[mich05Participant]

Hi Misterboy

Healthtree.org have a non secretory section and I think the lady who started this section may have gone from secretory to non secretory. You may find more information there.

Best wishes

[mich05Participant]

Hi t1825
Hope you are getting through after diagnosis which is a very tough time. I am on the Radar trial and just completed SCT. It was a hard decision to make but at the time I decided to go with my consultants advice for me. I have got this far and am very positive about the future.
All the very best

[mich05Participant]

Thanks for this information Mulberry , so the only route for NICE to approve is for the drug company to request? If the drug company doesn’t request then NICE don’t ?

[mich05Participant]

Hi Jenny
I am about to harvest. It has been about 4 weeks since last treatment . Plan is intravenous cyclophosphamide as a one off dose this week , it helps get the stem cells . Then small subcutaneous injections mid next week , 5 consecutive nights then hopefully onto successful harvest. I have not had any other treatments in between, the positive of that is I feel so much more human and gained more energy.

Good luck.

[mich05Participant]

Hi
I am still relatively new to this , but on the Radar trial which from reading your comments will hopefully give some answers to your questions and show benefits of MRD testing . I didn’t know that MRD is not routinely done and I think my samples go to Leeds. I’m due testing this week after my induction though even if MRD negative 🤞the plan will be to proceed to SCT .

[mich05Participant]

Hi Zanaib ,
I am wishing you all the very best with the new chemo treatment and like you say From reading others stories on here sometimes a change of direction is required. This really isn’t an easy journey but there will be better times ahead.

[mich05Participant]

Brilliant news Zanaib, I’m so pleased the induction has worked and spurs me on. The dexamethasone days are a little strange for me .
I was thinking how you were getting on and when SCT would be. I hope you are now feeling well though off the treatment. Waiting is tough but maybe Christmas will be a distraction . I’m trying hard to find things to keep me busy and lift spirits.
All the best.

[mich05Participant]

Hi Dave
Sorry to hear about your reaction . I also had the zoledronic infusion 2nd week 1 st cycle and I think due again soon. I am unsure which medication causes me the side effects. I hope you are soon feeling more yourself , I am also week 2 of 2nd cycle tomorrow. I am hoping things keep getting easier , we’re nearly half way there.
All the best.

[mich05Participant]

Thanks Zanaib and Tony
Yes a diary maybe useful to help see improvements. Definitely feeling better so far with second cycle 🤞. Hoping to go back to work for a period, but will see how it goes.
It’s encouraging to know others have completed the course and done well.
All the best.

[mich05Participant]

Hi zainab and Mo
Thank you for sharing. I am just starting cycle 2 , cycle 1 was a bit rocky but hoping things get better.
I hope all goes well with your next stage.

[Author]

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