Question for those of you with multiple mets...

lizbiz
lizbiz Member Posts: 120
edited March 2014 in Colorectal Cancer #1
Hi everyone,

Well, I'm currently on my 3rd treatment - a clinical trial for a MEK inhibitor. My cc progressed through both FOLFOX and FOLFIRI+Avastin. My oncologist said that if I stopped all treatment and "went on vacation" I'd maybe have a year left. So, needless to say, we've been desperate for new opinions. I've consulted Memorial Sloan-Kettering and Karmonos Cancer Institute. Both places told me that what we're doing now with the clinical trial is the best option.

My big question is this - for those of you who've had liver resections, have any of you had other mets in other places at the time? I'm trying to find a surgeon that will even talk to me about the possibility of resection. It seems like the door slams in my face as soon as they know I have a few other mets and that my tumors are chemo-resistant.

Thanks,
Elizabeth

Comments

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #2
    Hi Elizabeth
    Sorry to hear about the cancer but to answer your question, I had/have stage IV CC for 5+ years and had mets to my liver and lungs at the time of DX. I went to Sloan and they did chemo (folfox w/Avastin) for 6 months to shrink the tumors since the location of them made them inoperable at the time, then did all the surgery to the liver, colon, gallbladder and HAI pump installation. The following year we addressed the lung mets. For that time (and still now) I have been on chemo. I've had 3 lung operations that has removed most of it. Now I have a few nodes left in and around the lungs and I'm on Erbitux. They had no problem at all with doing a liver resection (I had about 70% removed) while having lung mets.

    I'm not sure why Sloan would not operate but as you stated your tumors are chemo-resistant?
    I don't get the connection but I'm certainly no expert.

    So, to answer your question, I did have mets to the lungs and they seemed to have no problem operating on me. I had Dr William Jarnigan over at SK.
    All the best,
    -phil
  • Paula G.
    Paula G. Member Posts: 596
    #3
    PhillieG said:

    Hi Elizabeth
    Sorry to hear about the cancer but to answer your question, I had/have stage IV CC for 5+ years and had mets to my liver and lungs at the time of DX. I went to Sloan and they did chemo (folfox w/Avastin) for 6 months to shrink the tumors since the location of them made them inoperable at the time, then did all the surgery to the liver, colon, gallbladder and HAI pump installation. The following year we addressed the lung mets. For that time (and still now) I have been on chemo. I've had 3 lung operations that has removed most of it. Now I have a few nodes left in and around the lungs and I'm on Erbitux. They had no problem at all with doing a liver resection (I had about 70% removed) while having lung mets.

    I'm not sure why Sloan would not operate but as you stated your tumors are chemo-resistant?
    I don't get the connection but I'm certainly no expert.

    So, to answer your question, I did have mets to the lungs and they seemed to have no problem operating on me. I had Dr William Jarnigan over at SK.
    All the best,
    -phil

    Phil
    Do you have any mets in your liver now?
    Elizabeth, I don't know what to say because this is new to me. I hope you can find some answers to help you. Best to you PaulaG.
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #4
    Hi Elizabeth
    I'm so sorry to hear the doctor's prognosis...have they mentioned RFA to you at all? That is radio frequency ablation - they insert a very heated prong into the tumor and basically fry it.

    I did not have multiple mets - mine has been a progression - colorectal to liver - now to pleura of lung.

    I was originally a liver resection candidate until they opened me for surgery, and then had to switch procedures and do the RFA on me - I had to have CyberKnife radio surgeries (3) to clean up the leftovers of the tumor - could not get all of it, as it was near some major blood vessels.

    RFA and CyberKnife would certainly be worth mentioning to your doctors.

    All the best
    -Craig
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    #5
    In addition to Phil
    In addition to Phil I know some others that have had lung and liver mets simultaneously but were able to have the liver resected. Those patients were at Memorial Sloan Kettering. I am not sure which number you are going through at MSK but I would advise you to call the office of either the liver surgeon or oncologist directly (numbers listed on MSK web site) and attempt to get through that way. I know someone who was told "no" by the referral number but going directly through to Dr Personality's office (my oncologist that is also Phil's oncologist) resulted in being seen and treated (HAI pump).

