Non Hodgkin's Lymphoma- Watch & Wait Approach

Posted by Jackie, Alumna Mentor @travelgirl, Jun 15, 2018

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

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

@emmiet

Thank you, @nschlacht, for your encouraging words. What types of exercises are you doing during treatment? I found walking in parks and places with lots of greenery helpful.

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Faith is most important and a positive outlook as hard as it is at times to keep that it is imperative to have. A positive attitude is half the battle. I am having to work hard this am to keep it. Just tired this am and have a list of things I need or want to get done this month. I am cat sitting for a friend until next week and my cat is miffed that another cat is in the house. Yesterday was so busy think just tired and have to catch up a little today. I will feel better when I get moving and start the day.

Well I just hit the wrong key and think my incomplete reply is out there. LOL. Oh well, no harm done except you may think what the heck. HA. All is well just keep the positive vibe and happy talk. God is in control.

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@nschlacht

Im in the middle of RCHOP for transformed follicular lymphoma and agree with the proactive approach of diet and exercise. You’ve got this! Looking for a tribe too.

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@nschlacht … Hi, my name is Kathy. I was diagnosed last May with Follicular Lymphoma Stage 3. Had a 2nd biopsy at Mayo when my doctor there was concerned that I may have transformed due to the uptake on a couple of my nodes being “hotter” than they see with Folicular. The good news is I hadn’t transformed. Can I ask for a little of your history on how long you had Follicular before it transformed… Had you received any treatment prior to transformation… What were your symptoms or how did they find that you had transformed. ?? Being Stage 3/Grade 2… I am concerned about transformation. I am on “Watch & Wait” for now. Thank you… and I hope you are doing well. God Bless ❤️

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@emmiet

Thank you, @nschlacht, for your encouraging words. What types of exercises are you doing during treatment? I found walking in parks and places with lots of greenery helpful.

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Hi there. Agree with the geeenery and nature but Im living in an apartment close to Mayo in Jax so not a lot of nature. I went on a brisk walk on Sunday but I think I may have over done it! Very sore!
Before cancer diagnosis I biked , hiked, swam and walked so can’t wait for this to be over.

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@nschlacht

Im in the middle of RCHOP for transformed follicular lymphoma and agree with the proactive approach of diet and exercise. You’ve got this! Looking for a tribe too.

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Thank you, @nschlacht, for your encouraging words. What types of exercises are you doing during treatment? I found walking in parks and places with lots of greenery helpful.

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Thank you for sharing your experience with me, @quimbie. It's great to know that other folks are thriving.

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@emmiet

My oncologist and I discussed medical options if needed. He also told me when I was first diagnosed in 2021 that the marginal zone is considered chronic and would have considered watch & wait if I hadn't had DLBLC in my stomach lining (diffused large b cell lymphoma).

I'm in excellent health and am almost at the point where I've healed from the effects of chemo—backache, hair loss, and minor numbness of the fingertips. I prefer to reduce medical intervention as much as possible and focus on diet, exercise, and mental wellness.

So, I'm seeking my tribe of folks with similar experiences who take a proactive approach.

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Im in the middle of RCHOP for transformed follicular lymphoma and agree with the proactive approach of diet and exercise. You’ve got this! Looking for a tribe too.

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@katharine56

@quimbie Thank you so much for your reply. It is so helpful hearing of other’s experiences. When you say you had chemo for over 2 years, do you mean you were treated a number of times? I am so glad for you that you have had been in remission for a number of good years!! My biggest fear (when I allow myself to think about it) is that it may transform into LBCL while I am in the “Watch & Wait”. By the time it shows with symptoms or bloodwork changes it will have already transformed, which is more serious and a much harsher treatment needed. I’m doing my best to rest in peace with it and learn to live with it…. Most of the time I do very well in not letting it consume me. Thanks again.

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I had chemo and the drugs for just over 9 months then had chemo one day a month for the next year and a half. Labs of course. Had the bone marrow test and confirmed that it had entered the bones but look at me now. Prayer and positive belief that all is well and I am doing great. I had both knees replaced this year as had bone on bone and knees were really bad. I wore them out over the years and here I am doing fine and happy I had it done as can walk so much better. I was limping and used a cane at times and now all is well. I just turned 81 this month and feel Blessed. I pray all is well with you. Keep the faith.

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@loribmt

Hi @emmiet. I’m sure you’re a little anxious about finding even a minor recurrence of your MZL on scans. We all hope for a permanent remission after going through chemo. Fortunately marginal zone lymphoma tends to be a slowly developing type of cancer in the lymph nodes. So jumping right back into treatment isn’t always warranted. Did your doctor discuss a potential for another round of chemo or immuno therapy?

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My oncologist and I discussed medical options if needed. He also told me when I was first diagnosed in 2021 that the marginal zone is considered chronic and would have considered watch & wait if I hadn't had DLBLC in my stomach lining (diffused large b cell lymphoma).

I'm in excellent health and am almost at the point where I've healed from the effects of chemo—backache, hair loss, and minor numbness of the fingertips. I prefer to reduce medical intervention as much as possible and focus on diet, exercise, and mental wellness.

So, I'm seeking my tribe of folks with similar experiences who take a proactive approach.

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@emmiet

@loribmt Somehow, I missed this message. Yes. I have been diagnosed with marginal zone lymphoma and am currently in a watch-and-wait protocol. I was diagnosed in 2021 and did six rounds of immuno/chemotherapy that ended in March of 2022.

My April and July 2024 scans showed minor recurrence in four lymph nodes. Therefore, I'm in watch and wait.

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Hi @emmiet. I’m sure you’re a little anxious about finding even a minor recurrence of your MZL on scans. We all hope for a permanent remission after going through chemo. Fortunately marginal zone lymphoma tends to be a slowly developing type of cancer in the lymph nodes. So jumping right back into treatment isn’t always warranted. Did your doctor discuss a potential for another round of chemo or immuno therapy?

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@loribmt

Welcome to Connect, @emmiet! Happy to help you find your way around the forum. ☺️
You popped into the non Hodgkin’s Lymphoma discussion. Have you been diagnosed with a lymphoma or blood cancer?

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@loribmt Somehow, I missed this message. Yes. I have been diagnosed with marginal zone lymphoma and am currently in a watch-and-wait protocol. I was diagnosed in 2021 and did six rounds of immuno/chemotherapy that ended in March of 2022.

My April and July 2024 scans showed minor recurrence in four lymph nodes. Therefore, I'm in watch and wait.

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