Bad news again

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43 subscribers
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Hi all

Had my blood taken by the competent nurse at the surgery today, well maybe I should say more experienced nurse. It's for something to do with a memory test like the one you would get from a GP for beginning of dementia. She (my GP) says that before I see them, they like to have certain blood tests and ECG done. Yes, I've started to have memory problems.

Phone rang a short while ago, it was a doctor from the hospital where my blood went for testing. My haemaglobin level is below 100, it's at 97. Could be worse but the doctor said they have to let people know that it's below 100 in case of lightheadedness.

He also said that I'm neutropenic again and if I become feverish or get an infection I have to ring the hospital emergency number I was given in early December. I'm worried, this is new to me. Being neutropenic.

Tvman

tvman over 4 years ago in reply to FormerMember

Thanks for your reply, do you know, I've never met anyone else who takes Aranesp. When I'm explaining to people, I sometimes say about cyclists getting caught because it's EPO, then they know. Just on last Thursday I was explaining to the physio at my first appointment when he was asking about my meds, I mentioned EPO and he made a comment about WADA calling at my house so I knew he understood.

I'm on 150 mcg weekly of Aranesp and the last time I was at the cancer unit, it was mentioned that if my haemaglobin dropped again, which it has, my dosage would be doubled. I've to get another blood test tomorrow so depending on results, I may be contacting my Haematologist asap.

Thanks again for getting back to me.

Tvman xx

Love life and family.

FormerMember over 4 years ago in reply to tvman

Dear Tvman

Many thanks for your message and kind words. I’ve come across the MDS support group but in terms of the on-line community I’ve found this to be much better and more active. I’m really sorry that you’re now having issues with neutropenia. GCSF (or filgrastim) is basically a glycoprotein that stimulates the bone marrow to ultimately produce more white blood cell/neutrophils. I’ve been taking it twice a week for over two years now and it has been quite transformational for me in terms of reduced infections, although my counts are still often quite borderline but fortunately not dangerously low. I hope your haematologist manages to get your neutropenia under control soon.