Hello All,
I've been lurking for several months and thought I'd finally introduce myself. My Dad was diagnosed stage IV in May of last year at age 64. I don't know if it's okay to say so, but he sees Dr. Frederick P. Smith in DC. He has a left apical tumor (adenocarcinoma) that *currently* measures 3.8 x 3.9 cm. He also has a secondary lower lobe mass that measures 2.1 x 1.7 cm.
His first line treatment last summer was Carboplatin/Avastin/Alimta. His second line treatment was an Eli Lilly Study (NCT 01703091), where he received Doctaxel & Ramucirumab in combination (no placebo). His primary tumor was reduced following these treatments. I'd love to tell you how much, but my Dad won't let me accompany him to appointments (retired Army Colonel - very independent and grumpy. LOL). He just recently started sharing his reports with me, but I have some holes to fill in from last year.
He followed up his chemo sessions with 27 days of radiation in Jan/Feb. His 3/1 scans showed pleural effusion, so he had a thoracentesis to remove the fluid - it was benign. The surgeon was on board and ordered a brochoscopy/mediastinoscopy to biopsy lymph nodes behind his sternum. Unfortunately, one of the four nodes they tested were malignant and it was on the opposite side from the tumor. No surgery. He did 16 more sessions of radiation to target the nodes. He is finishing up his first month of Tarceva (he is EGFR negative and was a life-long smoker). The measurements I listed at the beginning of my post are from his CT scans on 6/24 (Monday). Phew. That's pretty much it. He presented with shoulder pain of 18 months. No cough, no SOB, etc. He assumed his pain was muscular for a very long time.
I am in a pretty good place with all this. My family and I are letting my Dad lead the way. He is feeling understandably vulnerable and it's important we let him control what little he can.
Your posts have been an invaluable resource to me - thank you!
Kelli
Reply # - June 26, 2013, 04:28 PM
Reply To: Introduction and a lot of babbling….
I do have two questions for Dr. West or anyone else who can answer them. Are all apical tumors considered Pancoast Tumors? My Dad said his doctor has never used that term, but most search engine results pertaining to apical tumors also say something about Pancoast Tumors.
And lastly, can a tumor be staged at IV based on size alone? I've always thought my Dad should have been staged at a IIIa or b as his cancer was contained to the left lung at the time of his diagnosis.
Thank you, again!
Kelli
Reply # - June 26, 2013, 08:37 PM
Reply To: Introduction and a lot of babbling….
Hi Kelli. I'm glad you have gone from lurking to participating, and you are in no way babbling. You have given a very informative summary of your father's situation and I was impressed by your awareness that he needs to " control what he can." You have the makings of a wonderful caregiver and I look forward to following your future posts.
I'm not a medical professional but I do know that all apical tumors are not Pancoast Tumors. I'm sure the others will come on board soon and give you more info or links to info that will answer your questions in detail.
I really just wanted to welcome you to Grace and let you know we're sorry your circumstances have led you here, but glad you found what we believe to be the best site available for the kind of information you seek.
Debra
Reply # - June 26, 2013, 08:55 PM
Reply To: Introduction and a lot of babbling….
Hi Kelli:
Just wanted to join Debra in welcoming you. . .and to say that I am so sorry that your Dad and the rest of you are going through this. While waiting for the docs/moderators to come online, I seem to recall that generally speaking, cancer in two different lobes of the same lung are staged as Stage 4 cancers (unless there is reason to believe that they each are primary tumors). I'm sure the experts will correct me if I am incorrect in this regard.
Please keep us posted on how the both of you are doing. . .
Laya
Reply # - June 26, 2013, 09:57 PM
Reply To: Introduction and a lot of babbling….
The specific term Pancoast tumor refers to a location along what's called the superior sulcus, and it classically was a squamous tumor that tends to stay local rather than spread more distantly, often growing into a collection of nerves above the lung, near the shoulder, called the brachial plexus. These tumors tend to cause pain in the chest and down the arm on that side as they extend locally rather than spread elsewhere in the body, so their behavior is unique for lung cancers. They are potentially well treated by chemo and radiation, surgery sometimes following afterward. However, surgery is extremely unlikely to be successful if there is any viable cancer in the mediastinal (mid-chest) lymph nodes after chemo and radiation, and it tends to not be recommended in that setting.
Not every apical tumor is a Pancoast tumor, but the term is used somewhat loosely. The idea of doing chemo and radiation followed by possible surgery remains a reasonable option for many of these cancers.
With regard to it being stage IV, an isolated primary cancer without any distant spread or isn't stage IV, regardless of how big it is, but it may be essentially incurable or exceptionally hard to cure if it's large or in the wrong place. In this case, the spread to another part of the same lung would make it stage IIIB, previously considered stage IV in the prior staging system. Regardless of whether it's technically called stage IV or stage IIIB now depending on the staging system in question, spread to another part of the same lung is, at best, on the outer limits of what might be remotely possible to treat with curative intent. In his particular case, after having received chemo and radiation and having active disease on the opposite side of the mediastinum, I agree that systemic therapy is likely to be the recommendation most experts would recommend.
Good luck.
