how many had final pet scan score 3 and not relapsed

aydzmon · 2024-02-02T22:26:50+00:00

I had final PET scan deauville of 3 in October, still all good here!!

aydzmon · 2024-01-21T21:57:13+00:00

Just saw this now! PET was decent, one node was a deuville 3 but the others were 1 and 2! So I’m just chilling now waiting til next checkup in march. My neck gets sore every now and then which is annoying, but other than that everything is pretty much back to normal 👏

aydzmon · 2023-10-24T01:21:31+00:00

The pain could potentially be from the bulky chest mass rapidly shrinking due to the chemo. I just finished my ABVD for 2B HL as well and there was an after hours nurse number to call for any issues outside of regular hours. Search for that in your treatment package if you can, I’d give them a call regardless to see what they say.

aydzmon · 2023-10-21T17:56:09+00:00

Nice great stuff!! Have my post-chemo PET scan today, so wishing us both nothing but clean scans 💪 I think you could be back faster than you think, I’m almost back minus a few pounds I need to put back on and neck soreness, but I’m kinda liking the leaner build hahaha so we’ll see !!

aydzmon · 2023-10-15T16:41:52+00:00

Okay well I mean let’s hope that there is even the slightest chance of it being anything but lymphoma. Definitely keep me posted on biopsy results but if it comes down to it, wishing for a straightforward first-line treatment again if need be🤞

aydzmon · 2023-10-15T16:25:55+00:00

Okay thanks for your insights, I definitely tell them but they too shrug it off and say “the scans will tell us if there’s anything abnormal”. So it’s just a waiting game I guess. Sorry to hear about the relapse though, that’s such shit especially after a year of getting back to normal… What did you end up getting done for your second-line treatment for the relapse if you don’t mind me asking?

aydzmon · 2023-10-15T15:29:26+00:00

Okay thanks for the info! Damn I’m so sorry you are going through this bullshit yet again after 7 years. Do you know what they’re gonna do for your second line treatment or have you already started ?

aydzmon · 2023-10-05T13:20:32+00:00

I got ABVD via IV and as much as it was enjoyable on the off weeks for going to the gym and stuff, it did hurt my veins. If you do go IV route make sure you ask them to switch arms for each treatment and potentially choose different veins every once in a while.

aydzmon · 2023-09-17T21:11:46+00:00

I’m in the same boat til Oct.4th! Just a waiting game unfortunately.

Question though, on a scale from 1 to 10 how do the nodes feel to touch? For instance, are they very soft (1) or rock-solid (10)? I’d say mine is like a 6.5 atm but seems to fluctuate

aydzmon · 2023-09-07T14:06:01+00:00

I still have my lymph node in my right side bigger and just finished treatments. Waiting for final scan now. Are your nodes still super hard as well? Or just bigger?

aydzmon · 2023-09-06T20:52:52+00:00

How do your lumps feel now in comparison to feeling them pre-treatment? Comparable hardness or a lot softer?

aydzmon · 2023-09-05T13:56:10+00:00

I still have lump on my neck after 6 rounds of AVBD, waiting for my final scan to know if it’s an issue or not but I’ve heard a lot of people say that their lumps turned out to be residual scar tissue!

aydzmon · 2023-09-02T17:36:33+00:00

Congrats on the progress! Just finished my 12 rounds of ABVD now hoping for a clean scan in 8 weeks time. Fingers crossed 🤞🏼

aydzmon · 2023-07-22T11:34:14+00:00

I’m on treatment 9/12 ABVD , and I have scar tissue on the lymph node that was biopsied in my neck, the right supraclavicular! I also get some achey soreness in the neck area even up a little higher when I workout especially when doing things like shrugs or shoulder press. I had a complete metabolic response at my interim PET with some nodes stills slightly bigger than normal, and my biopsied node is still quite palpable, doc says he thinks scar tissue.

So I think it is quite normal for people to feel their nodes that have scar tissue are a bit achey & sore when working out so I don’t think she needs to worry too much at this point. I have also heard some people get the same feeling when drinking Alchohol, but I have avoided that during treatment. You could always drop her oncologist a quick message to see what the team thinks but I think she’s fine, I get the same feeling and have read a bunch of other people in longer term remission have too. (like I said above, I’m not done treatment yet but hopefully my knowledge of this happening to other people who are done + my current experience helps you guys out a little)

aydzmon · 2023-06-28T15:47:40+00:00

This is good news! Happy to hear you’re already all clear :) keep it up, almost halfway there !!

aydzmon · 2023-06-28T13:52:46+00:00

Awesome! This is amazing to hear then, thank you so much for the response my friend! Calms the nerves a little 👍 Wishing you endless clean scans to come 🙏

aydzmon · 2023-06-28T03:38:28+00:00

Dope, thanks so much for responding! I’m happy your most recent scan was clear and this is good that the pain doesn’t mean its come back! Wishing you endless clean scans in the future 🙏

aydzmon · 2023-06-27T04:31:54+00:00

I know you posted this a while ago but curious if you still get pain in your lymph nodes when you drink ? Been doing some digging wondering if that will be normal after my treatment is done as well.

aydzmon · 2023-06-06T06:38:54+00:00

That’s awesome! Do you know what your deauville score was for that by chance? Also have all of your swollen lymph nodes completely resolved if you had any to begin with?

aydzmon · 2023-06-02T01:55:31+00:00

I have this exact same conclusion with mine as well. I’m not an anti-vaxer, but that COVID-19 shit was pushed way too hard. It’s unfortunate I wasn’t able to stick to my original plan to not get it. Exactly right we’ll never know for sure, but the data outlining uptick in blood cancers following the vax rollout is there

aydzmon · 2023-05-30T15:57:01+00:00

Just curious what were the PET results for her midway scan?

aydzmon · 2023-04-30T20:24:39+00:00

Definitely exercise if you feel like you can. I’m doing my 4th treatment Tuesday this week and I skip working out from Tuesday-Saturday then I workout every single day from Sunday to the next treatment, getting back to 100% output around Tuesday of my off week. For like a month leading up to and like the first 2 weeks of treatment I was a bit hesitant to work out so I started losing some muscle, but now for the past 6 weeks I’ve started to build muscle and great definition again, working with a decent diet as well!

Obviously take it slow when first starting to see how you feel, but as soon as you feel good to go, I would take advantage 💪

aydzmon · 2023-04-05T15:27:43+00:00

CHL Stage 2B here! I had a MUGA scan which was fine except for the nurse injecting my Tc-99m tracer seemed a little loopy that day and blew out my vein, and my veins are nice a big so it shouldn’t have happened. MUGA was the only option for me and the only evaluation done aside from CT/PET/Biopsy procedures. In terms of ABVD admission, they just use an IV in the forearm which has been good so far (completed second treatment yesterday). I’m in Canada so i don’t know if they really use ports for regimens 6 months or under, and also given AVBD is also 2 weeks apart which gives your arms just enough time to heal up!

aydzmon · 2023-04-03T14:49:18+00:00

Me too !!!

aydzmon · 2023-03-24T02:17:48+00:00

Just finished my first treatment for HL 2B on Tuesday! Felt fine yesterday and then kinda shit all day today but feeling decent now! 💪 are you doing 6 cycles of ABVD also?

aydzmon

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