My father is 72, white, and a former smoker (quit in 2000). In September 2015, a slightly cloudy area at the bottom of his right lung was diagnosed as bronchioloalveolar carcinoma (BAC).
After chatting with several pulmonologists/oncologists in his hometown and being told this is a very slow growing cancer, he made an appointment with the top lung surgeon at Yale at the end of October to find out his options.
From the beginning of September to the end of October, his breathing took a huge dive. A scan on October 30 showed that the cancer had grown in the right lung and spread to the left. Oncologists at Yale immediately tested him for the appropriate biomarkers, but there was no match.
He was put on system-wide chemotherapy the following week. He went through 4 rounds of chemo. At first, it seemed like the chemotherapy was slightly reducing the cancer, but the second scan showed some growth in both lungs.
On February 1, 2016, he was given immunotherapy (despite not having the appropriate genetic markers). Within two weeks, he was in the ICU with an extremely low O2. Scans show that the cancer has grown, and Yale is telling him he has no more options.
My questions for you are:
1) Do you think it is worth getting a second opinion? If so, where would you go? I have heard good things about Sloan Kettering and Mass General. Do you know any doctors in the North East who specialize in this type of cancer?
2) Can you think of any current trials for folks like my dad?
2) Do you have any additional advice based on the information I have provided? We are on very good terms with the doctors at Yale, and I'm sure they would entertain any ideas you may have.
So many thanks in advance for your help.
Reply # - February 19, 2016, 08:33 AM
Hi Keastman,
Hi Keastman,
I'm very sorry your father is in this position. It's very possible the oncologist has suggested no more treatment because your father is considered to weak to withstand treatment. Often on treatment is suggested if this is so. There are 2 goals in treating stage IV lung cancer; to enhance longevity and to improve/maintain quality of life. All decisions stem from these goals.
If that's not the case and your father is well enough then there are treatment that would be worth trying. Tarceva is shown to have efficacy in some people without mutation and is approved for 2 and later lines of treatment. If he progressed through first line chemo doublet such as carboplatin and alimta it's likely he'd do the same on other chemo drugs but it may be worth a try if doctors and he think he's well enough to try.
Unfortunately some BAC is very aggresive or can become aggressive and nothing you throw at it seems to help.
A 2nd opinion is never a bad idea though Yale cancer center is rated very high. Sloan Kettering and Mass General also have very highly recognized centers. Yale, Kettering and Mass General are all research centers and would be the best places to find a trial right for your dad.
Lastly comfort care is very very important to those with stage IV disease. This is a new article from the New York times that's very important to understand.
I know this is a hugely difficult situation for all involved and I know you want the best for your dad. He's lucky to have you in his corner.
All best,
Janine
Reply # - February 21, 2016, 06:42 AM
Janine, did you mean to add a
Janine, did you mean to add a link for the NYT article?
Take care, Judy
Reply # - February 21, 2016, 08:30 AM
I think the link that Janine
I think the link that Janine meant to provide is this one: http://www.nytimes.com/2016/02/16/health/in-palliative-care-comfort-is-…
I would also agree that a second opinion is valuable when you are at any significant decision point, if only to get corroboration that you've chosen a good path.
JimC
Forum moderator
Reply # - February 22, 2016, 05:54 AM
Janine,
Janine,
Thanks so much for the reply. Why do you say that Tarceva can potentially work without the appropriate biomarker? Do you know of any research or a name of a doctor that says it does? We are being told at Yale that Tarceva is probably not an option because he does not have the biomarker. If you have any information that can help me to convince the doctors, I would absolutely love to have it.
I think we will take him to get a second opinion. If anybody is aware of a doctor that specializes in BAC, please let me know.
Thank you all,
Katherine
Reply # - February 22, 2016, 11:34 AM
Katherine,
Katherine,
I'm sorry I missed the link and apparently :-| made several typos that muddy up the understanding.
Thanks Judy and Jim yes I meant to paste that link.
