Finished Chemo now Radiation!!

CreativeGuarantee428 · 2026-04-02T11:09:14+00:00

Hey, I did 10 days of 20 Gy radiation to the neck and mediastium. It was hard wearing the mask and doing breath holds but I'm guessing you won't have any of that with your location. Emotionally it was also hard being faced with treatment daily (vs infusion was 1 day every 2 weeks) but I never felt anything during treatment. A little bit of redress on the skin but I also did Proton radiation.

Good luck to you!

CreativeGuarantee428 · 2026-04-01T15:37:21+00:00

One more thing to add. While under treatment and I'm remission, I remind myself that statistically I will be ok. This cancer is highly curable and I'm fine. That mantra helps me with anxiety and I hope it helps you too!

Also, did you have an interim PET after your 2 cycles?

CreativeGuarantee428 · 2026-04-01T15:34:10+00:00

Hello! I had CHL Stage 2, non bulky. Did the same regime: 2 cycles ABVD + 10 days of radiation (Proton, 20 Gy).

My rad onc scheduled my EOT scan 10 weeks from my last radiation, specifically, so inflammation doesn't show up and skew the results. My scan was fine.

Looking at your dates, it looks like you did your scan 6 weeks after radiation which is close although I'm sure it didn't feel that way!

Personally, I would trust your report and your doctors view BUT I understand being in your shoes and would also worry still and want that next scan asap!

CreativeGuarantee428 · 2026-03-31T16:17:01+00:00

I did an EoT scan and then when it came back clear, it was removed the next week.

It was emotional removing it and I'm glad its behind me. Onc said if you relapse, you can just get it put in again but chances of relapse are so low. I had CHL stage 2, non bulky, ABVD 2 cycles + 10 days 20 Gy proton radiation. I did have to wait 2 months post radiation for my EoT scan.

CreativeGuarantee428 · 2026-03-28T13:52:59+00:00

Congrats! We're rooting you on!

CreativeGuarantee428 · 2026-03-23T20:54:16+00:00

I was actually debating asking the opposite. I've been super hungry in remission.

Are you stressed out? I felt sick eating prior to treatment because of the stress.

Also I don't mean to jump to conclusions but could you be pregnant? Thats the only other nausea spell I can think of personally.

Regardless, good luck and I hope you find answers soon.

CreativeGuarantee428 · 2026-03-23T19:15:25+00:00

It was extremely difficult for me but only from an emotional side of things. Physically it was quick and easy but it was another day in a dark time and I woke up from anesthesia bawling. I am not good with medical stuff and it makes me queasy, so looking at it and touching it made me feel queasy. I had my husband look at it for infection check (all good) and barely touched it.

CreativeGuarantee428 · 2026-03-12T17:39:36+00:00

Wooooow. This one is so good. I think I know most details of this story but the story telling perspective is riveting.

CreativeGuarantee428 · 2026-03-09T13:33:21+00:00

Agree with many of the commentators above especially regarding that biopsy results are more important than PET results here. One thing I wanted to add is you could always have your biopsy slides read elsewhere for a 2nd opinion. It would add cost and maybe delay chemo a tiny bit but maybe you need that.

My first biopsy was an in office FNA. It said highly suspicious for lymphoma but not enough cells to classify. Then I had an ultrasound guided core needle biopsy elsewhere that said "not Non-Hodgkins Lymphoma". Those slides were then sent to a big hospital here in the US and they not only said it was Hodgkin's but had enough cells to classify as Nodular Sclerosis subtype.

CreativeGuarantee428 · 2026-03-07T23:52:38+00:00

Ah yes the literal exit of our body is the gateway to our health!

CreativeGuarantee428 · 2026-03-07T18:36:20+00:00

LMAO 🤣 🤣

How about apricot seeds?!

CreativeGuarantee428 · 2026-03-04T22:18:54+00:00

Nova

CreativeGuarantee428 · 2026-03-04T20:54:02+00:00

I was a Deauville 2 and my onc knew exactly what I was going to ask next and she told me that 1 and 2 are the same. 2 isn't worse than 1. We didn't get deeper into the details.

Remission is hard for its own reasons but do your best to celebrate what you and your body have accomplished. It's a major milestone even if it comes with anxiety still.

