[ducladyParticipant]

I had DVD on relapse in 2021 and tolerated it really well apart from velcade which causes neuropathy and was lowered Dex was lowered also.
I’m refractory to thalidamide I don’t respond well to it.

I’m on maintenance Dara with low dose Dex

I have been off work and still am

[ducladyParticipant]

Hi squirrel

Contact the helpline that’s what it’s there for and often they will see you even if it’s to say everything is ok. They would rather that thsn you sit on pain etc.

Steroids can cause your tongue to swell it’s called steroid tongue (I had no idea until I had it)
Your jaw could be aching from pain tension but could be Zometa

Pain wise I would be keeping on reporting how much pain you’re in.
I have boney disease and I was found to have a tumour on my T9 hence the pain as it feels like it’s the ribs

I know we don’t like keeping on but in the case of myeloma you can make an exception

[ducladyParticipant]

Hi all
I joined the forum in 2017 at diagnosis I have looked in but not posted since then

I had my first relapse in 2021 and started DVD heading to 2nd SCT after 8 cycles my PP and light chains had come down and plateaued had SCT in 2022 and I am on Dara maintenance with 3 monthly Zometa (I have bone disease)

I have to say I have tolerated dara very well with little side affects, I had more problem with velcade and neurotoxicity and Dex
Both of which were lowered in the first 8 cycles.
I have responded well better than my first transplant which left me with PP4/5 light chains 66

Im now PP and lightchains less than 2 and maintaining that with dara the best results in 6 years considering at the beginning I wasn’t in a good place
I will continue with dara until my next relapse

Dara wasn’t available in 2017

I had VDT to start and was refractory to it and then onto ESHAP to get me to my first SCT

I’m grateful for the advances in treatment and the use of Dara

Next I could be looking at Car T cell therapy

[ducladyParticipant]

Hi there
Back in 2017 I tried GCSF and couldn’t mobilise stem cells I had plerixafor and still couldn’t mobilise so I had another plerixafor and managed to harvest enough cells for two transplants
Good luck in getting those little babies 🙂

[ducladyParticipant]

Hi David

Thank you for your merseyside sunny welcome. It’s lovely here in Hereford and I have been soaking up the sun myself.

There is a support group here next one is May 18th

It’s nice to hear that your improving and long may you continue too.

 

I should know more next week where I’m at

enjoy your evening

 

Viv

[Author]

Posts