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@mena2020

Thank you so much for responding ...I am from Connecticut and I recently went to see a doctor at Mayo Clinic in Jacksonville FL. I am learning many new things about my condition. It seems that treatment protocols are different in different states. I was ordered a bone Marrow test and a Pet scan at the Mayo clinic..CT has refused previously to do bone marrow. I have severe allergies and terrified to try drugs. I am seeking for Car T cell therapy . Never heard about the Mimicking diet FMD...I am not getting any treatments yet but getting closer as infections are showing up every month. I am trying to get informed and prepared to get the right treatment for me. My doctor in CT says that I wont get Car T cell therapy unless I fail other drugs therapies. CT isn't much advanced , their focus is in the drugs , same as Boston . They are developing customized drugs, but I find those drugs are pretty scary too. I read about Imbruvica and I dont like the fact that their protocols require doctors to start at higher dose. With my sensitivities it could kill me. Also the drug could cause cells to travel and cancer could develop in other areas. It could cause brain bleeding etc...I find the drug is pretty scary and the doctor refused to start me in a lower dose . He wanted one pill with 420 mg. I am sensitive even to over the counter meds,antibiotics ,dyes, foods, histamine and many foods ..My allergies & sensitivities are pretty bad. So I have to be careful...Many Blessing for you too!

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Replies to "Thank you so much for responding ...I am from Connecticut and I recently went to see..."

My mother is also sensitive to drugs, she is the genotype for Gilbert's syndrome and perhaps this is the cause. I am also HLA-B27 positive as well as at least heterozygous for GS, all of which means that I too am sensitive to various things! Sounds like you are really learning about your condition. For me and my family it's very scary but we are taking it day by day.