Non Hodgkin's Lymphoma- Watch & Wait Approach

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.)

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.

Thanks

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.

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)?

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

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

Jackie, 3 months it will be my first one.

@chuck218 That's great you are on watch, and wait. It is my understanding some lymphoma patients can go an entire lifetime without ever needing a treatment. Let's hope you and I can be those patients 🙂 ..
My lymph nodes go up and down in size too. My last ct scan showed a few had increased a couple millimeters. So now I need anorher ct scan in six months. My last scan was a yearly scan.
How often are you getting CT Scans?

Jackie, I was just told yesterday my treatment for marginal zone lymphoma will be watch and wait. The only symptoms I have is swollen lymph nodes. I am really happy about that decision. I am glad to hear you are going on two & half years and hope many more for you.