+ Reply
Log in or Register to participate in these discussions
Maintenance Treatment for NSCLC 4B or NO??? REALLY INCLINED TO NO!!
5 Posts
Diagnosed with NSCLC 4B Sept 2020.
- Completed 4 treatment cycles every 3 weeks of chemo & immunotheraphy with (Cistplatin, Pembtrexed and Pembrolizumab)
- my molecular markers were negative so I did not qualify for any targeted treatment (EGFR, ALK, POS negative & PDL1 - low)
- targeted treatments are more successful but I'm not getting that, rather more broad and generic cocktail of drugs which they feel has a low success rate (so basically I need a miracle)
- It was said that there was also cancer in my lymph nodes and abdomen.
- no tumor anywhere

Treatment experience:
- grateful the side effects were not as severe, except for extreme fatigue ranging between 7-11 days. I was in bed for 20+hrs and only got up for bio needs. Meals were brought to my bedside etc.
- had severe back pain (lower and upper) - all subsided now
- joint pain (said to be as a result of the immunotheraphy) - wrist, elbow - lasted around 6-8 weeks - all subsided now
- burning in abdomen - said to be from the dextram (pre-treatment meds)
- current pain in abdomen - ongoing now for 3 weeks - hydromorphone not working and oncologist says to follow-up with GP...

Next step - and this is where I have a dilema
- oncologist wants to put me on maintenance treatment of (Pembtrexed and Pembrolizumab) (the less aggressive chemo & immunotheraphy) for the rest of my life
- every 3 weeks, an IV session
- pro? they hope it works and they say eventually it stops working or the body stops tolerating it
- cons? well I'll have to find out how my body tolerates it...

Current state of mind
- I don't want to find out how my body tolerates it!
- I don't want to commence this maintenance treatment - I just want to live a normal life and I'm not sure how this is meant to happen with treatment every 3 weeks...

2 Replies
65 Posts
I am so sorry about this situation you are in. I was lucky that I did have EFGR mutation, and was on a Targeted drug , it stopped working, so on 4 rounds of chemo, got febrile neutropenia, hospitilized. It's been three years of one treatment or another, starting, then failing.
I am now in your boat, I'm on last line of chemo they can offer me, if this line fails they may consider radiation.
There is no maintenance on this chemo, just have to stay on it rest of my life, with breaks here and there to let body rebound.
There are people that have been on Alimta maintenance for 4 and 5 years, and who knows something new might have been developed by then.
This is a journey we are on, steep and slippery slopes, highs and lows,
I would suggest you ask for a port if you don't have one, it will save your veins from damage.
I feel I have been given three years but they were not easy, the targeted drugs have some nasty side effects as well, so does immunotherapy. Hospitalized 4 times in three years.
Good Luck and let us know how things go.
Dauntless (Dianne)
1867 Posts
I don't have any experience with NSCLC but I certainly appreciate what you are feeling about this decision that faces you.
Your current state of mind suggests you are leaning towards not continuing with treatment, yes?
Intellectually you know that any treatment decision is your own, they say, and your medical team has to respect any decision you make.
But from an emotional, psychological perspective, are you feeling you will face resistance or objections from loved ones if that is your choice?

Do you have access to a counsellor or therapist, or a trusted good friend who can help talk this through with you? Sometimes an outsider's perspective is so helpful when personal attachments are not at play or at risk.

I've found this Personal Decision Guide (attached) helpful for me when I had to face treatment decisions, especially around understanding all the options available, and my perspectives, your preferences around what was important to me.
Whatever you decide, you will always find support and a "listening ear" here.
+ Reply