Gee it’s quiet here huh…

[Rock_Robster]

Everyone doing OK out there? Hope this means you’ve all been distracted spending the holiday season with loved ones, or doing something you enjoy!

Rob

[Pagola44]

Hey Rock how you doing?
Happy New Year!

Personally I'm on cycle 8 of 12 FOLFOX
Can't wait to get it done..pretty miserable experience

Hope you're doing well.

[Rock_Robster]

Hey Rock how you doing?
Happy New Year!

Personally I'm on cycle 8 of 12 FOLFOX
Can't wait to get it done..pretty miserable experience

Hope you're doing well.

Nearly there mate! You’re doing well and soon enough this will all be a distant memory.

I’m doing good thanks - back on the weekly FOLFIRI which is a bit rough, but I’m actually feeling heaps better - no more vomiting, way less pain, more appetite and energy. Gained a few kg too. So I’m optimistic that this is doing good things. And the trial hunt restarts again soon…

[claudine]

Well, I was waiting to get results from DH's first cycle on Lonsurf + Avastin before posting, and we just got those today. His onc decided to try this instead of putting him back on Folfiri in the hope that it wouldn't be as taxing on his body, but boy, it was almost as bad (minus the hair loss): extreme fatigue, loss of appetite, diarrhea, nausea... It's pills 5 days on/2 days off/5 days on/16 days off; the first 5 days were ok (luckily, while our daughter was visiting), the second pretty bad. But his CEA dropped significantly, from 28 to 18, which is great news! His onc hopes that the second cycle won't be as bad, but if it is, he'll lower the dosage.
Anyway, here we are nearing 6 years of this mess, but finding happiness in the little things, the shared moments together

Thinking of you all XXXXX

[Rock_Robster]

That’s great news about the CEA Claudine!

Lonsurf is indeed a rough drug, but it does anecdotally seem to be doing a lot better recently with Avastin. I think dynamic dosing is super important with these later lines where it’s all about sustainability - if he’s responding well now then that may also be the case with a modest dose reduction, with a lot less toxicities.

We’ve been playing around with the FOLFIRI protocol recently trying to get the same effect.

My body also often does this thing with a new treatment that I call “first round, worst round” - hopefully that’s the same for your husband.

Good luck!

[Markdale]

Hey rob, how are you responding to the treatment? Any shrinkage? How about qol while on continuous chemo?
Happy new year

[Rock_Robster]

Hey rob, how are you responding to the treatment? Any shrinkage? How about qol while on continuous chemo?
Happy new year

Hi Markdale, happy new year! I’m just about to start on the 2nd three-weekly cycle, so haven’t done any new imaging yet but will get some bloods tomorrow which will hopefully be in the right direction. QoL is quite good as I’m only doing ~35% of the irinotecan dose in each of 2 weekly doses out of 3 weeks (I have Gilbert’s Syndrome) - main side effect is just fatigue really, and lots of other things have improved (nausea, pain, appetite etc.). Although I’m not quite sure how this is meant to go with returning to work after the holidays, given I’m now effectively in treatment for 2 out of every 3 weeks! Will have a chat to the boss tomorrow, but thankfully that isn’t my primary concern right now.

[utahgal7]

Happy New Year, Rob! I hope 2024 is a good year for you and for all of us. Good luck on FOLFIRI. Hope it is not too rough on you.

[utahgal7]

Claudine,

Sorry to hear about your husband's nausea on Lonsurf/Avastin. That's tough. A cancer friend of mine says Aprepitant really helps her with chemo nausea, although she is not on Lonsurf/Avastin. Maybe this medication could help your husband's nausea and vomiting.

[Rock_Robster]

Claudine,

Sorry to hear about your husband's nausea on Lonsurf/Avastin. That's tough. A cancer friend of mine says Aprepitant really helps her with chemo nausea, although she is not on Lonsurf/Avastin. Maybe this medication could help your husband's nausea and vomiting.

Aprepitant is great. Even more so when taken as netupitant/palonosetron, branded Akynzeo. I have it before all chemos now.

[claudine]

Thanks guys! He's on something that does help with nausea; the main problem is diarrhea - he was finally doing much better with his LARS (1+ year post ileostomy reversal), and now it's back to living on the toilet/wearing Depens... He's taking Imodium, and we've been very careful with food; I hope things improve a bit each day before the next cycle.

I think dynamic dosing is super important with these later lines where it’s all about sustainability

Yep, that's the idea - he's taking the maximum dose right now, but if it hits him as badly the next go around, it can be reduced. Fingers crossed it's like for you and does get better. I hope you get good news and shrinkage/low CEA with your Folfiri experimentation!

[O Stoma Mia]

Everyone doing OK out there? Hope this means you’ve all been distracted spending the holiday season with loved ones, or doing something you enjoy!

Rob

Yes, I noticed that this message board was particularly quiet from Christmas through New Year's Day.

I was expecting to see some New Year's greetings from old-timers here like weisssoccermom, but nothing showed up on the board. Hopefully everybody is safe and sound and just enjoying the holiday season.

Happy New Year to all, and best wishes for a healthy and happy year.

Take care ...

ӧʂɱ

[Siti]

Hi Rob,

Glad to hear you're feeling better and I pray that your current treatment works well again.
I hope you had a good break during the holiday season and wishing you and yours a Happy New Year!

Looking forward to hear good news from you.

Best wishes,
Siti

[AmyG]

Howdy strangers!

All is going well in my neck of the woods. Nicholas will be *5* in March. He starts school this fall. Idk what I'm going to do with myself. And to think, at one point we didn't think either of us would survive to even meet. Time is flying by and I'm savoring every minute of it.

The farm is continuing to grow. We put one steer in the freezer, have a pig on the way to the freezer next month and I lucked in to a 2 day old calf this week that will also go in the freezer in about 18 months! I'm overrun with chickens and have plans to start raising heritage breed turkeys this year.

Kids are all doing well, super active in sports. My oldest daughter blessed me with a grandson this year. Both active duty sailors are nearing the end of their enlistments, had another kid graduate high school and she's doing well in college.

As for me, I have my annual scans coming this spring and I'm not overly concerned. Will be nice to hopefully read that I'm "unremarkable" again! I had a Google Photo "Remember This Day" thing pop up on my phone last week, I was BALD and getting chemo. I'm glad I have pictures to remind me of what it was like to be in the trenches of treatment and to see how far I've come since then.

[Siti]

Howdy strangers!

All is going well in my neck of the woods. Nicholas will be *5* in March. He starts school this fall. Idk what I'm going to do with myself. And to think, at one point we didn't think either of us would survive to even meet. Time is flying by and I'm savoring every minute of it.

I had a Google Photo "Remember This Day" thing pop up on my phone last week, I was BALD and getting chemo. I'm glad I have pictures to remind me of what it was like to be in the trenches of treatment and to see how far I've come since then.

You’re an inspiration Amy! I’ve been following your journey since my husband was diagnosed in 2019 and loved reading your stories. So nice to hear an update from you again and I wish you NED forever!