My 57-year old brother was finally diagnosed Friday with Invasive Mucinous Adenocarcinoma after being misdiagnosed with pneumonia since June 2020. It started with consolidation in the lower right lobe, but now his right lung is fully compromised and it has spread to his left lung. So he's had the cancer untreated now for almost a year and it's so widespread. Are we too late? The thoracic surgeon who did the wedge resection removed three tumors for testing and says he won't refer to a cancer hospital until he gets the results in a few weeks. He's ordering a PET and MRI, but again, they won't be for a couple of weeks (we're in Canada). We're concerned that it's going to be at least another month or so before he even starts any treatment, if any is available. Is there anything we should be doing, asking, pushing for? Are there any treatment options? Any advice would be appreciated. We understand Dr West is the expert in this type of cancer. Is there someone in Toronto similarly experienced? We understand it's a process but isn't further delay dangerous or is that irrelevant at this stage? Admittedly we're in shock and panic mode! Thank you.
Are We Too Late?
mbrrna
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Reply # - May 11, 2021, 12:41 PM
Hi mbrrna, Welcome to Grace.
Hi mbrrna,
Welcome to Grace. I am so sorry to know about your brother's diagnosis. Of course, y'all are in shock and panic mode. It's what happens to us when a cancer diagnosis hits in the home. most of us are shocked then stressed while we try to make sure our loved ones get the best care and at the same time, you realize you have a lot to learn in a short amount of time. It's why Dr. West started Grace and why I never left.
Unless your brother is in immediate need of care it is without question best to wait on study results. You want to get it right the first time, even if it means waiting. Especially now, many if not most Invasive Mucinous Adenocarcinoma have a Kras mutation and there are some very promising clinical trials happening that may be appropriate and available. But trials have tight restrictions, often including whether or not a person has had a specific treatment or the sequence of treatments or whether or not they've had treatment at all. So careful planning is important.
I'll ask about specialists in the Toronto area.
Waiting is one of the hardest parts and you will often wait (it can be helpful to know where the stress is so you can name it). On a similar note, my husband was diagnosed with ortho issues first and PT made matters worse along with all the other diagnostic time consumers it was 5 months before his pancoast tumor diagnosis. And against all odds, he's still here 12 years later.
You're not too late. To paraphrase a friend, there's always a reason to be hopeful.
All the best,
Janine
I really like this post. There are more therapy options today for many variations of lung cancer but chemo can still play an important role. Plus the title and first couple of PPs are a must for us all.
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.
Reply # - May 11, 2021, 02:17 PM
Dr. West said, "Natasha
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.
Reply # - May 12, 2021, 09:12 AM
Another recommendation from
Another recommendation from Dr. West, "One more great doc also at Princess Margaret is: Adrian Sacher, MD, MMSc, FRCPC"
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.
In reply to Another recommendation from by JanineT GRACE …
Reply # - May 12, 2021, 04:17 PM
Thank you so much Janine and
Thank you so much Janine and Dr. West for the recommendations and the articles. He is being referred to Princess Margaret. Much appreciated.
Reply # - May 12, 2021, 09:57 PM
Very best of luck to you and
Very best of luck to you and your brother. Let us know if there's any way we can help.
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.
Reply # - June 25, 2021, 03:13 PM
Finally Got The Biopsy Results
Hi Janine,
We finally got the biopsy report (took 7 weeks so he still hasn't had any treatment!). Having trouble understanding what this means - would you be able to put it in terms we can understand? Does this mean he has the Kras mutation? If so, which one? Is there a targeted therapy for this mutation or are we looking at a clinical trial? What does the PD-L1 mean? Thank you!
- Invasive mucinous adenocarcinoma
- PD-L1 IHC 22C3 pharmDx result: Tumour Proportion Score (TPS) <1%
Also:
Reply # - June 26, 2021, 03:26 PM
Hi mbrrna,I know that's been
Hi mbrrna,
I know that's been a long 7 weeks. I'm sorry but we aren't equipped or licensed to explain a person's medical reports. With that said it looks like your brother has <1% PDL1 expression which means he would be expected to have less benefit from immunotherapy than those with higher percentage thus either 2 immunotherapies or chemo plus immunotherapy is likely a treatment option. Here is up to date info on PDL1 I use a browser page search for "<" to find info specific to PDL1 score of <1.
I don't know that the KRAS info you shared points to a kras mutation that is driving your brother's cancer. If it is kras it doesn't seem to be the kras G12C mutation that is responsible for the worst kras mutations. But if it is there's new targeted treatment for it.
So, if your brother has the driver mutation kras g12c he will possibly be offered immunotherapy as I suggested in the first paragraph then the targeted treatment for g12c or maybe a trial.
His onc at Princess Margaret will be best equipped with possible trials now or after 1st line treatment that best meets your brother's specific needs. Let us know how he will proceed and best of luck
Janine
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.
In reply to Hi mbrrna,I know that's been by JanineT GRACE …
Reply # - June 26, 2021, 04:29 PM
Thank You Again
We were trying to figure out if it was the G12C mutation as we saw that the FDA had just approved a targeted treatment. Dr. Google hasn't been that helpful typing in those numbers from his report. Just trying to educate ourselves ahead of time. Many thanks again for the response!
Reply # - June 27, 2021, 06:35 PM
You didn't need to tell me
You didn't need to tell me that. It's clear from my side what and why you're asking. I can't ask our faculty about this but I am interested in what kras statement means. I've spent some time myself on google and can't find exactly what it means either. I've learned a lot about varient sequencing, probably the main peice of info I learned was that there is much more to know before I could have any assurance about what that sequence means.
However, there seems to me to be an up and down side to any kras mutation type. The g12c kras that has the new targeted drug is the kras type that is most likely to not respond well...except there's a new drug to counter that. The other types of kras nrespond better.
If it is kras it appears that it would be q61k protein change and the g12c protein change would look more like this in the "p." protein change.
Whether or not there is a kras mutation it's likely that chemo and immunotherapy will be offered at first line. the g12c varient's new drug is given 2nd line, hopefully long enough away to settle in on some good understanding of lung cancer. So good news bad news is relevant here ;)
Hope y'all see the oncologist soon soon.
Janine
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.
In reply to You didn't need to tell me by JanineT GRACE …
Reply # - June 29, 2021, 08:07 AM
Got the Mutation Info
Hi Janine,
Thank you for taking the time to research. It's sincerely appreciated. Thought you'd like to know the oncologist just confirmed he has the Kras codon 61 mutation, so starting with two chemo drugs plus immunotherapy next week. They're hoping there may be a new drug trial in a year or so for Kras, as apparently there's a lot of interest in it.