What is a "normal" baseline in survivorship?

[mzvermont]

I've been in treatment for 3 1/2 years for what is now stage 4 lung cancer with bone mets; originally diagnosed in 4/2021 as stage 3. At that time, I completed a pretty standard SOC originally with Carboplatin and 6 weeks of radiation; have had 3 instances of disease progression all treated successfully since then.

I've been on immunotherapy with ipilumumab and nivolumab with no new disease since 10/2022; my oncologist is beyond enthusiastic about my response to immunotherapy and I'm pretty happy, too.

My questions is how are others dealing with apparent NED status even when side effects of treatment are painful- speaking here of neuropathy, weakness in my legs, and a pain in my right torso that is undiagnosed and thought to be from a nicked nerve from an original bronchosopy. These are all conditions I can live with although they are somewhat limiting- I'm not even counting fatigue! I also have a pleural effusion which has been drained twice and I believe this could be the cause of my mystery pain. Fortunately, my breathing is great!

I really hope this post makes sense. I am in treatment at an NCI designated cancer center with an elite oncologist and have a fabulous care team- I just feel frustrated when my goal of being healthy cancer patient seems to be hard to maintain with all the other issues. I'd love to hear from survivors who are also "cancer free" but obviously living with cancer-causation side effects. And you may laugh- but there are so many days I just don't feel good because of all the other stuff!!! And now I feel I need to add just how much gratitude I have for all the additional time my treatment has given me.

[JanetteR57]

Thanks for posting - there is no 'normal' survivorship story as we all started from a different place in the first place, may have different tumour types/stages then with immunotherapy using our own immune system (all different) as a newish treatment, long term studies about survivorship are really thin on the ground.

Some years ago when NCRI (national cancer research institute) led the way in the UK coralling cancer research portfolios, and involved advocates, I joined the lung group in 2013. Back then survivorship timelines for stage iv were not as they are now; SABR/ablation was in its infancy - commonly used for bone/other metastases; targeted agents only available for EGFR+ mutations (treatments for other ALK+, ROS1, KRAS etc all came much later) then only on clinical trials; and radiotherapy/chemotherapy used different doses/delivery methods and intentions.

In our own way, we're all unique but adding to the rich tapestry of survivorship but as we're not part of a randomised clinical research study - our stories are often counted as 'anecdotal' rather than valuable lived experience.

Side effects and late effects vary and as many combinations in their current form are relatively recent, and some patients have other conditions/medications that can be affected and hard to record as 'independent' evidence.

The NCRI worked with the James Lind Alliance some years ago with researchers, medics and patients/carers to identify the top 10 priorities for those living with and beyond cancer as they labelled it - including all types of cancers. I represented lung cancer for the UK in that priority setting partnership and the 10 priorities took much discussion as they tended to differ between patients and medics/researchers. It led to some funding bodies including the NIHR calling for more research on several aspects in that work. Sadly NCRI closed in 2023.

Many studies have been done with long term survivors of breast, skin, testicular, and other cancer types but lung cancer didn't have sizeable survivorship numbers to be 'meaningful' in the way preferred for in research evidence over 10, 15, 20 years etc.

However that is changing all the time. Groups like this have important roles to play in sharing experiences and ensuring side/late effects of treatments are recorded. Most side effects can be treated but as you've found, can involve yet more medications with their side effects. For many patients quality of life (rarely studied in research) is more important than the length of their survival but overall survival or progression free survival is the holy grail for drug companies to get their treatments licensed.

Like you, I'm immensely grateful for my treatment which was open surgery in Dec 2010 to remove a 7cm Adenocarcinoma (NSCLC) but still have other health conditions. Who knows whether due to ageing or whether my experience left me with a weakness to pick up chest infections of every type each one leaving me with other symptoms more debilitating than the cancer or its treatment were all those years ago?

Such appreciation shouldn't stop us from being frustrated even down about some aspects of our lives changed as a result of our diagnosis or treatment.

Personally I found reading about experiences helped me - there were few groups/platforms like this around. Ifound a couple of books really helpful at the start - written by doctors but not too scientific/clinical - these were 'anti-cancer a new way of life' by Dr Servan Schreiber and 'cancer is a word not a sentence' by Dr. Rob Buckman. They helped me put things in perspective as has life since (lost a niece (33) and sister (66) having already lost a sister in 2001 (40) and none from cancer) to appreciate the different conditions around less prioritised for research than cancer where patients have to deal with the myriad symptoms either from conditions or treatments.

I've always found distraction helps me and keeping as active as I'm able to - a distance swimmer prior to my treatment, swimming has helped develop my lungs without being exposed to the elements and the water supports my weight whereas other activities increase my breathlessness which has developed in the last few years after infections.

It's positive that your breathing is good - maybe walking in the open air may be a way to help lift your mood and keep your joints/muscles/nerves all moving as intended. I'm convinced that stretching out for swimming helped me recover from my open surgery which disturb nerves, muscles and ribs.

Good luck for your continued treatment and finding a way to cope with everyday life. have a good festive break if you can.

[Denzie Moderator Volunteer]

I'm new to IO but 14 years into survivorship and advocacy. Please talk to your oncologist about a dose reduction. It is relatively common in targeted therapies to try.

There is an important patient movement that asks doctors to find the lowest effective dose for treatment versus the highest tolerated dose for the very reasons you brought up. Quality of life is important and should be a part of every discussion about goals of treatment.