to chemo or not to chemo.... - 1256947

rdcrew
Posts:16

My History:
Diagnosed September 2011, NSCLC , Adenocarcinoma stage 3B (Pancoast tumor with Horners syndrome). Initial treatment was six weeks of radiation to the lung with chemo – Cisplatin and Etopiside – four cycles. The results were great, did another two cycles of the chemo to mop up any stray cells. Was NED for a short time – from April 2012 to July 2012. A met was found on my rib, causing a fracture (now stage IV). I sought out second and third opinions. We did more chemo – tried two cycles Carboplatin and Alimta. It was not effective, this was roughly September 2012. Then we tried Carboplatin/Taxol/Avastin starting in late November 2012. Cyberknife was done to the rib met in February. I just has a CT with contrast. The results were pretty good, stable (no shrinkage), post radiation changes, etc. One note did say “small areas of nodularity are seen on image 18 series 4 not currently seen on the previous study”. My oncologist wants to start me on another 4 cycles of Carbo/Taxol/Avastin. It seems strange to me to continue with the same chemo, especially the carboplatin. I am faced with making a decision to continue this or not. In my mind there is no proof the chemo is working but there is also no proof it’s not. I have handled the chemo exceptionally well with minimal side effects; hair loss and minimal fatigue. My platelets were an issue, they would drop low and had to postpone chemo for two weeks and then back to normal. I am worried about long term effects of the chemo. I did have mutation testing done and am negative for all mutations.

My question is this: Does this seem like a good plan or is it time to see my second opinion doctor?

Thank you in advance,
Ronda

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Reply # - June 2, 2013, 10:48 AM

catdander
Posts:

Hi Rhonda, I'm so sorry to hear about this situation. I say anytime you are wary of treatment choices your given and you're asking yourself is it time for a 2nd opinion, it's time for a 2nd opinion.

Below are links that may help,

This is much more than just about 1st line treatment, including why more than 6 cycles of platnum are too likely not to let you experience the results of quality and longevity of life. http://cancergrace.org/lung/2010/04/16/introduction-to-first-line-thera…

About the many reasons 2nd opinions can be a good choice including trial options for which there are some, http://cancergrace.org/cancer-101/2011/11/13/an-insider%E2%80%99s-guide…

http://cancergrace.org/lung/2010/10/04/lung-cancer-faq-2nd-line-nsclc-o…

I hope this is helpful,
Janine
forum moderator

Reply # - June 2, 2013, 12:59 PM

lekenkia
Posts: 6

Please accept my prayers. Follow your heart. I have no medical opinion but I know for sure it is not an easy decision. Please try a second opinion if possible it would never hurt to know what another oncologist suggest on your treatment.
Count on my prayers
Rbi

Reply # - June 3, 2013, 04:26 AM

rdcrew
Posts: 16

Thank you for the responses - prayers are always welcomed and appreciated. I will try to get an appointment with my second opinion doctor. I also requested information on a clinical trial in my area - Trial # NCT01714739 - Short Title
Anti-KIR Antibody in Combination With an Anti-PD1 Antibody in Patients With Advanced Solid Tumors.

Thanks again!
Ronda

Reply # - June 3, 2013, 11:37 AM

catdander
Posts:

Good luck with your appointment. There is lots of hope for the anti pd1 drugs.
The oncologists have convened in Chicago all weekend and until tomorrow. I look forward to hearing about results. In fact I've poked around a bit today on the ASCO site and twitter.

Reply # - June 3, 2013, 12:05 PM

JimC
Posts: 2753

And for you and anyone else who might be interested, Dr. West posted this information on getting timely access to the developments at ASCO: http://cancergrace.org/general/2013/05/19/how-to-find-the-latest-info-d…

As that page states, if you want to follow his tweets from the conference, he's at @JackWestMD. Other attendees tweets can be seen by looking for tweets with the hashtag #ASCO13, but those won't be just about lung cancer.

JimC
Forum moderator

Reply # - June 3, 2013, 08:06 PM

marisa93
Posts: 215

I just want to chime in and agree that another opinion is never a bad idea. We were not happy w/my husband's onc and his plan of treatment after first-line(also his "bedside manner") so we went for a second opinion and ended up switching drs. I want to add that the first onc's plan was a completely reasonable choice but we went with the onc whose treatment plan fit with what we felt we should be doing.

Good luck and best wishes,
Lisa

Reply # - June 3, 2013, 08:13 PM

Dr West
Posts: 4735

Ronda,

It's good to hear from you again, even if the reason for it isn't welcome.

