Totally different opinion on treatment for lung mets

califsue
califsue Member Posts: 80
edited March 2014 in Colorectal Cancer #1
I went to Kenneth Norris Cancer Center for a second opinion on treatment for lung mets with nodal involvement and got a TOTALLY different recommendation.

A brief history for those of you that might not know, I had a bilateral VATS on April 1 for 2 mets in each lung and 6 mediastinal lymph nodes. Both my surgeon and my oncologist told me that chemo would NOT work for the lung mets and that I needed follow-up radiation, both cyberknife and conformal to get to areas where the surgeon could not obtain good margins. I searched for any data or anyone who had had follow-up radiation and came up empty handed. I was conflicted and finally scheduled the cyberknife and had one treatment out of three which caused severe pain in my right upper lobe. I discontinued the treatment until I could get in to Norris for a second opinion that I had scheduled a month ago.

The oncologist at Norris said that the surgery should never have been done. Since I had mets to both lungs, and they had grown so quickly, I should have been given chemo to treat the systemic disease. He said that it is "Not True" that chemo doesn't work for lung mets. He said that Folfiri works best for rectal cancer lung mets. (I failed Folfox anyway.) His recommendation is to get a baseline high resolution CT scan. (Not a PET/CT. The CT is more sensitive at finding anatomical abnormalities at 1 mm slices vs 5 mm slices for the PET/CT. He said that if the CT shows something abnormal then we'll do a PET.) Once we have the baseline CT, then I'll start Folfiri with Avastin for 6 months. I'll have a CT scan at three months into chemo to assess treatment. If all goes well, he said that we will re-evaluate at 6 months and either continue the treatment, go to a clinical trial if necessary, go on maintenance chemo, etc.

He did say that there is a place for resection of lung mets and radiation of lung mets, however, the systemic disease needs to be treated. Timing.... Neither one of us talked about a "cure". Depressing........

As much as I HATED Folfox, I am not looking forward to Folfiri. However, his recommendation made a lot of sense to me and I feel like I'm finally headed in the right direction. I wasn't comfortable when he kept referring to me as "high risk" however. I emailed my oncologist and he is fine with following the recommendation from Norris.

I hope that this information may be of some help,
Susan

Comments

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #2
    Erbitux
    Sorry to hear of your situation Susan. Has Erbitux been mentioned at all? I have had lung mets for 3+ years that I have been dealing with and have had very good success with it shrinking and/or stabilizing the tumors. I had 1 RFA and 3 operations where they took out wedges and 1/2 of my lower right lobe. The Erbitux has not gotten rid of everything, it has kept things stable.
    There seems to be so many opinions on how to treat cancer. It's amazing.
    Just a thought.
    -phil
  • kimby
    kimby Member Posts: 797
    #3
    2nd Opinion
    That is why I like second and third opinions. They almost always give you options. It does make sense that once you have disease in the lymph nodes that systemic treatment is important. Avastin has been very good to me, even after I have progressed on other chemos. I pray it is as good to you.

    Head down, attitude high. You can do this and you aren't alone.

    Kimby
  • califsue
    califsue Member Posts: 80
    #4
    PhillieG said:

    Erbitux
    Sorry to hear of your situation Susan. Has Erbitux been mentioned at all? I have had lung mets for 3+ years that I have been dealing with and have had very good success with it shrinking and/or stabilizing the tumors. I had 1 RFA and 3 operations where they took out wedges and 1/2 of my lower right lobe. The Erbitux has not gotten rid of everything, it has kept things stable.
    There seems to be so many opinions on how to treat cancer. It's amazing.
    Just a thought.
    -phil

    I'm a mutant
    Phil,

    Thanks for your suggestion. However, my cancer cells have the K-RAS mutation so Erbitux won't work for me. I'm grateful that research has advanced enough to discover that cells with the K-RAS mutation are resistant to Erbitux so that I don't have to endure a rash for nothing. On the other hand, my choice of drugs to beat this thing are pretty limited.

    I'm glad that it is working so well for you! Terrific, I only hope that Folfiri an Avastin will work as well for me.

