Non Hodgkin's Lymphoma- Watch & Wait Approach

Posted by Jackie, Volunteer 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

Liked by beckyjohnson

Jackie, 3 months it will be my first one.

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Would like to hear from anyone that has been put on watch and wait treatment for Non Hodgkin lymphoma. I have Marginal zone NHL. Only symptoms is swollen nodes. Just like to hear how long you have been on W&W and how you handle it
Any input would be helpful. Thanks

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@chuck218

Just like to hear how other people in group that are on the Watch & Wait treatment are doing and how long you’ve been on it. Thanks

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Good question! I am just recently diagnosed, scheduledfor PET scan next week to help determine next step. If my choices are watch & wait vs. treatment, I think I would push for treatment (because I have a retroperitoneal mass that has taken out one kidney and I would prefer to stop it before it affects anything else — there’s a lot of important “stuff” in that area!) what would be the advantage to watch and wait (other than avoiding the ordeal of treatment)?

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Just like to hear how other people in group that are on the Watch & Wait treatment are doing and how long you’ve been on it. Thanks

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@chuck218

Just like to hear how other people in group that are on the Watch & Wait treatment are doing and how long you’ve been on it. Thanks

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Hello @chuck218, I merged you wait & watch discussion with where you had posted previously in the discussion already titled Non-Hodgkin's Lymphoma – Wait & Watch Approach. I did this so your message would be seen by the members you were already discussing with and who also are using this approach.

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@JustinMcClanahan

Hello @chuck218, I merged you wait & watch discussion with where you had posted previously in the discussion already titled Non-Hodgkin's Lymphoma – Wait & Watch Approach. I did this so your message would be seen by the members you were already discussing with and who also are using this approach.

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Thanks

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I was diagnosed in the fall of 2015 with a Hodgkin lymphoma that responded to treatment usually given to those with Non-Hodgkin lymphoma. This type is called Nodular Lymphocyte-Predominant Hodgkin Lymphoma. My only treatment so far was Rituxan in the spring & summer of 2016. Since then, I have blood drawn (which never showed an abnormality) every 6 months, have exams with oncologist every 6 months and for the first 18 months following treatment, I had CT scans every 6 months. That reduced to annually and now every 18 months for the CT scan. I am on Watch & Wait and thankful for this. Those who aggressively want to receive a full chemo treatment (such as R-CHOP) should know that you can only receive so many treatments that will do the job, and each one is stronger and more weakening to the body. Be glad your doctor does not want to treat you before absolutely needed. I was lucky in that Rituxan targets the CD20 antigen on normal and malignant B-cells. The body's natural immune defenses are recruited to attack and kill the marked B-cells. My lymph nodes were the size of golf balls (in my abdomen/behind the intestines). The Rituxan shrunk the lymph nodes by 50% and more in about 4 months. Because the lymph nodes have not changed size since then, and because the disease has not affected additional lymph nodes or my organs, no more treatment is scheduled for now. I will continue with the Watch & Wait approach and am thankful for this. My one recommendation is to all patients with lymphoma —- if your insurance covers it, have another oncologist (or several) from a different medical group review your reports/tests, etc. and see if that doctor agrees with Watch & Wait. I was fortunate in that 4 different lymphoma teams reviewed my biopsy reports, scans, lab work and symptoms, and 3 of the 4 agreed with the Rituxan only treatment rather than a full chemo treatment. The 4th group believed I should receive R-CHOP. Be conscious of your symptoms and keep a journal to keep record of any changes that may occur during the waiting period.

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In July of 2018, Jackie (Volunteer Mentor for this group) shared this link that has so much worthwhile information: https://lymphoma-action.org.uk/about-lymphoma-treatment-lymphoma/active-monitoring-watch-and-wait (I viewed it several times —- it is great information about the watch & wait approach.)

