Tom Galli

So I've just had my first oncology appt and been told that my EGFR mutation isn't the right one for targeted therapy and because adenoid cystic carcenoma tumours are slow growing there isn't any treatment options apart from monitoring, gutted to say the least 😥

Hi @LSholt, I'm so sorry you have to be here, but this is a great group.
Do you know what protocol your team is following? Just curious-- I started as a IIIA and the tumor board started me with the Pacific Study protocols: chemorads-- carboplatin/paclitaxel -- followed by immunotherapy (durvalumab). 
Regarding the cough: has anyone done a scan for pneumonitis? That's a kind of inflammation of the lung. Coughing can be a signal of that inflammation. You'd want to know that before starting immunotherapy as pneumonitis can become an issue with some of them. Do you know what the immuno agent will be?
This is hard, I know, but you are doing great. Hang in,
Karen

Fingers crossed. Let us know how you get on. When you get to the immunotherapy, let me know if you need some pointers to various groups. They can be helpful to navigate the weird world of immuno.

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Blimey! Definitely seek a second opinion and jump up and down if you have to. I am at UCLH MacMillan Centre in London, which is only an hour away by train to Euston from Coventry. They have a great trials programme. Others have recommended the Royal Marsden. Good luck.

Tom Galli, thanks for sharing your experience, you've given me a great deal more hope.  I met with my chemo doctor today and he is taking the Taxol out my regimen because of severe reaction I've had the last 2 times, will continue with the carboplatin, only have 2 sessions left and hoping it won't affect my outcome. Thanks for listing the immunotherapy resources as well, I will check those out for sure.
RJN, he did prescribe the syrup with codeine, hopefully that will work and I can get some much needed sleep, but it's good to know there are tablets too 
I appreciate you all taking the time to answer my questions, it helps so much to be able to share with others who are going through the same thing.

Lisa,
Sorry, I missed your post. We share a diagnosis and treatment plan. My first line (first treatment) was chemoradiation with Taxol and Carboplatin infused every week and daily radiation. This treatment lasted 6 weeks (Monday-Friday) and it worked. That was nearly 20 years ago!
There are newer conventional drugs these days, but the old reliable Taxol and Carboplatin are best at dealing with solid tumors and that is why they are used. They do come with side effects, however. Mine are a neuropathy that causes a painful burning sensation in the toes (called Taxol toes) and a loss of feeling in my fingertips and ringing in my ears. But my first treatment plan was used to allow surgical resection of my tumor and it worked! I've been hanging around here for a long time and these are some of my lessons learned on infused chemotherapy: "I've Got Veins, Maybe"; "Insomnia and Lung Cancer"; and "Reflections on Infusion". Your most important takeaway is chemoradiation with these drugs can work. Most importantly, following up with Immunotherapy often is very, very effective. I know many on this Forum who've had first line chemoradiation followed up with Immunotherapy and after 2 years on Immunotherapy, they have no evidence of disease (NED) and no longer require any treatment!
So there is a vast amount of hope today for lung cancer treatment. 
Stay the course.
Tom

Lisa,
Thanks for the additional information.  You are doing the right thing in advocating for yourself.  We need to be active in our treatment plans.  You mention the difficulty in waiting during the diagnostic process.  If you read other posts you'll see that you have lots of company on that point (including me).  The anxiety is perfectly normal, but seems to reduce once we get a treatment plan.

One thing I've heard people find useful when taking chemo/radiation treatments is to have a "palliative" specialist added to their medical team.  This person can work with the patient and doctor to help reduce and address side-effects sometimes before they occur.  They have a lot of knowledge of additions to treatment that ease or eliminate them.  Please speak to your lead doctor about this and get their opinion.  For my part I've heard enough to know that if I do go through chemo I'd look for that support.
And yes, Dr. Google is contradictory and depressing.  I'd rather hear from my Oncologist than any webpage.
Lou

Thanks so much for your replies.  Before I started treatment and was so frustrated/scared at the length of time it was taking to actually get started with treatment, I contacted the lung cancer center at Atrium Baptist Hospital in Winston Salem, immediately got an appointment there and got established with a great doctor there.  Since he was recommending starting out with chemo and radiation, and the radiation would be given every day, he arranged with my local cancer centers to immediately begin treatment here so that I would not have to drive from Asheville to Winston Salem every day.  Once I am through with these, he will become my primary doctor again and I will get all future treatments, including the immunotherapy, through him.  I feel very confident and comfortable with going there and will have access to a broader range of treatment options and also clinical trials if needed.  I would like to acknowledge that I have been treated very well at the local centers I am currently going to, I just felt I needed to strongly advocate for myself on not just the length of time everything was taking here but also looking ahead to where I might have the most options for future treatments.
I meet with my chemo doctor today and will discuss the possibility of switching to a different chemo, even though I only have 2 more treatments scheduled.  Of all the many side effects I have experienced from the chemo and radiation, most are tolerable or handled well with other medications.  But this persistent cough has not been manageable and I'm not sure I can handle 2 or 3 more weeks of it, the episodes are just so bad.  RJN, Thanks for the suggestion of the syrup with codeine, I will also ask him about that.
LouT, thank you for listing more resources, I will definitely check those out, and I am glad you said to stay away from looking at statistics on Google.  Of course, that wàs one of the first things I did when I received my diagnosis, wanted to know exactly what I was facing, but got confusing and contradictory info and I also came to realize everyone is different and may respond differently to treatment.  So I will remain as informed as I can and try to make treatment choices based on my doctor's opinion as well as what I feel is right for me.
I am so grateful for this forum and having a place to share.
 
