Non Hodgkin's Lymphoma- Watch & Wait Approach

Hi Jackie I was diagnosed January 2017 stage 1/2 Follicular lymphoma. I'm also breast cancer survivor 2.5 years out. I go to my oncology doctor every three months for blood work. My insurance will not authorize any scans so my last scan was July 2017. I'm feeling well. The doctors found my lymphoma when I was having a scan for kidney stones.

Hello @patmariejohnson. How have the results of your regular blood work looked? You may also be interested in checking out some of the discussions in the breast cancer group as well, https://connect.mayoclinic.org/group/breast-cancer/. You also mentioned that you are feeling well, are the regular blood draws to monitor your lymphoma during your "wait and watch" period?

Hello justin My blood work looks fine except the rbc and MCHC is a little low and MVC ia a little high. The blood work is to monitor my lymphoma. Also I'm taking prolia shot so they need to monitor my calcium and phosphorus levels . Thank you for the breast cancer link.

Susan again. To let you know my follicular lymphoma transformed sometime in the beginning of 2020 to high grade DLCBCL lymphoma with a single C-Myc translocation. I had no symptoms. This was only found via enlarging nodes am slightly elevated LdH. The scans and biopsy then showed spread and aggressive diffuse large B cell. I completed 6 rounds of R-CHOP and 2 of maintenance rituximab but my end PET-CT showed just one remaining metabolically active axillary node.

That node is now being studied via core needle biopsy. I had been pleased that almost all of the cancer had been eliminated by the chemo but apparently it is a pass/fail system, and even a small amount of residual cancer indicates refractory/ relapsed disease and treatment failure. Further, I feel well physically. My blood values, which were never far out of range, are normal and I continue to not have B symptoms. This is a most devastating result as the chemo had seemed to be working well. elEmotionally, it is almost unbearable, as a few only toxic and uncertain treatments seem possible. Stem cell transplant has a very low success rate in Transformed Lymphoma. Car T Cell is possibly available as 2nd lone treatment in a trials setting. I hear back from the doctors on Thursday. I wonder if anyone else has had this experience?
I put “Transformed Lymphoma” in the search engine and found no results. Question for the moderators if there is another heading on the boards for this?
Terrified and devastated. Susan

Dear Susan - my son had much the same experience as you have had. He had a stem cell transplant as well - but the B cell was back within a year. He then went to the wonderful
Mayo Clinic and had a T-Cell transplant. That was in August 2018, and just had his 2 year checkup! All seems good. We are so greatful to the Mayo!
Thinking of you and let us know what your next step will be.

Thank you. It is good to hear success stories. May his recovery be lasting.

@susanlim, I can imagine that this news comes like a punch in the gut. Along with @smokie's son's experience, I think @grandpabob can relate to your story. I encourage you to start a new discussion called "Transformed Lymphoma" in the Blood Cancers group https://connect.mayoclinic.org/group/blood-cancers-disorders/

There is also a CAR-T Cell Therapy group here: https://connect.mayoclinic.org/group/car-t-cell-therapy/

@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.

@travelgirl - Any changes in your watch and wait approach? I was just diagnosed with Small Lymphocytic Lymphoma and my doc has suggested the same approach.

@garciard1 Welcome to Mayo Connect! We are not medical professionals here, but we are fellow patients, caregivers, or family members. We share our experiences and strength, to help others on their journeys in health.

Like you, I was recently diagnosed with a blood cancer called Multiple Myeloma, which affects the plasma cells of my blood. And like you, I am a "watch and wait" approach, getting tested every three months. My oncologist is a well-trained guy, and very matter of fact. There are specific components he is watching, and does not want to start until we have to, because of other health issues I have. It is like waiting for the other shoe to drop.

Here is an awesome article from the leukemia society in Australia, that talks about your small cell lymphoma. You will see that it is often grouped with chronic lymphocytic lymphoma. https://www.leukaemia.org.au/blood-cancer-information/types-of-blood-cancer/lymphoma/non-hodgkin-lymphoma/small-lymphocytic-lymphoma/

Also, @1nan may have some input to offer you.
Ginger