Maintenance chemo-every 3 weeks for 2 years-

@mil63
I can relate. I have been on chemo for 3.5 years for pancreatic cancer with the last 2.5 years being a maintenance dose. It can still be a challenge. For me, helping others less fortunate really gave me perspective on how lucky I really am. Volunteer to spend time with cancer patients at a children's hospital. Read to them, Play games with them. Talk to them about their journeys. Kids are typically honest, so he will hear the truth. Is that something that he'd be willing to do? Or, is there anything else that you can think of?

hi @mil63 - that is incredible news about hubby's clear scan. I hope you two are celebrating that! I can empathize with how challenging it is to accept the difficulties of treatment that is ongoing for an extended period. If I was in hubby's shoes, I would like to have some fun things to look forward to in the good weeks. That might not be practical for every cycle, but maybe every 3 or 6 months? And knowing the week of chemo is tough, hopefully he can plan for that to be a restful week to recover. It definitely helps me to have something positive (trip, event, family time) as a counterbalance to the hard aspects of cancer treatment. He's fortunate to have such a supportive spouse - I hope you're managing all of the caregiving stress ok, too.

I think we are still adjusting..
The fact that we do plan fun things, but even then his energy level is not the same. He is discouraged this week . When he is discouraged, it makes me internally very sad .

Inquire about pulmonary rehab. The pulmonologist is the one who needs to order it. If they scoff at recommending it, tell them he needs a post chemo PFT to establish a new baseline.

Lung tissue does not regenerate so what was once cancer tissue is now scar tissue. Pulm rehab will help strengthen the muscles that support breathing and optimize the available lung tissue.

And this is what we refer to as the new normal.

@mil63 I take a targeted therapy medication daily that makes me fatigued. One thing that has helped me is taking ginseng. It improves my energy which let's me be more active during the day, which improves my overall outlook. I don't know if that would help hubby, or if it's ok with his meds, but it's something you could ask his oncologist about trying. It was recommended to me by the functional medicine team at my cancer center.

Here's a link to the one I use, Oregon's Wild Harvest:
https://www.amazon.com/dp/B00K6URPTS

@mil63 How wonderful that your husband has achieved NED (no evidence of disease) after his diagnosis of stage 4 lung cancer last year!

It’s so hard, after going through everything to get there, not to have cancer firmly in the rear view mirror and not able to bounce back to life as it was before diagnosis.

Personally I have found the mental side the hardest thing to deal with being in this next phase of NED but not out of the woods. I wonder if your husband might find it beneficial to talk to a specialist cancer therapist.

The PET scan showed no significant avid or abnormal activity-FDG numbers were good and within normal. We thank God for such a blessing. So I assume that means NED however we know that we need to continue maintenance every month . Scans will be every 3 months.