SOS: Stage 4, mets to lungs. No surgery?

A_concerned_son
A_concerned_son Member Posts: 6
in Colorectal Cancer #1

Hi all

 

I am new to this site, and really wish I didnt have to be here ;-(  I've been reading the posts on this site and find them to be much more hepful and insightful than the advice of mom's oncologist.  thanks for that.

 

My world has come crushing down and I am desperate for hope.... My mom was diagnosed in Sept 2012 with advanced colorectal cancer, with mets to both lungs.  She started chemo in October 2012 and is still doing that.  Scans will be done shortly to determine how it is going. I get why chemo is necessary, however it seems to me that surgery would help.  I've heard of cyberknife and temotherapy, a treatment that is not widely offered.

Does anyone have any (hopefully positive) feedback on this therapy?  And the cost?

 

Can anyone give me some advice on how to help my mom with perhaps other treatments.  Im desperate and want to do whatever I can to maximise her prospects.

thanks

Comments

  • Brenda Bricco
    Brenda Bricco Member Posts: 579 Member
    #2
    Sorry you have to be here...

    I know when my husband was first diagnosed I was under the impression that they would be rushing him to surgery but they didn't. It was chemo first and then surgeries, I know it's hard but hang in there.

    I would encourage your mom to get other opinions to insure that she is getting the best/correct treatment available. I believe the first oncologist we saw was more interested in selling us chemo than going for a cure; chemo first was the best option but it helped to know that we were doing what we needed to try save my husband's life.

    It could be that the cyber knife or other treatments will come after shrinkage with chemo; has your mom's onc discussed goals with your her?

    I know it's scary but hang around this board and hopefully we can help you out.

    GOD's blessings.

    Brenda

     

  • dmj101
    dmj101 Member Posts: 527 Member
    #3
    Being a patient with mets in

    Being a patient with mets in both lungs.. I can telll you I was told you don't want to operate and compromise your lungs.  If it was one lung then you'd have a better chance at operating..

    the most I am told I can hope for is controll of the growth.  There are drugs available other than chemo.. in my case we are hoping for the mets to reduce in number. and maybe an RFA is in my future.. we'll see.. but Lung mets are not a need to freak and start cutting.. so I am told.. so ..

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #4
    I haven't experienced lung mets,

    just wanted to wish you and your mom well.  I'm glad she has you looking out for her.  Sending hope your way that the scans will look great~Ann Alexandria

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #5
    Wonderful son.

    How wonderful for your mother to have a son who cares so much. Just your finding and posting on this site shows how concerned you are.

    What stage have they diagnosed your mum at?  

    My advice is for you (and your mother) to ask as many questions as you can. Keep a note book with you at all times. Any questions that pop into your head, write them down. No matter how small or insignificant you think they are. Make sure you get your questions are answered to your satisfactoin, if not, then maybe a second opinion and oncologist is on the books.

    Also keep note of (your mother can do this of course) all the symptoms and side effects she goes through each day. I keep a note of my vitals (blood pressure, temp, weight, heart rate) daily. I make note of everything in my journal, BM's, white tongue, sensitive scalp, nothing is off limits. 

    One thing that has really helped me, especially when I have been in pain, is a CD that leads you into a meditation and visualization. I was really skeptical when I found it on Amazon, but it really helped me calm my whole body. This is just for comfort and not for cure.

    There are many people here who are at the stage your mother is, and I know you will be flooded with help.

    Keep coming here, it is a wonderful support. We rally around and the love is real. 

    Blessings!

  • gizzyluv
    gizzyluv Member Posts: 143
    #6
    How wonderful....

