any advice for starting chemo?

[lakeswim]

My sister has stage 4 NSCLC and has stopped pembrolizumab due to side effects and disease progression, and is now on home oxygen. Starting carboplatin and pemetrexate next week. Any advice for handling the chemotherapy, side effects etc? She is in the UK. Thank you for any help you can give.

[lakeswim]

I meant pemetrexed not pemetrexate!

[Jenniferroseolson in reply to lakeswim]

Hello, yes pemetrexed plus carboplatin is a standard of care chemo treatment. I had six rounds, with treatment every three weeks. I had a very predictable cadence to treatment on Monday: felt okay until Wednesday evening and rested/slept a lot Thursday and by Saturday was back to my regular activities. The subsequent two weeks were fine, and then start all over. The fatigue is rough and is best treated with a lot of patience and self-acceptance that she will need to rest to let the chemo do its work. If she can say yes to people who offer to help, that will help a lot. The carboplatin gave me a terrible metallic taste in my mouth which made water unappealing. She will want some mild flavored drinks to stay hydrated. I would put a little fruit juice in a large glass of water to drown out the metallic taste. I also got mouth sores; her doctor can prescribe a miracle mouthwash to help. If she isn't hungry, she may be more willing to drink a smoothie that will give her some nutrition. I had bad swelling with treatments, so when I was lying down I tried to elevate my legs. My hair thinned, but no one except me and my hairdresser noticed. If she takes narcotics for pain, be sure to prevent constipation, because that was a far worse pain for me than any of the actual lung cancer chest tubes/procedures. Best wishes to you both

[lakeswim in reply to Jenniferroseolson]

Tha nk you so much, this is very helpful!

[lakeswim in reply to lakeswim]

Also, what is the name of the miracle mouthwash that worked so well? Thank you

[Jenniferroseolson in reply to lakeswim]

I actually think that was how the doctor referred to it—available by prescription only

[lakeswim in reply to Jenniferroseolson]

Thank you!

[JanetteR57]

Roy Castle lung cancer foundation in the UK produces amazing literature and information online and in print and runs a nurse led helpline, online and in person patient support groups. I've been part of its patient literature review panel since 2011 and they regularly update their information. This is their booklet on chemotherapy - they have them on surgery, radiotherapy, targeted therapies, immunotherapy as well as information about many aspects of living with lung cancer (e.g. eating, travelling, working, etc). Hope this helps... good luck to you and your sister...

roycastle.org/app/uploads/2...

[lakeswim]

Thank you! I have downloaded the booklet and sent it to her. I appreciate it.

[Denzie Moderator Volunteer]

I experienced that awful taste, too. Ice cold water was tolerable. I had foods with high liquid content. Applesauce, puddings, cream soups, mashed potatoes with gravy, ice cream, yogurt, jello, frozen fruit bars. I drank lots of milkshakes and smoothies. Add protein powder to them to help healing. 6-7 small meals is easier to digest than 3 normal ones Calories are more important some days than balance

Use by plastic or bamboo eating utensils. Lemon drops between meals helped.

Have anti diarrhea and stool softeners both on hand. It can go either way. Also check with the doctor to see b if she can take Claritin or it's generic the night before through two days after chemo. Many report that it helps relieve some bone ache.

Let us know how she does.

[lakeswim]

Thank you, these tips are so helpful. Did the chemo shrink the tumor? I suppose after the immunotherapy stopped working, this is going to be the next question.

[Jenniferroseolson]

i was diagnosed 9plus years ago before immunotherapy was approved for lung cancer. So yes, I became stable with all tumors seen on scans as likely scar tissue/no metabolic activity. There is hope. I didn’t have progression of disease for four years, and then I had SBRT (targeted radiation) and immunotherapy and have had no evidence of disease since 2020

[lakeswim in reply to Jenniferroseolson]

That is a very hopeful story, and something everyone should hear before starting chemo. Thank you for sharing it