 
 

Hi Karen,
Just a quick welcome. Even if there aren't folks here who share your specific diagnosis, we understand diagnostic and treatment experiences. I hope you'll keep us posted.
 
Karen

Hi Beth,
The reason he says "if it's cancer, it's probably adenocarcinoma" is because that's the most common type of LC. The diagnostic process is a long one and involves multiple tests and processes, the PET being one of them. 
I don't know much about your health care system, but you will need some info about how to be an effective advocate. I have a good resource posted in my footer. 
I also don't know how they will respond to her case if she is not planning to give up smoking. 
Best of luck as you and she move ahead in this process. You might find the caregiver strand here helpful as well. 
Karen
 

Go Ken! It's so wonderful to read of all the positive movement. Enjoy all these moments!
Karen

You know, Johnny, I read your post so quickly I overlooked that initial phrase-- sorry about that. Yes, I would assume that needle & tissue biopsies are the same, especially given the doctor's comment about waiting for results. (Tissue-based biopsies take several weeks.) 
Fingers double-crossed that the infusions go well and that they deal the tumor a mighty blow. 
Karen

Rikki
NED is wonderful news I'm happy for you
Chuck

Johnny, 
I'm late to this discussion, but I wanted to second and thrid what Tom and Rikke have said. And, add that a tissue biopsy is considered the gold standard. I hope that's already happened, or is on the calendar. 
Best wishes,
Karen
 

Johnny,
Rikkie's suggestions are good, especially about what caused your lung cancer and survival statistics. All that matters now is how to treat it.
Your genetic testing will reveal if your cancer can be treated with Targeted Therapy or Immunotherapy. The former only works with a small percentage of those with adenocarcinoma. Immunotherapy can work with all forms of lung cancer and I know folks who take it with MS. So let us know what the biomarker testing reveals.
I have too much experience with pain and I try and avoid opioids also. My avoidance challenge is sleeping. My doc prescribed Xanax to be taken about 30 minutes before bedtime. It relaxes me enough to allow sleep, sometimes. When my post-treatment symptoms combine to elevate my pain level to intolerable, I use Tramadol. It is easier for me than other pain meds, and I concurrently use laxatives to avoid constipation.
Stay the course.
Tom

Hi Beth and welcome. Lou's information and advice is excellent. I just want to add something in answer to your question about the PET scan. Ordering a PET scan means that the doctor is suspicious that what the CT shows could be cancer. A PET scan shows areas in the body where there is high metabolic activity. Since cancer cells usually grow faster than normal cells, cancer will normally "light up" on a PET scan. If the suspicious areas in the lungs 'light up" it definitely increases the likelihood of cancer, though, as Lou says, only a biopsy is definitive. If the cancer has spread to other parts of the body, those would likely register, too. The higher the numbers on the PET, the higher the likelihood of cancer.
Some things to know, though:  sometimes other things like infections can also register on the PET, and sometimes cancers don't. My adenocarcinoma didn't show up there because it was small and slow growing , so not enough metabolic activity to register.  Even though the PET isn't definitive, it does give the doctors information about whether to proceed with biopsy or to look for other causes for the abnormalities on the CT and Xray.
If you let us know when your grandma has more test results, and what questions you have, we can probably give you more information. Let us know how we can support you.That's what we're here for!
Bridget O

JuneK and Sally,
Hang in there, both of you!  It's definitely worth looking for clinical trials. You're in my thoughts.
 

Rikki,
Next to "ice cream" NED is my favorite word.  I'm so glad for you and look forward to many more such reports in the future.  You've been through a lot and you deserve to be well.
Lou

I’m thrilled for you, Rikke. Your sleep will be sooooo sweet with these results drifting through your mind. Enjoy.
K

I am afraid we have seen the last of summer here in London today - but what do I care? Sunshine can be bought - NED (or whatever they call it) can’t - whoop! But definitely a nice bottle of vino this evening!

Hurray for NED, just in time for some more Summer fun! Hope this will stand for many years to come. Celebration time!

Hi Karen and welcome. I'm sorry to hear what you're going through. My lung cancer was early stage and "garden variety", so the treatment was pretty standard. However, earlier I had a gynecologic cancer that was Stage 3 (large and spread to regional lymph nodes). It was aggressive and very rare type that had no published studies about it. My medical oncologist  was inclined to treat it as "garden variety" since she had no evidence of other options. I chose to get a second opinion and sought out a doctor who was considered the "go to" person for rare gynecologic cancers. She had some experience treating women with this cancer and made some recommendations for further /more aggressive treatment, which my med onc was willing to try due to my "dire prognosis".  It worked, I guess, since this was 12 year ago and I'm here today with no evidence of disease.
So, if you can find a doc that has some experience with your specific type of cancer, a second opinion could be a good idea. I found my expert by asking a neighbor who was in a different department at our local teaching hospital to see if he could identify someone for me, and he did.
All my best,
Bridget O