Just found out DLBC. Looking for tips.

Hi I wanted to post a follow up after completing RCHOP therapy incase it might help others in the future. 

First we had 6 treatments of RCHOP spaced approximately 3weeks apart. We did have one session delayed due to labs showing she wasn't ready. They did modify the dosages slightly each time based on her labwork. We did end up pulling the vincristine during one of the sessions due to neuropathy in her hands and feet. The neuropathy has since gone away for the most part. We had PET/CT scans after every 2 sessions and each time progress was good, the deauville score was 3 at the highest. Our last scan is actually tomorrow and I'm optomistic that it'll be fine. She did have kidney/liver function problems so they did all the scans without contrast. The oncologist said it makes it harder to show us but he could still read the scans without contrast. 

We did seek a second opinion just to verify we were doing the right thing. The one thing that was a little troublesome here is that the second opinion said the biopsies that were taken did not clearly show DLBC lymphoma but it also was clear it was pancreatic adenocarcinoma. So we just progressed with treatment with our primary oncologist. It sounds like they need pretty large tissue samples to clearly determine DLBC lymphoma, maybe something the needle biopsies just arent sufficient for. 

Complications we had:

Shortly after the first treatment my mom developed a fever. She was hospitalized and gave a bunch of iv antibiotics and then sent home. They never found the issue. A few weeks later after the second treatment it happened again and this time they determined she had c.diff so we did another deep clean at home and she was on vanco for 2 rounds. This seemed to clear it up but she continued to have loose stools and an urge to go more often over the duration of treatment. Following her last session she again had a fever and was hospitalized with a bunch of antibiotics and then sent home after a few days.

She had issues with fluid intake which caused kidney/liver issues. I think she just normally doesn't drink alot of water but then with the treatment it was very apparent since she was constantly getting blood work done. Even with monitoring at home I wasn't able to get her to drink enough water. This eventually led to twice a week iv fluid sessions at the clinic. 

She does have black nail beds but we're told those will clear up.

No real issues with mouth sores but we started the salt rinse right away. She had some tenderness at times but overall no issues here. She was prescribed some "magic mouth wash" but she never had to use it. 

No issues with bone pain with the neulasta shot. She got the shot, not the patch if that makes any difference. 

Home life:

I think this is where I had the most concerns intially but it ended up being okay. She was able to get around for the most part. The fatigue after each session was very apparent. She would sleep for the whole day after we got home and then she would slowly recover. The few days before the next session were always her best days, only to get beat down again by the chemo. She has shrunk down quite a bit. Her legs are very weak from just laying around all the time. We have to work on building back her endurance but she is still very mobile.

Food was okay for the most part. Some days she had better appetites than others but overall not alot of issues here. 

With COVID and the colder weather trying to exercise was difficult. We did go for walks initially but as it got colder she didn't want to be outside. We dare not go to malls or anything so she would just do laps around the dining room table or in her room. Probably not enough activity but it was better than nothing. 

I guess we got through the easy part. Now we are just monitoring and waiting for anything else to pop up. I think that is the hard part, not knowing whats to come. 

For anyone reading this looking for help like I was a few months ago I think the biggest tip is just to be ready to be there. Everyone obviously responds to their treatments differently but either way its a long journey. Have a support structure. For those that have to go through this alone I can only imagine how tough it would be. I saw so many people go to chemo alone and wait for taxis. My mom was fortunate to have her whole family supporting her. I took on the brunt of the day to day activities but other family members helped with various things behind the scenes such as daily phone calls with words of encouragmenet and to cheer her up, food prep, etc.  All of the random dr visits, labs, scans, waiting at the office, waiting for test results, etc etc. its all very time consuming and emotionally and physically draining but support your loved one and you'll get through it in time.