Non Hodgkin's Lymphoma- Watch & Wait Approach

From my bloodwork in May, I can almost tell the progression is ramping up. All the new symptoms appearing tells me I’m heading for trouble. From all the damage done to my body from the bad guys, it’s something that my Oncologist said to me, as my appointment was ending, it sounded ominous. I don’t think they can use the normal treatment for cancer patients and she didn’t know what they could use, since most drugs used are very hard on the heart and my heart is barely hanging in. All I know is that any treatment she uses will kill me. Great huh! Take care of yourself and watch how the various numbers in your bloodwork are headed, up or down. Up is definitely bad. Good luck.

Thank you for your kind concern. While in remission I will have quarterly bloodwork done and subsequent visits to my cancer doc.

Please explain the difference among the 3 different types of marginal zone lymphoma:
nodal marginal zone lymphoma
splenic marginal zone lymphoma and
MALT or gastric GALT

Hi @jam5. Sneaking into this discussion because I found a good article that compares all of these lymphoma types on one page. I know you like research. ☺️
Keep scrolling down to the middle of the page and it discusses the subtypes.
https://www.lymphoma.org.au/types-of-lymphoma/non-hodgkin-lymphoma/indolent-slow-growing-b-cell-nhl/marginal-zone-lymphoma-mzl/#:~:text=Marginal%20Zone%20Lymphoma%20%28MZL%29%20–%20MALT%2C%20Nodal%20%26,cells%20–%20called%20B-cell%20lymphocytes%20%28B-cells%29%20become%20cancerous.
How has your husband been feeling?

Lori,
Thank you for the article, and for your inquiry also
I am still uncertain as to the type of non-Hodgkin's lymphoma-MZL
Is it MZL, SMM, WM or a few ??
The wild type and AL cardiac amyloidosis , diverticulosis, and pancreatic insufficiency complicate things, hemoglobin 10.8, light chains (kappa& lambda-more kappa), fatigue, some digestive issues intermittently, and current kidney stones ? I am not sure at times where to begin. Just trying to maintain office visits nd manage one symptom at time
At present, watchful waiting and still contemplating another opinion- uncertain if Dana Farber or Boston University medical
I feel a complete multidisciplinary team is preferable, rather than another check-in at MSK hematologist. sent last labs to MD at MSK who saw him in 2022, and she feels all is in order at present ??
Hope you have a Happy Thanksgiving

You’re like me…we like to chase things down until we have a definitive answer. However, there is also a time to step aside and trust the hematologist. If your husband’s doctor feels everything is in order and he’s not having any new or worsening symptoms that may be all that can be done right now…to stomp out the little fires as they erupt. Everything may very well be in order at the present. Quite a bit can be determined from blood results and if she didn’t notice anytime amiss, then maybe take that a face value.

A second opinion from a multidisciplinary medical facility is never a bad idea if you’re not satisfied with his current care. Dana Farber has a very good reputation (besides Mayo, of course! But that’s not as convenient for you).
He’s seeing a doctor at Memorial Sloan Kettering now? That’s a highly recognized institution for cancer treatments and advancement so unless you’re really not happy or don’t trust his doctor, you and your husband might take some comfort in not having to search for another clinic.

For now, if I were you, I’d just cruise into the holidays on the news that all his bloodwork results were good and don’t look around for trouble! It finds us anyway without is looking for it! 😅

Happy Thanksgiving to you and your husband! Our daughter and son-in-law are flying down for a week to be with us in Florida for Thanksgiving. That’s a first time for them so we’re really looking forward to having them here and celebrating a holiday together. Looks like we’ll actually need to make an effort with a turkey and all the fixin’s instead of our usual ‘shrimp on the barbie’ this year. 😂

Lori,
Yes I appreciate what you are saying. Sometimes it is best to leave well enough alone. thank you for your insight as I feel I have lost mine sometimes. I am just scared and it's hard not knowing what will ensue.
Boston is 4 hours from us, and I don/t think winter is a good time to pursue another input right now without an urgent need.
His current hematologist/oncologist ( head of lymphoma division) is at the John Theurer Cancer Center (JTCC)Hackensack University Medical Center in Hackensack, NJ. He is highly respected ,but not a good communicator.
The second opinion was at the MSK with a hematologist/ oncologist with a special interest in amyloidosis. She did review the last labs, and did not see a need for additional interventions.
Sounds like you have a great family time planned Happy Thanksgiving
Enjoy,
Judy

I am on a watch and wait with non Hodgkin monoclonal low grade B cell lymphoma/leukemia. Started late December 2019 with slightly enlarged spleen and low platelets. After January 2021 bone marrow biopsy, diagnosis was confirmed. Really worrying because every time I have something go on with my body, I get scared and think is this the start of it. Keep in touch.

I understand as when I was diagnosed I had a 6 year wait before I needed chemo. Doc said a slow growing cancer but that did not help much with the worry and the wonder of what now. I understand what you are going through and pray that you will find things to keep you busy and get on with your life. You know it's there so now up to you to beat it. I will pray you will find peace in your mind and heart and just believe in being positive. A positive outlook is a good medicine for your soul.

Thank you. Hope you are doing well and that you got through chemo OK.