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Follicular Lymphoma: looking to connect with others
Hi everyone, I'm new to this group. I just received my diagnosis 3 days ago and am a bit lost about how to move forward. I have so many questions and concerns that I don't know where to start. My doctor didn't actually say what stage my disease is at, but I do know I have a tumor in my neck and another one in my groin, so I guess stage 3? I read my CT scan report and noticed it says something about what appears to be a 4cm cystic mass, possibly a lymphangioma, in front of my psoas muscle. My doctor didn't mention anything about that, but I'm wondering if I should be doing something to try to get rid of it.
My doctor seemed to think that since I'm so low risk, I should just go about life as usual. Well, my life as usual includes raising a 2 year old who is now constantly asking me if I'm ok. Do any of you have toddlers? How do you discuss this with them? Until this point, my husband and I were trying for one more child. As much as I hate to completely shelve that idea, I'm thinking we need to.
Thanks for reading. Advice would be appreciated, but messages from those who can relate will also be appreciated.
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Thank you so much will keep you dated
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1 ReactionHi @jacksonluc I’m not sure it’s necessary to go to your lung specialist’s office, if you’ve already sent a message. This is more out of courtesy to keep your healthcare team updated on your health.
Since your oncologist already knows your previous health history, if there was any issue they’d have mentioned it to you. It’s important for you to start your treatment and since you already have an infusion appointment it’s better to keep that.
Wishing you well with your treatment! Let me know how that first session goes, ok? Remember to take along something to occupy your time. ☺️
I sent my lung doctor an email last Friday and it takes some time a while to get back with me so I don’t know if I should wait for my first treatment to hear from him or should I move on? I’m thinking about maybe going to straight to the office to get an answer. From my lung doctor
Hi @jacksonluc A quick check with the drug interaction checker on Drugs.com didn’t show any issues between Rituximab and Stiolto respimat (olodaterol / tiotropium).
But you may still want to touch base with your lung doctor just to keep them updated with your new diagnosis and the treatment you’ll be having.
Yes inhaler call
Stiolto respimat
Hi @jacksonluc Welcome to Mayo Connect. Seeing that you’re starting treatment for your newly diagnosed Follicualar Lymphoma, it wouldn’t be a bad idea to mention both the diagnosis and the treatment plan with your lung specialist. Usually that’s an easy phone call to speak with the nurse practitioner or the doctor’s RN. They can check with the doctor to see if there are any concerns such as interfering with medications you’re currently taking and the like.
As far as the Rituximab, I can give you a little tutorial on those infusions. I’ve had several rounds and for me, it was a miracle drug!
The infusion, especially the first session, may take several hours. The medication is given via an IV in your arm. The solution is dripped slowly to help avoid reactions. Most everyone has some type of reaction during treatment. So don’t be alarmed. The infusion nurses have seen this a million times and are prepared with Benadryl and steroids, which would be injected into the IV. They may also give you Tylenol. Usually within minutes the reaction has passed.
After the first session most people have no further reactions and the drip rate is increased, for shorter infusion time.
So, take along a bag of entertainment and food! ☺️ Items like water, snacks, a lunch if you’d like, book, crossword puzzles, phone, ipad or tablet, chargers and a small extension cord if you need it for your chargers.
The IV will be portable so you’re not stuck sitting in a chair for hours. You can walk around and use the restroom.
Most infusion centers have private rooms with TVs for each patient. But some have a common room with comfy chairs where you can sit and talk with others. Usually there is a nice snack counter with coffee, tea and refreshments if you don’t bring your own.
Are you currently taking medications for your COPD?
I am 72 years old and just got diagnosed of
follicular lymphoma grade 3A
Stage 1 PET scan was clear. The scan was clear and no cancer in the bones. It’s only in my lymph node on my neck. So the treatment I chose was. Rituxan (rituximab) is an intravenous immunotherapy
And my first treatment starts next week, but I’d like to know if anyone knows I also have COPD and sleep apnea. If I should clear this with my lung doctor before I start treatment any information would be appreciated. Thank you so much.
I was diagnosed with
follicular lymphoma grade 3A
On my neck right side lymph nose everything else is pretty much clear is just in that spot but I do have COPD sleep apnea and I’m just wondering if I should clear with my lung doctor before I start the treatment does anyone know?
With Rituxan treatment
Welcome, @galestorm. I moved your post about living with follicular lymphoma to connect you with @caracello22, dunewalker @joaniepnw @valandsheri and many others in this discussion:
- Follicular Lymphoma: looking to connect with others https://connect.mayoclinic.org/discussion/follicular-lymphoma-at-age-44/
See more in the group Search results for Follicular Lymphoma https://connect.mayoclinic.org/search/
Gale, what treatments have you had? How are you doing now, 3 years since diagnosis?
I was diagnosed with Follicular lymphoma in 2023, i am now 59 yo female, looking for support.
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