AML POST CHEMO

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Hi All

My  wife has been home now for 5 weeks post 3rd chemo for AML, last dose high cytarabine. The last week she has had night blood pressure peaking at 210/ 191. Called 111 as concerned and went to GP next day , sent to hospital for full blood tests, all came back good. We are awaiting a decition from the consultants for next step as there is a minute mutation still within the cells, they were all hoping this,would have been destroyed following last session but sadly not. They are considering either further treatment locally as the mutation is reducing all the time and is now very small or go direct to SCT. It seems to make so much sense to keep trying locally in our opinion as the mutation is so small as opposed to the SCT route with all that goes with this intensive treatment. Has anyone been in this position and also suffered similarly with the blood pressure increase following weeks of being at home.

It's been nearly 3 weeks now since last biopsy results which showed the mutation still present. The wait for the call is becoming very stressful!!!!.

Nick

  • Hi Debbie

    The Flag is first to lower the marker and then straight to conditioning and SCT. As with you my wife has had 3 cycles to date 2 x cytar/dab followed by high dose cytar. 

     Nick

  • Hi Debbie

    My wife we t into hospital locally this afternoon and is having her GFR test tomorrow with the radioactive injections. FLAG IDA will start weds. This is the start of the long road of SCT and to be totally honest, this is scaring me to bits.

    Nick

  • FormerMember
    FormerMember in reply to Fulhamboy

    Hi Nick

    It is very scary I know. They scared me so much at the meeting about sct, I was very upset after. I spoke to my partner about what to do if I didn't make it and wrote a letter to my 7 year old daughter and wrote future birthday cards to her. I was terrified,  however very uncommon not to make it through the sct. They are on top if everything and the window of being neutropenic is shorter, only about 2 weeks, as the donor stem cells recover much quicker than your own. I had no serious infections through transplant. I had sepsis twice from the standard treatment begore I went to transplant and was quite poorly with a fungal lung infection too which delayed my transplant by about 3 weeks.

    Assuming they are not going to wait for her neutrophils to recover before the transplant? Have you been told what conditioning she is having? Also, how old is she? I am 47.

    I think you just need to treat it like another course of chemo. I had 5 rounds of chemo before transplant as they originally thought I wouldn't need transplant, so I ended up having all 4, then another to bridge me to transplant, then the high dose conditioning chemo, so 6 in total! I have no physical effects (that I'm aware of!) Accept I am now infertile and in an early menopause.

    I watched about 3 boxsets of Polldark in transplant. I only felt rough for about 2 weeks out of the 3 I was in there. Try and stay positive and take one day at a time. 

    Debbie

  • Hi Debbie

    My wife is a 64 and quite fit and healthy. I don't believe they are going to transplant when neuts are zero but are not waiting as long as previous ie.  weeks after biopsy. At present we have not been informed of the conditioning just the current FLAG IDA. Having stays and scans today prior to the radiation injection this afternoon and FLAG starting on Weds.

    Nick.