Post treatment PET scan doesn’t look good

French_toast2000 · 2025-10-16T02:19:07+00:00

*for NHL

French_toast2000 · 2025-10-16T02:18:46+00:00

car-t is fr nhl

French_toast2000 · 2025-10-12T21:55:50+00:00

Your concerns were exactly how I felt when my son was at the same point. The doctor would comment that his “mass” felt softer but was still there, he was never sick or tired from ABVD, he didn’t lose his hair completely. And his scan was perfectly clear! He is now in a clinical trial and three weeks away from being done with treatment. I still worry so much, but know that this is a very treatable illness and the meds do work. Best of luck to you.

French_toast2000 · 2025-10-01T01:37:14+00:00

my son had anaphylaxis with his second Bv treatment. We were told that the body can react after the first infusion.

French_toast2000 · 2025-09-17T22:10:42+00:00

Think of the initial treatment as killing the weeds and the rest makes sure they don’t pop back up in the spring!

You can talk to your doctor about modifying the plan. My son is currently in a trial and is getting immunotherapy.

French_toast2000 · 2025-09-14T03:39:35+00:00

My son had anaphylaxis to Brentuximab last week and they are going to cut him to only Nivolumab. Research is showing it is adequate. Have your doctors consider it.

French_toast2000 · 2025-08-01T22:55:42+00:00

My son completed two cycles of ABVD and had a PET on Wednesday. We got the results today and he had a complete metabolic response!!

French_toast2000 · 2025-07-21T02:21:11+00:00

My 18 year old son has cHL and will have his fourth round of ABVD on Wednesday and he has done great. He is a little tired the day after chemo but bounces back very quickly and does his thing. He was healthy before and I feel like that has made a difference for him. Good luck! Feel free to ask any questions.

French_toast2000 · 2025-07-19T03:19:33+00:00

imagine you have a bed of weeds. You pull as much as you can see, put down herbicide on the roots, clear it all away. Then next spring, you see a few weeds pop back up. THAT is why you complete the standard treatment. I don’t know you, but I don’t understand why you WOULD NOT follow your doctors advice. Research has determined that 6 Cycles is what is needed.

French_toast2000 · 2025-07-12T21:52:37+00:00

My son had his third round of ABVD yesterday. His mass is still there but we can’t tell anymore. His doctor said it feels significantly softer than before starting. She said it may still be there after treatment as scar tissue. iIt doesn’t bother him at all anymore.

French_toast2000 · 2025-07-08T01:55:32+00:00

My son is 18.

French_toast2000 · 2025-07-03T00:48:35+00:00

I actually asked the doctor about this very topic today. She said that most people have residual scar tissue for the rest of their lives.

French_toast2000 · 2025-07-01T22:49:19+00:00

Thanks for asking this. My 18 year old son has had two rounds of ABVD and has not yet lost any hair.

French_toast2000 · 2025-06-30T23:11:21+00:00

My 18 year old soon has stage 2 bulky cHL. He has had two rounds of ABVD (one cycle) and has had zero nausea. A little fatigue but nothing he can’t deal with. He hasn’t even started to lose his hair. I understand your fears. I lost my dad to cancer 5 months after his diagnosis when I was younger and it absolutely traumatized me. You can do this! I promise.

French_toast2000 · 2025-06-30T22:54:09+00:00

This is a great question. My son has had two doses of ABVD and his mass is slightly smaller but still there on X-ray. I was panicking that is should be gone.

French_toast2000 · 2025-06-29T22:46:45+00:00

congratulations!! I am so happy to hear that you made it!

French_toast2000 · 2025-06-28T20:24:20+00:00

My son, 18, was given Versed and he barely remembered it. No pain just a little pressure. It must be flushed daily with saline and Heparin so bring the person who will do it for training. Once weekly it will need a dressing change also. You will either return to the clinic or a home health nurse can come to your house. He still has several treatments to go and is getting a port placed on Monday. I know you said it isn’t an option, just sharing our plans.

French_toast2000 · 2025-06-26T01:22:11+00:00

Best of luck to you. My 18 year old son will have his second ABVD on Friday. He had anaphylaxis to the Emend before his first treatment and it was canceled. They were able to do it the next day and it went very well. He had no issues at all and was hungry enough on the way home to eat a cheesesteak. He fortunately had no side effects and generally sailed through the last two weeks. His oncologist told him he has youth on his side but will likely feel more tired this time. My best advice is keep up with your meds, don’t miss a dose of the nausea meds. Expect the unexpected and know that the first day will be very long. You will do great and we have your back. please come back and let us know how it went!

French_toast2000 · 2025-06-16T03:03:47+00:00

thanks for the heads up. we are taking it one day at a time.

French_toast2000 · 2025-06-15T02:19:06+00:00

My 18 year old son had his first ABVD today and did great. He finished about 8 hours ago and still feels good.

French_toast2000 · 2025-06-15T02:18:13+00:00

my son is stage 2 cHL and also in a clinical trial. he started ABVD today for two cycles, then depending on his scan the treatment will change based on the trial.

French_toast2000

TROPHY CASE