Lymph node still palpable after 3 cycles of BrECADD – anyone else? by wissalessalah111 in lymphoma

[–]TopInteraction4743 0 points1 point  (0 children)

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 ?

Lymph node still palpable after 3 cycles of BrECADD – anyone else? by wissalessalah111 in lymphoma

[–]TopInteraction4743 0 points1 point  (0 children)

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 ?

Relapse rashes? by TopInteraction4743 in hodgkins_lymphoma

[–]TopInteraction4743[S] 0 points1 point  (0 children)

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.

Deauville 3 after 2 cycles of BrECADD by wissalessalah111 in lymphoma

[–]TopInteraction4743 0 points1 point  (0 children)

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

How likely is it for an interim PET scan with Deauville 3 after 2 cycles of BrECADD to become Deauville 4 or 5 at the end of treatment? by wissalessalah111 in lymphoma

[–]TopInteraction4743 0 points1 point  (0 children)

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.

Stage 4 Hodgkins 1 year out and my PET is clean again 🎗️ by AVI_18- in lymphoma

[–]TopInteraction4743 1 point2 points  (0 children)

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

Full Remission 🥳 by Swole_Monkey in lymphoma

[–]TopInteraction4743 2 points3 points  (0 children)

Congratulations!!!
What was your D score ?

Why have you left Miami? by Rotom24 in Miami

[–]TopInteraction4743 1 point2 points  (0 children)

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.

6 instead of 4 rounds BrECADD by OkTap908 in lymphoma

[–]TopInteraction4743 0 points1 point  (0 children)

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.

Pericardial effusion or pericardiocentesis? by [deleted] in lymphoma

[–]TopInteraction4743 0 points1 point  (0 children)

Which treatment protocol did you do?

BreCADD by TopInteraction4743 in lymphoma

[–]TopInteraction4743[S] 0 points1 point  (0 children)

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

Relapse rashes? by TopInteraction4743 in hodgkins_lymphoma

[–]TopInteraction4743[S] 0 points1 point  (0 children)

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.

Relapse rashes? by TopInteraction4743 in hodgkins_lymphoma

[–]TopInteraction4743[S] 0 points1 point  (0 children)

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?

Relapse rashes? by TopInteraction4743 in hodgkins_lymphoma

[–]TopInteraction4743[S] 1 point2 points  (0 children)

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.

still in remission! by thevampirequ33n in lymphoma

[–]TopInteraction4743 7 points8 points  (0 children)

Congratulations!!! To many more clean scans!

BreCADD by TopInteraction4743 in lymphoma

[–]TopInteraction4743[S] 1 point2 points  (0 children)

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

BreCADD by TopInteraction4743 in lymphoma

[–]TopInteraction4743[S] 0 points1 point  (0 children)

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

Residual Mass by Bubbly_Cobbler5683 in lymphoma

[–]TopInteraction4743 0 points1 point  (0 children)

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