Non Hodgkin's Lymphoma- Watch & Wait Approach

@elainejarrett I am on watch and wait with CLL/SLL; diagnosed Jan 2023. MRI/CT scan show enlarged lymph nodes and ground glass nodules on lungs; seeing a respirologist next week. PET scan being scheduled; it is a worry for sure; i feel the same as you.

It is a worry but, hopefully, our situations do not get too bad and treatment will work, when we need it. I get scared and overreact every time something different shows up with my health. Let's keep in touch.

Yes ladies it is scary at times and the watch and wait is a little hard on us but the most important is to keep a positive attitude. Never give up is the best motto I know. I have been at this since 2005 when diagnosed.

@quimbie ; morning; can you tell us abit about your health history since 2005...are you still watch and wait? have you had any treatment thus far? you are right about attitude altho when new 'things' come up its hard to not let your mind wander...thanks so much

Hi, I was diagnosed with NHL after a dermatologist removed a tiny pea size growth under the skin on my right temple. It was a shock. I was offered to hit it “with everything they had”. I chose to see a diff nhl specialist who said the longer i could hold out for tx the better. He said if i felt good i was good. Been great for 10+ years. (Lifestyle changes for sure) Now post Ian in SW Florida lots of stressors. I felt a small lump under my right ear lobe in late January. Kept feeling it, researching. Went to my specialist I see once a year who ordered ultrasound. Appears to be a parotid tumor. Not sure if this will be treated as a nhl or the typical parotid tx.

I had 9months of chemo and then another year and a half of chemo every other month during that time. Had the last chemo at the end of 2011 or the first of 2012. No treatments since then but see an oncologist once a year now and a cat scan once a year. This year saw him in Feb. but now they want another cat scan in July and a visit as the last cat scan was ok but with a few ( I call blips) on it. I feel ok and have no issues with this as fighting against what was osteoporosis but got it back to osteopenia with some supplements and vitamins and a lot of prayers. I feel blessed to be in as good as shape as I am. Lot of aches and pain and the knees are shot but still going. Hoping to have knees replaced soon. Only problem with the NHL is knowing you have it.

My platelets started to drop end 2019. After lab work in 2021, doctor was concerned and January 2022, I had a bone marrow biopsy and aspiration and CT scan which confirmed I had non Hodgkins low grade B cell Lymphoma/Leukemia. I have blood work done every 6 months but my oncologist did not want to put me through a yearly CT scan as I am still feeling OK in myself. I winter in Florida and go back to Minnesota where I see another oncologist who may want me to have that CT scan. I don’t like the radiation a CT scan gives off either but understand why they need to get done. I am on a watch and wait. Keep in touch please.

My father died in 1990 from NHL, fortunately the science/treatment is so much better now. Hope you have many years.

Thank you. So sorry to hear about your father.

Thats so great and encouraging to hear! I also have osteopenia.....I have a PET scan this Monday; i saw a respirologist yesterday; he is concerned about 3 GGN on lungs; if they light up i will have to have a biopsy;; between this issue and CLL/SLL can be consuming..