Non Hodgkin's Lymphoma- Watch & Wait Approach

Posted by Jackie, Alumna Mentor @travelgirl, Jun 15, 2018

I would like to meet others who were diagnosed with a lymphoma and are on watch and wait treatment.

I have been on a watch and wait lymphoma watch now for 2 1/2 years. I currently get blood work done every 6 months and a CT Scan once a year.
Has or is anyone else having the cancer monitored like this? Are there people who lived their whole life without ever getting treated for lymphoma?
Would love if we could share our progress on here.
Jackie

@smokie

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.

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

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@susanlim

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

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@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/

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@susanlim

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

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@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.

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