Due to the rapidity of it’s spread the hospital has decided to use Brentuximab to try to moderate the effects but this will only be a bridge to a Stem Cell transplant.If the Brentuximab doesn’t work they’ll try another chemotherapy agent who’s name i can’t remember and if it fails then a modified CHOP regime.The reason for me entertaining the thought that they may fail is not being negative but based on the experience of nothing else;PUVA,Bexarotene,Total Electron Beam,Interferon Alpha and Methotrexate working! Without treatment based on the limited data on a rare disorder like Mycosis Fungoides the advanced stage of this ailment would appear to have a life expectancy of about 2 years food for thought.
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Hi @Kevan7 thanks for sharing your experience and thoughts.
When I was diagnosed, with a different blood cancer, 19yrs ago I was given a 5-10yrs life expectancy and I am still here.
I think you have shown that research and trials (often funded by Blood Cancer UK) have and are coming on leaps and bounds and the range of treatments that can now be offered is growing rapidly.
We are all such unique beings and obviously, as you have again shown, your medical team are trying a range of treatments on your rare disorder.
Now this is so much easier said than done, but perhaps just try and live your life in the day, who knows what will happen in the future.
Who could have predicted Covid isolation times.
Please keep posting what is going through your mind, I can remember the same worries and I did not even notice when I reached my 10 year deadline.
I find it helps voicing what is playing on my mind. I remember even seeing the words going round in my mind.
The Blood Cancer UK support line is there for you on 0808 2080 888
Look after yourself.
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We hope you’re doing okay @Kevan7. Have you started the Brentuximab yet? We hope all goes as well as it can for you and we’re here if you ever want to talk things through!
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No guessing next week or the one after I will be on Brentuximab.I hope that it works as alternatives are running low.
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