Non Hodgkin's Lymphoma- Watch & Wait Approach

I was diagnosed with stage 1 follicular NHL when I found an enlarged inquinal lymph node. Had it biopsed and had a PET scan done. The scan indicated that the cancer was nowhere else but that node. I also had a bone marrow biopsy followed by 13 radiation treatments. Follow up PET SCAN showed no cancer after radiation. I have been on watch and wait since. See oncologist and get blood work every 6 mths and things have been stable. About 8 mths ago I had blood work which showed abnormal M protein of .7 . Two subsequent blood test every 3 mths has shown no change. So I have the trifecta of watch and waits as I also have a heart aneurysm found in 2014 that they check annually. Fortunately none of these three have affected my life much, outside of being a bit more tired and achy then I would like. Some day the shoe will drop but I dont concern myself about it the Dr says when it does we have treatments available. Good luck and watch and wait isnt uncommon

I am on the watch and wait program too. Have been for 2 years. I've had 10 iron infusions because I have anemia along with the Lymphoma. The infusions did nothing. My hemoglobin goes up and down. It was 8.6 and now its 9. Still low but just living wit it.

After finding a lung nodule on an abdominal CT in January 2024, I've been through a ridiculous amount of imaging, biopsies, and eventually surgery to be diagnosed with MALT Lymphoma. I had a wedge resection, which removed the nodule from my lung, though there are a couple of very small nodules left behind. I also have a lesion on my vertebrae, which may or may not be related. It showed up last Sept. I'm going to be getting a colonoscopy and endoscopy in July to see if it is in the digestive tract due to persistent diarrhea since July. Once I have those results, we will decide if treatment is necessary (likely a 4-week course of rituximab infusions). I have annular granuloma on both legs that has now spread up to my thighs, and iron deficiency. When I had a bone marrow biopsy last summer, they thought I had some sort of autoimmune disease. I also have adenomyosis (found on MRI in May). I'm 44 and I feel like my body is falling apart. I understand that this is an indolent cancer, so watch and wait is often the only thing to do. I think I'm mostly concerned about the fact that most people diagnosed with this form of lymphoma are in their 60s. I have read that rituximab loses efficacy the more you have it. Is there anyone else here who has been diagnosed at such an early age for it? Or anyone who has had it more than 10 years? I'd be curious to know your experience.

How is your other kidney holding up? Did you have one prior to treatment?

I was recently diagnosed with low grade B cell follicular NHL. I decided to get a kidney stent. The oncologist is still suggesting immunotherapy. I am going to try and pursue a more holistic route at this point.

I was treated with Rituxan. If I remember correctly the infusions were 1x week for a month, then I think every 3 mos. I had no symptoms when my Lymphoma was discovered and no side effects from treatment. I could have chosen a 6 mo course of treatment which would have also included a chemo. I elected the longer course w/o the chemo to hopefullpreventdestruction of good cells etc. As with others with my condition, I continually wait for the other shoe to drop as we all know the cancer isn’t gone and can return. I’ve met one person who has had it 3 times and another who in 15 years has not had a repeat. I hope this was helpful

Of course

Welcome to Connect, @palepa. Congratulations with your successful treatment for NH B cell Lymphoma. That’s very encouraging for anyone else who received a similar diagnosis. Being down to annual visits is a big milestone. I was granted that length of time between appts recently and it’s pretty liberating.

You mentioned having treatments for 2 years. If you don’t mind sharing, what medication was used?

My non Hodgkins Lymphoma was indolent and I did treatment for 2 years with NO side effects

I was diagnosed with Non Hodgkins B cell Lymphoma in 2017 and did treatment followed by blood tests, first monthly, then every 3 mos, 6 mos and annually….now, 7 years later, I see the oncologist annually with blood tests prior to visit.

I agree. I share with folks that my shift in mindset was and continues to be vital while facing the challenges of a rogue cell journey. I have learned to rest more, which is a big bonus. However, I still feel a bit guilty from time to time.

Faith is most important and a positive outlook as hard as it is at times to keep that it is imperative to have. A positive attitude is half the battle. I am having to work hard this am to keep it. Just tired this am and have a list of things I need or want to get done this month. I am cat sitting for a friend until next week and my cat is miffed that another cat is in the house. Yesterday was so busy think just tired and have to catch up a little today. I will feel better when I get moving and start the day.

Well I just hit the wrong key and think my incomplete reply is out there. LOL. Oh well, no harm done except you may think what the heck. HA. All is well just keep the positive vibe and happy talk. God is in control.