Mets to liver and lung

Vickilg
Vickilg Member Posts: 281 Member
in Colorectal Cancer #1
Going to be fighting this for the third time. Just found out that I have two spots on liver and one on lung. Last year I had only only one spot on liver which they removed followed by chemo. Finished chemo in September. Now just a few months later I have more mets to liver and now my lung. I am very scared because it keeps coming back worse. I am going to beg surgeons on Tuesday to cut out all spots. Not sure what they will say. I am not looking forward to the chemo. Has anyone had a similar experience? Is lung surgery painful? Has anyone had the mets to liver and lung and then. Ern NED?

Comments

  • Kenny H.
    Kenny H. Member Posts: 502 Member
    #2
    How large are the spots on
    How large are the spots on lungs? I have 6 (4-7mm) but was told inoperable.
  • Vickilg
    Vickilg Member Posts: 281 Member
    #3
    Kenny H. said:

    How large are the spots on
    How large are the spots on lungs? I have 6 (4-7mm) but was told inoperable.

    One on lung which is 4mm.
    One on lung which is 4mm. I meet with surgeon on Tuesday. Why are your spots inoperable? What happens in that case ?
  • johnnybegood
    johnnybegood Member Posts: 1,117 Member
    #4
    Vickilg said:

    One on lung which is 4mm.
    One on lung which is 4mm. I meet with surgeon on Tuesday. Why are your spots inoperable? What happens in that case ?

    hi
    i have had spots on my liver and lung since jan.2011.as of right now my liver is all clear but nothing has been done to my lungs.yes it started out in one lung and now is in both.i have been thru chemo and surgery on my liver and i will be on chemo the rest of my life because that seems to keep it from growing.just take one day at a time and breathe.we are here for you...Godbless...johnnybegood
  • geotina
    geotina Member Posts: 2,111 Member
    #5
    Shoot -
    I hate to hear this. The best source of info on this may be Craig (Sundanceh) or Jennie (idlehunters). Jennie recently completed radiation for lung mets and Craig has had open surgery for lung mets. If the surgeon refuses any type of surgery which they often do when it is both in the lungs and liver, look into the radiation options since your mets appear to be small at this point. Send them a pm or do a search in the search box and their posts should come up.

    Best wishes - Tina
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    #6
    geotina said:

    Shoot -
    I hate to hear this. The best source of info on this may be Craig (Sundanceh) or Jennie (idlehunters). Jennie recently completed radiation for lung mets and Craig has had open surgery for lung mets. If the surgeon refuses any type of surgery which they often do when it is both in the lungs and liver, look into the radiation options since your mets appear to be small at this point. Send them a pm or do a search in the search box and their posts should come up.

    Best wishes - Tina

    I'm so sorry this stuff
    I'm so sorry this stuff keeps popping up. Were these there all along but just not big enough to show on scans? Have you been on chemo. all along?? If so which chemo. have they given you. Others have had treatments for these, I'm sure they'll give you some good advice on the different options.
  • janie1
    janie1 Member Posts: 753 Member
    #7
    smokeyjoe said:

    I'm so sorry this stuff
    I'm so sorry this stuff keeps popping up. Were these there all along but just not big enough to show on scans? Have you been on chemo. all along?? If so which chemo. have they given you. Others have had treatments for these, I'm sure they'll give you some good advice on the different options.

    Same boat, sort of
    I had a lot of my liver cut out in January.....now 3 new mets there. I'm not surprised because I had so much disease. 3 is 3 too many, but did have about 15 prior to January.
    The plan is to ablate them (RFA).....radiofrequency to burn them.

    Sorry, you have this again, but they are small and few......so hang in there. I don't know what is best for the liver, another surgery?.....or ablate since it is just one?

    For the lungs, wouldn't think you would need a big surgery for that. Either RFA, or cyberknife.
    On another site I read about someone that had "Truebeam" done to their lung......i think it is also a very pinpointed radiation to the tumor.
    Sorry, don't know much about it, but it sounded good according to the person who had it done at University of Pittsburgh, i think.
    I didn't research it further, as of yet.

