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Non Hodgkin's Lymphoma- Watch & Wait Approach

Posted by Jackie, Alumna Mentor @travelgirl, Jun 15, 2018

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

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knissy | @knissy | May 12 11:11pm

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.

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edl75 | @edl75 | May 13 1:12pm

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

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Colleen Young, Connect Director | @colleenyoung | May 26 2:25pm
In reply to @elliwinders "After finding a lung nodule on an abdominal CT in January 2024, I've been through a..." + (show)
Profile picture for elliwinders @elliwinders

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.

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@elliwinders, so much going on. I can imagine you feel like your body is falling apart and betraying you. It's not supposed to be this way in your 40s.

You might want to join this discussion:
- Recent diagnosis of Gastric Malt Non-Hodgkins Lymphoma: Questions https://connect.mayoclinic.org/discussion/recent-diagnosis-of-gastric-malt-non-hodgkins-lymphoma-and-am-requesti/

How are you doing?

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