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@njnana

I was diagnosed in the fall of 2015 with a Hodgkin lymphoma that responded to treatment usually given to those with Non-Hodgkin lymphoma. This type is called Nodular Lymphocyte-Predominant Hodgkin Lymphoma. My only treatment so far was Rituxan in the spring & summer of 2016. Since then, I have blood drawn (which never showed an abnormality) every 6 months, have exams with oncologist every 6 months and for the first 18 months following treatment, I had CT scans every 6 months. That reduced to annually and now every 18 months for the CT scan. I am on Watch & Wait and thankful for this. Those who aggressively want to receive a full chemo treatment (such as R-CHOP) should know that you can only receive so many treatments that will do the job, and each one is stronger and more weakening to the body. Be glad your doctor does not want to treat you before absolutely needed. I was lucky in that Rituxan targets the CD20 antigen on normal and malignant B-cells. The body's natural immune defenses are recruited to attack and kill the marked B-cells. My lymph nodes were the size of golf balls (in my abdomen/behind the intestines). The Rituxan shrunk the lymph nodes by 50% and more in about 4 months. Because the lymph nodes have not changed size since then, and because the disease has not affected additional lymph nodes or my organs, no more treatment is scheduled for now. I will continue with the Watch & Wait approach and am thankful for this. My one recommendation is to all patients with lymphoma —- if your insurance covers it, have another oncologist (or several) from a different medical group review your reports/tests, etc. and see if that doctor agrees with Watch & Wait. I was fortunate in that 4 different lymphoma teams reviewed my biopsy reports, scans, lab work and symptoms, and 3 of the 4 agreed with the Rituxan only treatment rather than a full chemo treatment. The 4th group believed I should receive R-CHOP. Be conscious of your symptoms and keep a journal to keep record of any changes that may occur during the waiting period.

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Thanks for your info. Glad to hear you are doing well.

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@colleenyoung

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

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After radiation for follicular lymphoma four years go and having C T or P E T scans every year since, without any detectable sign of cancer I guess you could say I am on watch and wait. My next scan will be in March 2019. It is always a stressful time of year for me, wondering if there will be a recurrence.

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@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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Do you take curcumin 1000mg or turmeric/curcumin 1000mg
Did you check with doc first?
Thanks

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@stephaniet

Good question! I am just recently diagnosed, scheduledfor PET scan next week to help determine next step. If my choices are watch & wait vs. treatment, I think I would push for treatment (because I have a retroperitoneal mass that has taken out one kidney and I would prefer to stop it before it affects anything else — there’s a lot of important “stuff” in that area!) what would be the advantage to watch and wait (other than avoiding the ordeal of treatment)?

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I agree with what you're essentially saying, that Watching and Waiting is not appropriate when there is an obvious cancerous mass that could spread. That's how it was for me, and I was wilIing to go through surgery and chemo to get rid of it. I bet they will recommend removing it for you if it is operable. Good luck to you.

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@chuck218

Do you take curcumin 1000mg or turmeric/curcumin 1000mg
Did you check with doc first?
Thanks

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I take 1000 mg of Drs. Best brand of curcumin because It has one of the largest concentrations of curcuminoids, 95%curcuminoids. Products labeled turmeric/curcumin usually don't contain muck curcumin, which is want you want.. I checked with a couple of Drs. and they both said it would be O K, Depending on your medications it would be wise to check with your Drs. also. They would not recommend taking curcumin if you are on blood thinners, like those containing Warfarin.

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Thank you for your information. It is helpful

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@ginpene05

I agree with what you're essentially saying, that Watching and Waiting is not appropriate when there is an obvious cancerous mass that could spread. That's how it was for me, and I was wilIing to go through surgery and chemo to get rid of it. I bet they will recommend removing it for you if it is operable. Good luck to you.

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Thanks. All I know so far is the mass is located where it can’t be removed surgically or radiated…so obviously hoping it can be defeated using immunotherapy/chemo. Stay tuned!

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