[jared1969Participant]

Hi all. I think I was registered many moons ago when I was 1st diagnosed. That was back in 2013 aged 43. Since then I have had all the normal treatments, bone marrow stem cell transplant, myeloma 11 trails, lenolidamide, now I’m relapsing again with pomalidamide 4th relapse. Next on the hit list is Immunotherapy. My dilemma is whether to carry on or just say enough is enough. I’m tired all the time my mobility isn’t great due to tumours in hips spine ribs etc. just wondered if anyone else here has had immunotherapy and how they have tolerated it ? Nearly 14 years of treatment has taken its toll. Thanks for listening.

[rabbitParticipant]

Hi Jared,

You have clearly been through so much, and I can understand you thinking whether it is worth having a 5th line of treatment.

There are many immunotherapy treatments: bispecific antibodies such as elranatamab, teclistamab and talquetamab, the ADC treatment of belantamab and many others (not all approved in the UK such as CAR-T). For example, I am on Daratumumab, which is immunotherapy (though as a monotherapy, only really for patients in remission).

Therefore there is no one answer to side effects and sheer logistics (for example CAR-T is a ‘once and done’ treatment), even if everyone responded the same way to the same thing.

Do you know what your next treatment may be?

I won’t tell you blithely to carry on no matter what, this is a tough path that us patients go through. However, you may want to think calmly about the many options out there and the impact on those around you if you give up.

All the best, Jared.

Regards
Rabbit

[jared1969Participant]

Hi Rabbit. Thanks for the email. We have discussed CAR T Cell but that would be in the private setting or if i can find a trail. I actually have my meeting with my oncology team on Thursday as I had another PET Scan 10 days ago. So it’s dependant on that. But as you probably know i can feel the difference in my body especially the pain i am feeling. The 2 different doses of oxycodone i take dont take the edge off and I find myself dropping off all the time through tiredness. I dare say after thursday i will have a clearer picture, the last year has just been tough due having neutropenic sepsis, lung infections and pnemonia. The stays in hospital are becoming more common. I would love to have CAR T Cell Therapy as from my understanding (limited) once done thats sort of it. Im just tired of the daily drugs steriods especially. Im on 40mg weekly and hate what it does to me plus the weekly infusion. I know I’ve got to be happy im still here ive seen my kids get to 22 and 21 which when diagnosed was looking slim. This disease does funny things to you, i think a lot of it is not knowing exactly how long you have and that relapses can happen at anytime.

Thats my little moan out of the way. Sorry i hope it doesnt sound all doom and gloom. Just gets to you sometimes.

Appreciate your message. It really helps

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