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Non Hodgkin's Lymphoma- Watch & Wait Approach

Blood Cancers & Disorders | Last Active: Oct 7 11:27am | Replies (234)

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@travelgirl

@vanveer21 I want to welcome you to connect. I completely understand how you feel. I work in the travel industry, and when I was first diagnosed I was beyond panicked. I was actually a close state of constant hysteria. Especially never being sick before, and I run a travel company. I get the hard to plan ahead and worrying stuff. Please DO NOT do that.

It is now 3 yrs and 7 weeks since I was diagnosed, with a stage 3 Follicular Lymphoma.
Every ache and pain I do blame on Lymphoma. I won't lie. I could get a paper cut and the thought crosses my mind is it lymphoma? seriously it plays with your mind. If it was serious you would be grounded. Just remember that...

There are no aches, and pains that it causes that I know or have felt. At least not at this stage of the game.
When they first diagnosed me, I had several enlarged lymph nodes. They were found on a fluke, after catching H-Pylori traveling in a third world country. The Doc ordered, a colonoscopy and endoscope. They found a precancerous polyp in my colon. It turned out to be a stage 1 cancer.
Which then prompted the CT scan .

That Ct scan found the FL . So talk about having a heart attack. 2 primary cancers in a 2 week time frame.

It takes years and years for this type of Lymphoma to create any problems. 1 out of every 3 people with FL will ever require treatments. BTW I was 53 when I was diagnosed.

3 months after my first CT scan I had another Ct scan, and they repeated that every 3 months for the first year.
With every Ct scan the lymph nodes shrunk. Then I went every 6 months of Ct scans. Then to once a year. I am back to a 6 month scan next month. One stupid node grew a minor amount so hematology wants to scan me again. I have perfect blood work.

You would not be able to tell I have lymphoma by my blood work.

You want to be on a watch and wait approach. That is best approach. Chemo or radiation does not offer a cure. It only offers us some relief of symptoms. If you have no symptoms of night sweats, high temps or weight lost. Then don't worry. It typically attacks our pancreas first. But it will take years to do that.

How did they find your FL? Did they give you a stage?

So you know I have a client who was diagnosed with FL at 19 yrs old he is 59 yrs old. They gave him Chemo and Radiation each time his lymph nodes swell. Today he is 59, and now has Leukemia from all those treatments.

Hang in there. Try not to let it stress you out. I know its easier said than done. I promise you will be fine. When I stopped worrying about it after I made myself nuts for months, my life got back to normal. Sadly all the stressing did was put 15 pounds on me.

If you need anything I am here, and so are many others you can chat with.

Hope to hear from you soon?
Jackie

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Replies to "@vanveer21 I want to welcome you to connect. I completely understand how you feel. I work..."

Jackie, thanks. But I don’t understand at all the frequency of these CT scans. Each time you are exposing your body to carcinogenic radiation. The protocol at my hospital is no more scans—only after chemo therapy, when and if that takes place. Nodes can wax and wane without it meaning anything. Only if there are symptoms/ aggressive spread or organ involvement is that a cause for concern and intervention. Who is ordering all of these scans? I would get a second opinion about that. Good luck to you.

Thank you so much for being so open and honest. Like I said I was diagnosed an 2017. I am stage 4 follicular lymphoma my lymph node was removed the virchow node in my neck was removed and it was found to be cancerous since that time I have another one in the exact same place that's swollen up real big and stays there swollen and they don't want to do anything to it or with it. I've been to Cancer Treatment Centers of America so I've got my second opinion and I guess watchful waiting is what I'm supposed to do. I do argue about the pain though I have been in almost constant pain since three or four months before I was diagnosed I do not know that it is from the lymphoma but I would assume that that's what's causing you very miserable here in Arkansas