Non Hodgkin's Lymphoma- Watch & Wait Approach

@chuck218 I am now 3 yrs on a watch and wait routine. Through the course of these three years I have had all kinds of feelings and thoughts. And to make it even worse I was also diagnosed at the same time colon cancer. How do you survive double trouble, 2 cancers?

The word cancer itself is frightening.. I have always associated that when you get cancer your done with life. It is very difficult to cure this disease. Most people do not make it. That was what I believed or knew. Especially sitting on the internet reading. The information is outdated and god only knows what truth is. I had to stop reading everything I came across.

The day I was diagnosed with cancer time stopped. I put several things on hold to see how was this all going to pan out. Everyone I knew personally with cancer had passed away. I own my own business. I made a few calls in tears to see what it will take to close my company? I find it difficult to plan too far out. However I try and remind myself I feel fine. So Plan that trip..

I started doing things that I always dreamed of doing. Some crazy things and some not so crazy. I had to pull myself up from that couch and move. Go out and do things. Get off of the internet and only pop on once in while reading about the disease.

I can tell you what I have learned in three years of watch and wait. It means we are not dying anytime too soon. It just like having any other disease You now have to have a team of Dr's who check on you every few months. If we had diabetes we would be on a watch and wait too. Except we would be given insulin pills or shots to manage the disease. I have friends with Diabetes and they seem worse off than I am with my cancers. They have had amputations and now confined to wheelchairs.

Live your life as nothing is wrong, Some people on watch, and wait never have an issue. Maybe you are that one person, who lives a lifetime with this disease, and never needs a treatment.

Dr's are not good at telling us this. They get so wrapped up in the disease they forget they are dealing with people and our emotions. They don't realize to a layman telling us we have cancer is beyond devastating. It really messes with our minds.

Now I did make a few changes No More Smoking on and off. I gave that up completely now, and I don't drink very often. Just once in a blue moon. My acid reflux has cured me of drinking. But I know others who still drink with NHL cancers.

Ok I have to run to a meeting this morning. But I will be back on later ...

The last few weeks I been beyond busy. Which I prefer to sitting around. 🙂

Jackie

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.

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

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)?

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.

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

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.