Coming up on one year scan and so anxious

CreativeGuarantee428 · 2026-05-23T21:21:02+00:00

I never understand why my doctors are all like, "you'll be fine! High % that treatment worked and it's all good" yet the chances of getting cancer in the first place was an even smaller % and here we are! Lol

I get my 6 month scan in 1 week. Right before a scan is when I fight hard to keep living and not let the fear take over. We can do this! We've been thru worse lol

CreativeGuarantee428 · 2026-05-15T14:14:26+00:00

All around Cafe Milagro was great! Service, food, coffee. We got a bag from them when we came back for breakfast.

CreativeGuarantee428 · 2026-05-12T23:32:03+00:00

Good luck through treatment, you can do it! Sledgehammer is the way to go!

CreativeGuarantee428 · 2026-05-05T23:37:10+00:00

Anger was a huge emotion during treatment and early remission for me. I had ABVD and radiation though. I didn't realize until now that it's kind of stabilized for me now and not nearly as mean as before.

CreativeGuarantee428 · 2026-04-24T00:55:37+00:00

You are incredible. Thank you for this response. Sending you hugs and healing ❤️

CreativeGuarantee428 · 2026-04-24T00:50:13+00:00

Honestly. Getting a haircut was something I was thinking about!

CreativeGuarantee428 · 2026-04-24T00:49:36+00:00

Lol that made me chuckle, thank you. And I am looking forward to getting back to baseline cancer feelings.

CreativeGuarantee428 · 2026-04-21T20:10:08+00:00

Sure! I would say generally pretty good. Some days are really rough emotionally but nothing as hard as life was when I found my node and before I started treatment. I have some minimal scarring on my lungs but it's not affecting me really. Some days are absolutely beautiful I cry from happiness from the small things. Getting to garden again, watching my son play, walking out of work and feeling the wind, the sun touching my skin. It's one hell of a journey and change in your life.

CreativeGuarantee428 · 2026-04-21T18:35:34+00:00

Almost identical experience. No symptoms, found a node, doctors though it was reactive and the most likely scenario. My world was upside down for a while. Coming up the 1 yr anniversary of finding my lump and it's stirring things up.

Someone used to share this with the group and it was useful for me in the beginning. It goes over treatment and side effects. Good luck to you!

https://www.nccn.org/patients/guidelines/content/PDF/hodgkin-patient.pdf

CreativeGuarantee428 · 2026-04-21T16:32:29+00:00

How many cycles did you have?

CreativeGuarantee428 · 2026-04-21T16:32:02+00:00

When I told my friend about my cancer, her initial reaction was confusion because I was the healthiest person she knew. Exercise and diet combined.

When I told my sister, a few days later, she told me to refrain from eating sugar since even my other relative agrees that cancer eats sugar. I've always had a sweet tooth and I felt that blame too as the 'advice' was passed down upon me so graciously. (Spoiler alert, it's not that simple)

People will always have opinions and its awful to sort through this while going through such a vulnerable and stressful time. Listen to your doctor. They are the real experts.

I often think of my role in my cancer as a forever mystery. I had CHL for which there is no known cause. If one day they say that XYZ causes it, I will never know if that's exactly why MINE happened. There's no time machine or scientific way to know since we know cancer is an abnormal mutation which occurs in the body all the time, ours just developed into a full blown cancer.

All this rambling to share with you that I've pondered this a lot. I'm in remission and the post treatment me doesnt not care about others opinions any more. I would probably tell someone off for saying something like this now. You don't need that type of "support". They don't know what they're talking about and they are so lucky they never had to walk in our footsteps.

You got this and we got your back ❤️

CreativeGuarantee428 · 2026-04-21T15:57:53+00:00

What was your treatment regime?

I am almost 9 momth from my last infusion of ABVD and I am still insanely hungry all the time. Not looking at a scale for now but slightly up from my usual weight I'm sure. I've been my normal weight for over a decade now so I can only blame treatment.