    Let us know what the docs say. Take care.
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    #8
    janie1 said:

    Same boat, sort of
    I had a lot of my liver cut out in January.....now 3 new mets there. I'm not surprised because I had so much disease. 3 is 3 too many, but did have about 15 prior to January.
    The plan is to ablate them (RFA).....radiofrequency to burn them.

    Sorry, you have this again, but they are small and few......so hang in there. I don't know what is best for the liver, another surgery?.....or ablate since it is just one?

    For the lungs, wouldn't think you would need a big surgery for that. Either RFA, or cyberknife.
    On another site I read about someone that had "Truebeam" done to their lung......i think it is also a very pinpointed radiation to the tumor.
    Sorry, don't know much about it, but it sounded good according to the person who had it done at University of Pittsburgh, i think.
    I didn't research it further, as of yet.

    Let us know what the docs say. Take care.

    Hey Vicki.....
    Why can't that crap just stay gone! Sucks! To answer your question about being NED after its in your lungs and liver???? I did. It only lasted 6 months but it did happen so YES...it's very much a possibility...and I am not the only one it happened to. That was back in 2009 when I was first DX. Chemo got rid of 4 liver mets and 15 lung mets. I was told I was not operable either at that time because 2 organs were involved and because of location of some of the mets. My liver has remained clear (knock on wood) since that time but I have had 3 recurrences in my lungs and have used Cyberknife successfully each of those times...along with some type of chemo to get me back to a NED status which is where I have been for the past several months but still take Vectibix every 2 weeks and have added TCM to the mix. Is CEA a good marker for you and do you know what yours is right now? If I have another recurrence I will be looking into RFA. Keep us informed and keep your chin up....you have a lot of options!

    Jennie
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #9
    Praying for you
    Vicki,

    I'm really sorry you're facing it again. I hope you get a good plan that will have great results for you.

    *hugs*
    Gail
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #10
    surgery and hitting more targets
    Sorry about the spots. My wife has had suspicious spots in lung and liver from the start, little or no progression. She's been on cimetidine (an off label VEGF and EGFR inhibitor with immune stimulating properties) and on natural cancer inhibitors from the first week of diagnosis, with maintenance metronomic (daily) oral chemo since 6 weeks after first surgery. Including for the 2nd surgery to remove a cluster of para-aortic lymph nodes.

    What was crucial was that we could convince the surgeon that CA19-9 (blood test is so-so, tissue stains better) related metastatic processes had been, and would likely be shut down, during and after surgery by her cimetidine + daily light chemo treatment + natural inhibitors of various molecular targets. Our oral 5FU chemo isn't available in the US, daily low dose Xeloda would be closest but not the same.

    We haven't eliminated any more spots over 4mm in the most recent CT scan, after some initial successes, but the spots aren't doing much either. If they do anything, we'll probably be able to physically eliminate them, surgery preferred, and hopefully just stay on the lite, metronomic chemo+super supplements (per LEF, Abram Hoffer, Block, Berkson). Ordinary IV 5FU chemo would probably have stopped being effective last year. Instead some of my wife's 5FU treatment activity markers are actually climbing with a new supplement, Biothera Wellmune WGP, approaching 2 years of light chemo therapy.
  • abackhou
    abackhou Member Posts: 77 Member
    #11
    From my CT scan done last

    From my CT scan done last week, I have 8 colon secondary tumors in my lungs all around 20- 35 mm size and a 55mm one in my liver. Still growing, now CEA of 29. Now numerous ones in the lymph node areas have again re-appeared. My Oncologist has told me that they cannot, and will not do surgery for my Stage 4. Only chemo can help, which it did by helping to keep this disease at bay, I had 3 years of conventional treatment. I am still here and feeling really good now and I have accepted my fate.

    Good luck, all the best.