    Have you considered options for the HAI pump? I met someone at clinic that was chemo-resistant but was able to get the HAI pump implanted and made resectable through that treatment. When you say you have a "few other mets" what do you mean?

    All the best,
    Amy
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #6
    Paula G. said:

    Phil
    Do you have any mets in your liver now?
    Elizabeth, I don't know what to say because this is new to me. I hope you can find some answers to help you. Best to you PaulaG.

    No Mets
    Just Yankees!!!
    Hi Paula,
    My liver has been clear for a very long time. I only had the one operation, then the HAI pump. I've had mets in my lungs since day one and that was over 5 years ago.-phil
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #7
    MEK inhibitor question & other
    Hi Elizabeth,

    I am one who did have some mets in my lungs at the time of my liver resection. At that time, the lungs mets showed up on the regular CT, but not at all on the PET. I don't know if that's what made the difference or not, but they went ahead with the liver resection. I am currently on my third time of having chemo, but now I'm doing Folfiri for the second time. I've now had three treatments of it & I'll get another PET scan after the fourth to see if I'm responding or not. If not, then I may need to find a clinical trial. What can you tell me about the MEK inhibitor. I googled it, but the couple I came up with were not answering my questions. My questions are how does it work and what are the side effects of it?

    Phil, how did that work with the HAI pump being put in your liver at the time of surgery? Was it a completely internal device? I wonder if they ever go in and do that for recurrences in the liver, instead of more removal surgery or vs. the cyberknife or RFA route. I had no adjuvant chemo at all after my surgery (big mistake- at that time I did not have an oncology "team"- my oncologist basically didn't communicate at all with my surgeon. I suppose the surgeon assumed the oncologist would take care of thinking of adjuvant chemo), and certainly no liver pump installed. I then sufferered a recurrence in liver and lungs, which showed up on my PET four months after the liver surgery.

    This past year has been kind of a repeat, but with no surgery. I was then put on chemo after my recurrence and after 8 months of being on it, this past April's PET showed all clear. I went off the irinotecan but stayed on Xeloda and Avastin as "maintenance"- still had a recurrence four months after that and here I am, back on Folfiri since beg. of August (just had my third treatment of that yesterday). As long as my tumors respond to the irinotecan like last time, that's what I'll stay on. If/when they stop responding to it, that's when I'll need to find other options. Erbitux is not an option, as I'm kras mutant.

    Lisa
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #8
    lisa42 said:

    MEK inhibitor question & other
    Hi Elizabeth,

    I am one who did have some mets in my lungs at the time of my liver resection. At that time, the lungs mets showed up on the regular CT, but not at all on the PET. I don't know if that's what made the difference or not, but they went ahead with the liver resection. I am currently on my third time of having chemo, but now I'm doing Folfiri for the second time. I've now had three treatments of it & I'll get another PET scan after the fourth to see if I'm responding or not. If not, then I may need to find a clinical trial. What can you tell me about the MEK inhibitor. I googled it, but the couple I came up with were not answering my questions. My questions are how does it work and what are the side effects of it?

    Phil, how did that work with the HAI pump being put in your liver at the time of surgery? Was it a completely internal device? I wonder if they ever go in and do that for recurrences in the liver, instead of more removal surgery or vs. the cyberknife or RFA route. I had no adjuvant chemo at all after my surgery (big mistake- at that time I did not have an oncology "team"- my oncologist basically didn't communicate at all with my surgeon. I suppose the surgeon assumed the oncologist would take care of thinking of adjuvant chemo), and certainly no liver pump installed. I then sufferered a recurrence in liver and lungs, which showed up on my PET four months after the liver surgery.

    This past year has been kind of a repeat, but with no surgery. I was then put on chemo after my recurrence and after 8 months of being on it, this past April's PET showed all clear. I went off the irinotecan but stayed on Xeloda and Avastin as "maintenance"- still had a recurrence four months after that and here I am, back on Folfiri since beg. of August (just had my third treatment of that yesterday). As long as my tumors respond to the irinotecan like last time, that's what I'll stay on. If/when they stop responding to it, that's when I'll need to find other options. Erbitux is not an option, as I'm kras mutant.

