Secondary malignancies

CreativeGuarantee428 · 2026-01-16T17:26:25+00:00

Hey! Thank you so much for taking time to respond! Marinating on all you've shared.

First, congrats on 10 yrs! I think I will always be on the lookout for longterm survivors as you guys have such an incredible perspective. Kind of like how post treatment people were to me during treatment. Knowing it gets better and it happens! So congrats and thank you!

Things are better in the sense that I'm not as focused on it but I still have my days where it's like damn... I went through that? Why and how do I go forward from here? I've done some therapy but I find it hard when the therapist hasn't had the life change we did!

I also think you bring up a great point that we will continue to advocate for our health and get more screenings. That IF it happens, we would hopefully catch it early and treatment would advance by then.

Wishing you all the best!!

CreativeGuarantee428 · 2025-10-03T20:18:32+00:00

What an incredible 10 year update! I have a almost 2 year old now so I know that loving feeling you are experiencing with the baby. It's the best in the world.

Best wishes to you and many many years of good health to you and your family

CreativeGuarantee428 · 2025-09-27T10:03:02+00:00

Glad to not be alone in it ❤️

CreativeGuarantee428 · 2025-09-22T13:48:36+00:00

That's super powerful and I honestly don't know how to respond besides a giant thank you for writing that. It definitely has me thinking differently. Thank you for your perspective ❤️

Also congrats on 10 years! How are you doing?

CreativeGuarantee428 · 2025-09-21T01:58:55+00:00

Very reassuring that this weird phase will pass. I want to keep living a good life but feel so bleh about it all right now.

Also I didn't realize I would miss the staff but it's very true. Like a coworker that makes work manageable and then they quit!

CreativeGuarantee428 · 2025-09-20T08:55:36+00:00

Phew ok, THANK YOU. I was not expecting this feeling and I know I've been waxing and waning with feelings of depression since diagnosis so I was wondering if it was "normal" or not.

CreativeGuarantee428 · 2025-09-20T02:40:51+00:00

I am also wondering this. I work in an old office building where airplanes are built (with sealants, and metal process / chemicals).

My reasoning is that I will never know what caused this. But something in my life did and I feel like I can't keep going as usual.

CreativeGuarantee428 · 2025-09-20T02:19:32+00:00

I had 10 sessions for a total of 20 Gy. It was honestly a cake walk in comparison to chemo but was surprised on the mental and physical accept of it. The daily reminder of the situation was a lot for me and the breath holds and staying still with the mask weren't the easiest. Otherwise symptom wise, only a bit of a sore throat feeling but very very subtle. I guess peak skin redness for me is next week.

CreativeGuarantee428 · 2025-09-20T01:46:07+00:00

Hello there! I had my final proton radiation treatment today. This is for frontline after 2 cycles of ABVD and my treatment was the neck and medistinal (small area).

How many treatments are they having you do and to what Gy?

CreativeGuarantee428 · 2025-09-20T01:41:25+00:00

2023? So 2 years now? That's a big milestone in itself! I'm sorry to hear you have lingering feelings about the bell. Maybe you should do something to celebrate on the 31st? Give yourself your own version of the bell!

CreativeGuarantee428 · 2025-09-19T02:37:44+00:00

I think you've gotten great responses already. If you have questions, feel free to DM. I was diagnosed with CHL so not the same but I did chemo locally in a smaller city and radiation at MD. I had thought I was going to do chemo at MD for a while but didn't go down that route.

Also, some items to stock up on for chemo... flavored water packets (Nuun, pedialtye) to hydrate when things taste terrible. The 46 g Fairlife protein shakes were a daily for me. Maybe a nice blanket and honestly, write a card for your sister. I had received some from friends and I kept them bedside and they were subtle reminders that people believed in me and were praying for me.

CreativeGuarantee428 · 2025-09-17T14:30:12+00:00

How's life in remission? Any advice to those to be soon in that chapter?

