Jackie, Alumna Mentor
@travelgirl
@travelgirl
Posts: 527
Joined: Apr 01, 2016
Non Hodgkin's Lymphoma- Watch & Wait Approach
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
Liked by Nancy, Volunteer Mentor, beckyjohnson, RDG
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 11002
Joined: Jul 23, 2014
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
@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/
Bob, Volunteer Mentor
@grandpabob
@grandpabob
Posts: 168
Joined: Nov 10, 2018
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
@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.
Liked by Colleen Young, Connect Director
RDG
@garciard1
@garciard1
Posts: 1
Joined: Nov 12, 2020
@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.
Ginger, Volunteer Mentor
@gingerw
@gingerw
Posts: 3739
Joined: Jul 26, 2018
@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
Liked by Colleen Young, Connect Director
Ginger, Volunteer Mentor
@gingerw
@gingerw
Posts: 3739
Joined: Jul 26, 2018
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
rip
@rip
@rip
Posts: 3
Joined: Dec 24, 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.
Amanda Burnett, Connect Moderator
@amandaburnett
@amandaburnett
Posts: 412
Joined: Nov 19, 2015
I feel good these days. New oncologist says I need nothing now, will see him again in April 2021.
@rip That is wonderful news. I hope that nothing else occurs. Has any part of your daily regimen changed since getting the diagnosis and now on the watch and wait?
Liked by Ginger, Volunteer Mentor
susanlim
@susanlim
@susanlim
Posts: 24
Joined: Oct 23, 2018
@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!
Liked by Bob, Volunteer Mentor
Bob, Volunteer Mentor
@grandpabob
@grandpabob
Posts: 168
Joined: Nov 10, 2018
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!
@susanlim – so clad the R-Chop worked for you. It is so good the hear the success stories.
I encourage you to keep in touch on connect as there are a lot of good people who scan the posts and may be able to offer some support.
Take care.
Bob
Liked by Ginger, Volunteer Mentor
@susanlim
Thank you. It is good to hear success stories. May his recovery be lasting.