    Susan
  • califsue
    califsue Member Posts: 80
    #5
    kimby said:

    2nd Opinion
    That is why I like second and third opinions. They almost always give you options. It does make sense that once you have disease in the lymph nodes that systemic treatment is important. Avastin has been very good to me, even after I have progressed on other chemos. I pray it is as good to you.

    Head down, attitude high. You can do this and you aren't alone.

    Kimby

    Avastin
    Kimby,

    Thanks for your words of encouragement. I'm not sure what you mean when you say that Avastin has been very good for you. Did you have it as a single agent?

    Susan
  • kimby
    kimby Member Posts: 797
    #6
    califsue said:

    Avastin
    Kimby,

    Thanks for your words of encouragement. I'm not sure what you mean when you say that Avastin has been very good for you. Did you have it as a single agent?

    Susan

    Avastin
    Susan,

    I progressed on both folfox and folfori w/erbitux. I've been on mitocycin, Avastin and xeloda. That with liver rads brought me to NEAD. I believe that the avastin and xeloda were the 'worker bees' and the mitocycin kick started things. I'm not sure why I think that as I have not medical data to back it up. Ultimately, it doesn't matter and I don't care. But we found something that worked for now. That gives me Time and Hope. What more do we have?

    Kimby
  • serrana
    serrana Member Posts: 163 Member
    #7
    lung met treatment
    It is sure stressful when docs don't agree. I was a patient at Norris/USC Cancer Hospital
    and they have the cutting edge ( no pun?)chemo folks up there for sure; however it depends on the nature of the lung CRC mets whether or not chemo first or surgery first
    My lung met was small, was resected w/ clear margins and I went on 12 rounds of Folfiri/Avastin at USC which I just finished. The chemo was not difficult at all a little hair thinning, fatigue etc. The diahreha was managed by lonox, reglan and dexamethasone.
    What I notice is that onc's want to do chemo and surgeons want to do surgery and they look at the same lesion and come up with different opinions based on their specialty; then often they won't discuss it with each other. This is why we need to get third, fourth opinions from all disciplines in order to make a decision.When in doubt, ask for a Tumor Board presentation. If a doc won't talk to another doc about his opinion that is not a good doc, IMO. I've been treated at three NCI Cancer Centers and my rule is that if a doc isn't a team player he is not in my game.
    Serrana
  • serrana
    serrana Member Posts: 163 Member
    #8
    USC Norris and attitude
    Sorry you found the USC Norris onc "depressing"; Actually I did too when I was a patient there. The minute I was found to have mets his total demeanor changed; he started talking about "advanced disease" and I found myself try ing to cheer him up. Go figure. I am now with an oncologist in San Diego who is a cheerleader type guy, compassionate, upbeat and kind. No long faces for me, noway.No doomsaying., nada. Support lowers the coritsol levels in the stress mechanism of the body which is known to be associated with immune power.Statistics are not current, not individual and not relevant to particular cases IMO. Read Bernie Siegal's books and his website about support. Avoid downer docs.Assemble a team of docs/family/friends who expect you to live a long productive life.
    Serrana
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #9
    serrana said:

    USC Norris and attitude
    Sorry you found the USC Norris onc "depressing"; Actually I did too when I was a patient there. The minute I was found to have mets his total demeanor changed; he started talking about "advanced disease" and I found myself try ing to cheer him up. Go figure. I am now with an oncologist in San Diego who is a cheerleader type guy, compassionate, upbeat and kind. No long faces for me, noway.No doomsaying., nada. Support lowers the coritsol levels in the stress mechanism of the body which is known to be associated with immune power.Statistics are not current, not individual and not relevant to particular cases IMO. Read Bernie Siegal's books and his website about support. Avoid downer docs.Assemble a team of docs/family/friends who expect you to live a long productive life.
    Serrana

    hi Serrana
    Hi Serrana,

    I'm assuming your San Diego Dr. you mention is Dr. Fanta. Here, I recommended him to you and I can't even go to him myself, due to my insurance HMO. I wish I could! Maybe that will change in the future, but it will take a big fight w/ the insurance company.
    Talking about attitude, though, and my current onc (although, unfortunately, not often up on the latest of what to do for me, IS very postitive and encouraging, which I've really appreciated).
    I'm doing okay though (I think- CEA has gone up & I'm retesting that again tomorrow).
    Just wanted to say hi.