    Andrew
  • Erinb
    Erinb Member Posts: 293
    #12
    I'm sorry about the
    I'm sorry about the reocurrance. That stinks-to say in the least. My husband has had liver mets that could not be removed for 3 years and has had lung mets under a centimeter for over a year (too small to ablate and doctor doesn't recommend surgery since liver mets are inoperable due to location). He has been on 5fu + Avastin for about 7 months and it has been holding everything stable as far as we can tell by scans, but his CEA has been elevated since last summer when he took a 5 month break. My husband can tolerate the therapy well and he couldn't with erbitux, oxaliplatin or irronitecan.
    I hope you get some other opinions from people who have had a similar experience.
    Erin
  • johnnybegood
    johnnybegood Member Posts: 1,117 Member
    #13
    Erinb said:

    I'm sorry about the
    I'm sorry about the reocurrance. That stinks-to say in the least. My husband has had liver mets that could not be removed for 3 years and has had lung mets under a centimeter for over a year (too small to ablate and doctor doesn't recommend surgery since liver mets are inoperable due to location). He has been on 5fu + Avastin for about 7 months and it has been holding everything stable as far as we can tell by scans, but his CEA has been elevated since last summer when he took a 5 month break. My husband can tolerate the therapy well and he couldn't with erbitux, oxaliplatin or irronitecan.
    I hope you get some other opinions from people who have had a similar experience.
    Erin

    hey Erin
    i did not know your husband had mets in liver and lung.i guess i missed that somewhere.im so sorry hope he is feeling ok....Godbless...johnnybegood
  • Vickilg
    Vickilg Member Posts: 281 Member
    #14
    johnnybegood said:

    hey Erin
    i did not know your husband had mets in liver and lung.i guess i missed that somewhere.im so sorry hope he is feeling ok....Godbless...johnnybegood

    Update... Sort Of
    The the two new spots on the liver turn out to be only one spot and is the same spot that I had ablation done in February. There is debate on if the abalation did not work or if it is just lighting up on the PET Scan because it was so recent. My CEA level is raised slightly so the oncologist does not wants them to do full on surgery to remove the spot. I handle surgery much, much better than chemo and the oncologist is looking to cure me. As for the lung met, it is 4mm and the lung surgeon said it is too small for him to do suregery on at this time because he might miss it because he cannot even see. After the liver surgery he has requested no chemo so that he can monitor the lung to see if it grows and gets big enough to biopsy or remove in surgery. He was very positive and said that he has no problem going in and cutting it out. All this sounds great but here is the but... that always seems to find it was into a cancer conversation. I am having a Cat Scan done on Friday on the lung. If there are more hidden nodules in the lung then the liver surgery is off and I go straight to aggressive chemo with surgery planned for later. Oddly, yesterday my husband and I walked away from the hospital like we just won the lottery if all goes according to plan with the surgery, etc. I had to laugh. Three years ago if you had told me that I would be so happy because I was having surgery to remove cancer I would have thought you were nuts. Today, a veteran in this war, I am praying for the surgery becuase it means... a possible cure or at least God willing a step closer to it. Hate the cancer roller coaster game because as we all know on Friday, it would be a very different story. Here's praying for me and you both!
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #15
    Vickilg said:

    Update... Sort Of
    The the two new spots on the liver turn out to be only one spot and is the same spot that I had ablation done in February. There is debate on if the abalation did not work or if it is just lighting up on the PET Scan because it was so recent. My CEA level is raised slightly so the oncologist does not wants them to do full on surgery to remove the spot. I handle surgery much, much better than chemo and the oncologist is looking to cure me. As for the lung met, it is 4mm and the lung surgeon said it is too small for him to do suregery on at this time because he might miss it because he cannot even see. After the liver surgery he has requested no chemo so that he can monitor the lung to see if it grows and gets big enough to biopsy or remove in surgery. He was very positive and said that he has no problem going in and cutting it out. All this sounds great but here is the but... that always seems to find it was into a cancer conversation. I am having a Cat Scan done on Friday on the lung. If there are more hidden nodules in the lung then the liver surgery is off and I go straight to aggressive chemo with surgery planned for later. Oddly, yesterday my husband and I walked away from the hospital like we just won the lottery if all goes according to plan with the surgery, etc. I had to laugh. Three years ago if you had told me that I would be so happy because I was having surgery to remove cancer I would have thought you were nuts. Today, a veteran in this war, I am praying for the surgery becuase it means... a possible cure or at least God willing a step closer to it. Hate the cancer roller coaster game because as we all know on Friday, it would be a very different story. Here's praying for me and you both!