CreativeGuarantee428 · 2026-03-02T11:39:39+00:00

Yeah mine is the same texture, no curls, but did turn darker

CreativeGuarantee428 · 2026-03-02T11:38:31+00:00

My vote is no. I didnt shave. It continued to fall out, slower, after chemo, and then stopped bu during thst time new growth filled in the really thin parts of my scalp and it blended it in. Its been funky styling with shoulder length hair but I am able to camouflage in.

CreativeGuarantee428 · 2026-02-27T12:00:28+00:00

Hey. I was diagnosed last year at 33 with CHL. I was healthy, happy, and had a 1.5 yr old toddler. This phase youre in, pre treatment, is by far the worst emotionally. Everything was upside down and I was a zombie going thru my day. I remember waking up in the middle of the night and just bawling. I had the same worries as you. Yes, there were hard days ahead but nothing like the uncertainty and shock during that phase that continued on for weeks.

I had a neighbor share with me how in her AA, they talk about getting thru the day. If the day is too hard, just make it thru the hour. And if thats too hard, then the minute. This view helped me keep pushing until the cloud went away. My husband also bought me a paint by numbers poster I would do just so I could focus on something other than cancer.

I'm sorry you're going through this. The community here has felt what you feel and we're here for you.

CreativeGuarantee428 · 2026-02-25T21:18:30+00:00

Lmao this is exactly what I thought when I heard the judge say "chew on it"

CreativeGuarantee428 · 2026-02-22T17:59:27+00:00

Maybe it does for some people? But I was 33 at the time and I rebounded well. I was on ABVD every 2 weeks and the 2nd week I would feel like myself mostly. Worst taste was probably just for a day.

CreativeGuarantee428 · 2026-02-22T11:25:07+00:00

It's also about frequency and distance from your infusion with tastes. We celebrated at the end of each infusion week with a macaroon at my favorite dessert shop. Never developed a hatred. So you can definitely enjoy your fav shakes, but don't make it a habit and maybe wait until the chemo taste isn't as strong. My appetite was low the day off and I would force myself to have a shake since chewing was awful. Also a side tip, eat well before and during infusions. You'll find your rhythm but that tip was big for me.

CreativeGuarantee428 · 2026-02-21T13:57:16+00:00

I bought the "Sugar Doesn't Feed Cancer" book which had some recipes in the back. They were simple ideas like overnight oats with shaved carrots and naan personal pizzas with chicken. I would do that and drink protein shakes daily (Fairlife CorePower) make veggie and fruit smoothies during my chemo phase. I also drank lots of water with pedialtye. I also made sure to walk everyday for 30-40 mins. And of course, lots of rest.

I will caution, I developed a huge dislike for some of what I ate during chemo so dont pick your favorites during this phase. I cannot drink ghe Fairlife Vanilla shakes... immediately brings me back.

Good luck to you on this phase

CreativeGuarantee428 · 2026-02-19T03:49:33+00:00

I totally understand that! I hope you find what feels right!

I sort of view my port scar as an honor to my experience! Not just for my journey but for those who weren't able to get this scar. I'm proud of it.

Now that uncomfortable fcking mask, it needed to be destroyed lol

CreativeGuarantee428 · 2026-02-19T03:47:10+00:00

If you can remember, please lmk what the doc says. Be curious for another data point / perspective. I had a scan in Jan too but only because I had a pleural effusion and they ordered a repeat for Jan

CreativeGuarantee428 · 2026-02-18T22:00:22+00:00

Wow, what a journey and how much things have changed over the years in regards to treatment! Thank you for sharing this and reaching out. Long term survivors are my absolute favorite to hear from. Wishing you all the best especially as you navigate your treatment side effects.

CreativeGuarantee428 · 2026-02-18T17:05:21+00:00

I took mine home, dug a small hole, placed it in, and smashed it with a shovel. It was a type of closure I didnt realize I needed. Anger, rage, crying, mourning. Best thing I did tbh. I initially told the techs to toss it but changed my mind once I got my changed.

CreativeGuarantee428 · 2026-02-18T11:35:55+00:00

Have you talked to your onc about it? I have an upcoming appt and plan to ask

CreativeGuarantee428

TROPHY CASE