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A MyLymphomaTeam Member asked a question 💭
Melbourne, AU
May 24, 2024
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Answer Summary

Members shared deeply personal stories about living with lymphoma, with recurrence timelines ranging from three years to over fifteen years,... Read more

Members shared deeply personal stories about living with lymphoma, with recurrence timelines ranging from three years to over fifteen years, and many expressing gratitude for extended remissions despite being told there is no final cure. Several members described their treatment experiences with Rituxan and R-hyper CVAD, the financial strain of costly infusions even with Medicare, and the physical toll of chemotherapy and radiation, while emphasizing that newer therapies like CAR T-cell treatment and targeted drugs like Calquence offer hope when cancer returns. A recurring theme was choosing faith over fear, focusing on quality of life rather than obsessing over the future, and living each day with gratitude, purpose, and determination to keep fighting no matter how many times the disease reappears.

A MyLymphomaTeam Member

My Oncologist has said: There is no cure but you can slow down process with treatment. Which I have done. Been almost two years! But it can re-appear. I'm 73, so far good. Cannot say I'm in remission. I thought I was! Fee4ling good! So I just don'
I try not to focus on it and live each day grateful to be here.

May 25, 2024
A MyLymphomaTeam Member

I'm two and a half, nearly three years from first diagnosis with Follicular NHL. I did six months of chemo and and nearly two years of retuxan maintenance. Now, I have entered the grace period of several or up to 7 years of remission. I'm in remission because the twice annual PET scan shows that I don't have any active cancer cells. But, of course, with Lymphoma there is no final "cure". But, that's okay because I'm in remission and am doing fine. When the cancer returns someday, there are many other tools in the oncologist's bag to treat the Lymphoma so you can live a nearly normal life. Look up CAR T-cell therapy for one. It's amazing what medical science is doing these days, and research is going on all the time. I'm 81, active and enjoying life. Don't worry about the future, just focus on each step of treatment and trust that you'll be okay. I know I'll always be immune compromised but that's the trade off for the cancer treatments. Blessings on your journey.

May 25, 2024
A MyLymphomaTeam Member

Thanks for stories giving me hope. Am79 with 4 infusions done and 2 to go. Best to you all with the vitality and optimism to persevere.

May 25, 2024
A MyLymphomaTeam Member

I choose not to believe that there is not a cure. I believe there is a cure and I believe if you wait long enough you will see it. You may have to be a warrior for years in between but after that you are going to be cured. Minf over matter. I refuse to die if I can help it. I have to outlive my animals because no one will take them. After that I'm free of God calls me. Maybe a terrible answer but it's my true feelings. It was a long tough haul in the beginning and I was scared but I was so sick. The chemo was bad the radiation was bad and it seem to take forever. But it's been a year and a half so I'm looking forward to the future.

May 25, 2024
A MyLymphomaTeam Member

Mine recurred after 3 yrs, chemo 2nd time, so far good almost 3 yrs again.

May 25, 2024

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