Newly diagnosed

On Sunday after gym I developed a temp that wouldn't resolve. Easter Monday it continued and Tuesday my dr did bloods and diagnosed just like that. My wcc was 164platelets 10. I have had 2 platelet transfusions and 3rd dose of chemo. The side effects of the chemo with the diarrhea and invontinenvr is horrific. I seem to sit on the loo. If I stand it runs. Has anyone been through this?

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  • My mum suffered terribly with diahorea. It's a common affect of the chemo. Particularly hydroxycarmonide.

    Sorry you are suffering.

  • Hi there. Our nurse is on the help line tonight if you'd like to talk about your symptoms - she may be able to give you some reassurance. She will be on the line from 7.30pm - 10.30pm tonight (28.04). The number is 08088 010 444 and is freephone. If there is anything else we can help you with, please let me know

  • A further update to Appines post above. The first month of chemo was horrific. Septicemia was a complication resulting in exceptionally high temperatures. The diarhoea eventually caused abscesses on the buttocks which are not healing due to the leukemia platelet count. Despite this 5 weeks later with gross wounds we were discharged to continue wound care through private nurses. The second round of chemo started a month later.

    The first side effect was a clot in the jugular. This is common after CVP. This was from the first of 3 CVP that were inserted in the first round of chemo.. Now it's daily blood thinner injections until end of chemo. This is tricky while on chemo as daily bloods need to be monitored - only have the injection if platelet count above 50.

    The wounds were healing well until the neutropenic stage was reached. Then all 6 weeks of healing fell apart. One wound progressed to a fistula.

    Despite all these major complications a bone marrow biopsy revealed remission. This news is most welcomed but still 3 more months of in hospital chemo are needed to ensure the cancer doesn't come back. With each visit there is a fear of diarhoea again causing more wound problems.

    This is certainly not an easy road and every day one faces a new hurdle. We go into this blind to the problems we could face. I hope that one day I will be able to compile a leaflet / magazine fir AML sufferers - "what not to expect"

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