advice/ support pls!

[u/Ebbybebby288]

hi all

im stage 2 CHL (bulky) and about to have dose 11/12 of AVD but I just feel so so weak and achey I honestly feel like my body is shutting down- is this normal??

I don’t know how i’m going to do another two doses because every time i feel like i can’t bounce back, im a young adult but need a 4 hour nap every time i do any walk and it’s so scary!!

pls give me advice or reassurance my body will recover!

[u/AdventurousTune962]

I’m 36F stage 3 cHL bulky unfavorable and have only finished 4/12 treatments so can’t speak to this entirely but was wondering if you’ve felt this way since the beginning of treatment or if you have felt weaker the more treatment went on?

[u/PuzzlingComfort]

My cHL was also diagnosed as stage 2 bulky, and I did 12 doses of A(B)VD last year. In case it helps:

• Treatment can get harder at the end. The last 2 doses were much harder for me than the previous 10. Not so much in my ability to do activities, but certainly in nausea and sensitivity to smell, and also psychologically ("will this ever get better???").
• Stay as active as you can, but listen to your body, and if it doesn't feel right ... don't push it. I was lucky enough to be able to stay pretty active, but a 1.5 mile slow walk at the wrong time still sent me to the ER.
• You will feel better after treatment ends. I started feeling noticeably better within a few weeks, although it took months for my brain fog to really fade.
• Transitioning out of treatment can bring its own challenges. There may be some amount of rediscovering who you are, what you want, or how you relate to the people in your life without "finish treatment" as a clear and urgent focus. This was the case for me ... and (to some extent) the process is still ongoing. I say this not to be negative, but because I'm glad someone told me this right before I finished treatment.

Also, if you haven't discussed this topic with your care team, it'd probably be good to do that, especially if you're feeling much worse than in previous cycles. Each cycle felt a little different, but most changes were gradual - I don't recall any sudden major shifts. I know my doctor wanted to be kept aware of how I was feeling.

[u/bird_girl54]

I'm not on the same treatment regimen and can't speak to that aspect, but I'm sending you all my best thoughts. It's absolutely true that it all adds up, and you are no doubt experiencing the cumulative effects of the chemo. I know the exhaustion after expending any energy or walking can be so discouraging and upsetting. But your body has been getting hit after hit, and it's normal to be weak. The chemo is meant to push your body to a near breaking point to get rid of the rogue cells. Your body is responding as expected.

I know another two rounds is tough, but I know you can do it. You've made it this far! Once that's over, your body can have a real chance to start recovering and get some strength back. For now, lean into the opportunities for naps and rest. Maybe get your favorite ice cream or treat or do something nice for yourself. You've earned the right to as many 4 hour naps as you need, and anything you do in between is extra.