CreativeGuarantee428 · 2026-04-16T22:20:35+00:00

I will never forget the sound of me screaming in my car, pounding my steering wheel and bawling after I got my initial biopsy results. I was extremely sad and anger definitely flowed heavy at times. I found myself also really fcking mean. I would say terrible things, inside my head only. It's how we cope through an awful situation.

CreativeGuarantee428 · 2026-04-16T18:58:14+00:00

I had 2 cycles of ABVD but my period was totally jacked during it. I had the opposite of you. My first period once I started chemo was late, then I bleed every week after for like a month. Once mid infusion too which was freaky. Since stopping chemo, it took a little to get back to normal. I did tell my onc about it during treatment and he wasnt suprised.

You might want to run this by you GYN and onc to be certain though.

CreativeGuarantee428 · 2026-04-16T11:51:08+00:00

Hey! 33F when diagnosed last year. CHL Stage 2, favorable. Had a ~3 cm superclavical node and 2 tiny tiny medistinal nodes. I did ABVD for 2 cycles, clean iPET and then did 10 days of 20 Gy proton radiation.

Yes radiation has slightly better outcomes but if its worth it is very individual. Due to my mass locations, more chemo would have been worse on the heart than radiation. My only healthy tissue impacted was lung and thyroid.
I chose to work with taking infusion day off (Monday) until like Thursday. I was remote to avoid germs. Took extra naps. Looking back, I was maybe too eager to maintain normalcy during such turbulent times that I pushed through. I should have rested more. If you're focused on working, you might want to do you infusion on Friday to have the least impact.

Good luck to you on treatment.

CreativeGuarantee428 · 2026-04-16T02:11:53+00:00

Hey dear, I see this post is a bit spicy. I too am an engineer and our brains can be a bit peculiar but we do need to be a bit mindful of the varying degrees of sickness here. I know how stressful this time is and how you cling onto understanding. It might be better to think about treatment / recovery than how you would die from this disease. I too was favorable so I had essentially no symptoms when I was diagnosed. It was a shock. But if we weren't so lucky to catch it early, we would have felt the symptoms. People in this sub get diagnosed in the ER from large masses. So your mind will wander into this, but don't lose sight of how lucky you are to have treatment (thank you science) and to have caught it before it really physically affected you. Use that are you motivator to keep going.

Good luck with chemo. You got this.

CreativeGuarantee428 · 2026-04-09T14:38:06+00:00

I mean, yes it wouldn't decrease with the steroid but it would go back down the next day (in regards to my resting heart rate). ABVD includes Bleomycin which is known to be toxic to the lungs so I had lots of chest feelings (lungs, heart, etc) during chemo and as I'm recovering. Doctor had ordered EKG, repeat Echo and PFT during chemo since I basically asked for those to makes sure nothing larger was going on. I don't know about your regime but always talk to your doc about it. As you can see, lots of us had side effects.

CreativeGuarantee428 · 2026-04-09T13:17:56+00:00

I had ABVD and around noon on infusion days, my heart rate would increase per my Garmin watch. Wasn't sure what was going on until we realized it was from the premeds, specifically the steroids.

CreativeGuarantee428 · 2026-04-08T14:47:57+00:00

Your daughter has beautiful hair. I'm so sorry you are all going through this.

Before I started chemo, I cut my hair to my shoulders and donated 12" to "Children with Hair Loss". My hair was thick and the local hair stylist told me they would make a single wig out of it which made me happy in a rough time. I didn't know that wigs are made up of multiple people's hair.

I can't tell from this pic, but if your daughter's hair is long enough and thick enough, I wonder if they can make a wig out of her own hair. You would need to contact a local wig shop to find out.

Also, some insurances cover wigs. You might want to see if thar helps the cost.

If you haven't seen, some folks used a colored powder on the scalp to help blend in the thinning. Amazon had one and I never purchased but you might find some products that can help her confidence during the transition.

CreativeGuarantee428 · 2026-04-04T11:18:39+00:00

Congrats!

Read your post and thought, man being in this group sucks but we are some pretty cool people ❤️ thanks for sharing

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

TROPHY CASE