion. Keep the faith. You will bounce back. Best wishes.
Hey Rachel... 
Just feeling for you right now...
Just go and have an awesome holiday & try to put it out of mind, at least for a short respite!
Warwick, our MATES last SCT patient, is currently flying over to you guys to become a World Cup "Walk-Up" Soccer player...
Warwick has a few issues but he & his good wife are making their first European sojourn & Warwick is testing his metal to fulfil a few challenges...
Best wishes Rachel, & have an awesome holiday...
Steve
(Sydney)
Oh dear it’s a rarity if my haemoglobin goes above 110 I can’t take iron tablets because of high ferritin.
I can tell straight away when my platelets are up. Which since Peg they haven’t so a reading of 103 is something I can cope with.
I find honey every day raises my haemoglobin although my nurse disagrees.
If you google its iron content it comes up high.
We are all different and as such respond to different things. I do hope you find something to help you
Sending hugs.
Jakavi and anaemia 
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Anaemia following venesection for PV…advice 
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anaemia now high potassium
