Non Hodgkin's Lymphoma- Watch & Wait Approach

@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

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

@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

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

@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

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.

I just want to check in with all the Lymphoma Warriors out there. How is every feeling lately?
@bordercolliecra @susanlim @ginpene05 @vonbaron36 @njnana @stephaniet @vcollins @chuck218 @beckyjohnson @scootermckim @vanveer21 @mrsalvingraves3 @zellheff @pammyzammy @roberthall0452 @dianebumbach @sograteful
I recently moved and been on and off the last few months. Doing new house stuff and work has picked too.
I haven't had chance to see how you are all doing?
I been tired like usual but not sure if its from moving, working or a toothache I been dealing with.
Both me and my husband have had issues since going to the dentist to get our teeth cleaned. UGH.. Nothing worse than a toothache.
How have all your check up's been going?
I do hope you are all doing well?
Jackie

Thank you for asking. Still on watch and wait. Hot flashes that sometime worry me—don’t know how to distinguish them from possible lymphoma sweats. ?? Some ups and downs psychologicalky, but manageable. Good luck with the tooth!

Same here, follow up scan detected no growth of nodes in last 6 months. Blood count was excellent. The way I understand the sweats is that they need to be really severe before having to worry about it, like waking up soaked to the extend that all your clothes and bedding need to be changed. Picked up my exercise regimen a little, bought a kayak so me and my son go places where no man has gone before in the swamps in GA, started biking again, still play tennis and go on hikes. And quit smoking, vape a little to take the edge off initially, but am at 6 weeks without a cigarette after 45 years of doing that nasty stuff. Considering getting a second opinion though about my FL. I don't like an oncologist being in control of my future. Thanks for asking.

Congratulations on your new home, Jackie! It sounds like you may have an infection in your mouth, so it would be a good idea to get checked in case medication is needed. I have been stable and continue on 'watch & wait'. I return to the oncologist for a 6 month exam in late September. My obvious symptom continues to be the fatigue. The heat and humidity make it worse at this time of the year. I just know I need to be disciplined and go to bed at a reasonable hour. Hope you are doing well other than the toothache, which will hopefully be gone quickly!