[NadineParticipant]

Hello there,

It's been a while since I was last on here. I guess like most people involved with MM either with the condition themselves or someone close to them there are ups and downs. It is a very individual journey however the positivity and support is top notch!.

For those who may recall, my mum was diagnosed at the beginning of last year and has undergone the CDT (?) treatment which she has responded to really well. There were plans for her to have SCT in October so we decided to have a short break before this commenced.Unfortunately mum developed a clot and treatment has been put on hold as she's now on Warfarin.

My question is, are there other treatments that have as much feedback as SCT as it appears to be the main one people rave about. Answers Please!

My second question is, can anybody give any advice as to any possible help/assistance mum could apply for?-she's now 70, lives on her own and is fiercely independent however I really feel if she is entitled to some assistance she should get it:-)

Thanks Guys
XX

[Mick66Participant]

Hiya Nadine

Have a word with the Hospital social worker they will give you all the advice you need and will help fill in claim forms, My advice would be get all the help you can for your Mum you can always say you don?t need it later, and claim for everything you can MM can be expensive with lots of Hospital visits.

Mick

[DaiCroParticipant]

Hi Nadine,

I was in a similar position to your Mum… my CDT was very successful and I went through the prelims for my SCT but developed an infection in my Hickman Line the day before my harvest was due to start which put everything back by 3 months in the end.

I questioned the SCT at that time… I felt well after the CDT and it held well and was still holding strong (6 months +) when I finally started my SCT. My SCT failed after 10 months and I still wonder just how long my CDT remission would have held out for.

I only produced enough stem cells for one SCT (I was told that the 6 sessions of radiotherapy for the tumour on my spine had depleted my stem cells) and I wonder if holding out until my CDT remission relapsed might have given my system longer to recover. The US do not put such strong faith or reliance on the SCT and their results seem to be much better than here…. it is certainly food for thought – but each to their own and I would not want to influence any else's treatment plan because of my personal doubts.

Regards 🙂

Dai.

[cinziaParticipant]

Hi Nadine and Dai,
I am having similar doubts. I have had a great response from the CDT treatment and am uncertain whether to proceed with the SCT. My specialist wants to discuss other options with me as he understands my reluctance (amyloid has been detected in my heart so the risks associated with the sct are higher). Once I have seen him I am happy to share the information provided – I ma being treated in Australia.
Dai, what treatment have they put you on now? Hoping it all works out for you.
cheers 🙂

[scott9Participant]

Hi Nadine,

I didn't have the SCT as my kidneys are only working at about 20% and there was a higher risk. I've been on maintenance therapy since July and so far so good…

All the best

Scott

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