It's a funny thing. There are so many side effects, and they give you lots and lots of information. I found that even though I read through all the information, I was still surprised by side effects. When I went back and looked through the packet, the information was actually there. I just didn't retain it, or else it was so underemphasized that I didn't think it was worth thinking about. I don't know about 5 years out, but at that point, maybe we would all need a refresher.

Your right the info can be overwhelming but most side effects are actually predictable based on the treatment being given and occur at predictable times. Its most useful to simply ask the chemo nurse during treatment what to expect next. Here is a good comprehensive guide for ALL side effects. https://news.cancerconnect.com/treatment-care/m... C

I was not told the side effect after the remission at all, I have stage 4 marginal zone lymphoma and in remission since 2021. I am still extremely fatigue, developed autoimmune and accelerated osteoporosis. My oncologist denied all those were from the treatments and just told me to seek specialist for treatment .

I hope I'm replying in the right spot.

Re: knowledge of chemo side effects

We were made aware that chemo might make you nauseous. However we did not know anything about mouth sores or mucosis. For us it took three hospitals and 18 days to diagnose and treat. The first chemo treatment was 5 days inpatient - no nausea or side effects during treatment or for the first two days after hospital discharge. Within a week we ended up back in the hospital with severe mouth sores, mucosis, malnutrition and dehydration.
If we had know what to expect we could have acted sooner. Upon re-admission to the hospital, I complained about this and found out that we should have received a packet with related information and access to a nurse navigator.

I believe that if we had been diagnosed before entering the hospital, we would have been better informed. That mis-step cost us a 21 day hospital stay. I found this website while researching SVC and NHL. I was trying to figure out what went wrong.
Now I can share my experience and learn what to expect. Although as many of you know every experience is different and we never know all the answers, but at least I feel more informed.

Yes https://news.cancerconnect.com/non-hodgkins-lym...

https://news.cancerconnect.com/non-hodgkins-lym...
C