Non Hodgkin's Lymphoma- Watch & Wait Approach
I would like to meet others who were diagnosed with a lymphoma and are on watch and wait treatment.
I have been on a watch and wait lymphoma watch now for 2 1/2 years. I currently get blood work done every 6 months and a CT Scan once a year.
Has or is anyone else having the cancer monitored like this? Are there people who lived their whole life without ever getting treated for lymphoma?
Would love if we could share our progress on here.
Jackie
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Hi ,
Just a quick update of my situation. My follicular lymphoma initially showed up on my nose , and after 18 radiation sessions, was gone . Went few yrs with no significant events, but at my last CT they found a lung nodule big enough to “ scream “ cancer . So last December I went for surgery. It was stage O and also they removed some lymph nodes with no evidence of cancer . Fingers crossed. Thank you
Welcome to Connect, @categ. This is a great place to meet others who share the same diagnosis. Here are just a few of the members who also have follicular lymphoma such as @valandsheri @quimbie @puddknocker @traceyt @vonbaron36 @bogie60 @lee59 @susanlim @caracello22.
Some members have been on ‘watchful waiting’ while others have received treatments. Because this is generally a slowly developing cancer some people can go many years before requiring any intervention.
I’m also popping in a couple links to articles about follicular lymphoma that you might find helpful.
~Healthline.com:
https://www.healthline.com/health/follicular-lymphoma#diagnosis
~Mayo Clinic:
https://www.mayoclinic.org/diseases-conditions/non-hodgkins-lymphoma/symptoms-causes/syc-20375680
Were you having any symptoms when you were diagnosed or was this discovered with routine blood work?
I have been told it is a wait and watch disease. However I soon will be 75 and that may be part of the decision. I hpe not!
I was diagnosed with follicular lymphoma 1 year ago. I am not receiving treat because it is a slow growing cancer.
Anyone else have any experience with this disease?
Hello, @rola. We all need a lifeline sometimes, don’t we? It just seems to be in our human nature to ‘think the worst’ with some of the medical diagnoses we get. Been there myself! 😉 It can make all the difference hearing from people who have gone through the same issues to give you some positive information and encouragement. I’m so happy you found the reply I wrote to @dani349 helpful for you as well!
From what I understand, at Stage 1, usually a patient is still considered low risk and no treatment is necessary. What did your hematologist have to say about your change?
So beautifully written, thank you, it reached me today! Just came back from Moffit yesterday and my mind was spinning. My CLL is stagc1 was 0.
@traceyt, I believe fellow member @jeremy17 was diagnosed with follicular lymphoma with bone lesions.
You might also be interested in these 2 related discussions:
- Follicular Lymphoma: looking to connect with others
https://connect.mayoclinic.org/discussion/follicular-lymphoma-at-age-44/
- Starting Bendamustine and Rituxin for Follicular Lymphoma
https://connect.mayoclinic.org/discussion/starting-bendamustine-and-rituxin-for-follicular-lymphoma/
Hi Colleen,
Thank you for the welcome!
Yes. Sorry for my shorthand. FL stands for Follicular Lymphoma, which normally does not require treatment for years.
My recommended chemo drugs are Bendamustine and Rituximab for 6 cycles.
I’m curious if any other patients in this group have bony lesions but otherwise asymptomatic.
Many thanks!
Welcome @traceyt. Great to hear that your labs are all good. To help me connect you with others, can you confirm - does FL stand for follicular lymphoma? What chemo regimen is being recommended for you?
Hello,
I am new to this group and so appreciate what others have shared. I am in a quandary. I was diagnosed with FL 3 months ago due to one enlarged lymph node below my left jaw, otherwise, I am completely asymptomatic. Two needle biopsies confirmed lymphoma cells and the node excision confirmed FL.
My oncologist suggested Wait and Watch until my PET scan, follow-up bone scans and MRIs show multiple bony lesions in my spine, hips and pelvis. Again, I have no pain anywhere! However, due to the lesions chemo is recommended to hopefully put me in remission. Like other comments above, my team describes this as a chronic condition that will always need watching and is not terminal.
I am curious if any others have bony lesions with FL who decided to continue to Wait and Watch?
BTW, my labs are all good, including calcium and creatine, but they started giving me calcium injections last month to reduce fracture risk.
Thank you, Everyone!