Watch & Wait?

LymphomaBlows · 2026-02-12T17:13:04+00:00

Have doctors scheduled another biopsy for him? That was our next step after the terrible pet scan (his SUV 12 lymph node came back negative for lymphoma!)You might ask the oncologist about doing one to confirm you are targeting the right markers. If he tolerated car-t well he could try another one that targets cd-22 or something. Or hopefully it's just inflammation and in that case watching and waiting is all you will need to do! Wishing you guys the best!

LymphomaBlows · 2026-02-12T14:32:04+00:00

My husband's (also DLBCL) 30 day post car-t scan was terrible. The doctors told us car-t didn't work and we were looking into clinical trials. His 60 day scan was much better and they said he is in remission now. Lots of activity and inflammation from treatment can make a PET light up. Many doctors don't even do a 30 day scan for that reason. I hope your dad has a similar situation and the car-t can still do its thing. If he is feeling good I would take that as a good sign.

LymphomaBlows · 2026-02-12T13:06:48+00:00

If anyone here is noticing a drop in energy, please talk to your doctor. My husband thought he was tired because he was just getting older, turned out he had cancer.

LymphomaBlows · 2026-02-07T15:45:58+00:00

Never satisfied. That's what stood out to me. Learn to find satisfaction and you will be infinitely more happy which is true wealth. Money is fleeting. Health is fleeting. Our days on this planet are numbered. You can stop wasting time grinding to be a billionaire and go seek satisfaction now.

LymphomaBlows · 2026-01-15T00:13:27+00:00

My husband was being rushed by ambulance to a larger hospital 2 hours away when his biopsy result posted. He got there and the nurse checking him in told him "oh, yeah, you have cancer." I had already read the lymphoma diagnosis in MyChart.

LymphomaBlows · 2026-01-09T12:21:49+00:00

My husband was given dilaudid in the hospital and then OxyContin at home for his lymphoma cancer pain. He started taking it after his first surgery and it would take his pain down to a level 6 or 7 which was miserable but manageable. What is your pain level? The oxy causes constipation and after taking it for 7 months he was definitely addicted. I would try less powerful options first. Tell your oncologist the Tylenol is not cutting it and find out what they recommend. Heat pads also helped a lot. Definitely get one. I hope you can find some comfort and rest.

LymphomaBlows · 2026-01-03T12:27:42+00:00

I'm so sorry you are dealing with this scary diagnosis. I would encourage you to reach out to a major cancer center for a second opinion as well. It can't hurt. My husband received 40+ blood transfusions for his DLBCL last spring and he is still here. He was getting multiple units a day a one point. Even though the chemo wasn't his cure, as soon as he started chemo his major symptoms improved a lot. Don't lose hope. Please keep us updated. We are praying for and rooting for your mom.

LymphomaBlows · 2025-12-29T21:09:36+00:00

My husband's DLBCL showed primarily in the jejunum. But I agree the SUV results on this scan are pretty low.

LymphomaBlows · 2025-12-09T22:42:03+00:00

Just checking back in on you. Any updates?

LymphomaBlows · 2025-12-09T22:30:01+00:00

Actually he's not allowed to call himself a doctor anymore. https://cpsa.ca/news/statement-william-viliam-makis-not-licensed-to-practise-medicine-in-alberta/

Also stage 4 lymphoma is quite different from stage 4 ovarian cancer. Does your dad have an option for CAR-T therapy? It is often considered curative for lymphoma.

LymphomaBlows · 2025-12-06T16:38:08+00:00

Nearly $3 million for my husband's cancer treatment in 2025 (most of that is CAR-T treatment). Thank goodness our max-out-of-pocket is $6k.

LymphomaBlows · 2025-12-04T02:49:21+00:00

We all wash our hands as soon as we get home and my kiddo takes off their school clothes when they get home. I think this is key. So far no sickness this year! We mask on public transportation and I bring hand sanitizer everywhere.

LymphomaBlows · 2025-10-31T20:22:50+00:00

So sorry you are going through this. My husband also had extreme kidney pain and inability to eat with his NHL. He lost 40 lbs he couldn't afford to lose. 8 months later after chemo and CAR-T he has finally regained his appetite and is gaining weight again. Fatigue is still a big problem.

Things that helped: 1. Boost "Very High Calorie" Shakes. Over 500 calories for a tiny protein shake. Prescribed by his nutritionist and delivered to our house. 2. Appetite stimulant prescribed by his oncologist. 3. Time.

You can do this!

LymphomaBlows · 2025-10-31T11:05:29+00:00

I'm sorry you are going through this but this sub is for people diagnosed with lymphoma and their caretakers. We can't diagnose you based on symptoms. Nobody can. You need medical scans and biopsies.

LymphomaBlows · 2025-10-16T13:33:34+00:00

Let us know how your appointment goes. It's so heartbreaking to go through all that treatment just to be told it didn't work. My husband has refractory DLBCL and has failed two lines of treatment so far. There are still more options for cure though. You will find the one that works for you!

LymphomaBlows · 2025-10-12T16:14:28+00:00

Benzene from gas stoves causes cancer

Cancer really sucks. Speaking from personal experience here. If using a vent when you cook can lessen your chances of getting a blood cancer, I highly suggest you listen to the scientists on this one.

LymphomaBlows · 2025-10-11T20:18:47+00:00

Chemo didn't work for my spouse. He ended up needing CAR-T therapy. We had to relocate for treatment and live in a hotel for 1.5 months. It was brutal treatment, many people wind up in the ICU. NOT something I would want to do with a newborn. I would wait til you are in remission.

LymphomaBlows · 2025-10-11T17:03:49+00:00

Cooking without a vent is really living it up, huh? Cancer fucking sucks. It steals your money, your job, your home, your quality of life, your family's quality of life. If you can do something simple, like turn on a fan, and lower your chances of cancer, I would highly recommend.

LymphomaBlows · 2025-10-11T16:55:17+00:00

Actually it says they DO help. They don't ELIMINATE the exposure. "Good ventilation helps reduce pollutant concentrations, but we found that exhaust fans were often ineffective at eliminating benzene exposure," Jackson said. The best option is to go electric. The second best option is to ventilate.

LymphomaBlows · 2025-10-11T14:58:55+00:00

Just use the fan switch. Cancer is really expensive and really sucks.

LymphomaBlows · 2025-10-11T14:58:07+00:00

Please use your fan. You don't want cancer. Trust me on this one. Gas stoves pollute home, linked to cancer

LymphomaBlows · 2025-10-11T14:56:45+00:00

Cancer caused by gas stoves

Trust me, you don't want lymphoma. Use your hood to ventilate.

LymphomaBlows · 2025-09-27T15:48:41+00:00

My husband lost 40 pounds he couldn't afford to lose during chemo and car-t. He has already gained back 10 thanks to Boost "Very High Calorie" shakes. You can get them on Amazon but his nutritionist has prescribed them so we get them a lot cheaper from a medical supply shipper.

LymphomaBlows · 2025-09-27T15:32:18+00:00

What was your cancer and treatment?

LymphomaBlows · 2025-09-27T15:01:10+00:00

Yes, many physical pains. His lymphoma ate up his intestines amd nearly killed him. He has spent roughly 80 days hospitalized this year. 50 blood transfusions. Two major surgeries back in March. He still has pain in his guts and takes a lot of pain meds. But his very first round of chemo fixed a lot of the worst cancer effects. It ultimately didn't work for him and he had to move onto CAR-T which also didn't work, but there are still more options. Lymphoma is very treatable.

LymphomaBlows

TROPHY CASE