[anne1Participant]

Hi Rabbit

Thank you for your response. I completely get it about being anonymous!

My consultant also mentioned recent drug developments mean SCT is becoming less necessary. The fatigue seems to be a common thread, which isn’t surprising as our bodies have a lot to deal with so little wonder we need have lots of rests!

You’re fortunate you restarted the gym. I’ve already got bone fractures so my exercise choices are limited to probably just walking. Hobbies like Pilates and swimming probably are no longer an option for me. Can’t believe how much myleoma has affected my life. I’m still in process of how to “live with it”, which might come after I’ve learned to accept it. Thinking a local support group may help. If anyone is a member of one, I’d be keen to find out if you find it helpful.

Thanks again Rabbit. Your reply is really useful.

Anne

[anne1Participant]

Hi Rabbit

Thank you for your reply. I’m glad you’re in remission and enjoying life. May I ask if you had STC or is your treatment only chemotherapy? SCT maybe an option for me but I’m also interested in other options but not sure how often chemotherapy is administered once someone is in remission.

Can I also ask if life has returned to a near normal for you? Thinking of infections, social distancing, energy levels and anything else! You sound as if you’ve a handle on myleoma and getting on with things which is great to see this is possible.

Thanks again

Anne

[anne1Participant]

Hello

Can anyone on the forum tell me if having one genetic mutation, automatically means I am high risk and therefore Stage 3? Or does assessing risk and stage depend on other factors eg K/L ratio? My consultant says they don’t Stage patients any more but I see some people on the forum have this information about themselves. Maybe different health boards do things differently but can’t help thinking if less than good news is avoided. I’d appreciate any thoughts or advice.

Newly diagnosed and still getting my head around it all!

Thanks
Anne.

[anne1Participant]

Hi Rabbit

So is the U.K. regulator’s delay related to Brexit? If so, then is there any sort of protest, petition, campaign you know of I could participate in? Or is the delay to do with something else? If other myleoma patients in other countries are benefiting from new treatments, we in U.K. must have the same opportunities too, surely. I’m curious to know how successful CAR T has been for others.

As you can probably tell, I’m newly diagnosed and new to the forum so apologies if the above has been previously discussed.

Thanks
Anne

[anne1Participant]

Hi Rabbit
Thank you for your reply. I appreciate you taking the time to post your comments as they’ve helped me rationalise a bit more about SCT.

I believe US are about to begin CAR T human trials very soon but didn’t know other countries have approved it for Myleoma. I wonder where we are in having it approved (although I live in Scotland so might be different from other parts of U.K.). If it’s successful for other patients in other parts of the world, let’s hope it’s available soon here. Haven’t heard of the other three emerging treatments you mentioned but intend to find out.

Thanks again
Anne

[anne1Participant]

Had my first meeting re SCT and was surprised to find out the average time for remission is 2 years. Was expecting a longer duration. Does anyone have any thoughts?

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