1. < Blood Cancers & Disorders

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

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beckyjohnson | @beckyjohnson | Jun 21, 2018
In reply to @travelgirl "@beckyjohnson Thank you for answering. Everyone I know with lymphoma has had treatments. I had no..." + (show)
@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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@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.

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njnana | @njnana | Jun 25, 2018

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!

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1 reply
Jackie, Alumna Mentor | @travelgirl | Jun 25, 2018

@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

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Jackie, Alumna Mentor | @travelgirl | Jul 11, 2018

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?

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njnana | @njnana | Jul 13, 2018

This is GREAT information! Thank you for sharing!

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susanlim | @susanlim | Oct 23, 2018
In reply to @vonbaron36 "Three and 1/2 years ago I had a large tumor on my neck and a small..." + (show)
@vonbaron36

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.

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Hi, May I ask how much curcumin you took? I am trying 1200 mg per day with 10 mg black pepper Bioperine. Thanks.

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vonbaron36 | @vonbaron36 | Oct 23, 2018

I take 1000 mg. curcumin, once a day, Also I sprinkle turmeric on my boiled eggs every morning for breakfast. Its been four years now and no cancer. As a bonus I also have no arthritis problems and I am 82 years old. Still have my fingers crossed. Good luck.

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2 replies
vonbaron36 | @vonbaron36 | Oct 23, 2018
In reply to @vonbaron36 "I take 1000 mg. curcumin, once a day, Also I sprinkle turmeric on my boiled eggs..." + (show)
@vonbaron36

I take 1000 mg. curcumin, once a day, Also I sprinkle turmeric on my boiled eggs every morning for breakfast. Its been four years now and no cancer. As a bonus I also have no arthritis problems and I am 82 years old. Still have my fingers crossed. Good luck.

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Also my curcumin has BioPerine for absorbtion. And I use pepper on my eggs also.

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1 reply
susanlim | @susanlim | Oct 23, 2018
In reply to @vonbaron36 "Also my curcumin has BioPerine for absorbtion. And I use pepper on my eggs also." + (show)
@vonbaron36

Also my curcumin has BioPerine for absorbtion. And I use pepper on my eggs also.

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Thank you! About the same. I hope it helps, but I figure it cannot hurt. Wishing you continued good health.

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1 reply
susanlim | @susanlim | Oct 23, 2018
In reply to @susanlim "Thank you! About the same. I hope it helps, but I figure it cannot hurt. Wishing..." + (show)
@susanlim

Thank you! About the same. I hope it helps, but I figure it cannot hurt. Wishing you continued good health.

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They would not consider radiation for me because possible region too big (neck and both armpits). So watch and wait.

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