Non Hodgkin's Lymphoma- Watch & Wait Approach

Posted by Jackie, Volunteer 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

Liked by beckyjohnson

@sograteful Swollen glands does not always mean lymphoma. The three major symptoms when it is active is drenching night sweats, weight loss without trying and a fever that will not go away.
In order to find out why my lymph nodes swollen? They have to biopsy the fluid inside of the swollen lymph node. Then they will do a Pet Scan and if the lymph nodes light up on that scan. The biopsy confirms the type of lymphoma. Which is what they did to me.
Then every 3 months for the first year they want blood work and CT Scans. So they can watch what the glads are doing. Mine shrunk with each scan.
Then they move you out to every 6 months. blood work and Ct scans. If it all looks stable. You get moved to 1 yrs. scans and every 6 months blood work.
After 3 years if everything is stable you visit the Hematology Dr. once a year.
I am guessing will go on, till we are 110 years old?
Cause with some lymphomas you can live that long. 🙂

I wish you the best..
Jackie

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Thank you so much Jackie. It's so informative to hear the actual diagnosing procedure from a veteran.
I also imagined that there would have to be more than swollen glands. I weigh little anyway – 98lbs at 5.3in. I did lose a little more in the fall. Now I am back to normal.
I really would have not rushed to "investigate" at all, but I see this doc anyway, every 6 months, so I am bracing myself for April 1st. He seemed concerned in September.

I wish you a lifetime more of symptom free, great health.

I will keep you posted on what the doctor decides.

Thank you again..
Bridget

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@sograteful

I have an appointment with my endocrinologist on the 1st April. 5 months ago, he noticed that I had swollen glands in my neck. I see him every 6 months as I have hypothyroidism. I had a bout with tonsillitis last summer, and they have been swollen since then.
Long story short, he said he didn't like the feel of my glands, particularly on the left hand side, saying it was more than 2cms. He insisted that the tonsillitis was long over with, and my glands should have returned to normal. He wanted to do an ultrasound and maybe a biopsy. I was leaving for Europe in October, so I postponed.
I feel fine, no night sweats etc, and my blood work was okay in Sept. My glands currently are still swollen. I know he will whisk me in for an ultrasound at my next visit.
I have been reading your informative and enlightening forum. Thank you for sharing your experiences with us all. I really appreciate all the information and advice you offer in such a warm hearted way.

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@sograteful I just wanted to check in and see how your Dr's appointment went on 4/1?
Hope it was all good news?
Jackie

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Thank you so much for checking on me Jackie.
I waited for over 90 mins to see the doc. He spends so much time with every patient. I got an ultrasound on my thyroid gland by the technician. It was okay, no change from last yr. This doc is an endocrinologist, he was talking about a host of other subjects, he gave a quick look at my neck in my thyroid area, and checked my blood work. He didn't examine my neck lymph nodes.
I know the doctor to return to is my ENT who diagnosed my tonsillitis last summer. That's when the swollen gland situation began.
I will be honest, I didn't persue the swollen glands etc with my endo. He seemed to have forgotton his mission last Sept of a biopsy.
He concentrates on my thyroid, and that was okay with me on Monday.
I have to make an appointment with my ENT next. In a way, I was happy to delay the issue for another bit. I know, I am only postponing it. I will let you know what the ENT says when I visit him. I also have discomfort in my diaphragm area, so I will call to make an appnt soon
Thank you so much again..I really appreciate it.
Bridget

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@sograteful Well that is good news. If there was an issue he would of picked it up in the blood work. At least your thyroid is good.
Has the lymph node changed in size? Lymphoma lymph nodes go up and down in size.
I would not worry too much. Wait to hear what your ENT says?
I wish you the Best!
Jackie

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@vonbaron36

Three and 1/2 years ago I had a large tumor on my neck and a small one by my groin, both cancerous.I had radiation on both. A pet scan showed no cancer. There was nothing to do but watch and wait to see if and where it would occur again. I knew my follicular lymphoma was incurable at the time. I did not want to just wait until it came back, and with no other options I decided to research other options on my own. I decided to try curcumin. Over three years later and two PET scans and a CT scan last month found no cancer. I know that it can go into remission on its own, but it makes me feel better doing something that might be helpful. Next PET scan next March.

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Just had my yearly C A T scan. I have a small tumor in my groin area. Too small to treat. Will wait six months and have a P E T scan to see if it grows or has moved.

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