[heathermullenParticipant]

Hi, I have had 6 months of chemo cycles, started last Nov following severe bone damage in my spine, and have just had stem cells harvested. I gave a provisional date 11 July for SCT, providing results of bone marrow biopsy ok and health check day next week fine.  I have just read need to suck ice to avoid mouth ulcers and also to ask for paliferm on this forum, very grateful to know this in advance.  Is there any other helpful advice or information any of you can offer?  Many thanks

[ammeParticipant]

Dear Heather,

i had SCT on June 15th.

The ‘ice’ you need are freeze pops. They help to reduce damage to your mouth from the chemo. I rang my hospital for an indication of how many. I took in 60 but only used 35 in an hour and a half. It has certainly paid dividends. My mouth feels coated but not sore.

The other things I would take in are plent of underpants and large pads. Tena lady for night time. This is because if diarrhoea. Not at all pleasant but keeps you clean. You may not be as bad. Mine has been awful!  Sorry.

I also formed a couple of WhatsApp groups as am not on Facebook. I play silly games on my phone and words with friends. I don’t have a lot of visitors as it can be tiring.

[pamnParticipant]

Hello Amme and Heather, Thanks for that advice and suggestions for preparing for SCT as I’m due to have mine on July 11th too. Has your skin been sore / dry ? I was recommended Udderly Cream for feet and hands .Feeling grim plus the past few days heat must have been awful. Wishing you both a good recovery and the best of luck in the future. Pam

[heathermullenParticipant]

Hi Amme and Pamn,  thank you for advice Amme, it was kind of you to reply whilst your recovering.  It’s pretty scary isn’t it waiting for this treatment isn’t it.  I’m still waiting for results of bone marrow biopsy week last Friday before can be absolutely sure SCT will go ahead on 11th July as if cancer isn’t low enough I will have to have more rounds if chemo before SCT.  Don’t want that to happen, want this treatment over and done with.  Still feel lots of fatigue and worried this may mean cancer not low enough, could be though haven’t yet got over chemo and treatment for stem cell harvesting,I should know middle of this week.  Is this the case for you Pam?  Hope your beginning to feel better Amme.  Heather

 

[pamnParticipant]

Hi Amme and Heather. Hope you are recovering steadily Amme and either home soon or there already.Also good luck to you Heather and hope that your bone  marrow results indicate the levels needed to proceed with the SCT whilst you feel ready ,and want it here and over asap. I can really understand that ,as much as I feel anxious I just want to get it over with now. I’m seeing my Consultant tomorrow and will have the results from my last VTD PACE cycle – previous cycle hadn’t shown a significant reduction in the paraproteins but the Doctor said to still harvest last week whilst discussing a donor transplant at Christmas. About the side effects ? I’ve actually managed the worst of both the VTD and VTD PACE therapies and not had the extremes of fatigue or sickness . Last weeks harvesting was hot and long ( 3 days )but apart from feeling nauseous after an extra drug to stimulate more stem cells on the first and second days ,haven’t had any subsequent side effects this week and we plan a break away next week for a few days just to relax and hopefully prepare a bit for the next steps . Good luck to both you .Best Wishes Pam

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