Non Hodgkin's Lymphoma- Watch & Wait Approach

That is so important. To forget about it as much as possible between tests. One thing you write that makes me wonder was that “1 in 3 FL patients will never need treatment.” Is that so? I am 56, diagnosed with FL only last August, on watch and wait. I was given the impression that all of us with FL will need treatment sooner or later —except those who die of something else, including old age, first.

@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

@susanlim I feel find just tired some days. But i run myself ragged with activities. I am on various boards, and chair person to a couple of groups. I run my own business. Escort groups and travel around the world. I give travel talks and tend to forget how old I am. LOL..
Besides being tired some days I feel fine.
So I am not worried. If you saw my blood work it has been fine. It is possible one day it will come back all screwed up. Then I will deal with it. And probably stop doing not a thing.
Till then Nothing is going to stop me.
We can't dwell on our illnesses or they will kill us.
It good to understand what is happening or could happen. But by no means will I let these diseases or potential diseases rule my life. The ones the Dr's watch and the possible ones that could come up in the future.
I am the kind of person I won't lie, that if I sit and read about prostate cancer, I will start thinking I have it, and I don't even have a prostate. LOL..
I was so happy to find Mayo clinic connect to be honest years ago. It actually helped me, to stop reading everything on line.
I just focus on this site, and I hope to help everyone, not panic like I did 3 years. When I had the double cancer diagnosis.
Cause nothing scares the hell of you more, than being told you have double trouble.
I just let my Dr's worry about it, and I focus on my life not my diseases.
I find it keeps my stress level down.
Now if I could just loose the 15 pounds I gained stressing the first year about what would happen next I would be 100% my old self? 🙂

You have a great day..
Jackie

@susanlim Well I was told in order to stage my Lymphoma I needed to be scanned every 3 months in the beginning.

Plus I also was diagnosed with Cecum cancer so I have Colo rectal surgery watching the area around my stomach. Since I actually had what they call Cecum cancer a rare colon cancer. They are making sure, I guess it was really a stage 1 cancer?

Now my Follicular Lymphoma was located around my aorta. That is the location of the swollen lymph nodes. Maybe because of the location??? They then after the first year felt I was stable to move me out to 6 months did that for a year. Then I was moved to 1 year scans.

Well my last set of scans I believe he said 1 lymph node grew again. They had been steadily shrinking in size. This was last September , when the one grew. Hematology put me back to a six month scan. Just to make sure nothing else is going on?

To be honest when you have as much I do getting monitored. I am down to asking the DR's this at the end of each visit.

Do I need to let the coroner know to be expecting my body soon? And I dying anytime soon?

I am also a Glaucoma suspect. That Doc starts rambling with stuff, I have no clue what he is saying. I just ask him, is it time I order the seeing eye dog yet?

Plus they watch me for a suspicious spot on one breast..

Plus they monitor me for Barrett's esophagus.

Between everything these Dr's are watching I am numb to all of it. They will make you nuts with worry. I just figure I am at that age where Dr's start to torture you?

I have friends my age seeing heart Drs, popping pills, another on diabetes medicine, another is taking pills for lupus, I can keep going with everyone's illness.

I personally do not want Chemo and Radiation. It is my understanding from what I been told by several Dr's only is that needed when it lymphoma proposes a problem. I several friends too with various lymphoma one lady is a stage 4 with crazy blood work. Se feels fine all the time even after of 4 years of bad blood work. No symptoms other than that. She also has an enlarged spleen. They are still watching her. Dr's said there is no need for Chemo at this point.

So honestly I do not understand the treatment. How they choose certain people to give chemo, and radiation too? Or why Dr's all scan people differently?
I figure the longer I have to wait, the better there is a chance, to finding a cure.

Jackie

@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