My interpretation is that based on what you're describing, the evidence showing progression is pretty weak and rather subtle. Your situation doesn't have any "standard" answer, since your case is unique, but the recommendation to restart a carbo/taxol/Avastin combination is one that I don't think would be a common one -- especially at this point in your course. Taxol has a real risk of cumulative and potentially irreversible nerve damage, and carbo over and over causes an escalating risk of a severe, even potentially life-threatening, hypersensitivity reaction. Moreover, since the cancer has already spread to a bone, there's no clear advantage to treating at all now, based on a hint of perhaps slight, asymptomatic progression. There's almost no reason to think you couldn't do just as well waiting to pursue more treatment, and if it isn't going to eradicate every last bit of the cancer now, it makes a lot of sense to do as little as needed to continue to do well and feel well, spreading the treatment options out over what we'd hope will be a long time.

Good luck.

-Dr. West

Reply # - June 5, 2013, 12:53 AM

rdcrew
Posts: 16

Thank you so much Dr. West (and all). This is an awesome site, Dr. West validated my thoughts of over treatment. I have an appointment with Dr. Bonomi (Rush Univeristy) on Monday, I have seen him before and really like him. I also have a follow up with my regular onc to discuss my results. I did call her and tell them to not schedule anything yet. I believe many people with lung cancer are afraid of no treatment, I am not one of those people.

Thank you so much for empowering me with information to help fight this disease!

Ronda

Reply # - June 5, 2013, 06:35 AM

Dr West
Posts: 4735

You sound very well prepared for all of these discussions. Please say hello to Dr. Bonomi for me.

Good luck, and please do keep us informed.

-Dr. West

Reply # - June 5, 2013, 06:46 AM

Dr West
Posts: 4735

I might also mention parenthetically that, based on my discussions with Dr. Bonomi and his comments expressed about maintenance therapy in a video on the subject we did in Santa Monica earlier this year, I know that he's more toward the "treat early" side of the spectrum. Specifically, he notes that he definitely favors maintenance therapy for most, if not all, patients with advanced NSCLC, essentially because it's always possible to have a patient decline faster than you'd expect and miss the opportunity to treat with further effective therapy. As you've learned, this isn't a precise science, but rather a judgment, so knowledgeable people will fall all along a spectrum. Dr. Bonomi is more disinclined toward treatment breaks, while I tend to fall more toward the mindset of "I'm pretty confident that in selected patients with indicators of indolent disease, in almost every case we'll catch meaningful progression long before we miss the opportunity".

If Dr. Bonomi indicates greater comfort in your current oncologist's approach, that's certainly valid. It's just worth putting into context that we all, present company included, have our opinions and biases shaping our interpretations of these issues.

Without meaning any slight against Dr. Bonomi, I'll just mention, FYI, that other very thoughtful and personable lung cancer specialists in the Chicago area include (not an exhaustive list) Drs. Jyoti Patel and Melissa Johnson at Northwestern, Dr. Tom Hensing at North Shore (affiliated with Univ. of Chicago), and Dr. Ravi Salgia at Univ. of Chicago.

-Dr. West

Reply # - June 12, 2013, 07:08 AM

rdcrew
Posts: 16

I have an update. Since my last post I have seen both Dr. Bonomi and my regular onc. Dr. Bonomi wants me to get a PET scan to see if they can spot anything going on in my arm since that is my main pain point right now. I had an x-ray at the same time as my recent CT scan and nothing was seen. After we get the PET done I am to get my results on disc and call him to set up another appointment. From there he may take it to the "Tumor Clinic" (tumor board???) but we will have to wait and see. In my area they only do PET's on Tuesdays and Fridays, I have to wait for insurance approval and such but it will get scheduled soon.

As far as the chemo, my doc wanted to move forward with the triplet I told her no. She said, okay, let's do just Avastin. I again said no, not until after the PET. Dr. Bonomi said no to the triplet but thought that just Avastin might be a good course and not as toxic.

Right now I am just waiting on the PET. I will give an update when there is one to give.

I cannot express enough my gratitude for this site. I feel as though it has potentially saved my future quality of life by giving me information.

Thank you,
Ronda

Reply # - June 12, 2013, 12:07 PM

Dr West
Posts: 4735

You're very welcome. Thanks for the ongoing updates. I'm happy just to know that you're so able to participate in your own care decisions, especially when there's no clear right answer.

-Dr. West

Reply # - June 12, 2013, 12:33 PM

JimC
Posts: 2753

Glad to hear that you seem to be working toward a treatment plan with which you're comfortable.

I just wanted to add that Dr. Hensing was my wife's oncologist, and we found him to be the most wonderful doctor and human being. We had very thoughtful discussions with him, in which he answered all of our questions and considered every bit of information we presented to him. In addition he had a very caring manner and always found ways to keep us positive, even when the news wasn't good. We were very lucky that he was Liz's oncologist. He sees patients at Evanston, Glenbrook and University of Chicago Hospitals.

We also met Dr. Johnson at Northwestern to discuss a clinical trial and found her to be very knowledgeable and friendly.

Good luck with your treatment.

JimC
Forum moderator

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