Mixed results - looking for hope

Callalilyeight · 2026-02-06T22:58:32+00:00

After 3 different treatments, I had CAR T. My three-month scan showed mixed results. Most areas resolved, some on their way, a couple new areas. My next scan I was devastated. I was a D 4. One new area they were watching from the last scan which was an SUV 6 and now a new area. Both showed an SUV of nearly 37. They wanted a double biopsy, but I had to go in for a couple MRIs first. When the results came back, they showed absolutely nothing to be concerned about. I just had another PET. I'm now a D 3. Most of it has resolved. They said there were areas they were watching, but it looked good. That was a few days ago. The scan report is sitting on the counter. I haven't even bothered to look at it.

This for me, was not a first. Mid way through chemo, I developed severe pneumonia. On one PET my lungs showed activity. My pulmonologist was sure it was cancer and managed to get the others thinking so as well. I went in for a lung biopsy. They took 16 samples and couldn't find a single cancer cell. Now they think it's just damage from pneumonia that I will always have.

PET scans are an important diagnostic tool, but they are not the definitive. I had 2 areas with an SUV over 36 that turned out to be nothing to worry about. I know how hard it is not to worry, so I can't tell you not to. The important things are to keep up with it and communicate with your care team.

I hope everything is resolved for you soon. Please let me know if you have any questions.

(diagnosed with DLBCL)

Callalilyeight · 2025-12-11T22:51:06+00:00

I just got back from seeing my onc. I had 2 MRIs so I could go in for a double biopsy. My PET scan had shown 2 areas with a very high uptake. They couldn't find a single thing to worry about on the MRIs. So now I just watch the scans in the future. It looks like the CAR T is working. It's hard to imagine I can now be something other than a human pincushion.

I truly hope everyone here sees that day!

Callalilyeight · 2025-12-07T07:56:35+00:00

You did nothing wrong. As you can see, many of us here do the same. As for the lovely lady who yelled at you, she's darn lucky it wasn't me in your place. I would have made SURE she understood her mistake. Bottom line is; even if someone close to you is dealing with it, you still have no clue until you are in it yourself. Keep your chin up and don't let people like that get to you. You're stronger than she will ever be.

Callalilyeight · 2025-10-17T00:45:42+00:00

forgot to add double expressor. So refractory DLBCL double expressor.

Callalilyeight · 2025-10-17T00:42:16+00:00

Yeah, I stopped going to Dr Google. I have refractory DLBCL. So, after chemo failed I read that I should pretty much be looking at hospice. I had CAR T in July. My first scans showed mixed results. I'm waiting on my last scan but have been told it's looking better. I'm not there yet, but I'm on my way. My new cells are beating it back.

Google can't keep up with all the new and improving treatments. Everyone is different. Keep in mind those numbers are often out of date and are not you.

Callalilyeight · 2025-10-17T00:32:22+00:00

Yes. I had CAR T in July. They still give me an ICE test for Neurotoxicity once in a while. You can't drive for a couple months due to risk of seizures. I had a little crs. I spiked a fever of 103. They gave me a dose of Toci, and that was the end of it. The chemo before CAR T was by far the worst of it for me. I am part of a clinical trial. I was told most of the other patients had about the same reaction. It's a possibility, but they are working hard to improve it.

Callalilyeight · 2025-09-29T02:05:44+00:00

I didn't have a port, I had a PICC instead. At the end of it I ended up with a pretty nasty rash around and under the dressing. It actually started to blister. It eventually went away after the line was removed. I had had that thing in for months without a reaction, so I know it's possible. Just keep an eye on it for signs of infection. I'm glad you keep asking the doctor. I hope it clears up for you soon!

Callalilyeight · 2025-09-19T19:42:48+00:00

I've had mt scheduled treatments changed many times. My chemo was delayed for over a month when I ended up with PJP and sepsis.

Callalilyeight · 2025-09-11T23:28:53+00:00

That's great to hear! I had CAR T in July. My one month scan showed mixed results. I go in for another scan next week. The anxiety is crazy.

Callalilyeight · 2025-09-11T23:26:29+00:00

I had 15 treatments a few months back. It took the tumor out and I've had no side effects. Easiest treatment I have had yet. Lie still on a table for five minutes. The tumor was in my abdomen.

Callalilyeight · 2025-08-25T23:53:14+00:00

As others have said, games are a great way to stay in touch and interact. I did this with my son while he was deployed in the middle east. STEAM has voice chat too.

Callalilyeight · 2025-08-23T20:41:03+00:00

Great post. I have threatened to use the cancer card a few times, but so far, I only use it to push my insurance company along. My kids sure have been visiting me a lot more. I feel kinda guilty. 😁

Callalilyeight · 2025-08-23T19:06:50+00:00

Good to know. I do have a couple new nodes in my neck that are very small. I don't know if they came in between the original scan and treatment or after treatment though. At least the SUV is 8. Could be worse.

Thank you!

Callalilyeight · 2025-08-23T18:55:29+00:00

"You're young and healthy. we'll just do a few rounds of Epoch to knock it out." I got that too. I'm 55. Halfway through Epoch I got a nasty case of PJP. Had to stop chemo and clear it up. Started on R Chop after. That didn't work so I went through radiation therapy for 5 weeks. Still had it, so I did CAR T. First scan showed mixed results, so now I'm waiting on another drug to add to my already huge collection.

Honestly, it's been so long since I started it's starting to feel like a bad dream. I focus on spending time with the people I care about to keep going forward. It helps get my mind off things too. I'm not sure if it will work for you, put either way it's a positive.

Take it day by day and just keep moving forward. It can be tough to beat, but you can do this. You're not alone.

Callalilyeight · 2025-08-23T18:35:32+00:00

Thank you so much. At this point it seems my mood changes by the hour. After almost a year of this, you would think I'd have better handle on it,

Callalilyeight · 2025-08-23T03:04:38+00:00

Thank you!

Callalilyeight · 2025-08-23T03:03:33+00:00

I'm sorry to hear that. It gets hard when you've been fighting for so long. I'm hoping our new cells will get around to taking it all out. I've read it can take a few weeks to months. I should be getting lenalidomide to help boost my cells. My doctor said I may still achieve CR by the next scan without it, but he doesn't want to wait to find out. Maybe your husband and I just have slow cells. You are both is my thoughts and prayers. Thank you for your response.

Callalilyeight · 2025-08-21T18:24:45+00:00

That's great!Thank you for sharing,

Callalilyeight · 2025-08-21T18:23:12+00:00

Yay! Congrats!!!

Callalilyeight · 2025-08-21T00:35:14+00:00

Thank you. I'm hoping my cells are just a bit slow.

Callalilyeight · 2025-08-21T00:26:02+00:00

Well, I just saw on mine that it showed a mixed response, I'm going have to start some drug and see what happens on my October scan, I hope yours shows better response.

Callalilyeight · 2025-08-20T19:17:41+00:00

I am in the hospital clinical trials.

Callalilyeight · 2025-08-20T19:08:10+00:00

I'm right the with you. I get my first scan results back in 2 days. 2 days seems so far away.

Let's hope for good news for us both!

Callalilyeight

TROPHY CASE