There is a lot of info about the use of tarceva in egfr wild type (no egfr mutation). While the response isn't dramatic or as long lasting as some of those with an egfr mutation it has shown efficacy and is approved (insurance will pay) for 2nd and later lines of treatment for egfr wild type.
http://cancergrace.org/lung/2014/09/26/iaslc_schiller_egfr_tkis_effecti…
http://cancergrace.org/lung/2010/09/21/benefit-from-egfr-tki-if-egfr-wt/
BTW, If you're interested in why it's called wild type, http://cancergrace.org/lung/2014/05/28/iaslc_neal_wild_type_egfr_genes/ I just listened to it and found out myself. It's an old term that came about when describing a "wild fruit fly" that got into the mix of other specifically chosen fruit flies being studied. Wild types don't have the mutation.
Clinical trials are mostly restricted to those who are in good shape with few or no comorbidities. Each is different and has its own set of inclusion and exclusion criteria.
Like Jim said second opinions are never a bad idea. Dr. Weiss wrote an excellent blog post on the subject, http://cancergrace.org/cancer-101/2011/11/13/an-insider%E2%80%99s-guide…
I hope this is helpful and keep us posted,
Janine
Reply # - February 23, 2016, 07:39 PM
Katherine,
Katherine,
Some background. In March 2011 my wife was diagnosed with adenocarcinoma with mucinous BAC features. She had a lobectomy. 2/3 of her left lower lung, all diseased, was removed. Only alveoli were affected, hence likely a pure BAC. Declared cancer free but it returned. She had none of the main gene mutations, i.e., EGFR, ALK and KRAS, but rather the BRAF mutation, rare (3 %) in NSCLC. There were no targeted drugs then. Consensus was standard chemo, i.e., 6 courses Carboplatin & Alimta followed by Alimta maintenance. Started in March 2012 and after some shrinkage she was stable for over 2 years. She then entered an immunotherapy trial but got assigned docetaxel. It stabilized the cancer but side effects were too much. Now she is on a targeted treatment for BRAF and scans showing improvement.
- Which chemo is your Dad on?
- Do you know which gene mutations were tested for?
- A 2nd opinion is more than useful. Don't know where you are but Mass General Hospital (MGH) in Boston is a very good and I would highly recommend Dr. Alice Shaw (well familiar with BAC).
- MGH also does comprehensive gene mutation testing.
- Difficult to say which trials may be of interest but the link to the gov clinical trials site is:
https://clinicaltrials.gov/ct2/results?term=non-small-cell+lung+cancer&…
You will have to refine the search criteria.
- START in San Antonio, TX for Phase I trials - http://startthecure.com
- A good link on gene mutations for LC:
http://www.mycancergenome.org/content/disease/lung-cancer
- a link to very useful Patient Guidelines on NSCLC: http://www.nccn.org/patients/guidelines/nscl/index.html#8
As to low O2. On scans and X-rays BAC shows like an infiltrate, just like pneumonia. Ensure it is not caused by pneumonia.
There have been some cases of BAC patients responding well to Alimta (Pemetrexed). The links I had are no longer active.
Good thoughts to you and your Dad.
Dutch
Reply # - February 24, 2016, 12:01 PM
Thanks Dutch for the great
Thanks Dutch for the great info. I'm thrilled to hear your wife's scans are showing improvement! Is it a trial?
Many good thoughts,
Janine
Reply # - February 24, 2016, 05:59 PM
No, she is not in a trial.
No, she is not in a trial. She started treatment with Tafinlar and Mekinist in May 2015. After she had to stop the brutal docetaxel she needed a chemopause. By the time she was ready to tackle the next line of treatment, this was the best option based on her mutation BRAF V600E, rare in NSCLC but common in melanoma. After promising results in the melanoma trial they opened a small trial for some 150 NSCLC patients, but it was closed before she could get in. Fortunately, we got approval for these drugs outside the trial, hence after some dosage adjustment to make the side effects more tolerable she is on it to-date.
Thanks for your kind thoughts.
Dutch