Maintenance chemo - 1255986

mchel
Posts:3

I am new to the site. Was diagnosed with adenocarcinoma of the left lung in August, 2012. Had 7 chemo treatments and 30 radiation treatments with partial success. Mass, which they now say is a lymph node, is smaller, but inoperable as it is attached to my pulmonary artery. Last PET scan showed some activity, but doctor says it is minor, however he has placed me on "maintenance chemo" (or what I call chemo for life) of Altima every 3 weeks. Although I seem to be doing well, I am noticing that I am not managing this chemo as well as I had hoped and am considering discontinuation as I am not even sure that there is a benefit to this. Friends and family are urging me to consider a second opinion, but I don't even know where to start. I live just outside of Philadelphia and can travel for a consultation, although ongoing treatment out of the area would be difficult as I am still working and have days when I feel too sick to travel long distances. As I am reading the discussion posts, I realize that I don't even know what questions I should be asking and that I probably do not have enough information on what is going on with my treatment and cancer to ask intelligent questions. I guess my questions come down to...how do I find a specialist in my area that I can trust, what should I be asking and does anyone know anything about maintenance chemo?

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Reply # - April 28, 2013, 08:36 AM

catdander
Posts:

mchel, Welcome to Grace. I'm so sorry you're in this position but Grace is the place to get answers so you know you're getting the treatment you need. The good news about traveling is unless you enroll in a trial that is being conducted outside your area you can get suggestions and make good treatment decisions with help from a specialist but still have the treatment at your local cancer center. Oncologists do not mind and usually welcome input from others. Dr Weiss writes here about all the reasons a second opinion is a good thing. http://cancergrace.org/cancer-101/2011/11/13/an-insider%E2%80%99s-guide…

We have tons of information on maintenance therapy, one suggestion of late is if you're cancer is stable it maybe reasonable to take a break and see how the cancer acts on it's own; kind of let it "declare" itself as Dr. West has put it. http://cancergrace.org/cancer-101/2012/03/17/the-principle-of-letting-t…

On maintenance therapy http://cancergrace.org/lung/2010/09/24/lung-cancer-faq-im-coming-to-the…

I think that's enough to get you started. Browse around the site, we have FAQ on the right column of this page.

At the top of this page are "General" and "Focused" cancer info tabs. These pages have archive drop down menus with more specifics.

Our search engine is very good though you may need to log out before you're able to get results.

Again welcome, I think you'll find Grace a treasure of info and good will,
Janine
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Reply # - April 28, 2013, 03:33 PM

mchel
Posts: 3

Thanks so much, Janine. I started reading through the links you provided and really found the second opinion advice helpful. I AM worried that my oncologist will think that I am having a problem with him and I really am not. I just want to be sure that I am getting the best treatment possible with the least amount of side effects. I am sure I will have more questions after reading, but really appreciated your help. I did notice that Dr. West went to school in this area (Princeton). I wonder if he might know someone who specializes in my cancer around here. Do you happen to know or know how I could ask him?'

Thanks,
Michelle

Reply # - April 28, 2013, 04:55 PM

Dr West
Posts: 4735

Drs. Corey Langer and Tracey Evans, both at University of Pennsylvania, are experts in lung cancer who would be great to see for another opinion.

Good luck. I hope a second opinion is helpful, and I strongly suspect it will be.

-Dr. West

Reply # - April 29, 2013, 04:15 AM

mchel
Posts: 3

Thank you, Dr. West. I think the hardest part for me to reconcile is that generally, I feel fine and I feel like the issues I do have are being caused by the chemo. I had a break in chemo between the first and second rounds and felt completely "normal" once the chemo and radiation was out of my system. I absolutely do not feel (or look) like someone who is dying, although I was very sick at the start of this in August and throughout the first rounds of chemo and radiation treatments. Since then, the mass has shrunk considerably, my lung has regenerated (had been partially collapsed) and the PET scan is lighting up, although it appears to be minimal. I was actually shocked when they said I was not in remission.

I am due to have another maintenance chemo in 2 weeks, (yet another) PET scan the following week and an appointment with my oncoloogist right after Memorial Day. I am then leaving for the Caribbean for a week's vacation (skipping my next scheduled maintenance chemo until I return). My thinking is that I should wait until after the PET scan and doctor appointment to see one of the docs at Penn as it will give me a chance to talk to my oncologist (who has no idea I am thinking about a second opinion) and have the additional PET scan info for the consult. Does this make sense to you?

So glad I found this site!
Michelle

Reply # - April 29, 2013, 10:12 AM

catdander
Posts:

It does make sense to have the most up to date scans available for a consult.

Have an excellent vacation!

Reply # - April 29, 2013, 07:20 PM

Dr West
Posts: 4735

It also makes sense to do a second opinion at a branch point in the decision tree about what to do next, as is typically the case after an interval scan to assess response to therapy.

Good luck.

-Dr. West

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