[gcParticipant]

Hi.
I’m 69 with high risk MM. I was diagnosed January 2023. SCT in June but no complete remission. I’m on a Radar drug trial and now on a maintenance programme.
This involves Lenolidomode for 21 days- seven days off. Isatixamab by drip every 14 days and Zometa every month plus pain relief and other oral meds.
I’ve found it hard going. Zometa seems to be the culprit as to the side effects. I also started my revaccinations and have had a few adverse reactions….not sure if it’s worth getting revaccinated!
I’ve found the maintenance programme a bit of a slog……mind you the sun is out, that should help
Just wondering if anyone else is or has been in a similar situation.

[squirrelParticipant]

@gc
I am also high risk MM diagnosed in March 2023. I am 65.
I have had 2 SCT’s Oct 2023 & Jan 2024. Also not a complete remission.
I started on maintenance programme 3 weeks ago although slightly different to you.
Lenalidomide 3 weeks on 1 week off which is where I am now.
Zometa I have been told every 8 weeks. That is it for me.
Re Vaccinations in a year I have been told.
Thank you for asking this question as it will also help me going forward – hoping you get some informative replies.
I always believe the sun shining helps.

[rabbitParticipant]

Hi gc,

Specifically on Zometa, when I finally started getting it (they forgot until I reminded them!), I had the following side effects a couple of days after each dose (every 4 weeks):
– I had such a loss of energy that I could barely walk (thankfully that reduced after the first couple of doses).
– I have symptoms resembling the worst kind of flu.
I don’t have bone lesions: my many years of lifting weights has given me strong bones, despite being hypercalcaemic when I was diagnosed. I asked/begged my consultant to stop the Zometa (this was before I was fully aware of the importance of preventing lesions in future).

We came to a compromise, as my consultant said that there was ‘wriggle room’ on treatment frequency: I now get Zometa only every 12 weeks. I still get the side effects, but at least they are no more frequent than necessary.

Regards
Rabbit

[gcParticipant]

Thanks for the info and reassurance. I have bone lesions and compressed fractures in my back so I understand the need for Zometa but…..it would be great if there were no side effects.
Unfortunately I fell, over 2 months ago and fractured my hip. I didnt get an op mainly because of the myeloma and the fracture was left to heal naturally which (everything crossed) it is.
I was on crutches for 6 weeks which has just played havoc with my back muscles. My team at haemotology have been great- got another CT scan and x rays and results indicate pain due to posture, enforced rest etc. as a result of the fall.
I’m gradually increasing my walking daily but it’s hard especially this week after treatment.
It has felt like I’ve gone backwards but have been cheering myself with outings for coffee and cake!! There was actually warmth in the air yesterday so had my first Mr Whippy!

[Author]

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