    How wonderful your mom must feel having such a loving, caring son! I'm new to this site too, my husband Jason (42 yrs.) was diagnosed with Stage 4 colon cancer w/ one met to his liver on 1/28. The dr. was worried that his tumor was so large it was in danger of blocking his colon completely, so he underwent surgery on 2/8, we were hoping he would be able to remove the tumor but once he got in he saw that it wasn't about to block the colon, but it was much larger than he had thought & he felt it wouldn't have been safe to try & remove it at that time, SO.....Jason is scheduled to start chemo tomorrow, in hopes of shrinking the tumor enough to be able to safely remove it at a later time. When I first posted on here I got so many responses from concerned people asking WHY they were operating "first" instead of doing chemo first, so apparently the chemo is usually the first form of treatment. I'm not familiar with lung mets, but according to what the oncologist told Jason & me, he is very optimistic that once the chemo starts it will get rid of the liver met right off the bat, so.....hopefully that will happen for your mom & her lung mets?.....It might be good to ask the dr. if that is a possibility. You really should keep coming here, ask all the questions you have & I'm sure you will get answers. I feel so blessed to have found this site & all the wonderful people on it! They have certainly helped me & helped to ease my anxiety over this terrible, terrible thing called cancer. When I heard those words "I'm sorry sir, it's cancer".....I thought I would die. But, after the initial shock wore off I did what I always do when I don't understand something....I turned to the internet. And boy am I glad I did. I don't think I could have stayed sane this long had I not found this site. It's called "Cancer SURVIVORS Network" for a reason you know.....CANCER doesn't mean a death sentence....STAGE 4 doesn't mean a death sentence either! This site is FULL of Stage 4 Colon Cancer SURVIVORS!.....Survivors for YEARS! So, don't worry, breathe, & have faith....I hope this has helped at least a little. Take care, & hug your mom for us! Kris

  • A_concerned_son
    A_concerned_son Member Posts: 6
    #7
    Trubrit said:

    Wonderful son.

    How wonderful for your mother to have a son who cares so much. Just your finding and posting on this site shows how concerned you are.

    What stage have they diagnosed your mum at?  

    My advice is for you (and your mother) to ask as many questions as you can. Keep a note book with you at all times. Any questions that pop into your head, write them down. No matter how small or insignificant you think they are. Make sure you get your questions are answered to your satisfactoin, if not, then maybe a second opinion and oncologist is on the books.

    Also keep note of (your mother can do this of course) all the symptoms and side effects she goes through each day. I keep a note of my vitals (blood pressure, temp, weight, heart rate) daily. I make note of everything in my journal, BM's, white tongue, sensitive scalp, nothing is off limits. 

    One thing that has really helped me, especially when I have been in pain, is a CD that leads you into a meditation and visualization. I was really skeptical when I found it on Amazon, but it really helped me calm my whole body. This is just for comfort and not for cure.

    There are many people here who are at the stage your mother is, and I know you will be flooded with help.

    Keep coming here, it is a wonderful support. We rally around and the love is real. 

    Blessings!

    Thank you!

    Hi Trubrit

     

    Thanks so much for your response.  You have given me good advice, which I will certainly follow.

     

    My mom is in stage 4.....

  • Borac
    Borac Member Posts: 14 Member
    #8
    There are different schools
    There are different schools regarding lung mets. I had rectal/ liver resection 1 year ago, some lung nodules ( small ) were seen then. Wait and watch approach. Did xelox with avastin, then xeloda and avastin alone. Lung nodules grew some ( still under 1 cm) . Saw thoracic surgeon, he took 7 on left side, 4 were malignant 2 weeks ago. I have 5 on the right side and scheduled to have surgery in 10 days to take them out. My oncologist and surgeon think it is worth to have surgery as long as it will not compromise your lung function and quality of life. I will have chemo again after. Cyber knife and rfa have very good results.
  • A_concerned_son
    A_concerned_son Member Posts: 6
    #9
    gizzyluv said:

    How wonderful....

    How wonderful your mom must feel having such a loving, caring son! I'm new to this site too, my husband Jason (42 yrs.) was diagnosed with Stage 4 colon cancer w/ one met to his liver on 1/28. The dr. was worried that his tumor was so large it was in danger of blocking his colon completely, so he underwent surgery on 2/8, we were hoping he would be able to remove the tumor but once he got in he saw that it wasn't about to block the colon, but it was much larger than he had thought & he felt it wouldn't have been safe to try & remove it at that time, SO.....Jason is scheduled to start chemo tomorrow, in hopes of shrinking the tumor enough to be able to safely remove it at a later time. When I first posted on here I got so many responses from concerned people asking WHY they were operating "first" instead of doing chemo first, so apparently the chemo is usually the first form of treatment. I'm not familiar with lung mets, but according to what the oncologist told Jason & me, he is very optimistic that once the chemo starts it will get rid of the liver met right off the bat, so.....hopefully that will happen for your mom & her lung mets?.....It might be good to ask the dr. if that is a possibility. You really should keep coming here, ask all the questions you have & I'm sure you will get answers. I feel so blessed to have found this site & all the wonderful people on it! They have certainly helped me & helped to ease my anxiety over this terrible, terrible thing called cancer. When I heard those words "I'm sorry sir, it's cancer".....I thought I would die. But, after the initial shock wore off I did what I always do when I don't understand something....I turned to the internet. And boy am I glad I did. I don't think I could have stayed sane this long had I not found this site. It's called "Cancer SURVIVORS Network" for a reason you know.....CANCER doesn't mean a death sentence....STAGE 4 doesn't mean a death sentence either! This site is FULL of Stage 4 Colon Cancer SURVIVORS!.....Survivors for YEARS! So, don't worry, breathe, & have faith....I hope this has helped at least a little. Take care, & hug your mom for us! Kris

