[jillspikesmumParticipant]

Hi Mulberry, thank you for bringing this to our attention. I had my first SCT in Sept and achieved very good partial remission at 100 days. I have been very anxious about the lack of maintenance drug, and was about to email my Consultant to directly ask him if he would support me importing it from India. Maybe now I don’t have to, hopefully he will offer it to me soon. Can you direct me to where I can read the ruling for myself please?

[jillspikesmumParticipant]

Hi Graham, thank you Somy hope for taking the time to reply. It’s reassuring to read that initially your wife wasn’t out on any meds post SCT – maybe my Consultant is going to do the watch and wait approach (He said I was to have a blood test in 10 weeks time), but it would have been helpful if he had explained this. The feeling of being abandoned is quite hard to deal with after all the close attention after the last 2 years. My Consultant always discussed my “light chains” which were at 22,000 when first diagnosed, I wonder if this is the same as paraprotiens? Maybe I need to ring the helpline,

[jillspikesmumParticipant]

Thank you Mulberry for your very full and useful response. You have clearly made yourself better informed than I have – I feel a bit embarrassed that I just put blind faith in my Consultant. I guess I’m going to have to pluck up the courage to ask him if I am on ‘watch and wait’ and what his thoughts are about my sourcing Lenalidomide independently. I’ve read on here that some Consultants refuse to treat/support people who have gone independent. I was very anxious about the 100 day phone call, which was very brief, and tried to ask as many questions as I could. I am concerned though that when asked about maintenance drugs, my Consultant didn’t even mention the benefits of Lenalidomide. Thanks once again, you’ve confirmed what I suspected was the situation. Im still very new to this Forum, and don’t know how I would go about private messaging you, I’ll have to experiment!
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[jillspikesmumParticipant]

Hi Clare, your post took me back to when I was first diagnosed 20 months ago. Went to GP with flu like symptoms and aching ribs, she took bloods and 2 days later I was admitted as a priority, My blood numbers were off the scale, the diagnosis was such a shock. I was on chemo a week later. I had cracked ribs, fractured sternum and didn’t know – during early days of treatment my pain did increase and I struggled to walk BUT they did get on top of it, quite quickly really. I Now take 15 mg slow release Oxycodone Hydrochloride morning and night, with liquid Oxynorm if I experience and break through pain. This works for me and I’m generally pain free, most of the time. I’m due to go in for my Stem Cell Transplant on 7th Sept. it’s been a long time waiting for my Free Light Chains to come down low enough to be ready for SCT – but I was told I shouldn’t have to tolerate pain, so keep nagging until they sort the pain for your husband, I’m sure they will. Good Luck!

[jillspikesmumParticipant]

Hi all. I was diagnosed with Multiple Myloma December 2018, – it’s taken 20 months to get to a point where my Consultant feels he can put me forward for SCT. I am to be admitted 07 Sept. I’ve been told to expect to be in for 3 weeks, and only my husband will be allowed to visit, by appointment. Has anyone got any idea how often this may be, what was normal visiting like before COVID. Has anyone had a SCT during COVID pandemic – and I’d be grateful to read any further experiences – and for any tips on how get through it please. I’m really nervous if I’m honest.

[jillspikesmumParticipant]

Val, I’m new to this Forum and not sure if im doing this correctly, I’m trying to respond to your request regarding switching from Lenalidomide to something else.
I’m 59 and was first diagnosed late December 2018, just before Xmas.
Was on VDT for many months and light chain levels came down, but then stopped dropping and neuropathy in my fee was becoming a real concern as I was told it could be irreversible- so my consultant got me onto Lenalidommide. We were really pleased as we had read great things but after 4 rounds ( I think) light chain levels started rising.
So now I am on 15 mg Idarubicin (Zavedos is the registered name), along with 20 mg Dex. I take it for 4 days only, and the dex. I also take anti sickness etc.
My Consultant said its not a drug that is often used these days as its been around for some time – but it is a very good drug. I think its a case of finding one that works for each individual metabolism. But is worries me being on a drug and that is older and been superseded by newer stuff. So far I have not experienced any adverse symptoms other than ‘hot feet and face’.
I cant help with the drug you’ve been put on, sorry, but good luck!

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