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Should I get CAR-T therapy for myeloma after 12 years?

Community Member

3 months ago

I am a veteran, coping with myeloma for over 12 years. In the beginning I had heavy treatment with a lot of collateral damage. Drs. Don’t care if they cut your head off in the process. Lost most of my right lung because of a medmal where they accidentally poured chemo into the lung sac and caused pneumothorax. Nearly died. Took 2.5 years to recover from it. I almost had the stem cells but after reading about it and talking to patients I decided against it. Froze my harvested cells just in case. Now I’m debating whether to get CarT. Problem is it’s a long uphill journey and only 1/3 of the patients respond to it. Some die and some develop co-morbidity, like secondary cancers or diseases such as polymyositis. All that for 4-6 weeks in the hospital and a $500,000 price tag. Makes you think twice about it. If I were at Atlantic City I wouldn’t gamble with odds like that. Drs. ambulance chase cancer patients and look for opportunities to treat them. In the past year alone I’ve been told I had prostate, colon and thyroid cancer. Proved them wrong on all counts. You have to be your own advocate or they will cut you up into little pieces. These are medical used car salesmen looking for new income streams to pay off an expensive Tesla or to finance an exotic vacation.

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Accepted Answer

The decision about CAR-T therapy is deeply personal and weighs heavily on many patients facing similar treatment crossroads. The concerns about risks, recovery time, and response rates are completely understandable given past medical experiences. Many community members find it helpful to discuss these complex decisions with their oncology team, seek second opinions, and connect with others who have faced similar choices to gather different perspectives before moving forward.

3+ patients found this helpful

Community Member

3 months ago

Hi Robert, So sorry to hear about your bad experiences. I had CAR-T cell infusion in March and only had one night of a fever and was treated for that. I’m feeling great and after a few restrictions I do anything I feel up to. Yes it is an expensive treatment but good insurance pays for it. I did not pay anything. It is important to be your own advocate. Be well with whatever you decide. Cheryl

Community Member

2 months ago

Robert! Boy! You and I need to talk. I have one of the best docs in the world. I’ve never had to “doctor shop” as I was lucky. He said he could keep me alive for 8 to 12 years. Now in year 10, I Am in pretty fair shape at 70. Cannabis legal where you are? They have THC with CBD and such for nausea and pain. Cut them in half to scope it out first. They say So CA is the best place to be if you are “old and sick”. If you are in a state where it’s illegal, Tommy Chong sells gummies without THC & legal everywhere. Google him up and ask for my assistant, Erica. Cancer patients get discounts.

Community Member

2 months ago

PS, Robert. I’m a Vet too. Did you see “Good Morning Vietnam”? That’s what I did in the Army. They denied me for Agent Orange giving me MM.

Community Member

2 months ago

Community Member

a month ago

Yes, by all means be your own advocate, cause no one is going to do it for you so definitely be your own. Also use my own stem cells. They wash all the cancer out and put the clean stem cells back in my system so far it has worked for me well, I did for seven months and then I came out of remission. I’m back into activeChemo what I’m doing buying injection now I’m gonna keep you in my prayers hanging in there.

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Should I get CAR-T therapy for myeloma after 12 years?

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