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Non Hodgkin's Lymphoma- Watch & Wait Approach

Posted by @travelgirl, Fri, Jun 15 9:12pm

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

Liked by beckyjohnson

REPLY

I have heard of the wait & watch medical plan for indolent lymphoma. From what I gather it is because the side affects of treatment (radiation & chemo) are worse than the symptoms which could go on for decades. The applied theory is benefit V symptoms = health risk. You are not alone.

@beckyjohnson Thank you for answering.
Everyone I know with lymphoma has had treatments. I had no symptons it was actually found on a fluke. I was getting a CT scan for another reason and a few lymph nodes near my aorta were swollen. I let the DR biopsy them and the found the wording a few follicular lymphoma cells in the lymph nodes.
Since that time the Lymph nodes have gone down in size. I have had 7 CT scans and each and every CT scan since the lymph nodes have gone down in size. Which leads me to believe that some Lymphomas lay dormant.
Are there other people where the lymphoma has remained dormant their whole life?
Or is the watch and wait a newer way to asses the disease? Cause I am thinking this disease would be considered a chonic condition instead of a cancer?

Liked by beckyjohnson

@travelgirl

@beckyjohnson Thank you for answering.
Everyone I know with lymphoma has had treatments. I had no symptons it was actually found on a fluke. I was getting a CT scan for another reason and a few lymph nodes near my aorta were swollen. I let the DR biopsy them and the found the wording a few follicular lymphoma cells in the lymph nodes.
Since that time the Lymph nodes have gone down in size. I have had 7 CT scans and each and every CT scan since the lymph nodes have gone down in size. Which leads me to believe that some Lymphomas lay dormant.
Are there other people where the lymphoma has remained dormant their whole life?
Or is the watch and wait a newer way to asses the disease? Cause I am thinking this disease would be considered a chonic condition instead of a cancer?

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I was also having routine testing, an endoscopy because of chronic nausea and weight loss, when a node was found. The biopsy was unremarkable, but the Md insisted to the insurance company that I needed a Pet scan. It showed an egg shaped mass in the small intestine. It was removed with resection of part of the small intestine, and the biopsy showed both indolent follicular and large diffuse lymphoma. So I had surgery. They said I had Stage 1 NHL and recommended chemo, which I did. Now they say I am cured. But I think that if it had only been follicular that they might have suggested the watch and wait. I know it is scary not to have them throw everything they've got at it, but I also hear lots of folks do the more conservative approach. As long as the nodes are shrinking, I would probably watch and wait, too. I hope you contine to do well. gp

I'd like to bring @vonbaron36 into this discussion, who I believe is also on "watch and wait" for non-Hodgkin's lymphoma.

@travelgirl

@beckyjohnson Thank you for answering.
Everyone I know with lymphoma has had treatments. I had no symptons it was actually found on a fluke. I was getting a CT scan for another reason and a few lymph nodes near my aorta were swollen. I let the DR biopsy them and the found the wording a few follicular lymphoma cells in the lymph nodes.
Since that time the Lymph nodes have gone down in size. I have had 7 CT scans and each and every CT scan since the lymph nodes have gone down in size. Which leads me to believe that some Lymphomas lay dormant.
Are there other people where the lymphoma has remained dormant their whole life?
Or is the watch and wait a newer way to asses the disease? Cause I am thinking this disease would be considered a chonic condition instead of a cancer?

Jump to this post

@travelgirl Now I'm curious as to the term chronic because it makes sense being that one's lymph system may be benignly affected for a very long time. I will get back to this after some in depth research.

https://search.medscape.com/search/?q=Chronic%20lymphadenopathy This site has several peer reviewed articles about lymphoproliferative disorders (chronic lymphoma?) considered benign on cases that eventually became malignant

@colleenyoung

I'd like to bring @vonbaron36 into this discussion, who I believe is also on "watch and wait" for non-Hodgkin's lymphoma.

Jump to this post

Three and 1/2 years ago I had a large tumor on my neck and a small one by my groin, both cancerous.I had radiation on both. A pet scan showed no cancer. There was nothing to do but watch and wait to see if and where it would occur again. I knew my follicular lymphoma was incurable at the time. I did not want to just wait until it came back, and with no other options I decided to research other options on my own. I decided to try curcumin. Over three years later and two PET scans and a CT scan last month found no cancer. I know that it can go into remission on its own, but it makes me feel better doing something that might be helpful. Next PET scan next March.

@travelgirl

@beckyjohnson Thank you for answering.
Everyone I know with lymphoma has had treatments. I had no symptons it was actually found on a fluke. I was getting a CT scan for another reason and a few lymph nodes near my aorta were swollen. I let the DR biopsy them and the found the wording a few follicular lymphoma cells in the lymph nodes.
Since that time the Lymph nodes have gone down in size. I have had 7 CT scans and each and every CT scan since the lymph nodes have gone down in size. Which leads me to believe that some Lymphomas lay dormant.
Are there other people where the lymphoma has remained dormant their whole life?
Or is the watch and wait a newer way to asses the disease? Cause I am thinking this disease would be considered a chonic condition instead of a cancer?