    Lisa
  • califsue
    califsue Member Posts: 80
    #10
    serrana said:

    lung met treatment
    It is sure stressful when docs don't agree. I was a patient at Norris/USC Cancer Hospital
    and they have the cutting edge ( no pun?)chemo folks up there for sure; however it depends on the nature of the lung CRC mets whether or not chemo first or surgery first
    My lung met was small, was resected w/ clear margins and I went on 12 rounds of Folfiri/Avastin at USC which I just finished. The chemo was not difficult at all a little hair thinning, fatigue etc. The diahreha was managed by lonox, reglan and dexamethasone.
    What I notice is that onc's want to do chemo and surgeons want to do surgery and they look at the same lesion and come up with different opinions based on their specialty; then often they won't discuss it with each other. This is why we need to get third, fourth opinions from all disciplines in order to make a decision.When in doubt, ask for a Tumor Board presentation. If a doc won't talk to another doc about his opinion that is not a good doc, IMO. I've been treated at three NCI Cancer Centers and my rule is that if a doc isn't a team player he is not in my game.
    Serrana

    lung met treatment - CT scan monitoring
    Serrana,

    Yeah, there seems to be a lot of differing opinions about treatment of lung mets. My thoracic surgeon said that 5 mets was the cut-off for being a candidate for surgery. At the time it made me feel glad to have 4. However, I also had nodal involvement, so.......they were not able to get clear margins.

    Unfortunately, I am limited by my health insurance. My docs are not team players. I only had a consult at Norris, but my local oncologist is going to treat according to the recommendations of Norris. I'm glad to hear that you did okay on Folfiri/Avastin. Thanks for the heads up on how to manage the diarhreha. Did you have a base CT scan before treatment and three months into treatment. Just wondering, since they removed your lung met completely. That is what they are recommending for me.

    Thanks,
    Susan
  • califsue
    califsue Member Posts: 80
    #11
    serrana said:

    USC Norris and attitude
    Sorry you found the USC Norris onc "depressing"; Actually I did too when I was a patient there. The minute I was found to have mets his total demeanor changed; he started talking about "advanced disease" and I found myself try ing to cheer him up. Go figure. I am now with an oncologist in San Diego who is a cheerleader type guy, compassionate, upbeat and kind. No long faces for me, noway.No doomsaying., nada. Support lowers the coritsol levels in the stress mechanism of the body which is known to be associated with immune power.Statistics are not current, not individual and not relevant to particular cases IMO. Read Bernie Siegal's books and his website about support. Avoid downer docs.Assemble a team of docs/family/friends who expect you to live a long productive life.
    Serrana

    USC Norris and attitude
    Serrana,

    Thanks so much for posting this. I came away really depressed from that consult. He kept saying that I was a "high risk" patient. I kept thinking that he knew something that he wasn't telling me. I'm still having trouble shaking off that feeling.

    I have read Bernie Siegal's books. I have given them away to patients that I have met in waiting rooms. I'm a huge believer in the power of the mind/body connection and how essential it is to surround yourself with positive support. I'm glad that you ended up with a positive oncologist.

    Susan
  • califsue
    califsue Member Posts: 80
    #12
    serrana said:

    USC Norris and attitude
    Sorry you found the USC Norris onc "depressing"; Actually I did too when I was a patient there. The minute I was found to have mets his total demeanor changed; he started talking about "advanced disease" and I found myself try ing to cheer him up. Go figure. I am now with an oncologist in San Diego who is a cheerleader type guy, compassionate, upbeat and kind. No long faces for me, noway.No doomsaying., nada. Support lowers the coritsol levels in the stress mechanism of the body which is known to be associated with immune power.Statistics are not current, not individual and not relevant to particular cases IMO. Read Bernie Siegal's books and his website about support. Avoid downer docs.Assemble a team of docs/family/friends who expect you to live a long productive life.
    Serrana

    USC Norris and attitude
    Serrana,

    Thanks so much for posting this. I came away really depressed from that consult. He kept saying that I was a "high risk" patient. I kept thinking that he knew something that he wasn't telling me. I'm still having trouble shaking off that feeling.

