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Real members of MyLymphomaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

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I Started Lunsumio Immunotherapy On Jan. 3rd. Two Days After Receiving I Had Burning Eyes And Couldn’t See.

A MyLymphomaTeam Member asked a question 💭
West Chester, PA

I have relapsed FL, then B cell. This is my 1st question so please bear what me if I am not doing it properly. Has anyone had reactions from this drug?

Has Anyone Refused Treatment. Opted For Palliative Care And A Assisted Death?

A MyLymphomaTeam Member asked a question 💭
Santa Cruz, CA

Where are the stats on how long you live without treatment ? How many people out of a Drs client base decide NOT to do Chemo?
where is info on how many people decide not to treat or give up on treatment. Anyone think treatment is worse the disease ?
Some NHL's are not curable. I want to know how those people deal with their life, Hospice and pain control.
Anyone besides me considering not treating.
I can't be the only one.

A MyLymphomaTeam Member

Es ist schön das die Forschung so weit ist und Lymphome zurückgedrängt werden kann und uns noch ein schönes Leben emoglicht

Diagnosed With MCL 3 Years Ago, On Watch And Wait.

A MyLymphomaTeam Member asked a question 💭
Boston, MA

Anyone else with MCL on watch and wait for MCL? Wondering at what point would treatment start for anyone that was on watch and wait. Not sure I'm doing the right thing.

A MyLymphomaTeam Member

Trust your own instincts

Rituxamab Maintenance Therapy - Do Or Don't???

A MyLymphomaTeam Member asked a question 💭
Little Rock, AR

Hello Group - My name is Pam, 63 year old retired nurse. I just finished 6 months of Bendemustine/Rituxamab (BR) treatment for follicular lymphoma stage 4. The majority of providers are recommending a 2 year - every 2 month infusion of Rituxamab. I've also heard some LLS physicians state they no longer use this protocol due to weakening of the immune system - with COVID and all still active would increase our chances of getting it. Anyone have advise/opinion on this? I personally don't feel… read more

A MyLymphomaTeam Member

So sorry about your circumstances. Mine are somewhat similar. I got COVID and diagnosed with lymphoma in the same week - Oct. 2021. I kept telling the oncologist I just had COVID but they started me… read more

Any Advice On How To Tell Close Friends & Family?

A MyLymphomaTeam Member asked a question 💭
Chicago, IL

I'm 45yrs old & was diagnosed with SMZL a couple weeks ago. My partner & I have an appointment with my Dr on 1/9 to discuss next steps, etc. We have decided to not tell our children (16yr old twins, 14 & 11) until after meeting with the doctor. I'm sure they will have a ton of questions I just don't have the answers to yet. Plus, I didn't want it to affect their holidays. We have also not told any family for the same reason. I have only told two of my best friends.

Any advice on how to share… read more

A MyLymphomaTeam Member

I found that it helped me to get over my initial terror before I started sharing it. It's challenging enough to deal with my own reactions first before dealing with others reactions on top of that. It… read more

Can Someone Explain The "watch And Wait" Reasoning For Treatment?

A MyLymphomaTeam Member asked a question 💭
Chicago, IL

I was just diagnosed a week ago and don't meet with my doctor to discuss next steps until after the new year. He mentioned possibly doing "watch and wait" method and I've read a lot that backs that up, which really surprises me. Why would you wait until things got worse to pursue any type of treatment?

A MyLymphomaTeam Member

Waiting every 3 months for my blood levels to get back to normal.

Do Any Of You Suffer With Extreme Fatigue And If So, How Do You Cope?

A MyLymphomaTeam Member asked a question 💭
Belpre, OH
A MyLymphomaTeam Member

Help you take a nap ?????

Has Anyone Had Methotrexate Prophylactics For Central Nervous System And Brain? Can You Share Your Experience? Thanks In Advance

A MyLymphomaTeam Member asked a question 💭
Plano, TX
A MyLymphomaTeam Member

Thank you Vonnie