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

@kittykiernan

I know I have this from my chronic Epstein barre virus plus had breast cancer Barca 2 positive, have every symptom, I feel like I’m dying and NO one will test me for this

Jump to this post

@kittiekiernan Have you been examined and tested for this? If your primary dr will not refer you to a specialist, can you appeal to your insurance for help?
Ginger

REPLY
@gingerw

@kittiekiernan Have you been examined and tested for this? If your primary dr will not refer you to a specialist, can you appeal to your insurance for help?
Ginger

Jump to this post

Nope no one does nothing for me

REPLY
@kittykiernan

Nope no one does nothing for me

Jump to this post

Chronic Epstein barre causes it , I have it and I am brca 2 positive had full mastectomy and hysterectomy

REPLY
@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.

Jump to this post

Can you tell me what dosage of curcumin you used? I hope your cancer stays away!

REPLY

Hi everyone, I have seen now 3 dentists since my last post. I got to tell you all I really despise dentists. The prosthodonist said the crown was not made correctly. I saw her 3 times.. she shaved to tooth down 3 times. The endodontist monitored the tooth and prescribed a rinse sooth the gum line and tooth. He thought the tooth was ok but the crown didn't fit right. The prosthodonist called the original dentist to tell him the tooth was not properly fitted and that he needed to redo the crown. Then that would result in a root canal. So the original dentist I went back to today. He decided to put a seal around the tooth and shave it down even more. Let see now if this works before he yanks it off and remakes the crown? This is complete torture.

REPLY
@susanlim

Why are people with no symptoms getting ct scans once a year? This exposes the body to radiation. What is the purpose?

Jump to this post

@susanlim I agree but I think it gives them an idea if the disease is stable or becoming aggressive ?

REPLY
@kittykiernan

I know I have this from my chronic Epstein barre virus plus had breast cancer Barca 2 positive, have every symptom, I feel like I’m dying and NO one will test me for this

Jump to this post

@kittykiernan so sorry to hear. Who diagnosed you with Epstein barre virus? Can you go back to that Dr? Will he help you?

REPLY

@vonbaron36 I been on a Watch and Wait since January of 2016. I dont feel or see any swollen lymph nodes. Mine lymph nodes they r waiting r near my Aorta. That is a good sign you could be on watch and wait your whole life. 🙂

@gingerw Hi Ginger, nice to meet you. I been swamped with work and my move. Don't believe you and I have chatted yet.
What made the new doctor diagnose you with lymphoma? I am not familiar with MGUS. Is that a Lymphoma? Now did the Doc say what exact kind of non-hogkins lymphoma you have? There are about 65 different types associated with this disease. You also mention kidney disease. Is that a complication from the MGUS? How is your blood work?

REPLY
@travelgirl

@kittykiernan so sorry to hear. Who diagnosed you with Epstein barre virus? Can you go back to that Dr? Will he help you?

Jump to this post

My primary

REPLY
@travelgirl

@vonbaron36 I been on a Watch and Wait since January of 2016. I dont feel or see any swollen lymph nodes. Mine lymph nodes they r waiting r near my Aorta. That is a good sign you could be on watch and wait your whole life. 🙂

@gingerw Hi Ginger, nice to meet you. I been swamped with work and my move. Don't believe you and I have chatted yet.
What made the new doctor diagnose you with lymphoma? I am not familiar with MGUS. Is that a Lymphoma? Now did the Doc say what exact kind of non-hogkins lymphoma you have? There are about 65 different types associated with this disease. You also mention kidney disease. Is that a complication from the MGUS? How is your blood work?

Jump to this post

@travelgirl Hi Jackie. Two years ago I was told I had MGUS, and believed that, with quarterly bloodwork. In December 2018, my hematologist-oncologist said "let's go 6 months this time, since everything seems to be looking good". In June my bloodwork came back wonky; it was also right at the time of moving out of state. A PET CT scan and appt with new h-o here, and he told me "oh, I see you were diagnosed with low-grade Non-Hodgkins Lymphoma 2 years ago". I went back and read the very fine print of that first bone marrow biopsy and saw what he did, but my old dr never told me, nor followed up with suggested additional testing. In less than 2 weeks I get another biopsy. He also ran testing to tell me what kind of lymphoma it is, but haven't gotten the results yet. My kidney disease was diagnosed in 2015, and is ideopathic, very rare; my GFR is about 32%.
Ginger

REPLY
Please login or register to post a reply.