    I have read Bernie Siegal's books. I have given them away to patients that I have met in waiting rooms. I'm a huge believer in the power of the mind/body connection and how essential it is to surround yourself with positive support. I'm glad that you ended up with a positive oncologist.

    Susan
  • serrana
    serrana Member Posts: 163 Member
    #13
    califsue said:

    USC Norris and attitude
    Serrana,

    Thanks so much for posting this. I came away really depressed from that consult. He kept saying that I was a "high risk" patient. I kept thinking that he knew something that he wasn't telling me. I'm still having trouble shaking off that feeling.

    I have read Bernie Siegal's books. I have given them away to patients that I have met in waiting rooms. I'm a huge believer in the power of the mind/body connection and how essential it is to surround yourself with positive support. I'm glad that you ended up with a positive oncologist.

    Susan

    lung met treatment
    Hi Susan
    To answer your questions about scans.........they found the lung met in the followup PET and CT scans they did after adjuvant Folfox after my rectal surgery. It was tiny, didn't light up on the PET for several months. They took it out because they couldn't tell what it was and needed to find out.....voila! a crc met. Then I went into FOLFIRI for 6 months. THree weeks after the lung resection they did a CT for baseline before the FOLFIRI and then 3 months and 6 months afterwards they did PET/ CTs.THe onc wanted to do them more frequently but I didn't. In addition, my lung surgeon says that doing a PET that soon after surgery may result in false positive readings due to the healing process.
    Regarding insurance coverage, my cancer buddy KathiM, who posts here and other boards,had to threaten to sue her insurance company ( Health Net) to get permission to go out of network to a world famous crc surgeon at a NCI center. She got the permission and is now NED for several years and avoided having a colostomy as well. The moral to the story is fight those insurance companies if you think they are restricting your access to care you have nothing to loose and everything to gain.
    Serrana
  • impactzone
    impactzone Member Posts: 551 Member
    #14
    Thanks agin for your post.
    Thanks agin for your post. I'll try to call later this week. I am in and out right now but that doesn't mean I'm not thinking about you.
    Chip
  • califsue
    califsue Member Posts: 80
    #15
    serrana said:

    lung met treatment
    Hi Susan
    To answer your questions about scans.........they found the lung met in the followup PET and CT scans they did after adjuvant Folfox after my rectal surgery. It was tiny, didn't light up on the PET for several months. They took it out because they couldn't tell what it was and needed to find out.....voila! a crc met. Then I went into FOLFIRI for 6 months. THree weeks after the lung resection they did a CT for baseline before the FOLFIRI and then 3 months and 6 months afterwards they did PET/ CTs.THe onc wanted to do them more frequently but I didn't. In addition, my lung surgeon says that doing a PET that soon after surgery may result in false positive readings due to the healing process.
    Regarding insurance coverage, my cancer buddy KathiM, who posts here and other boards,had to threaten to sue her insurance company ( Health Net) to get permission to go out of network to a world famous crc surgeon at a NCI center. She got the permission and is now NED for several years and avoided having a colostomy as well. The moral to the story is fight those insurance companies if you think they are restricting your access to care you have nothing to loose and everything to gain.
    Serrana

    lung met treatment - Baseline CT?
    Hi Serrana,
    Thanks again for your response. I had a false positive PET/CT after a trans-anal excision surgery due to inflammation, so I've been down that confusing road. My baseline CT scan is scheduled for this Tuesday, May 26, 2 months post VATS. Was your baseline negative? And you did 6 months of Folfiri anyway? Did you do Avastin also?

    Why did you go from a CT scan to PET/CT scans? Norris said that the CT scan alone is more sensitive than the PET/CT scan. The CT scanner does 1 mm slices and the PET/CT does 5 mm slices. Their recommendation was to do CT scans and follow-up with a PET scan if there was anything that looked questionable.

