Non Hodgkin's Lymphoma- Watch & Wait Approach
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
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You need a second opinion from another dentist. Cracks in teeth usually do not show up on X-Rays. Telling you to relax while you sleep to ease up on the pain is ridiculous - it is unconscious - you cannot control the stress in your jaw like that. I used a bite guard (dentist-made) for years, but only really got relief from a new dentist who adjusted my bite by filing down a tooth which was throwing my bite off. She also sent me to jaw therapy with a PT (yes, there really is such a thing), and putting me on a soft diet for 6 weeks to rest my jaw.
I have been watching a small node in my groin for six months. In two weeks I will have a PET scan to see if it has grown or metastasized. Will let you know the results.
Why are people with no symptoms getting ct scans once a year? This exposes the body to radiation. What is the purpose?
The dentist (or a more skilled one) should be able to make you a special anti-grinding retainer to wear at night. They make them now if lightweight clear plastic. But it must be properly done, or you will grind more. It will discourage grinding and protect your teeth.
So I went to the dentist today. He claims nothing wrong with my tooth he can see. the xray looks normal. Tooth looks fine. He thinks it is traumatized from clenching down so hard from grinding my teeth. I may have a possible crack that they would need to do a root canal. But to hold off. Cause the pain is not constant.
He wanted to know if I was stressed or nervous about anything in life? Me, No not at all being diagnosed with 2 primary cancers two weeks apart. Why would I be stressed and nervous? I go well I suppose this is a side effect of having Lymphoma and cecum cancer? You grind the hell out of your teeth...
Seriously anyone else have issues with grinding teeth ,so bad while they sleep they end up, with a sore jaw, and teeth clanging together so bad it hurts to eat?
They told me to take 2 advil when my mouth starts to hurt. Try not to bite down on the left side of my mouth.
It hurts so bad I barely ate last week... UGH These Dentists are torturing me..
Any advice besides putting whiskey on tooth? That what my friends said to do.. LOL..
Thanks
Jackie
Hi Bridget,
I read your message about the small red lesion and wanted to share my experience. I wanted to let you know about an autoimmune disease I have called Morphea, a localized scleroderma. It first appeared as a faint red rash about the size of a quarter on one shin & eventually on the other several months later. Over the next year, the faint red become brighter and then looked like a bruise. It did not hurt, itch or burn. I knew I had not caused the bruising. After it began to spread toward my knees, my concern became greater, I pointed it out to my primary care physician who sent me to a dermatologist who monitored the 'rashes' for the next few months. He biopsied the middle of this rash on one shin and the pathology report showed the Morphea. This dermatologist continued to tell me I was 'a very lucky gal' as the only other patients (3 total) he treated for Morphea also had an underlying disease. Fast forward 5 years since that diagnosis.....my lymphoma was diagnosed in 2015. All oncologists with whom I have met believe the lymphoma existed for several years before the diagnosis was made. My intent is to not scare you, but definitely have your primary care doctor and oncologist take a look at the rash. If they don't think it is a big deal, you may still want to have a dermatologist check it. I hope it clears up and disappears for you.
Thank you. I believe the body has 600 lymph nodes. So I can’t worry all the time about 6 or so I know are enlarged.
If you can get to the gym it might help with the fatigue
wish you the best. many more years on W & W
Good to hear you all. I have been on wait and watch since diagnosis of CLL last year. Like others, I share in the fatigue factor. Blood tests today and oncologist next week. Very fortunate indeed. It really helps to read your posts. Haven’t been to gym in three months . Foot fracture healing and boot /cast/ knee scooter is finally over with. No complaints because I have you all to identify with. Quiet time/meditation, whatever keeps it simple helps a lot. Hugs to all.