[ottoParticipant]

Great thanks Jane.
Ill find out from him. Its a minefield right!
Kim

[ottoParticipant]

Hey Mulberry,

Same, I met up with my consultant the other day. He would like me to continue but happy if I decided to come off. He is confident that if I relapsed, the NHS now has some great drugs, not much different to private now.

I have been taking 50mg Thalidomide for nearing 4 years now. Im on a 21 day cycle with a week off and tolerating well. Only side effects is my toes are a bit numb and tiredness, but I take in the evening to help with that. Im going to the menopause now too which doesn’t help.

I dont believe there is much in way of studies on Thalidomide long term effects. I guess the way I see it, is because I have myeloma, im going to be at risk of other cancers anyway.

I don’t think maintenance was available on NHS when I was first diagnosed, and that it is now means it must be making a difference which is great; like you have mentioned, there is more data now. We just gotta hang on in there for more great drugs available for us.

Until I am confident and very sure about coming off, I think im going to continue with the Thalidomide for as long as I can, even if I do feel like my body shouldn’t have all these toxins anymore.

I do feel I need to talk through more, so might give the team a call. Always good to talk…

Thanks again for all the information you have shared, its very helpful.

All the best
Kim

[ottoParticipant]

Hi,

I know I’m a bit late to this but check out http://www.insurancewith.com…

I was quoted £120 for a years world wide cover.

K

[ottoParticipant]

Hi Lottie,

Just back on here as I’m searching for a clear approach, what’s next for me in way of treatment etc…

I saw you are to start Bortezomib, thalidomide, and dexamethasone (VTD).. you’re probably way into this now. How did you get on?

I was lucky that my job included health care and in 2018 I was offered Bortezomib, thalidomide, and dexamethasone (VTD). I remember handling ok, but was tiered after, probably more emotionally, which really can play a big part with our energy levels.

I hope your treatment went well.

Kim

[ottoParticipant]

Thank you all for your comments. This really helps.

[ottoParticipant]

Just looking for guidance and came across this. Thank you Mulberry…

[ottoParticipant]

Hi,

I am 49, diagnosed in 2018, SCT with complications of phnamonia, colitis and sepsis, twice Oct 2018. It has taken two years to feel strong, and finally this year after the pandemic, i felt safe enough to go to the gym for my swimming. I found swimming in 2020 and 2021 in an outside pool did wonders to my recoding, strength in myself.

I was lucky when diagnosed it had not gotten to my bones.

In 2019 I started Thalidomide as a maintenance, and three years on I’m still tolerating it well, and remission. When it comes to tiredness, the early days, it was tiering. But with fitness, walks etc it has really helped with all of that. I am not considering coming off the maintenance and have been asking around for advise about this. My insurance is going up to £700 a month and I can quite afford anymore..

Originally my specialist said to be on for at least 2 years. But now I’m 3 years in he says, if I came off and relapse, we will have to start from scratch again with phase one. Its a big decision.

@myeloma2016 – are you on Thalidomide now and how are you tolerating it?

My specialist did say, if I found out I had myeloma now, he would put me on a different regime and then lenalidomide as a maintenance instead…

Best
Kim

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