    Thank you,
    Serrana
  • serrana
    serrana Member Posts: 163 Member
    #16
    califsue said:

    lung met treatment - Baseline CT?
    Hi Serrana,
    Thanks again for your response. I had a false positive PET/CT after a trans-anal excision surgery due to inflammation, so I've been down that confusing road. My baseline CT scan is scheduled for this Tuesday, May 26, 2 months post VATS. Was your baseline negative? And you did 6 months of Folfiri anyway? Did you do Avastin also?

    Why did you go from a CT scan to PET/CT scans? Norris said that the CT scan alone is more sensitive than the PET/CT scan. The CT scanner does 1 mm slices and the PET/CT does 5 mm slices. Their recommendation was to do CT scans and follow-up with a PET scan if there was anything that looked questionable.

    Thank you,
    Serrana

    lung met treatment/ ct scans
    My baseline CT was 3 weeks post thoracotomy and the onc asked for an opinion from my lung surgeon thinking I would need more surgery when they saw a new diffuse lung spot.They thought they would need to debulk it before adjuvant chemo. Lung surgeon said "not a tumor,healing tissue" etc.Onc ordered a PET/CT when the CT showed the diffuse area which did "light up" on the PET/CT and convinced him it was another met. I couldn't buy that it was a met since three weeks before that the XRays post surgery had been clear and by that time two surgeons said it was healing tissue effects. The onc and the surgeons never did agree about that area which diminished 50% in the next 3 months. Surgeons said it was because it was the healing tissue, onc said it was because it was a met.Onc planned on doing maintenance chemo after the Folfiri/Avastin but then changed his mind. It was presented to tumor board and they said wait and rescan in June. ( Don't you love this waiting bit?)

    The Folfiri/Avastin regimen started right away and was because the lung met put me into "stage 4" and I was considered by the onc to have "advanced disease". All this time my blood work was totally fine and my CEA normal.

    I wonder if you are worried about the Folfiri/Avastin.....for me it was 3 days of feeling crummy but once I got the dexamethasone rx for those days I was ok. They gave me reglan in the chemo cocktail which also stopped the runs. I also modified my diet radically: I STOPPED eating all fat, red meat, processed food, sugar,milk products,alchohol, coffee, gluten, fresh fruit and veggies and used lomotil prn the diahreha wasn't too bad. My hair did thin out alot and fingernails peeled but otherwise it was ok for 11 out of 14 days a month. I am on alot of brown rice, white fish, whitemeat chicken, vitamins, mushroom supplement,
    special electrolyte water, dehydrated veggies, acupuncture, and pro/pre biotics and digestive enzymes. I use about 25 grams of soluble fiber powder from Heather's IBS regimen also.
    I found Folfiri/Avastin far better than Folfox....that Oxaliplatin was nasty w/ the neuropathy. I only have the left over neuropathy in my feet now when I am dehydrated.
    Anyway that is far more info that you probably wanted........
    Think positive thoughts and pray alot
    Serrana
  • serrana
    serrana Member Posts: 163 Member
    #17
    califsue said:

    lung met treatment - Baseline CT?
    Hi Serrana,
    Thanks again for your response. I had a false positive PET/CT after a trans-anal excision surgery due to inflammation, so I've been down that confusing road. My baseline CT scan is scheduled for this Tuesday, May 26, 2 months post VATS. Was your baseline negative? And you did 6 months of Folfiri anyway? Did you do Avastin also?

    Why did you go from a CT scan to PET/CT scans? Norris said that the CT scan alone is more sensitive than the PET/CT scan. The CT scanner does 1 mm slices and the PET/CT does 5 mm slices. Their recommendation was to do CT scans and follow-up with a PET scan if there was anything that looked questionable.

    Thank you,
    Serrana

    lung mets/cts ps
    P.S. Susan.........They did the adjuvant chemo because of the orginal lung met, NOT the questionable one. I wasn't clear on that in my previous post. Sorry. Serrana

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