    Lisa

    Hi Lisa
    A picture is worth a thousand words
    http://csn.cancer.org/node/175005
    Here you go, I had a image from a CT scan that shows my pump.
    The pump is on my left side and the liver is on the right with a catheter running between them.

    Lisa, I REALLY hope that more options open up for you. Too bad Erbitux isn't an option for you. My stuff has dragged on for some time with any small break I took in treatment giving an opening for more nodes to pop up. Hang in there!
    -phil
  • ADKer
    ADKer Member Posts: 147
    #9
    PhillieG said:

    Hi Lisa
    A picture is worth a thousand words
    http://csn.cancer.org/node/175005
    Here you go, I had a image from a CT scan that shows my pump.
    The pump is on my left side and the liver is on the right with a catheter running between them.

    Lisa, I REALLY hope that more options open up for you. Too bad Erbitux isn't an option for you. My stuff has dragged on for some time with any small break I took in treatment giving an opening for more nodes to pop up. Hang in there!
    -phil

    multiple mets
    Elizabeth -

    My understanding of the rationale with not doing resection when there are multiple mets is that the patient is better off continuing with chemo to prevent further increase in tumors and also better off not being weakened by surgery. In your case, when you are chemo resistant, the first rationale may not apply. Is the MEK inhibitor effective for you? I believe that there are some options for treating tumors of the liver and lungs but the issue will be whether anything can be done to inhibit further tumors. Some therapies that I believe are available to at least reduce tumor load are 90 Y-Microsphere therapy and stereotactic radiotherapy. Also, I believe that there is a clinical trial, NCT00846131, which combines the Y 90 therapy with systemic Sorafinib. These are a few new therapies that were described at the most recent Liver Symposium. I did not absorb all of the information but hopefully you can learn more if you research on line. I have requested dvd's of the symposium and can try to give you more information if I am able to follow the presentations better the second time around.

    I hope that you find something that works for you. I fear that I may be in the same situation down the road.
  • kimby
    kimby Member Posts: 797
    #10
    Progression
    Elizabeth,

    I also progressed on folfox and folfori w/erbitux. I wasn't a candidate for any other liver treatment readily available for multiple reasons. Other mets would not exclude you from SirSpheres. Sirtex.com will give you locations or PM me if you would like a referral to a wonderful doctor that could help with this. Resection is not your only hope.

    Kimby
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #11
    PhillieG said:

    Hi Lisa
    A picture is worth a thousand words
    http://csn.cancer.org/node/175005
    Here you go, I had a image from a CT scan that shows my pump.
    The pump is on my left side and the liver is on the right with a catheter running between them.

    Lisa, I REALLY hope that more options open up for you. Too bad Erbitux isn't an option for you. My stuff has dragged on for some time with any small break I took in treatment giving an opening for more nodes to pop up. Hang in there!
    -phil

    Thanks Phil
    Hi Phil,

    Thanks for posting the link to the picture- that was helpful! It appears that the actual pump is on the outside of your skin- is it?
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    #12
    lisa42 said:

    Thanks Phil
    Hi Phil,

    Thanks for posting the link to the picture- that was helpful! It appears that the actual pump is on the outside of your skin- is it?

    HAI pump
    Lisa,

    I have an HAI as well and the actual pump is completely internal to the body. It works exactly like a powerport through which one would receive systemic chemo. The HAI pump is accessed via a needle in the abdominal area and it is relatively painless to get chemo injected into it. Refer to Medtronic (maker of the pump I have) at http://wwwp.medtronic.com/Newsroom/LinkedItemDetails.do?itemId=1101853073889&itemType=backgrounder&lang=en_US. There is some great information there. There is a study referenced at that site that says:

    "After two years, 85 percent of the patients who received the combined treatments were still alive, and nearly 90 percent of patients in the same group were found to have no recurrence of disease in the liver. Of those treated with chemotherapy alone, only 69 percent were alive after two years, with 57 percent having had no recurrence of tumors in the liver."

