Non Hodgkin's Lymphoma- Watch & Wait Approach

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.

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

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,
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

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?

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

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

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 honesty and strength and courage. My puny little Splenic Marginal NHL is a little issue compared to all that you have faced. Prayers for you, regardless @sally2022

Well Jackie, if you’ve ever read about me and my various post, I must have the worst body in the world. Yes, I’m in the watch and wait game like you, however I’m in that critical stage you don't want to be in. Back in 2019, I discovered something was wrong with my blood work that nobody seemed to care about. So I begged my new pcp to have my blood checked out more carefully. Since I’m my own medical health activist all my life, I could tell something was drastically wrong. Sure enough, within 48 hours, I received a call from my hospital’s cancer clinic. My pcp had told them to look at my blood results and they wanted to see me immediately. Naturally, I’m scared that I already have the big “C”. I’m to see an Oncologist and Hematologist and after many blood, urine and other tests, they said I had a rare condition called MGUS. With more months and tests, they narrowed it down to an even rarer blood condition that’s diagnosed as Kappa light chain IgM blood. So it’s the waiting game but over the last 6 months, my bad guys are progressing.

To clarify this for you, MGUS means I have precancerous cells roaming around my body. Because it’s Kappa IgM, those cells will most likely progress into full blown cancer and they are already slowly progressing according to my blood test in May 2022. Now depending on how it progresses, I’ll either end up with Non Hodgkin’s Lymphoma or an even rarer form of Lymphoma known as WM, Waldenstrom Macroglobulemia, that’s a mouth full. So I’m back to the waiting game but other symptoms are popping up, intense itching below the knees, my Lymphatic system is blocking up, I’ve lost 27% of my body weight, swollen Lymph glands above and below my mid line (not good), one or the other if better but both is definitely not good news. So as you can see, this has taken over 3 years to get to this point and I’ve told my Doctor, no cancer’s going to kill me, my heart will. That’s because I have a 1 in a million heart birth defect that will kill me any second. So if you have a question, just ask. And yes, you can go the rest of your life without any further complications, that’s why you’re playing the watch and wait game to keep an eye on you. Good luck, Becky1024