Follicular Lymphoma age 74-what to expect?
I was in a car accident in February and a CT scan revealed a lesion on my pelvic sidewall. The pet scan done at Mayo discovered 3 more. On the tibia, t-12 spine and armpit. Biopsy of the pelvic sidewall confirmed follicular lymphoma. I start chemo treatment next week. I would like to know how you felt after treatment say on day 5. Did you improve and feel better as days passed until your next cycle? Thank you, Joanie Kiser
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Hi Joanie. Welcome to Mayo Connect. My goodness, I’m glad you were ok after that car accident. Though it may have been a positive event which allowed for the early discovery of your follicular lymphoma (FL)! I’m sure this all came out of the blue for you. But FL generally responds well to treatment. The key is to get started.
It looks like next week you begin your treatments. I’m not sure what you’ll be receiving but most common treatment is with Bendamustine and Rituximab.
There are several members in Connect who have shared their experiences with FL. One in particular is this one posted a few years ago, but still relevant…by @valandsheri when her husband had FL and started his chemo.
~Starting Bendamustine and Rituxin for Follicular Lymphoma
https://connect.mayoclinic.org/discussion/starting-bendamustine-and-rituxin-for-follicular-lymphoma/
There are many other discussions with members in the results of this search:
https://connect.mayoclinic.org/search/
Your first appointment at the infusion center may be a lengthy one. So plan accordingly by taking along a snack or lunch. Entertainment like a book, ipad, extension cord and charger, water. You’ll have an iv in your arm but you’ll be mobile. You can get up and use the bathroom, take walks, etc. the IV cart unplugs and follows you everywhere. ☺️
If you do receive Rituximab the drip rate for that medication can be slow for the initial treatment. It is very common for patients to have a little reaction to that med the first time while they are at the infusion center! There is no need for anxiety as it is anticipated by the staff and they are ready with steroids and Benadryl that gets injected right into the IV along with the medication. But they will then slow the rate down so it can take a couple hours to empty the bag. After that, subsequent rounds usually go much faster.
I often had my husband drop me off and pick me up when finished so he didn’t have to wait for me. I was recovering from another issue so wasn’t able to drive for several months. Most people can drive home afterwards.
Do you live near the hospital or clinic where you’ll have the infusion?
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4 ReactionsHi Joanie - welcome! Hi Lori!!! Sending you a hug ❤️
Val, my husband, was diagnosed with Follicular lymphoma after an accident, as well. We thank our dog often as it was because of him that Val fell down a short ravine getting Taz back in to our Jeep. He wrenched is back and after a rather short process of testing Mayo in Phoenix diagnosed it. He was stage 4 - his PetCT lit up like a Christmas Tree.
Val did 5 rounds of Rituxan and Bendamustine before showing no sign of disease on his scan! That was May of 2023 and as of April 2026 he still is cancer free. We are so grateful!
In answer to your question: I can’t say that specifically on day five after each treatment he felt bad. It was more of a cumulative effect from month to month. He felt pretty good the first two rounds. By the third month he was starting to get fatigued. Fatigue was really his only side effect. He never had any nausea or other side effects. He drove to annd from each treatment ( an hour and a half each way) and still worked around home. Lots of resting too. He still struggles with fatigue but we attribute it to his sleep apnea and chronic insomnia not the FL treatment .
Lori was an angel as we navigated Val’s treatment. Actually, Val was very calm and knew he needed to take care of business. It was me that was in a panic! She is a wealth of information and very special!!
Please keep us posted and ask away with any questions.
Sending you a hug and good thoughts!!
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4 ReactionsHi, Joanie,
You’ve been through so much with your accident and diagnosis and now you move on with lots of questions - that’s good. Keep searching.
My husband was diagnosed with FL ten years ago, had two years of Retuxin and ???, with fatigue as the worst side effect. Next Sunday we’ll celebrate his 98th birthday! He’s in good health and good spirits, goes to the gym 3-4 times a week, driving himself.
There are many good things ahead for you after this “bump in the road.” We pray you’ll do as well as he did.
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3 ReactionsThank you Lori, Sheri and dunewalker,
I really appreciate your comments, stories and support! Sorry about the confusing comment about how someone might feel after treatment 5 days and on. For some reason I thought the affects of Rituxun and Bendamustine were ongoing. So happy that everyone seems to do so good on this treatment. I was also told my PET scan lit up and that they may need to add
R-CHOP.
I am glad the car accident revealed the lesion. But it has been a rough time. In March of 2024 I had lung cancer and had left lower lung removed. 5 months later I had breast cancer and had a lumpectomy. Almost two years to the day I got the FL diagnosis. At the time of the breast cancer I was having hot flashes at 72? The oncologist at the time didn't feel these were related to the breast cancer. I wonder now if it is the FL causing these. I am normally a hot sweaty person (hyperhidrosis) and that complicates this symptom. But it is different and definitely hot flashes. Yuck. I also am itchy at times and mostly at night. Yikes. I also had been occasionally having strong tiredness that would come on suddenly. Weird. Has anyone experienced these kind of symptoms prior to treatment? Has anyone had hair loss? Weight loss?
Today is my chemo education video class and I am sure questions will be answered.
Thank you again for your support!
Joanie
@joaniepnw
Val had weight loss which started a couple of years before his diagnosis. He just thought he wasn’t eating as many treats. As he said “who knew?”.