Hello..Hope your husband continues to get better…Can you please tell me which Mayo Clinic location did your husband attend to? I went to Jacksonville once and it did not go so well.
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Hello, I have been diagnosed in 2016 with MBL and after a Lymph nodes biopsy in 2018 they said it is CLL/SLL . I dont have treatment yet but my doctor wants me to start Imbruvica 420 Mg due to symptoms and frequent inflammations. I learned that CLL could be stable but SLL could be manifesting more and not showing in labs as it is in my case. Doctors usually start treatment when symptoms begin causing more limitations, when patients lose weight or experience pain but I am finding out that drugs aren't any easier… I have talked to someone who had the treatment with Imbruvica and she did not tolerate the higher dose. Her doctor had to suspend the medication and treat her with something else for a while. Then he started her with Imbruvica again but 140 Mg which she tolerated better. Her CLL went under remission with the lower dose. She described her tattoos getting red and very sore,, and that she felt very ill with the higher dose. But no one is the same so other people could tolerate a higher dose. My doctor refuses to start me with a lower dose so I refused the drug. Protocols can be an obstacle ,I am very allergic and sensitive and I must be careful with drugs. I am hoping to buy time and see if the Mayo Clinic cancer vaccination gets approved. Seems that some patients under trials went under remission. I hope for better and safer treatments. Meanwhile I try to stay positive , I meditate every day with Dr Joe Dispenza, follow a healthy diet , avoid crowds during Flu season or avoid getting sick by taking precautions. I do wash my veggies well and I eat safe. I learned through other patients experiences. I focus in visualizing myself healthy… Praying for a cure and for safer treatments ! Blessings
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!
My diagnosis is CLL/SLL , Hashimoto and Hypogammaglobulinemia. Having frequent infections. I don’t have any treatment yet because the doctor isn't clear if I should begin or not…but Lymphomas are manifesting more aggressively in my case and inflammation episodes cause scary neurological symptoms. Can anyone tell me how do I qualify for Cart T cell therapy or what is the protocol for it? I have extreme allergies and sensitivities to medicines, and everything. I am afraid to take Imbruvica and since the doctor refuses to start me with a lower dose. I react badly to MRIs contrast and even iodine. I am terrified every time they mention any drugs because I could die from medicines reactions…I need guidance on treatment and which doctor I should see aside from my Hematologist to support the immune deficiency (or suspected plasma deficiency) Where do I get this treatment and if anyone knows a the name of a good doctor ???
I have a similar pattern of symptoms , frequent infections and enlarged lymph nodes and a doctor said I do have Hypogammaglobulinemia. I have suffer for many years and now developed Lymphomas. I knew my immune function was not well but never ever before any doctor suggested that term. I also have been diagnosed with Hashimoto disease and it causes me autoimmune attacks. I would like to know if this Hypogammagobulinemia coud has been caused by the thyroid disease. What doctors do we see for the Hypogammaglobulinemia and if anyone knows where to find a good doctor with that specialty.