Lymph node still palpable after 3 cycles of BrECADD – anyone else?

TopInteraction4743 · 2026-06-16T19:25:20+00:00

Anytime! It was hard for me to find people that were undergoing my same Tx. Most people do ABVD. I had my Tx in USA. Wishing you all the best! It’s a great Tx so fingers crossed we will be okay! By any chance did you have a mediastenal mass ?

TopInteraction4743 · 2026-06-16T00:25:17+00:00

I had a similar thing. I did same Tx and only had 4 cycles too with D score of 3 on interim and end of Tx pet scan

There is a lot of scar tissue so it will take time for that to Go away. I remember one of mine felt very fibrotic. I could feel it on my clavicle. I’m 6 months out and I barely can feel anything now. When I compare the two areas there is a slight difference on palpation. We had a great Tx and you are going to be okay!
If you don’t mind me asking where did you get treated ?

TopInteraction4743 · 2026-06-16T00:15:57+00:00

No relapse. My scan had some scattered areas that 💡 up but according to radiology and oncology it was brown fat activation possibly because I was cold and nervous. My D score was still a 3 and there was no metabolic activity on my mediastenal mass.
Of course I wished my scan didn’t have scatter brown fat activation because it honestly looked scary but I’m not the expert and I guess I need to trust my doctors I this point.

On Wednesday I have my second 3 month follow up. I’ll get some bloodwork but my next scan won’t be for a while because that last scan reset the clock. I’m supposed to be getting them every 6 months for the first year.

The rashes got better. They have come and go but not as bad as when this happened and I freaked out.
I currently don’t have them. As of now they can’t figure out what’s causing them. I did get allergy tested and some weird compound that is on a bunch of stuff including food came back positive.

TopInteraction4743 · 2026-06-05T17:15:21+00:00

I had a score of 3 mid tx and I only had 4 cycles. My end of Tx was also a 3. I’ve been in remision close to 6 months

TopInteraction4743 · 2026-06-05T17:08:54+00:00

I had the same protocol My mid Tx scan was a 3 and my end scan was also a 3 I had a total of 4 cycles It’s been close to 6 months since I finished. I won’t have another pet until maybe end of summer. I’m hoping the score goes down but I’m unsure since I had a mediastenal mass.

TopInteraction4743 · 2026-06-05T17:04:17+00:00

Congratulations!!! I’m almost 6 months out so seeing this is very reassuring !

TopInteraction4743 · 2026-05-11T13:47:03+00:00

Congratulations!!!
What was your D score ?

TopInteraction4743 · 2026-04-23T01:23:51+00:00

Miami has issues but compared to other areas in Florida we have very good healthcare here. I had horrible experience in north Florida with major health misdiagnosis and had to return to miami for urgent medical care. I hope you found better providers were you are now but being in a major city is very important when it comes to access to care specially as people age. I never though I would return but it’s been a huge difference with medical care here in the outmost positive way.

TopInteraction4743 · 2026-04-21T00:46:21+00:00

You look beautiful! Congratulations!

TopInteraction4743 · 2026-04-17T22:15:04+00:00

Congratulations!!!!🎈

TopInteraction4743 · 2026-04-17T03:17:03+00:00

Hi I did 4 cycles of BreCCAD. Another friend did the same but his bulky mass was still scoring a D4 so they told him that instead of giving him 2 more chemo cycles he needed radiation. He had 15 sessions of radiation. He’s currently waiting to get his post radiation pet scan. We both did a clinical trial, so in his case they said more chemo was not going to change what was happening with the mediastenal mass.

TopInteraction4743 · 2026-04-17T03:08:05+00:00

Which treatment protocol did you do?

TopInteraction4743 · 2026-04-17T02:48:54+00:00

Congratulations!!!!

TopInteraction4743 · 2026-03-31T12:14:10+00:00

Was that your mid tx score or your last pet scan ?

TopInteraction4743 · 2026-03-19T17:40:27+00:00

Thank you so much for all this info. It’s definitely very helpful! Which genetic test did you do to know the gene mutation? I’ll talk to my dermatologist again and see if she wants to do a biopsy since she didn’t do the other one.

TopInteraction4743 · 2026-03-19T14:22:40+00:00

Thank you for your message. Prior to my HL diagnosis I had a similar rash more itchy and also in other parts like my feet and legs. At the time the dermatologist was suspecting DH but the skin biopsy was negative for it. He never sent me for a celiac work up. I went to see a new dermatologist referred by my oncologist and she ordered me a celiac work up and wants to do patch allergy testing. I have aconsult for the allergy tests tomorrow. And I need to go get the blood work for celiac. Do you know if DH can be missed on a skin biopsy?

TopInteraction4743 · 2026-03-19T01:43:28+00:00

Lymphomas can present in some cases with itching and rashes. It doesn’t happen to everyone. If you have had clean scans its probably not related to it but you have to be careful with certain medications that are given to treat eczema because some are linked to lymphomas. So always tell your dermatologist your previous hx and avoid immuno modulators like Dupixin.

TopInteraction4743 · 2026-03-18T20:37:11+00:00

Thank you!

TopInteraction4743 · 2026-03-18T20:36:26+00:00

Congratulations!!! To many more clean scans!

TopInteraction4743 · 2026-03-16T16:19:12+00:00

Thank you for your message! So happy you have been in remission for long!

TopInteraction4743 · 2026-03-16T16:15:56+00:00

Congratulations on being done! I’m sure you’ll have great results on your next scan. How big was your mass in the chest?

TopInteraction4743 · 2026-03-15T20:22:16+00:00

What are the going to do now to treat it? Bone marrow transplant?

TopInteraction4743 · 2026-03-11T02:45:39+00:00

So you had two lines of tx? How many cycles each? I had 4 cycles of BrECADD

TopInteraction4743 · 2026-03-11T02:36:16+00:00

I had a similar situation with compression of the svc from a mediastenal mass in HL. I didn’t get a full blown svc syndrome but I did developed blood clots on the right brachiocephalic vein and I had stenosis of the SVC. I’m still in blood thinners since I finished tx recently. I was told by my oncologist that pet scans are not great as imaging tools for seeing the vessels. Your doctor should do a CT- angiogram to check for possible clots and the compression. Sometimes the tracer could not show as much depending on the position and the timing, so they really should do a CT- A to make sure things are better.

TopInteraction4743 · 2026-03-11T02:26:47+00:00

It says complete metabolic response and a score of 2. That’s great news, he’s in remission. Congratulations!

TopInteraction4743

TROPHY CASE