1. < Blood Cancers & Disorders

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

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Bob, Alumni Mentor | @grandpabob | Aug 31, 2020
In reply to @susanlim "Susan again. To let you know my follicular lymphoma transformed sometime in the beginning of 2020..." + (show)
@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

Jump to this post

@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.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 31, 2020
In reply to @susanlim "Susan again. To let you know my follicular lymphoma transformed sometime in the beginning of 2020..." + (show)
@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

Jump to this post

@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/

REPLY
susanlim | @susanlim | Aug 31, 2020
In reply to @smokie "Dear Susan - my son had much the same experience as you have had. He had..." + (show)
@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.

Jump to this post

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

REPLY
smokie | @smokie | Aug 31, 2020
In reply to @susanlim "Susan again. To let you know my follicular lymphoma transformed sometime in the beginning of 2020..." + (show)
@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

Jump to this post

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.

REPLY
1 reply
susanlim | @susanlim | Aug 31, 2020

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

REPLY
3 replies
patmariejohnson | @patmariejohnson | Dec 19, 2019

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.

REPLY
Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Dec 19, 2019
In reply to @patmariejohnson "Hi Jackie I was diagnosed January 2017 stage 1/2 Follicular lymphoma. I'm also breast cancer survivor..." + (show)
@patmariejohnson

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.

Jump to this post

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?

REPLY
patmariejohnson | @patmariejohnson | Dec 19, 2019

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.

REPLY
1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Sep 6, 2019
In reply to @travelgirl "@vonbaron36 I been on a Watch and Wait since January of 2016. I dont feel or..." + (show)
@travelgirl

@vonbaron36 I been on a Watch and Wait since January of 2016. I dont feel or see any swollen lymph nodes. Mine lymph nodes they r waiting r near my Aorta. That is a good sign you could be on watch and wait your whole life. 🙂

@gingerw Hi Ginger, nice to meet you. I been swamped with work and my move. Don't believe you and I have chatted yet.
What made the new doctor diagnose you with lymphoma? I am not familiar with MGUS. Is that a Lymphoma? Now did the Doc say what exact kind of non-hogkins lymphoma you have? There are about 65 different types associated with this disease. You also mention kidney disease. Is that a complication from the MGUS? How is your blood work?

Jump to this post

@travelgirl Hi Jackie. Two years ago I was told I had MGUS, and believed that, with quarterly bloodwork. In December 2018, my hematologist-oncologist said "let's go 6 months this time, since everything seems to be looking good". In June my bloodwork came back wonky; it was also right at the time of moving out of state. A PET CT scan and appt with new h-o here, and he told me "oh, I see you were diagnosed with low-grade Non-Hodgkins Lymphoma 2 years ago". I went back and read the very fine print of that first bone marrow biopsy and saw what he did, but my old dr never told me, nor followed up with suggested additional testing. In less than 2 weeks I get another biopsy. He also ran testing to tell me what kind of lymphoma it is, but haven't gotten the results yet. My kidney disease was diagnosed in 2015, and is ideopathic, very rare; my GFR is about 32%.
Ginger

REPLY
kittykiernan | @kittykiernan | Sep 6, 2019
In reply to @travelgirl "@kittykiernan so sorry to hear. Who diagnosed you with Epstein barre virus? Can you go back..." + (show)
@travelgirl

@kittykiernan so sorry to hear. Who diagnosed you with Epstein barre virus? Can you go back to that Dr? Will he help you?

Jump to this post

My primary

REPLY
View MoreView Less
Please sign in or register to post a reply.