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New here, newly diagnosed NSCLG squamous, about to start chemo: advice?

IcandoityesIcan
IcandoityesIcan Member Posts: 2
edited March 2014 in Lung Cancer #1
Hello to all who read this. I spent the day on this site reading all the threads that matched my search words. So many of you are inspiring and many of you are real fonts of knowledge. Please let me tap into all of that. Here's my story. Please forgive me for blathering.

I'm a 61 year old female, smoked since I was 14. In the last few years I wasn't so much in "denial" about the probable condition of my lungs as I was in "avoidance" -- but my gut told me the inevitable was coming, any minute. Sure enough, a new primary physician with a pro-active partnership approach sent me to a pulmonologist who wanted a chest x-ray, then a lung CT scan, and finally a bronchoscopy. I got my diagnosis (technically, my husband got it) on Oct 28. (It was several weeks before I wanted to know a diagnosis.) Both lungs are crapped out from smoking (I have COPD and emphasema, as well), so surgery is not an option. The tumors are in my right lung.

My world fell apart with the broncoscopy. Fluid got in my lungs, my lung collapsed, got pneumonia, I was intubated and on a respirator for five days and the hospital told my husband that if there were family or friends who wanted to say a last goodbye, they should hurry. To say I was debilitated is a gross understatement. I was in the hospital three weeks, released on Nov 17. I don't know how I made it. I shocked everyone. I shocked me. I just kept "trying" a little bit more and a little bit more, til before I knew it I was setting goals for myself so I could get home.

I received an initial dose of ten rounds of radiation while in the hospital, and about three weeks later I had another seven rounds. No ill effects except fatigue. My weight has hovered at 90 lbs for the last two years (I'm 5'2.5") but since being released from the hospital I've gained 22 lbs!!! (Thank you, Megace!) I was far too weak to have chemo concurrent with the radiation, so I'm scheduled to start a combination of cisplatin and gemzar (possibly adding erbitux later), to commence January 12 for six cycles 2x every 3 weeks and one week "off." The oncoman sez this is a proven cocktail that offers about a 25% chance of a 5 year non-recurrence rate. He did tell me how tough a combatant the cisplatin will be. I am willing to fight as hard as I can. I know I can do it. I want more time with my husband and son.

This is through a local but well respected teaching hospital in San Diego. I don't know anything about their success rates for this kind of cancer treatment. Now that the therapy is about a week away, I'm panicking that I didn't get a second opinion. Do I go to another hospital for a second opinion? Should I try to get in to UCLA or City of Hope (they're both also in CA) for a second opinion? If the therapy this oncoman recommends has been proven successful, wouldn't I want to at least try it first? Or should I first try to find a clinical trial with newer and more promising drugs? Would that be wasting precious time?

How did you handle accepting your doctor's diagnosis? Would I be foolish not to seek a second opinion before proceeding? Did you go with the (relatively) tried and true cocktail first, or did you seek out other combinations? How did you find your information? I'm a smart woman, and yet I feel like I dropped the ball on my life.

Please, give me your reactions and input. And thanks so much to all who do.

Denise

Comments

  • soccerfreaks
    soccerfreaks Member Posts: 2,788
    youCANdoityesyoucan!
    For starters, Denise, going to a 'teaching hospital' is not necessarily a bad thing. Your personal care may actually be better in such an institution than what you might expect in one of the others you mention, although I am an East Coast person and thus not familiar with any of the hospitals you are talking about.

    The reason for the statement is that in a teaching environment you are apt to get high-quality doctors who are also up-to-date on the latest possibilities with respect to treatment.

    In my case, the two guys who teamed up to do my head/neck cancer surgery were both professors at a nearby medical school. My hospital is NOT a 'teaching hospital', but these guys were clearly professors in addition to their day jobs, and as a result, I got some tremendous auxilliary support from the youngsters (some not so young) that were involved as apprentices, if you will. (One of my surgeons, incidentally, was in a list of the top 100 doctors of his sort in the entire country: they are not shoddy docs, necessarily.)

    Additionally, there may be greater opportunities for getting into trials, which may be of enormous benefit to you, at the stage you describe.

    (While I was not involved in any trials, I was happy to be involved in a research project until cancer came back and made me, apparently, no longer of interest.)

    In fact, Denise, while I am sure others have been through it, I have not yet met anyone here or elsewhere who had the surgery I had for the orginal head/neck cancer: a tongue resection that included grafting of nerves from elsewhere to my 'new' tongue part, so that it would FEEL (along with the radical neck dissection).

    I am not arguing that you should not seek a second opinion, Denise, but rather that you might consider the benefits of this hospital as a 'teaching hospital'.

    Moving on, your panic is completley understandable. Most of us have felt it at some point, some for a moment, some seemingly for time without end. The compulsion to seek another opinion may or may not be an internal way of dealing with your anxiety.

    That is understandable, too, if such is the case.

    As you are well aware, a second opinion WILL drag things out a bit, but if the existing opinion leaves you in doubt, perhaps it is best that you seek another one. Only you can truly weigh honestly the benefits of one course as opposed to the other, and if you are not confident of your current medical team, then you should certainly seek out others that you are more comfortable with, as long as you are not seeking them out simply to hear an answer you want to hear (that often enough leads to trick science, scams, and miracle cures ... cures to the "provider's" financial woes).

    Best wishes, Denise.

    Take care,

    Joe
  • kind123
    kind123 Member Posts: 8
    new trials
    If you are stage IIIB or IV you may want to check out the phase III Lucanix (NovaRX)trial for lung cancer. Look it up on the Internet and ask your doctor about it. They have been getting some amazing results with this drug and I think it is conjunction to your other therepies, so you don't miss out on anything.
  • IcandoityesIcan
    IcandoityesIcan Member Posts: 2
    2nd Opinion
    Since posting this last night I have been thinking incessantly. I called my insurer this morning; second opinions are covered anywhere.

    At the hospital where my two oncologists are, and the pulmonologist, and my primary, they do not work as a team approach. It seems I'm always telling the hematology oncologist what the radiology oncologist has been doing. I haven't felt 100% comfortable with any one care provider, except for my primary -- and she hasn't had much of anything to do with my cancer care.

    My insurance will let me know more about what treatment is covered if I go out of network. UCLA is within the network and is logistically more feasible than out-of-state options, but I've been reading much about Sloan Kettering in NYC. I'm strongly leaning toward Sloan. They are soooo cutting edge. My cousin has promised to care for me and take me to all treatments, if I do decide on Sloan and if they're covered by my insurer.

    Once I learn definitively if I can avail myself of INSURED treatment at another facility, and if I get accepted by that hospital, then I will cancel my scheduled chemo start -- which hopefully can before done by 1/12! Otherwise I'll have to take the chance and cancel anyway.

    I still want more feedback, so please share with me. And thanks to the two respondents who shared already.

    Denise