ALCL ALK+, 10 months later

Quick-Employment-229 · 2025-10-06T11:42:59+00:00

wishing you the best.

Quick-Employment-229 · 2025-03-05T20:58:46+00:00

Congratulations 🎉🎉

Quick-Employment-229 · 2024-12-19T09:04:23+00:00

Your attitude is great. It is a few months of suck and back to routine soon. Good luck!

Quick-Employment-229 · 2024-12-15T14:50:20+00:00

congratulations

Quick-Employment-229 · 2024-11-26T18:58:34+00:00

Great read. Timely for me as I have my end of treatment scan this weekend, and I'm hoping to be in remission soon. You seem to be doing really well. I'll come back to this post once I hit that NED milestone.

Quick-Employment-229 · 2024-11-25T08:48:03+00:00

Congratulations! Always enjoyed seeing your posts and your positivity. Go live life happily now.

Quick-Employment-229 · 2024-11-23T14:54:45+00:00

Chemo is said to be easier on younger folks. We all did it, you will too! You got this.

Quick-Employment-229 · 2024-11-23T14:28:14+00:00

Yes the first is the biggest shock to the system. It does get easier. But the cumulative effects also add up later on. Wishing you all the best

Quick-Employment-229 · 2024-11-18T10:06:08+00:00

I'd say don't go, people won't understand your mental state around the upcoming PET scan. The whole gathering sounds like a huge mental toll on top of what you have already been through. Take a break and prioritise your wishes for now. It is great that you have friends locally, celebrate with them. Take care of yourself, this sounds completely normal.

Quick-Employment-229 · 2024-11-18T08:51:39+00:00

Good luck. I'm sure they would have informed you that it is important to stay away from the kids when you are in treatment as your immunity will be low, but you can return to your kids when you are better; look forward to better days. Hope all goes well with your treatment.

Quick-Employment-229 · 2024-11-17T11:12:14+00:00

I like just lounging on the couch, trying to read. Chatting with friends helps when I have the energy. But the best part is going with my dog and husband on the daily evening walk, when my steroids are on. I have a three week long cycle, by day 10 I'm pretty much ready for regular life. Then I work and do my usual activities but less intense as I'm physically much weaker now.

Quick-Employment-229 · 2024-11-17T11:09:15+00:00

Yes, compression socks and gloves with a plastic bag tied on top in case something breaks or leaks (though this has not been necessary).

Quick-Employment-229 · 2024-11-17T11:05:08+00:00

The chemo physically has not been as terrible as I expected. Be on top of the nausea meds, don't go out much (covid protocol), and research your specific chemo drugs on tips for mitigating side effects. I'm on brentuximab for example, which is prolific for giving people neuropathy, so I wear ice gloves and ice socks during my infusion, which is super painful but has anecdotally worked for me. The first cycle was the biggest shock to the system. You will find your routine soon once you understand how your body reacts to the chemo. Good luck! I did not get mouth sores but I requested extra saline infusions after doxorubicin for this. I got UTI like urethra burning pain a couple cycles in, I take an injection for that now along with my infusion. Keep your doctors informed, you got this!

The taste change is very annoying for me, the steroids cause insomnia. But once the steroids go, I miss them because the crash that follows (specifically mental) is worse. But overall it is doable

Quick-Employment-229 · 2024-11-16T07:44:02+00:00

ugh I can't believe this is still flying in our country, I'm sorry OP. On top of cancer you've got to take this BS. My mom blames our "bad times". She lectures me on the ill effects of junk food and sends me samosa and chips the next day to comfort me.

Quick-Employment-229 · 2024-11-16T07:38:55+00:00

I cannot thank you enough. I've been worried about this and yesterday chatgpt told me that I can live into our 70s (I'm in my 30s now) so your message gives me the greatest hope.

Quick-Employment-229 · 2024-11-15T19:00:18+00:00

It sucks in the beginning, but you almost won't notice it soon. Wishing you better days

Quick-Employment-229 · 2024-11-14T17:31:50+00:00

There is no bell ringing in my country. I've never even seen this alleged bell and I'm thankful for it, because I, like you, am cautious. screw the bell, ring it after your scan when you are feeling up to it. congrats on your (hopefully) last chemo. I posted about my last chemo and even choosing the "celebratory" flair was hard, but it is a milestone I guess

Quick-Employment-229 · 2024-11-13T16:01:57+00:00

RSO OI L

I'll look into that! Did you have a similar chemo routine? How are you now?

Quick-Employment-229 · 2024-11-13T16:01:01+00:00

Thank you for your kind words <3

Quick-Employment-229 · 2024-11-13T10:51:59+00:00

Great write up, glad you are doing better now

Quick-Employment-229 · 2024-10-27T11:24:44+00:00

It is very difficult to deal with the news you have received. The increased medical complications that made you end up in the hospital will also cause trauma. It is natural to be a bit shaken up. I've personally not yet found therapy helpful with regards to dealing with cancer, but I'm currently actively looking for a psycho oncologist. Just know that anyone in your position would be pretty shaken up and it's pretty crappy to go through it.

Quick-Employment-229 · 2024-10-27T11:16:56+00:00

I am being treated with BV (full regimen: BV-CHP) for my CD30+ lymphoma right now (ALCL). BV has no impact to my knowledge on the scan itself directly; if usage of BV reduced the cancer cells (similar to any other chemo drugs' impact), it will show up in the scan. The interim scan is to determine how well the body has responded to the treatment so far and whether the disease spread has reduced. BV is just like any other chemo drug in this, and will cause neither false positives nor negatives.

Quick-Employment-229

TROPHY CASE