Non Hodgkin's Lymphoma- Watch & Wait Approach

I’m so happy you joined the forum. I think you’ll find we’re a big family of support, encouragement and hope. So don’t hesitate to pop into any conversation! I’m one of the mentors for the Blood Cancer & Disorders group, along with Bone Marrow Transplants. I’ve had my own experience with an aggressive form of leukemia 5 years ago. Better living through chemistry, I’m here, cancer free and it’s my goal to help others realize there is hope after an unnerving diagnosis.

I think you’ll find your way around the forum fairly quickly. But take your time and explore the different groups, check out the Spotlight feature where you can learn more about some of the members, and there are health blogs, etc..

One way to find this particular discussion again would be to bookmark it. If you look at the lower right hand corner of this reply, you’ll see 3 dots …
Click there and the menu will show an option for Bookmark! Click bookmark and this reply will be saved. Then when you sign in again, you’ll be able to retrieve this page.

To do that, you have 2 options. Easy peasy is clicking on the Avatar (photo silhouette next to your @name on the left). That will take you to your personal page where you can view your profile. Click View Profile and the option for bookmarks will show.

Option two: In the upper right hand corner of this forum page, you’ll see a little ‘person’ icon. Click there and it will take you to a menu that says, profile! Click profile and it will take you to your personal page which will show your bookmarks.
And of course, the best way is to not wait until September to chat again. LOL. I’m on here many times throughout the day, along with so many other members who will toss you a lifeline. That’s the beauty of this unique forum.
To make sure I’m personally tagged in a reply, simply type in @loribmt ☺️

I love your positive ‘glass half full’ attitude. I’m right there with you! I refuse to worry about ‘what ifs’ because thoughts like those are just stressors and rob us of precious time. What are some of your favorite activities?

@loribmt Thank you for the navigation info. Today is my first day on this site, and I needed some pointers.

I was recently diagnosed with Follicular Lymphoma Grade 2/Stage 3. My doctor put me on “Watch and Wait” for the first three mos., which my next scan and blood work will be in September. I know I’m new to this and have much to learn. As you all know, the “Watch and Wait” plan was difficult to understand and accept at first. I’m doing better with it now and, of course, will know more in September. My biggest concern is it progressing from Stage 3 to Stage 4 (which would involve an organ or my bones) while we are “waiting” ! I do not have major symptoms yet. Can anyone give me some peace with this?

When finally diagnosed with Follicular Lymphoma from a small lump on my throat it was wait and see. Had scans regularly. The doctor said it is a slow-growing tumor in my chest we will watch it. I had bone marrow test done and it was ok. This was in 2005. I had to wait for 6 years before I needed chemo. That is a long wait with Dr. visits and the worry and concern. I had chemo for over 2 years and finished last chemo at end of 2011. I see the Dr. 2 X a year for exam and had cat scan every year until this year the Dr. said my scans are not showing anything that needs to be addressed but they continue the blood work every 6 months. You have to stay positive and take care of yourself with rest and good food and family and do not dwell on what could be just concentrate on positive outcome. Sorry you have to face this. I can understand. I had both of my knees replaced this year and doing just fine. I will be 81 in couple of weeks and doing ok. Take each day as it comes with prayer and positive thoughts.

Welcome to Connect, @katharine56. Having to ‘watch and wait’ after a diagnosis can feel like you’re waiting for the proverbial ‘other shoe to drop’. The inaction feels contrary to your thoughts of ‘let’s get this taken care of!’, right? Follicular lymphoma is often slow to develop. So you’ve likely had this condition for some time.
Your doctor has staged and graded the level of involvement and is using those results to determine if and when they’d suggest starting treatment. Some patients without symptoms can go many years without treatment. The good news is that there are several positive treatment options available for follicular lymphoma.

Knowledge is power but the internet can be full sites that may not be very productive or helpful. So here are a few articles from credible sources which will give you some useful information about the disease and potential treatment options.
~uptodate.com:
https://www.uptodate.com/contents/follicular-lymphoma-in-adults-beyond-the-basics
~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
I’d also like to tag some of the members in Connect who also were diagnosed with FL so they can offer you some suggestions and discuss their experiences with you…here are just a few: @valandsheri @quimbie @puddknocker @traceyt @vonbaron36 @bogie60 @lee59 @susanlim

Wishing you only good news on your upcoming appointment in September. Will you please let me know what you find out?

@loribmt Hi there… was just looking through some notes and saw you asked me to let you know how my September
3 mo. scans went. Everything appears stable, no significant growth at this time. We would have been comfortable waiting 6 mos for my next scan, but some of my bloodwork came back low. My WBC was low, also my monocyte and lymphocyte numbers were low. So he’s having me come back in a month to re-check those numbers. Hopefully they go back up. I’m feeling good other than I have discomfort quite often in my neck when those affected nodes get really swollen. (They go up and down as most know!) Anyway, getting more use to this being my journey and learning as I go! One step at a time! Take care… catch you down the road!
Kathy

Thank you for your honesty and strength and courage. My puny little Splenic Marginal NHL is a little issue compared to all that you have faced. Prayers for you, regardless @sally2022

Hi Kathy! Thank you for the positive update! It’s always a relief when those scans are ‘unremarkable’ isn’t it? Been there myself many a time! ☺️

Finger’s crossed your bloodwork bounces back to normal range too! Just in time to head for Florida. I noticed in your bio you split your time between Wisconsin and Florida. We do too. With the cold weather today and the fireplace on, my mind started to wander to the Gulf. 😅. When do you leave?

My platelets started to drop end 2019. After lab work in 2021, doctor was concerned and January 2022, I had a bone marrow biopsy and aspiration and CT scan which confirmed I had non Hodgkins low grade B cell Lymphoma/Leukemia. I have blood work done every 6 months but my oncologist did not want to put me through a yearly CT scan as I am still feeling OK in myself. I winter in Florida and go back to Minnesota where I see another oncologist who may want me to have that CT scan. I don’t like the radiation a CT scan gives off either but understand why they need to get done. I am on a watch and wait. Keep in touch please.