Hi, I'm still researching and learning about my mums cancer stage IV nsclc and possible treatments as the doctors have said more or less that they can't do anything else for her, she's had 2 low dose lots of palliative radiation and no chemo. I've been reading about the immunotherapy keytruda, It mentions something about PD-L1 levels... I'm wondering if this is generally checked when the do the original biopsy to confirm malignancy? As the doctors have never explained it to us. Any help or advice would be greatly appreciated.
Best wishes to all
Annette
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Aussiegal1967
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Aussiegal1967 Hello Annette, so sorry to hear about your mother's cancer. PD-L1 testing is recommended before starting immunotherapy with Keytruda, but the tests are not always "automatic," depending on the doctor and/or cancer clinic. The other two immunotherapies in the US (Opdivo and Tecentriq) do not require PD-L1 testing, but that could change as researchers learn more from research studies. Testing for mutations (eg, EGFR, ALK, etc) is also important to see if someone with lung cancer might benefit from a targeted therapy. Do you know if your mother's tumor has been tested? Have you tried talking about immunotherapy with her doctor? Please keep us posted! Peggy at Free to Breathe is also available to talk and provide information.
Hi Mary, thank you so much for your reply. The doctors have not told us much at, they have not mentioned anything about if she's been tested for mutations or anything.
I have only learnt things through my own research with leads from people on this site (free to breath) that have lead me to start questioning why other treatment options for my mum have never been discussed with us.
All We have been told is mum is stage IV nsclc squamous cell and they have treated her with 2 bouts of low dose palliative radiation the last which she just completed a week or so ago, we are due to get a CT scan in January then see the oncologist end of January next year but nothing ever mentioned about other treatment possibilities.
I feel so helpless, I was watching mum today sitting on the lounge and I had to go out of the room because I started crying, I don't want mum to see me crying because she'd get upset and she already has enough without seeing me cave in...mum thinks I'm a very strong person but it's only cause I never let her see me upset.
It just seems here in Australia that if one is older like my mum in her 70s and has other health problems, then they just concentrate on keeping them comfortable and don't seem to offer a better treatment plan.
Again thank you for taking the time to respond to my question.
The information that your mother has squamous cell lung cancer is very important. The three mutations for which there are targeted treatments occur in adenocarcinoma, a different cancer type, and are not talked about at all in the literature about squamous cell. The doctors would not have tested her for them because of her type of cancer.
In the end, all cancers are genetic diseases caused by mutated cells. There has been work identifying the types of mutations in squamous cell lung cancer, but no targetable mutation with an effective treatment has yet been identified. Your mom would need a very extensive and expensive next generation sequencing panel run on a tissue sample to identify her mutations, and it's very likely that there is no current treatment for any of the mutations that the lab might identify. For all the talk about mutations you hear, scientists have barely scratched the surface and only about 10% of lung cancer patients can be helped with targeted treatments.
I'm on Tecentriq I've been on this immunotherapy for 3 years. I am 71. My cancer is adenocarcinoma stage 4 lungs. Before starting on this trial at Duke University Hospital I had to do many some testing. One was PDL 1 testing. I'm not well versed in meds, but I know age hasn't determined my care. It is such a frightening time for you now and coming from a mom with cancer, it is better for me to see my children's tears. We wept together. It is more comforting. The level of love does not need to be hidden. This is real.. she probably knows you are tearful...remember Mom's know all! Feeling afraid, sad, anxiety Ridden or just plain down is so much easier for me when honEST feelings are there to share. Just my opinion.
First of all, availability and reimbursement of drugs is different in Australia than it is in the US, and most of the people answering questions on this site (including me) are in the US. Australia tends to lag behind the US. Here is an article from May this year that explains some challenges that may be affecting options available for your mother's treatment.
It's possible that immunotherapy for lung cancer is not yet approved for reimbursement from your health care system. It is a very expensive treatment, around $150,000/year in the US, and that may be why your mother's doctor has not suggested it. I suggest asking her doctor about this.
As Mary says, PD-L1 testing is required for Keytruda in the US, but not for the other immunotherapy drugs. A test after diagnosis is going to become standard practice here now that Keytruda is approved in the US as first-line therapy for certain patients (which just happened in October), but it has not been standard. It's not a super reliable test, but in general patients with higher levels of the PD-L1 biomarker are more likely to respond to immunotherapy.
You should be aware that immunotherapy can have very serious, life-threatening side effects. If your mother's overall state of health is not good, her doctor could be concerned that it would be a poor choice for her - that most of the treatments available are more likely to shorten her life rather than extend it. I suggest asking about this in these terms. The fact that she has not received chemo makes me wonder if her doctor is concerned about this. This is also a discussion to have with your mom. Is she game to experience and deal with major side effects in order to maybe have more time with her family? Denzie said earlier that if she wants to fight, she should have the opportunity to do so, but if she mainly wants to be as comfortable as possible, that is going to rule out many treatments.
Hi Anita, thank you very much for replying. I've learnt a bit about other treatments available and I realise that most are not without significant side effects, but it just seems like they don't care when they fail to mention that there might be possibilities out there for my mum. I've learnt more from the wonderful people from this wonderful site ( free to breathe) than the doctors treating my mum.