    Thank you!

    Hi Kris

     

    Thank you so much for your message.  it is very uplifting!  I see what you mean - this site is filled with wonderful people like yourself.

     

    I will keep asking questions and educate myself about this.

     

    Wishing you and your husband everything of the best, especially for his first day of chemo.

     

     

  • A_concerned_son
    A_concerned_son Member Posts: 6
    #10
    Borac said:

    There are different schools
    There are different schools regarding lung mets. I had rectal/ liver resection 1 year ago, some lung nodules ( small ) were seen then. Wait and watch approach. Did xelox with avastin, then xeloda and avastin alone. Lung nodules grew some ( still under 1 cm) . Saw thoracic surgeon, he took 7 on left side, 4 were malignant 2 weeks ago. I have 5 on the right side and scheduled to have surgery in 10 days to take them out. My oncologist and surgeon think it is worth to have surgery as long as it will not compromise your lung function and quality of life. I will have chemo again after. Cyber knife and rfa have very good results.

    Thanks Borac

    Hi Borac

     

    Thanks so much for your response.  May I ask.... have you tried erbitax?  (my apologies if Im messing up terminology here).  My mom's doctor is suggesting it.

     

    God bless and wishing you every success

     

  • A_concerned_son
    A_concerned_son Member Posts: 6
    #11
    annalexandria said:

    I haven't experienced lung mets,

    just wanted to wish you and your mom well.  I'm glad she has you looking out for her.  Sending hope your way that the scans will look great~Ann Alexandria

    Thanks so much for your

    Thanks so much for your message of hope :-)

  • sdp
    sdp Member Posts: 181
    #12
    A_concerned_son said:

    Thanks Borac

    Hi Borac

     

    Thanks so much for your response.  May I ask.... have you tried erbitax?  (my apologies if Im messing up terminology here).  My mom's doctor is suggesting it.

     

    God bless and wishing you every success

     

    Erbitux
    Erbitux is effective for Kras wild type tumours. Your mom tumor has to be checked for Kras mutation .

    I have had erbitux with FOLFOX after dx and it has been quite effective for me and I have been able to get resection of the colon tumor and the liver mets. Just finished maintenance chemo which was weekly dose of erbitux solo.

    Scans are scheduled after a week or so may be two weeks. So will know how effective the erbitux has been for me. I had a lot of rash, acne , dryness of skin etc while on erbitux.
  • gizzyluv
    gizzyluv Member Posts: 143
    #13
    A_concerned_son said:

    Thank you!

    Hi Kris

     

    Thank you so much for your message.  it is very uplifting!  I see what you mean - this site is filled with wonderful people like yourself.

     

    I will keep asking questions and educate myself about this.

     

    Wishing you and your husband everything of the best, especially for his first day of chemo.

     

     

    Yeah....about the

    Yeah....about the chemo.....didn't happen today, unfortunately. I won't make this long (I put a post w/ all the details) but basically Jason is having a problem digesting his food, due to the size of the tumor (they think so at least, ct scan will show for sure) so he may have to have surgery to have things "re-routed" so his food will have another way of going down, in laymans terms. ("my" terms lol) Yes, it sucks, big time, but we just have to do what needs to be done so Jason can start getting the chemo & start getting rid of the cancer! Nobody said this was gonna be easy, but having the good people on here to turn to certainly makes it easier than it would be trying to do it on our own! Please keep us up to date on how your mom is doing & please give her a big hug! (((HUGS)))) to you too! Kris

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