Non Hodgkin's Lymphoma- Watch & Wait Approach

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.

I should add that while the old enlarged nodes in armpits (not palpable) and neck are unchanged, two new enlarged nodal tumors were found on the sides of my abdomen, about 1.5 cm. They are not causing me any problems and do not change my status, according to the doctor, who has treated FL patients for over 30 years. Still low grade indolent, still watch and wait. I would be happier if it hadn’t spread to below the diaphragm, and this depressed me for a bit. But I’ve had to let it go. I have no symptoms, need no treatment, and must get on with life.

@susanlim Glad you are doing well. I was told the night sweats have to be drenching where you need to change the sheets and your clothes. Worse than a so called hot flash.
@vanveer21 I am happy all is good. I need the energy to head to the gym so bad. I been really bad with move. Only getting to the gym 1 or 2 times a month. Ugh. Been walking the dog but not enough it has been brutal hot outside. Good Job for quitting smoking. It has been 4 years for me now since I quit smoking. I do hate the 15 pounds I put on. I cannot seem to get rid of it.
@njnana having no energy is a problem. I take forever to get out bed each morning. If I could just jump up and go to the gym each morning. That would be good. When I overly exhausted I drink a sugar free red bull. That seems to help give me a boost of energy...I agree on the heat and humidity here. Even my Dog cannot handle it. Last week I took her for a walk and she couldn't handle the humidity. I had to call my husband on the phone to come and pick us up. She drank a bottle of water i brought along and just was panting so bad she couldn't even walk. So I get it I wanted to lay down myself. LOL..
@sograteful Awww your poor Kitty.. Nothing worse than a sick pet you feel helpless trying to help. Hopefully the dermatologist can help you heal your sore.
My mouth is killing me right now. Tomorrow morning I see another dentist. He will be able to tell if I have an infection I hope?

Thank you all for responding. It is always good to hear we you are all doing great for the most part.I hope to hear from the rest I tagged in our feed. We give each hope by staying in touch every few months. Strange as it maybe a toothache makes me wonder if this is caused by Lymphoma? I think hmm is there a glad swollen in my or something? Having a chronic illness makes me wonder with everyone ache and pain I get.

Talk soon.
Jackie

Hi Jackie. I just saw your reply of last April. I am still the same. I have the enlarged glands in my neck. I have also developed a small red lesion on my left lower leg. I really don't know if it is related to my gland issue. It initiated about 4 months ago. I have applied cortisone cream, but it persists. I have never had anything like it before. Other than that I feel fine, no night swears or weight loss. I will go get this lesion looked at, and see what the dermatologist says. We have a health drama with our cat, she at 11 yrs old has developed seizures. So it's been weeks of investigation and treatment, that has taken up all my time this summer!
Enjoy your new home. We moved 2 years ago, I know how exciting but also fatiguing that is. Good luck with your tooth, my husband is going to see our dentist tomorrow for an emergency dental problem, teeth can be a pain, literally. Keep us posted..
Bridget

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!

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.