    Good Luck, Vicki:)
    I had written you a nice reply the other day and when I submitted it, the whole thing disappeared...it was so deflating as I'd spent some time writing it...after that happened, I couldn't write my own name:)

    I had been wanting to talk to you for awhile and when I saw this post, I knew the time was right...but we can talk another day.

    From your update, it sounds like Friday will be a big day - so best of luck and I look forward to hearing all about it. And if recurrence is confirmed, I'd really like to talk to you.

    I've had cancer 3x myself - and walked away clean all 3x - though as always we are watching new spots on my other good lung and back on my liver...this would make #4 for me if confimred, but my scans are a few more weeks away.

    June 2012 will mark 8-years for me in the battle. I've seen a maturation in you since you first joined...I figured early on, that due to where I was in my journey and the way that I saw things and talked about them, that I would not be good for you, so I stayed quiet.

    But, recurrence changes one's perspective and views. I think we should always expect a recurrence after our initial battle...but as you are seeing, the specter or confirmation of #3 really "rocks your world", as you succinctly put it.

    And it did me too - knocked me for a loop...made me question - made me reassess and all of that internfal struggle...I think what it does to you, is it begins to solidify your feelings that is not as easy as it looks. It makes you begin to understand that you may be in it for the long haul.

    But then, look at a guy like me...8-years 51x chemo 55x rads 4-major surgery (2 as lung) and still going...so if cure doesn't work for me, I am extending further out than I expected to - or that anyone else expected me too.

    So, if the road to cure gets rocky, you can always take the road of extension...I'll wait for you:)

    Best of luck on Friday - and we'll hopefully talk some more soon:)

    -Craig
  • 3RScott
    3RScott Member Posts: 6
    #16
    idlehunters said:

    Hey Vicki.....
    Why can't that crap just stay gone! Sucks! To answer your question about being NED after its in your lungs and liver???? I did. It only lasted 6 months but it did happen so YES...it's very much a possibility...and I am not the only one it happened to. That was back in 2009 when I was first DX. Chemo got rid of 4 liver mets and 15 lung mets. I was told I was not operable either at that time because 2 organs were involved and because of location of some of the mets. My liver has remained clear (knock on wood) since that time but I have had 3 recurrences in my lungs and have used Cyberknife successfully each of those times...along with some type of chemo to get me back to a NED status which is where I have been for the past several months but still take Vectibix every 2 weeks and have added TCM to the mix. Is CEA a good marker for you and do you know what yours is right now? If I have another recurrence I will be looking into RFA. Keep us informed and keep your chin up....you have a lot of options!

    Jennie

    Hey Vicki

    Are u still alive? I hate these old threads, dont know who to talk to...

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #17
    3RScott said:

    Hey Vicki

    Are u still alive? I hate these old threads, dont know who to talk to...

    Vicki is no longer with us

    She passed away a few years ago. 

    Your best bet for 'talking' is to start your own thread here http://csn.cancer.org/forum/128

    Sadly, several who have posted in this thread, are no longer with us. 

    SUE

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #18
    3RScott said:

    Hey Vicki

    Are u still alive? I hate these old threads, dont know who to talk to...

    Personal message

    I have sent a personal message to you, Scott, though I doubt that will get through as we have had trouble there, also. 

    My last two replies have been sent to admin. I am thinking it is because I added the link to post on the forum page.  

    So no, Vicki has passed on, as have several others who have posted to this thread. 

    If you would like to 'talk' please start a new thread. For some reason I cannont link you, so here is the link broken down    csn.  cancer.  org/  forum/  128

    Admin, please do something about the problems here on the forum. We go through enough stuff as it is, let alone not being able to post.  

    SUE

Discussion Boards