Auto sct - here we go.....

Hello Highlander

I have been reading your posts for a while.

I am due to get my autologous SCT next week in the QEUH Glasgow.

I will be getting BEAM chemotherapy.

Just wondered if you had any specific advice for surviving the process!

I’m specifically concerned about mucositis as I’ve suffered from it in the past after a DHAP and R- ICE chemo. I’ve also been readmitted each cycle of chemo for neutropenic sepsis do fully expecting that after the BEAM.

thanks

susan

Hi Susan and welcome. I will give you some information on your own post that you have put up xx

Hi susan-d, I will also be admitted to Ipswich hospital during the third or fourth week of August so you'll probably be finished your BEAM whilst I'm just starting. I'm also very apprehensive as had a bad time during. D-HAP. My PET was satisfactory with evidence of low level disease in several areas. My leg is unlikely to improve...I am left with pain and mobility issues. Fingers crossed for a good outcome for both of us. Let's keep in touch! Also interested in any advice people have. Caphosol mouthwash not prescribed. I don't know if its worth purchasing or stick with corsadyl and difflam

Regards, 

Lynda xxxx

Hi Lynda, good to hear from you again and that things are moving forward.

Caphosol is not in standard use across SCT units. I had it for both my Allo’s, my head SCT consultant said that it was rather expensive but they prefer to use it as they found the extra outlay on the Caphosol was offset by the extra time people were kept on the unit getting treatment for mouth issues and keeping beds occupied.

There have been a few folks on the forum who have bought their own and others who talked with their team and it was proscribed.

It’s also interesting to note that some SCT units don’t do the ice thing with the M but folks have just taken in their own.

((hugs))

About the Caphosol; it was explained to daughter that it’s not routinely prescribed but if it’s requested they will do so. Regular mouthwashes tend to contain alcohol which makes the whole situation worse if mouth ulcers are beginning. 

Hope this helps? 

Hugs xxx

Hi, all! Hope you're all making some good summer memories!

I am starting BEAM next Wednesday the 14th, with Melphalan on the following Monday and SCT Wednesday. All organs passed in the tests other than my kidney score being a bit low, hence the 48hr break before stc. I asked again about caphosol, consultant hadn't heard of it, not in eastern regions protocol! But happy to prescribe if necessary. In a month it should all be over, recovery and the wait and see part! I'm just focussing on the day ahead and planning nice things!!

My Hickman line seems to be working well, much better behaved than my former PICC line was! Advised that often infections are caused by gut bacteria and that I should expect extremely upset tummy, yuk! They will put me on the syringe driver again to minimise the vomiting, which is extremely kind of them!

I think I'm as prepared as I can be, thank to all you amazing people with your sharing of personal experiences, advice and support. THANK YOU!!!

Regards, Lynda xxx

Best wishes for a really easy ride, Lynda!

glad you’re so well prepared.....

hugs xxx

Best wishes and hope the gut behaves, let us know how you go when you are up to it.

Hi Lynda,

All the very best for the weeks ahead. It is a daunting time but it sounds like you have your mind in the right place - one day at a time, take things as they come, and soon you’ll be where you want to be.

If you have any questions, want to share an update, or just offload with people who understand, we’re always here.

Greg

Hi Lynda, it's so good to hear from you and all the very very best and an uneventful SCT journey.

You have been on a long and rather bumpy journey, so lets look for this to be the beginning of the end to it all.

If your team are willing to proscribe Caphosol, ask them to get it in for you. From the folks I have talked with it does help all lot especially with the M in BEAM. Start on the first day you are in the unit and keep it going through and out the other side of '0' day.

We all have our amusing stories including the 'runs' stories during our SCTs - so you can have a laugh at our expense when looking at THIS thread.

((hugs))