Newly diagnosed lymphoma

[KarenL1]

I am newly diagnosed (last week, April 12/18) with extra nodal marginal zone lymphoma - had axillary node dissection and see oncologist next week about treatment. Started with sharp left breast pain, noticed enlarged underarm nodes. I am devastated with this news. I am 70. Wonder what treatments have been tried by members with this diagnosis?

[Kvick]

Hi Karen,

I am sorry to hear of your diagnosis. You are in for a difficult climb....but you can overcome this disease.

I was diagnosed with T-cell non-hodgkins Lymphoma over 2 years ago. I've had 24 rounds of Choep Chemotherapy and an Auto Stem Cell Transplant. I was in good health prior to my symptoms. My symptoms included swollen feet, fever, arthritis and enlarged lymph nodes throughout my body.I was 57 years old at the time. I had a lymph node excised for my diagnosis as well.

The good news is that I have been CANCER FREE for 2 years. There is HOPE.....don't ever forget this. Surround yourself with friends family, and pets. Find The best doctors by doing some research online and in your area. Be sure to get a second opinion. My first doctor was awful and didn't even examine me. I looked for experts in the field and found Dr. Advanti at Stanford. She was amazing.

Sending good juju and positive energy your way. x0x0x0 kim

[KarenL1 in reply to Kvick]

Thanks for your reply. Think mine is B cell extra nodal marginal lymphoma, not sure how it differs from T cell. Will have to Google. Will see how appointment goes with first visit oncologist this coming week, nervous. My symptoms were pain in left breast & enlarged underarm lymph nodes. Family doctor thought it was nothing. I wish.

[Golfguy]

In am currently 69. Was diagnosed with extranodal marginal zone lymphoma in April of 2015. Was stage 4. Was given 6 cycles of BR ( Bendemustine and Rituxan). This was followed with Rituxan once every 3 months for 8 cycles. I was in remission at the end. Between first and second cycle of BR nodules disappeared. I am still nodule free today that i know of. Doctor wants me to have scans but am concerned about so much radiation exposure. I feel i will know when it comes back and don’t feel early detection at this point has any affect on outcome

[KarenL1 in reply to Golfguy]

Hey Golfguy, This month, 1 year since diagnosis we share, I've had biopsies of 2 lumps/nodules, breast and back & got diagnosis today of back lump near my neck being lymphoma. Will hear next week whether I need chemo. How did you tolerate the Rituxan/Bendamustine? Want to hear bad with good. Think it will be happening soon. I wouldn't be concerned about radiation, least of our worries right? I am in Brampton, Canada, you? Fun times........

[KarenL1 in reply to KarenL1]

I am 71 years old.

[Golfguy in reply to KarenL1]

I have to say I was anxious before my first treatment. I was fine until later that night. I got sick and felt better afterwards. From then on I would take anti nausea medicine as a precaution. I did have a reaction to the Rituxan so i was given a cocktail of Tylenol, predisone and allergy medicine before my infusions. Also they took 8 hours to give me the whole infusion. As time went on I was able to decrease the time to 2 hours. I have to say that it took me a week after the BR treatments to start feeling normal again. This happened every month for 6 months. Once I went to the Rituxan follow up I always felt pretty good

[KarenL1 in reply to Golfguy]

Thanks for your input re Rituxan. I picked up my pathology report today and it states I have an unusual lymphoma. The lump on my middle back is just below my neck. I'll take Gravol pre chemo for sure, if I need chemo, find out next week. Take care.

[Golfguy in reply to KarenL1]

Good luck