Hi Peggy, thank you very much for the link, there's loads of information there that I'm cramming In. Thank you for the well wishes.
Kindest regards
Annette
In usa lot doctors cant talk about food MAINLY our end trails and stomach BUT i like talking about it as i was told i had tumor on granulomas lung tissue
Any doctor will confirm when in upper part of lung growing on granulomas lung tissue prob of being cancerous is a sert.
Anyway i was suffering infections antibiotic resistice ALL good stuff like that.
My lung doctor was not hopfull BUT in between scans i was in process of rebuilding my immunity DUE to sterilizingmy stomach bacteria because of stomach inflammation antibiotics.
So i started having swig of almond milk also had to get those stomach bacteria pills
I have read loads of research papers AND its only know doctors are looking closer at immunty and our end trails.
Human extroment from healthy person as cancer fighting enzines.
And believe me when you sterilize you guts and have no immunity DOSE cross your mind
But i was lucky as live bacteria pills i was taking and fortified almond milk did help me rebuild my immunity and saved my lung doctor 14 k on igm injections.
After all you can have all antibodies in world but if youhave no immunity means nothing.
So returned to lung doctor for results of my last scan given what my lung doctor had said about my lung tumor to be told it had vanished.
If its just coincidence i dont know But defo worth sharing.
I would ask doctor for blood transfusion as given stage blood immunity will be tired.
Hi JeffAjaxSmith, thank you for your reply. Thank you for sharing and that's such wonderful news about your tumour vanishing ...you've given me some helpful information to concider with my mum.
And yes, I agree, doing nothing is not an option. I'm starting to become disheartened with the treating doctors my mum has.
While Keytruda requires a positive PD-L1 test a similar drug, opdivo, does not. Here in the US Opdivo was first approved for use against squamous cell lung cancer about 1.5 years ago. First the patient must experience progression on a platinum based chemo. The cautionary information that Anita gave you applies here too.
I find it disconcerting that they haven't ordered it for her. How is her health aside from the cancer? Is she able to cook for herself, get in and out of bed without help? Do simple chores like cooking? Dress herself? On any of the paperwork you've received does it mention an ECOG Performance Status score?
Please know that at stage 4 all care is palliative. It is rare to find a dr anywhere who will perform curative treatments on stage 4 cancers. The goal is to extend life with good quality.
With the new information you were able to provide (squamous) I was able to reduce the number of clinical trials you wanted to investigate to 4 trials total. Your moms history of diabetes and heart or cardiovascular disease disqualifies her from participating in any of them and excludes compassionate or expanded use. I'm very sorry to report that but ask her dr for confirmation anyhow.
At this time you might inquire about the use of Gemzar as a single agent treatment. It would be less harsh on her.
Thank you for taking time to message Denzie, I guess I'm trying to clutch at straws hoping there is something that can be done. I will have a big talk to the oncologist when we go back. I thought I'd try and seek out some options so I could discuss with him when we go back and see him but it's not looking too promising I guess.... This is so hard.
Please, please, please ask about Gemzar. Also Tarceva works in about 10% of the population that does not test EGFR+ in adenocarcinoma, perhaps they could see clear to give it a try. As I said before, she should be allowed to pursue life prolonging treatment as long as she wants to try.
When time permits later today I'lll look for my resource on the EGFR point so you can share it with her oncologist.
The more I think about this the more perturbed I become. Why will they not at least try carboplatin? They can manage her diabetes with careful monitoring. And they can reduce dosage toprotect her. Another strong possibility is afatinib which has greater success than Tarceva in squamous cell lung cancer. Afatinib was approved here in the US as a second line treatment for squamous in April of this year. Perhaps they would consider afatinib as an extended care request (compassionate use).
Make sure you take a look at our website freetobreathe.org - you will find solid information there with helpful materials you can download. All of our materials are free and have been carefully researched.
Aussiegal1967 Its me I'm still waiting Go back to lung doc in February to see if they found a center that will except me and my insurance he still Amit said nothing about the stage 4 , my PCP told me she read it in my record she thought I knew keep up the research for me(Thanks) Hi Everyone Hope everyone is OK even having phone trouble U Guys are always in my Prayers,..😇
I would like to thank everyone for all the well wishes and support.
I have learnt so much since posting on here from all you lovely people that take the time to not only respond but to follow up on research in regards to my mums diagnosis and my questions.
I'm going to try take a break from further researching and posting for a day or so. I'm getting bogged down and finding my days are being consumed all through my waking hours with researching and mums diagnosis, I don't know if I can restrain myself though as I find the more knowledge I have, the more I want so I can try help mum. I just need a day or so, so I can breathe. It's a real roller coaster as you all know.
Understandable and wise. You are right to listen to your instincts. Let everything settle and re-approach when it feels right. Will be thinking of you.
Annette, I have stage 4 nsclc. I have been on Opidivo for 16 months with remarkable results. I know it works in about 20 percent of patients. I have read where patients had already gone to hospice, started treatment and were able to go home after two rounds. I lead a normal life with a little joint pain.
Hi Rivertown3, I hope you are well and thank you for your reply. My mum was started on Opdivo this month and only had 2 treatments so far but with unbelievable results already.
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