Non Hodgkin's Lymphoma- Watch & Wait Approach

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

My name is Shahrokh, I/m 72 years old and was diagnosed with MZL October 2021, and have been on Watch & Wait ever since.
My white blood count was higher than normal and has been increasing ever since. I have been symptom free.
Anyone else with MZL?

@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

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!

I worry more and sleep less. Hug my dog more

@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?