-Dr. West
Reply # - June 27, 2013, 03:25 PM
Reply To: Introduction and a lot of babbling….
It would seem he'd have been upgraded to stage IV with the lymph node involvement on the opposite side from original tumor. What matters now is if he's responding. Wishing him the best.
Take care, Judy
Reply # - June 27, 2013, 05:04 PM
Reply To: Introduction and a lot of babbling….
Hi Judy,
For non-small cell lung cancer, it depends on the location of the contralateral lymph nodes. For example, hilar lymph nodes on the opposite side (contralateral) could be classified as pN3, stage IIIB.This chart has a summary of staging:
http://www.oocities.org/radexpert01/lung_ca_staging.jpg
God bless!
Reply # - June 29, 2013, 07:49 PM
Reply To: Introduction and a lot of babbling….
Thank you so much, all. I appreciate you taking the time to read about my Dad's case and share your thoughts and wisdom. I will keep you updated on his fight.
All I really want for him is a reprieve from the fatigue, the pain, the neuropathy, etc. so that can feel "normal" long enough to take a quick trip or enjoy something else he's missed. It seems once you're diagnosed with an advanced cancer, you spend the rest of your days chasing it. I hate that.
Kelli
Reply # - June 30, 2013, 09:34 AM
Reply To: Introduction and a lot of babbling….
Hi Kelli, I've been following your thread and want to agree with Debra that your post isn't in the least babbling.
I wanted too to respond to your last post about spending all his days chasing the cancer. I absolutely know how you feel for I've watched my husband go through the same thing. He's become quite the outlier and even on treatment break 11 months...I feel I've stolen all the good luck lately. But I wanted to share with you a quote from Dr. Weiss. It isn't just his thoughts but the thoughts of every doctor on our faculty, my husband's onc and hopefully your dad's too. I've made my wishes clear to his onc and all the nurses with which I've had the chance to speak. They have all promised to help us find that balance of living life, feeling as well as possible, and keeping the cancer at bay.
"Every cancer therapy has two purposes: to improve duration of life, and to improve quality of life. Every other measure of chemotherapy success, such as response rate or progression-free-survival, is a surrogate to these two true goals. I am using the broken record as my pseudo-apology for repeating this mantra repeatedly on GRACE, to my colleagues, and in my mind every time I make a treatment decision.
"Chemotherapy is the most important treatment for achieving these two goals in stage IV disease. Stage IV means that the cancer has spread and is no longer curable. Incurable is not the same as untreatable. Cure means eliminating every last cancer cell. Treatment means providing real benefit, in the form of achieving these two goals." from http://cancergrace.org/lung/2010/04/16/introduction-to-first-line-thera…
I hope your dad is able to enjoy a good trip and sure that his onc would want the same and even help plan treatment around it so he feels as well as possible for it. Nurses are wonderful in helping communicate wants and needs.
Janine
Reply # - June 30, 2013, 02:04 PM
Reply To: Introduction and a lot of babbling….
Thank you Dr. Creelan for that clarification. I always believed if the lymph nodes were on the opposite side you'd be stage IV. Take care, Judy
Reply # - December 4, 2013, 02:46 PM
Reply To: Introduction and a lot of babbling….
Hi Everyone,
I still mostly lurk but I thought I'd give you an update on my Dad.
Shortly after my last (first) post, he started Tarceva despite NOT having tested positive for EGFR. Worth a shot, right? He took it for 2.5 months before his next round of scans on 9/19 revealed lytic lesions in his spine, along with "too numerous to count" nodules in his other lung. The Tarceva was discontinued immediately and he started back on the Taxotere - alone this time, at 3 week intervals. I don't know how this drug effects you or your loved ones, but it exhausts my Dad and does a number on his taste buds. Food has been one of his only joys since diagnosis and the Taxotere made everything taste awful both times around.
Fast forward to new scans on 11/22: increasing number and size of pulmonary nodules bilaterally, biggest (original) mass stable, decrease in smaller mass, and increase in left effusion. The thoracic lesions are still there. And that was it for Taxotere.
So, Dr. Smith has him on a new regimen that he started this week - Gemzar + Abraxane. I only know what I've read. It has proven to be a promising combination for pancreatic cancer, but I've not found much data on its effect on advanced NSCLC. Maybe the Docs here can shed some light on that.
My Dad's taste buds recovered just in time for Thanksgiving at my house, which was awesome. It might be asking too much, but I'm hoping for the same at Christmas.
Happy Holidays to all and thank you for listening. ;)
Kelli
Reply # - December 4, 2013, 04:17 PM
Reply To: Introduction and a lot of babbling….
I think you summarized it pretty well...the combination is promising in pancreatic cancer, and each of these drugs is active in lung cancer. I haven't used this particular combination in NSCLC, but I think it's a perfectly fine idea and would suspect it might well produce a good balance of efficacy and tolerability.
I'd love to hear how he does with it, both in terms of side effects and utility against the cancer.
Good luck.
-Dr. West
PS: I've had a lot of recent patients on Taxotere really bothered by the change in their taste, reminding me that can be a challenging side effect of Taxotere for many people.