    So you can see that the decrease in recurrence in the liver is quite significant.

    Hope this helps,
    Amy
  • impactzone
    impactzone Member Posts: 555 Member
    #13
    lisa42 said:

    MEK inhibitor question & other
    Hi Elizabeth,

    I am one who did have some mets in my lungs at the time of my liver resection. At that time, the lungs mets showed up on the regular CT, but not at all on the PET. I don't know if that's what made the difference or not, but they went ahead with the liver resection. I am currently on my third time of having chemo, but now I'm doing Folfiri for the second time. I've now had three treatments of it & I'll get another PET scan after the fourth to see if I'm responding or not. If not, then I may need to find a clinical trial. What can you tell me about the MEK inhibitor. I googled it, but the couple I came up with were not answering my questions. My questions are how does it work and what are the side effects of it?

    Phil, how did that work with the HAI pump being put in your liver at the time of surgery? Was it a completely internal device? I wonder if they ever go in and do that for recurrences in the liver, instead of more removal surgery or vs. the cyberknife or RFA route. I had no adjuvant chemo at all after my surgery (big mistake- at that time I did not have an oncology "team"- my oncologist basically didn't communicate at all with my surgeon. I suppose the surgeon assumed the oncologist would take care of thinking of adjuvant chemo), and certainly no liver pump installed. I then sufferered a recurrence in liver and lungs, which showed up on my PET four months after the liver surgery.

    This past year has been kind of a repeat, but with no surgery. I was then put on chemo after my recurrence and after 8 months of being on it, this past April's PET showed all clear. I went off the irinotecan but stayed on Xeloda and Avastin as "maintenance"- still had a recurrence four months after that and here I am, back on Folfiri since beg. of August (just had my third treatment of that yesterday). As long as my tumors respond to the irinotecan like last time, that's what I'll stay on. If/when they stop responding to it, that's when I'll need to find other options. Erbitux is not an option, as I'm kras mutant.

    Lisa

    So sorry to hear or rehear
    So sorry to hear or rehear heading back to chemo. My heart just is so heavy for everyone here. It's amazing what people can do and their strength. All my blessings
    Chip
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #14
    lisa42 said:

    Thanks Phil
    Hi Phil,

    Thanks for posting the link to the picture- that was helpful! It appears that the actual pump is on the outside of your skin- is it?

    Nope
    It's inside. It just photographs well.
    -p
  • lizbiz
    lizbiz Member Posts: 120
    #15
    kimby said:

    Progression
    Elizabeth,

    I also progressed on folfox and folfori w/erbitux. I wasn't a candidate for any other liver treatment readily available for multiple reasons. Other mets would not exclude you from SirSpheres. Sirtex.com will give you locations or PM me if you would like a referral to a wonderful doctor that could help with this. Resection is not your only hope.

    Kimby

    Thanks for the replies...
    I would like some info on your doc, Kimby. I'll PM you!

    As far as the MEK inhibitor trial I'm doing, the name of the drug is AZD6244 and it's being targeted to those who have B-Raf mutations in melanoma, colon and non-small-cell lung cancers. I was on it for a week but had to take a break due to a serious drug rash that developed. I will be starting back up again next week at a lower dosage. I know that they've done some preliminary testing of AZD6244 among those who have the KRAS mutation and it's shown to have mixed effects as far as efficacy is concerned. But, for some reason, it has shown "exquisite" sensitivity in B-Raf mutant tumors. I was also told that the fact that I broke out and the severity of my rash may be a good sign (that the drug is working). The goal is to stop the cancer from growing, not necessarily to shrink the tumors - although that has been shown to happen in a few cases.

    I have, presently, 1 liver met but I also have 2 small intra-abdominal mets and a small pre-scral met. The liver surgeon I originally saw at Mass General seemed to think that all of these masses are completely resectable. It just seems that as soon as the tumor boards become involved, no surgery is the prevailing voice. It's very frustrating.

    It's kind of strange, I'm only 33, but death doesn't really scare me anymore.

    Thanks again,
    Elizabeth

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