Non Hodgkin's Lymphoma- Watch & Wait Approach

I was diagnosed in 2002 with nhl...I was put on watch and wait and have NEVER had any treatment for lymphoma. I had pet scan blood work and bone marrow biopsy for about the 1st three years after diagnosis at MD Anderson in Texas which always showed no progression of diseaseI got tired of traveling to Texas since I had no symptoms of active disease. so I stopped the pet scans have been since to oncologist close to me showed no active disease I will also say when I went to my first oncologist for first visit after biopsy results in I asked him ( not really knowing much about nhl) what my prognosis was he said well in 2-3 years you will need treatment and in 12 yrs you will be dead.I just about died in the office, I said whoa you don’t know me or my body I want a second opinion at MD Anderson in Texas, 7 days later I was at. MD Anderson and they were also in shock he had said that
And look no treatment and I am still here! When I went to a different oncologist some years later to make sure my status was still not active I told him I had had this for so long I was scared I would run out of time before Cure was found he said NO look how many years it’s been inactive now I expect it to be many more before you need treatment, we are so close to a cure, if we could figure out why some people like you do not have an active disease but it stays dormant for many years we could cure it

The NLP Hodgkins Lymphoma typically affects males in their 20's and 30's which is your son's age range. I was diagnosed at the age of 53 and am a female! I did learn since my diagnosis that this type of lymphoma affects the body differently if below the diaphragm versus above (in chest area and head). It seems that the disease is more likely to be more slow growing (or remain 'dormant') below the diaphragm than above where it may become more active. Because this type of lymphoma can respond well to Rituxan (which targets the CD20 antigen on normal and malignant B-cells), many have maintenance treatments of Rituxan several times throughout the year. Since your son has now received the RCHOP treatments, his doctors may not want to have him go through this again in the very near future. Have his doctors discussed only Rituxan again & possibly weekly for maybe 4 weeks? Please also be cautious that doctors do not request an over abundance of CT scans. My oncologist told me that he prefers to never have me undergo a PET scan again (unless my health drastically changes) because of the high dose of radiation exposed to the body. In fact, as long as my symptoms remain 'calm', my oncologist has now recommended a CT scan every 18 months, so this is my first 6 month span without a CT scan. I have my 6-month visit next week. I sometimes imagine that every little 'pinch' or 'cramping' in my abdomen is the result of enlarged lymph nodes. My blood work has always been normal, so having normal blood work this coming week will not be an indicator. I definitely recommend contacting your son's insurance company to see if they cover multiple opinions. Gather his reports (I keep hard copies and also scan and save to a flash drive so I can easily provide to whichever doctor needs the information). Have your son gain access to all doctors' patient portals to access information easily. Ask him to also give you access so that you can help him should he not feel well. Cancer centers (especially those affiliated with large teaching institutions) have a 'second opinion' process which has been very helpful. Oncologists and hematologists expect you to obtain multiple opinions and they actually admire you for doing so! Depending where you live, I was very pleased with my visits to Johns Hopkins in Baltimore and University of PA in Philadelphia. I live in central NJ so I have the benefit of being within 3 hours of many teaching institutions.....unfortunately not close to Mayo. Your son is lucky to have you helping with decisions. I will keep your son, you and your family in my prayers. I have 3 sons all close in age to your son. I am sure he needs you more than ever at this time. Hoping for great results!

I was diagnosed in 2002 with nhl...I was put on watch and wait and have NEVER had any treatment for lymphoma. I had pet scan blood work and bone marrow biopsy for about the 1st three years after diagnosis at MD Anderson in Texas which always showed no progression of diseaseI got tired of traveling to Texas since I had no symptoms of active disease. so I stopped the pet scans have been since to oncologist close to me showed no active disease I will also say when I went to my first oncologist for first visit after biopsy results in I asked him ( not really knowing much about nhl) what my prognosis was he said well in 2-3 years you will need treatment and in 12 yrs you will be dead.I just about died in the office, I said whoa you don’t know me or my body I want a second opinion at MD Anderson in Texas, 7 days later I was at. MD Anderson and they were also in shock he had said that
And look no treatment and I am still here! When I went to a different oncologist some years later to make sure my status was still not active I told him I had had this for so long I was scared I would run out of time before Cure was found he said NO look how many years it’s been inactive now I expect it to be many more before you need treatment, we are so close to a cure, if we could figure out why some people like you do not have an active disease but it stays dormant for many years we could cure it

@pammyzammy Welcome to connect and Thank you very much for sharing your story. It brings much hope to those who been diagnosed with NHL. I have been on a watch and wait approach for a little over 3 yrs now.

I just had my followup check up and since it has been over 3 yrs now, I been told that I only need blood work and Ct scans once a yr . I have had perfect blood work the entire time. The lymph nodes near my aorta are enlarged and are considered on the smaller side. I do not have night sweats, weight loss or unexplained fevers. If it wasn't for a CT scan you would never know I have signs of this disease.

I had colon cancer which is how they found the NHL. The cancer marker for colon cancer show no evidence of disease. So they are fairly certain that is was all removed.

The first 3 years after diagnosis is a tell tale sign if these diseases will become troublesome according to my hematology Doctor. So far so good for me too. He feels that my Follicular Lymphoma will not require treatment for years to come. He can't rule out I wont need a treatment at some point. But as of now not to worry having NHL.

I hope both our stories inspire others with NHL.

Again thank you for your post.
Jackie

I too was just diagnosed. Scary. I go for scans Friday to determine stage

I too was just diagnosed. Scary. I go for scans Friday to determine stage