Cycle 1, Day 4: tips for finding your new groove

[Reenie]

I have just started treatment (my cycle 1, day 1 of treatment was on Tuesday) and I am really interested to hear how people are finding their groove? Any new morning / afternoon / evening routines, complimentary therapies that are working for you, exercise that is working for you or food?

For me, the first few days were a roller coaster - the day after treatment I felt amazing (assuming it was the steroids that were given to help with boosting  appetite and managing nausea), next day I was tired (I may have done too much the day before), following day I paced myself (much better and had an afternoon nap)... now onto my 4th day.

Pre-treatment (and at diagnosis) I would consider myself a normal 40 year old woman (married with no kids) slept well, healthy, fit, active, social and working,  I don't smoke, drink and didn't mind the occasional Big Mac.  I am taking time off work for my first cycle (3 weeks) to find my groove with the hope I can go part time for a short while. 

Thanks in advance for your tips. 

[sch]

Hi Reenie,

Welcome aboard!

What sort of treatment have you already had and what treatment are you having now?

I was the same age when diagnosed and fit also, although I also had 2 young children.

I had surgery first (because of the bowel obstruction) followed by chemo.

It took me a couple of months to recover from surgery and then I had 6 months of chemo.

As far as effects go, I found that surgery effected me most straight after surgery (obviously), but then I improved and got better. Chemo started not effecting my very much, but the further the treatment went on the worse the effects got.

The general advise (and also mine from personal experience) is to stay as active as you can. This might differ for you depending on what surgery you might have had. .

Groove? Walk as much as you can. It will help with the side effects of the treatment.

I had FOLFOX (chemo) and I remained working full time through out, but for the last 3 months, after getting hooked up, I tended to go home and sleep because I just couldn't stay awake.

If you like, tell me a bit more about yourself and your treatment and how you are going.

-s

[Reenie]

Thanks sch, love those tips. And I have certainly been trying to do as much walking as possible. Possibly the only exercise I have been able to do. 

I have been diagnosed with liver cancer (bile duct) and my 3 week cycle is: 

Day1: Gemcitabine and Cisplatin (chemo) together with Pembrolizumab (immuno)

Day 8: Gemcitabine and Cisplatin only (no immuno). 
a week off, then start again. 

I haven’t had surgery - just straight into chemo / immuno. 

I think I am finding my day 4 is my worst - tired, stiff neck, nausea. Really nothing the anti nausea, panadol and a good nap can’t fix. 

I am hoping I can work some of the time - for mental stimulation, a different focus and to save not using as much leave. 

Hope you’re doing ok! 

[stirling]

Giday Reenie,

thanks for your disclosure. My diagnosis is Hepatoma with portal hypertension and some other complications. Prior to my last surgery there were 3 tumours and 2 more were discovered during the TACE procedure. I've had various surgeries the most invasive was a resection mid 2020. It took quite a lengthy recovery, nothing really extreme, however, it feels like all my body functions have been affected.  Early 2021 I had a TACE procedure. Kind of weird being awake for over 5 hours while on the table in the OT. Full respect to the surgeons. So far so good. It seems I've been in a constant state of recovery for the past 18 months.

Reenie could I ask you if you know the dimensions of your tumors.

Thanks

Stirling

[Reenie]

Wow, you have had quite the journey so far. What helped you get through the hard days? For me (so far, it's really only early days / weeks of treatment), it's a good nap, a heat pack (more for mental comfort), cuppa tea, an episode of The Office, crumpets with lemon curd or peanut butter or raspberry jam, nice slow walk around the block.... 

Not sure of the size of my tumours - sorry. 

[stirling]

Heh! loving your personal care process. I agree with all and will add to my own except for The Office. I'm into totally senseless cop shows and talk shows with artists, Ricky G included. I like him being spontaneous  rather than scripted. My goal for walking is to get back to about 6 klms. Lately its only myself, a very elderly woman and a few gorgeous dogs on the path, due mostly to the low temp. When I get home I collapse  in front of the heater and sleep for about an hour. This weekend I'm gonna shop for a heat pack.  Fab idea. Diet has been one of the most difficult things I've needed to adjust. I've cut the amount by about 50% from prior to diag. Inflammation and internal pressure have been difficult to manage, however, if I eat small meals it seems easier. It still seems like i'm eternally hungry. The hard days? I have some strong pain meds which I refuse to take unless things get really bad.

best regards Reenie

[smca]

I did 2 yrs keytruda .....it got rid of 3 tumors, 2 in brain 1 in lung (3.5yrs post)....it will make you tired....my only comments would be,if you have serious side effects don't take no from your oncologist (they tend to wait until you turn up in the ER....advocate for yourself 

[Anna1983]

Hi Renee, I am the same age and currently on chemo for brain cancer. Are you based in sydney?? 🙂

[bmindful]

Hey, Reenie,

I was diagnosed with bile duct cancer in March of 2022.  I had a Whipple procedure in April, and will be starting chemo in a couple of weeks.  I am worried about the side effects, as I am still recovering from the surgery, but they want to get it started.  

Look forward to hearing about your progress.  

Chris

[Anna1983]

Hi chris, I’m so sorry you are going through this. All I can say is one day at a time. Things are very up in the air at the moment so I don’t have much of an update than I’m waiting on answers regarding next steps and I have a grade III astrocytoma brain tumour ❤️