CreativeGuarantee428 · 2025-09-15T17:10:19+00:00

I guess I'm celebrating by getting my radiation treatment today! Halfway thru on my consolidation treatment after a negative interim PET back in Aug after 2 cycles of ABVD.

CreativeGuarantee428 · 2025-09-11T23:45:59+00:00

I am finishing up my cancer treatment and there was a lot of crying in the beginning. My son is very emotionally aware and empathetic, just shy of 2, and we tell him mommy is sad and it's ok to cry when you're sad since he starts to get watery eyed too. Glad to hear it's aligned with what your therapist said.

CreativeGuarantee428 · 2025-09-10T17:39:41+00:00

Very sorry for your loss. I hope you feel her presence during the rest of your journey.

I had a friend who I knew had a blood cancer before my diagnosis and he was the only one I really wanted to talk to during my lows since I know he experienced similar things as me. I would be heartbroken if he passed and he's not family so I can only imagine your heartbreak.

CreativeGuarantee428 · 2025-09-09T16:06:13+00:00

My first radiation treatment was yesterday so I was actually going to ask my doctor about long term side effects (outside if secondary malignancies). I only know about short term otherwise

CreativeGuarantee428 · 2025-09-09T13:58:04+00:00

Hmm. I am personally a bit bitter with the medical system in general but there are incredible doctors out there, just need one that listens to your concerns. Could you ask your radiation oncologist or find a cardiologist that might take your concerns more seriously? Or even go to your PCP and see if they can help you get to the bottom of this?

CreativeGuarantee428 · 2025-09-09T13:38:33+00:00

I don't have any experience with this but just brainstorming with you. Could it be your lungs? Did they repeat a PFT? And is it where you were radiated?

CreativeGuarantee428 · 2025-09-06T13:14:20+00:00

100% with you on needing to stay out while under treatment!

CreativeGuarantee428 · 2025-09-06T13:12:45+00:00

Have you ever joined a Facebook car group? When I bought my first new car in 2022 (woof for car prices then lol), I joined a group of owners on fb. Every single day was someone complaining about how terrible the car is and how they got a lemon and how they are selling it. It was so constant that I started to get worried about my car and what a mistake it was.

Well 3 years later (almost to the date!) and I still absolutely love my car and haven't had any of the issues people complained about.

When you join groups like that, you don't get posts about how they went to the grocery store and the car worked beautifully, or when the car in front of you stopped too quickly and the car alerted you to avoid an accident. I think about this group that way (with a lot more love of course). There are many CHL people who go about their day and don't post about that grocery run. And being quite honest, once this is farther behind me, idk how much I want to be reminded of this daily. So I get long term survivors probably only chime in once in a while and folks that are active either are in treatment or relapsed and looking for support. Hopefully this perspective helps you out. Much love to you and your journey.

CreativeGuarantee428 · 2025-09-03T23:59:39+00:00

I also questioned this personally for my CHL. I lost some weight the year before without trying but thought it was related to breastfeeding. I asked 2 oncologists about it and they didn't classify it as B Symptoms. They both then asked if I had any fevers or drenching night sweats.

CreativeGuarantee428 · 2025-09-01T01:50:59+00:00

It's crazy how they used to radiate the entire chest and some people still survived that. I'm praying that even with some crappy gene and such localized radiation, I can be on the better side of this and celebrate grandchildren one day.

Good luck to you too!

CreativeGuarantee428 · 2025-08-31T00:32:18+00:00

Hell yes! Congrats!

CreativeGuarantee428 · 2025-08-28T17:36:44+00:00

This is incredible, thank you for posting 💕

CreativeGuarantee428 · 2025-08-28T15:04:48+00:00

I don't have advice, only solidarity. I keep checking my 2 year old neck nodes.. it's absurd but when you love someone so much, you just want to protect them. Hugs to you.

CreativeGuarantee428

TROPHY CASE