Non Hodgkin's Lymphoma- Watch & Wait Approach

I had two treatments, they made me so sick I quit. New doctor now, on watch and wait since April 2020

@rip Good morning, and welcome to Mayo Connect. May I ask what treatment you had received that made you ill? It must have been quite the experience to do a few treatments, then stop. How do you feel these days?
Ginger

I feel good these days. New oncologist says I need nothing now, will see him again in April 2021.

@susanlim Hello Susan,

I can certainly relate to your feeling terrified and devastated. Fortunately, it seems there is still a treatment plan for you. Your path seems to be similar to what I encountered, though mine was much shorter, it all transpired in a few months. (My case was not a Transformed case).

I was diagnosed with large B cell Lymphoma, which i was told had a high rate of treatment success with some of the conventional treatments. Unfortunately for me, that was simply not the case.

After several types of chemo, which were not successful nor was a stem cell transplant an option due to the aggressive malignancy, Car T was the last possible treatment for me.

I had the Car T infusion Aug 1 2018, and am happy to say that the Cancer is in remission at this point in time.

I hope this bit of information will relieve some stress and confirm there still may be treatment options available.

I am not familiar if there is a discussion thread specific to “Transformed Lymphoma” on the site.

I encourage you to keep in touch on Mayo Connect (If you are comfortable doing so) and invite you to check out the Car T group on Mayo Clinic Connect which may be an added source of information for you.

I am hoping you receive the best of news on Thursday.

Hi —there seem to be no responses to the Transformed Lymphoma group I tried to start. Thank you also Colleen and Bob. As it turned out the transformed DLBCL was eradicated by the R-CHOP with only a marginal amount of the Follicular Lymphoma remaining. This underscores the importance of a biopsy as the only reliable means of diagnosis. So now I am on maintenance Rituxumab (4x per year) the coming 2 years. And a return to watch and wait with the FL. So a much better outcome than it seemed!

Well Jackie, if you’ve ever read about me and my various post, I must have the worst body in the world. Yes, I’m in the watch and wait game like you, however I’m in that critical stage you don't want to be in. Back in 2019, I discovered something was wrong with my blood work that nobody seemed to care about. So I begged my new pcp to have my blood checked out more carefully. Since I’m my own medical health activist all my life, I could tell something was drastically wrong. Sure enough, within 48 hours, I received a call from my hospital’s cancer clinic. My pcp had told them to look at my blood results and they wanted to see me immediately. Naturally, I’m scared that I already have the big “C”. I’m to see an Oncologist and Hematologist and after many blood, urine and other tests, they said I had a rare condition called MGUS. With more months and tests, they narrowed it down to an even rarer blood condition that’s diagnosed as Kappa light chain IgM blood. So it’s the waiting game but over the last 6 months, my bad guys are progressing.

To clarify this for you, MGUS means I have precancerous cells roaming around my body. Because it’s Kappa IgM, those cells will most likely progress into full blown cancer and they are already slowly progressing according to my blood test in May 2022. Now depending on how it progresses, I’ll either end up with Non Hodgkin’s Lymphoma or an even rarer form of Lymphoma known as WM, Waldenstrom Macroglobulemia, that’s a mouth full. So I’m back to the waiting game but other symptoms are popping up, intense itching below the knees, my Lymphatic system is blocking up, I’ve lost 27% of my body weight, swollen Lymph glands above and below my mid line (not good), one or the other if better but both is definitely not good news. So as you can see, this has taken over 3 years to get to this point and I’ve told my Doctor, no cancer’s going to kill me, my heart will. That’s because I have a 1 in a million heart birth defect that will kill me any second. So if you have a question, just ask. And yes, you can go the rest of your life without any further complications, that’s why you’re playing the watch and wait game to keep an eye on you. Good luck, Becky1024