← Return to Non Hodgkin's Lymphoma- Watch & Wait Approach

Discussion

Non Hodgkin's Lymphoma- Watch & Wait Approach

Blood Cancers & Disorders | Last Active: Oct 7 11:27am | Replies (234)

Comment receiving replies
@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.

Jump to this post


Replies to "I was diagnosed in the fall of 2015 with a Hodgkin lymphoma that responded to treatment..."

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

Hi - I had replied to an earlier post asking if it was LP Hodgkins- I see from this post that it is. Very helpful information.

My now 27 YO son was diagnosed with LP Hodgkins in the fall of 2017. Although he did’nt have much in the way of symptoms - a significantly enlarged underarm lymph node led to the eventual diagnosis. It was pretty advanced at that point - stage 4 in spleen and bones. He went through a course of Rituxan. That reduced the extent of disease significantly. After a few months though it grew again so 6 RCHOP treatments which he handled well. Went into remission. Fast forward 6 months and PET scan shows a few areas of increased metabolic activity.

We’re now sorting out options - whether to biopsy again, just repeat scan in a few months, etc, etc.

You provide good advice re: seeking multiple opinions. We may see if we can get insurance approval for an evaluation at Mayo. As you know, because this type is so rare not a lot of experience out there in treating.

Best to you!