Jump to this post

@beckyjohnson I read in a publication called "The Pathologist" that there was a possibly a chance that follicular lymphoma could be reconsidered as a chronic disease instead of a cancer, cause it tends to go into remission or dormat for years.

My family Dr said he has a patient that is has been 20 yrs and no sign of the disease progessing since he was diagnosed.

In the magazine 'The Pathologist" they published a story Called "The Many Faces of Follicular Lymphoma" written by German Ott. I think you have to sign up with that magazine to read it. That is where I saw the thought of making this a chronic disease.

@colleenyoung

I'd like to bring @vonbaron36 into this discussion, who I believe is also on "watch and wait" for non-Hodgkin's lymphoma.

Jump to this post

@vonbaron36 That is great news.. God Bless.
I have heard others tell me that too. A friend of mine had radiation 7 yrs ago for follicular lymphoma and there is no evidence of the disease today. His enlarged gland was in his groin too..
People have said Vitamin C and Tumeric/Curcumin helped. I was taking alot of vitamins after I was first diagnosed. But they made me so nauseous. I stopped taking them all. My blood word has been good and knock on wood so have the CT scans. I go back in September for my next CT scan.

@travelgirl

@beckyjohnson Thank you for answering.
Everyone I know with lymphoma has had treatments. I had no symptons it was actually found on a fluke. I was getting a CT scan for another reason and a few lymph nodes near my aorta were swollen. I let the DR biopsy them and the found the wording a few follicular lymphoma cells in the lymph nodes.
Since that time the Lymph nodes have gone down in size. I have had 7 CT scans and each and every CT scan since the lymph nodes have gone down in size. Which leads me to believe that some Lymphomas lay dormant.
Are there other people where the lymphoma has remained dormant their whole life?
Or is the watch and wait a newer way to asses the disease? Cause I am thinking this disease would be considered a chonic condition instead of a cancer?

Jump to this post

@travelgirl When I was researching HTLV (required test for blood & organ donors) I learned that early detection has gone down while acute diagnosis has gone up. Is it likely the chronicness of the disease tripled with rising insurer expenses & insurance policy limitations contribute to this reversed trend?

@travelgirl

@beckyjohnson Thank you for answering.
Everyone I know with lymphoma has had treatments. I had no symptons it was actually found on a fluke. I was getting a CT scan for another reason and a few lymph nodes near my aorta were swollen. I let the DR biopsy them and the found the wording a few follicular lymphoma cells in the lymph nodes.
Since that time the Lymph nodes have gone down in size. I have had 7 CT scans and each and every CT scan since the lymph nodes have gone down in size. Which leads me to believe that some Lymphomas lay dormant.
Are there other people where the lymphoma has remained dormant their whole life?
Or is the watch and wait a newer way to asses the disease? Cause I am thinking this disease would be considered a chonic condition instead of a cancer?

Jump to this post

@ginpene05 This is a perfect example of the physician/ practice maneuvering the ins/ outs of insurance guidelines. Fortunately for you & yours your doctor was willing & capable of going that extra mile it takes to get beyond the unremarkable results to the root of symptoms & treatment. Awsome.

I have a rare form of Hodgkins lymphoma which was treated as if it was a Non-Hodgkins form 2 years ago. My only treatment was the immunotherapy drug called Rituximab (which is the 'R' in the chemo treatment called R-CHOP). Although there is no cure for the type of lymphoma I have, I could live a long time with this. The treatment reduced the size of the lymph nodes by 50%. Some were as large and slightly larger than golf balls and should be the size of a pea. It took me about one year following my last infusion to not allow the cancer to control my life. Yoga has helped this. I continue to do what I like to do and am more conscious about my eating. Exercise is important to maintain strength and for the mental benefits. Choose an exercise plan you enjoy. As far as the 'watch & wait', you certainly do not want chemo treatments unless absolutely necessary. Your body can handle a limited amount and type of these drugs. If you have not gotten multiple opinions from doctors at top institutions, I would suggest that you seek at least 3 opinions to make sure all lymphoma teams agree with the one you are currently using. Best of luck to you and continue to enjoy life without allowing the cancer to control your life! As I said, this was not so simple for me to do for more than a year, but it has changed what I now do on a daily basis!

@njnana Thank you for sharing.
My lymph nodes have gone down in size on their own. They have remained fairly small in size. Less than 1 inch now I think they are under a 1/2 inch in size. And it was only one about that size. each and every CT scan they have gone down on their own. So I am assuming that is why the watch and wait approach? I never have had night sweats, fevers or weight loss. They said that would be a sign that cancer is active. Then they would treat you with chemo and radiation.
But I agree Yoga is very calming and I been going to the gym now 3 to 4 times a week.
Glad you are doing better now.
Jackie

I found this Excellent Story Written about Lymphoma and the Wait and Watch Approach I want to share it here for everyone. It was posted by Lymphoma Action a UK Charity Group and advocate for Lymphoma Patients..

https://lymphoma-action.org.uk/about-lymphoma-treatment-lymphoma/active-monitoring-watch-and-wait

Let me know how you like the way they explain why DR's use a Wait and Watch approach?

This is GREAT information! Thank you for sharing!

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