response to "stage IV's please help"

oneagleswings
oneagleswings Member Posts: 425 Member
edited March 2014 in Colorectal Cancer #1
Thank you to all you wonderful stage IV's who responded to my inquiry. As some of you asked- my "better half" went to stage IV from III at the last DR visit where an ultrasound after his first return visit after being off adjuvant treatment for 3 months for stage III showed 6 spots on the liver following being on 5FU/leucovorin for 6 months.
He has a CAT scheduled in another week but the ONC says the "spots" can't be anything else but liver mets...so - anyone else who wants to let me know what they were given as a stage IV will help once we have to make a decision on treatment.
Thoughts and prayers are with all of you- cancer steals the future...so how can you get past that???
Bev

Comments

  • shmurciakova
    shmurciakova Member Posts: 906 Member
    Hmm, well I am sorry to hear that your husbands original chemo did not work, however, it is likely that he already had mets to the liver from the beginnng. I doubt they just popped up all of a sudden. They were probably just too small to detect until now. I had a similar experience in that I had a walnut sized met to the liver appear on my first scan following my original 6 months of 5-FU/Leukovorin. I was fortunate in that it was surgically removed. I then was put on Xeloda/Camptosar for 6 treatments. That was before Avastin and Erubitux, so I don't know if they would give him the same treatment as I had or not.....
    Is your husband a candidate for surgery? Where is he being treated?
    At any rate, you should not feel that cancer "steals the future". It really only steals the time being, and that is only if you let it. You can not know what the future holds and if you let cancer "steal the present" that would be a real shame. Of course we have all let this happen to us to some extent, I am sure, but it is important to know that you can take control of what is or is not "stolen" from you. Fear is hard to control, but believing that your husband can overcome this is how you get past it, and visualizing him once this is all overwith. Do not be afraid to dream about the future. Good luck to you!
    Take care, Susan.
    P.S. I am still here NED, and I had my liver problems and chemo 2 years ago. So see, it did not take away my future.
  • oneagleswings
    oneagleswings Member Posts: 425 Member

    Hmm, well I am sorry to hear that your husbands original chemo did not work, however, it is likely that he already had mets to the liver from the beginnng. I doubt they just popped up all of a sudden. They were probably just too small to detect until now. I had a similar experience in that I had a walnut sized met to the liver appear on my first scan following my original 6 months of 5-FU/Leukovorin. I was fortunate in that it was surgically removed. I then was put on Xeloda/Camptosar for 6 treatments. That was before Avastin and Erubitux, so I don't know if they would give him the same treatment as I had or not.....
    Is your husband a candidate for surgery? Where is he being treated?
    At any rate, you should not feel that cancer "steals the future". It really only steals the time being, and that is only if you let it. You can not know what the future holds and if you let cancer "steal the present" that would be a real shame. Of course we have all let this happen to us to some extent, I am sure, but it is important to know that you can take control of what is or is not "stolen" from you. Fear is hard to control, but believing that your husband can overcome this is how you get past it, and visualizing him once this is all overwith. Do not be afraid to dream about the future. Good luck to you!
    Take care, Susan.
    P.S. I am still here NED, and I had my liver problems and chemo 2 years ago. So see, it did not take away my future.

    Hi Susan:
    Thank you for the uplifting post- when I said that cancer steals your future- I mean that before cancer reared it's ugly head- it was easy to plan far into the future..ie when the kids are grown and we retire etc. etc. Now it seems that the wind is knocked out of us- we were so positive that adjuvant therapy after surgery would cure the cancer and now- as I look at stats they scare the pants off me- every thing I read talks in terms of months- even the new wonder drugs say "extend survival for 4 months" and that is "signifcant"...I have always been a long term planner and not thinking in 5 year increments will be hard- but yes, you are right- we have to not let cancer steal our present!!!

    The ONC says that 6 "spots" ar too many for a liver resection..but we live in Canada where cancer care is in the dark ages...avastin...radio frequency ablation..are not available here as treatment options..and it appears neither is liver resection. My prayers lately are to win a lottery so that we can afford to go to the USA for treatment!!!!!!

    My "stiff upper lip" crumbles now and then so thank you all for letting me vent.
    Bev
  • oneagleswings
    oneagleswings Member Posts: 425 Member

    Hi Susan:
    Thank you for the uplifting post- when I said that cancer steals your future- I mean that before cancer reared it's ugly head- it was easy to plan far into the future..ie when the kids are grown and we retire etc. etc. Now it seems that the wind is knocked out of us- we were so positive that adjuvant therapy after surgery would cure the cancer and now- as I look at stats they scare the pants off me- every thing I read talks in terms of months- even the new wonder drugs say "extend survival for 4 months" and that is "signifcant"...I have always been a long term planner and not thinking in 5 year increments will be hard- but yes, you are right- we have to not let cancer steal our present!!!

    The ONC says that 6 "spots" ar too many for a liver resection..but we live in Canada where cancer care is in the dark ages...avastin...radio frequency ablation..are not available here as treatment options..and it appears neither is liver resection. My prayers lately are to win a lottery so that we can afford to go to the USA for treatment!!!!!!

    My "stiff upper lip" crumbles now and then so thank you all for letting me vent.
    Bev

    Me again:
    When I asked for "letting me know what they were given"- I mean the type of treatment and chemo- thanks again
    Bev
  • shmurciakova
    shmurciakova Member Posts: 906 Member
    Hi again,
    Maybe you can get a second opinion on whether or not your husbands mets are resectable. I am pretty sure it depends if they are all sort of clustered together in one area, or if they are spread out.
    I know one gal on here who was from Canada had luck by writing the drug companies that make Erubitux and Avastin. I believe she also wrote some of the teaching hospitals here in the US and somehow was able to be treated w/ these drugs here in the states. It may take some doing on your part, and I am not sure where to tell you to start, but I know it can be done.

    As we have all seen this week through the events in Louisiana, Mississippi, etc., the future is never a certainty. I am sure those folks feel much the same way that you do right now. All we can do is forge ahead with what is handed to us. You can try to think of this as being forced to go down a different road, but like I said, there is no reason for you not to continue to think of what you will do in the future, but maybe living in the present is a better way to go anyway. That way you don't miss the blessings that are right in front of you on any given day.
    Take care and best of luck,
    Susan.
  • sallyjoy
    sallyjoy Member Posts: 102

    Me again:
    When I asked for "letting me know what they were given"- I mean the type of treatment and chemo- thanks again
    Bev

    Bev,
    Sorry to hear about your hubbys situation. My hubby was dx Feb. 04 with stage 4, one met to the liver. He first had colon resection suregry and then had a mediport placed for chemo. He did 5 treatments of FOLFOX and Avastin. He got lots of side effects, but it did manage to shrink his liver met some. In Aug. 04 he had liver resection at Johns Hopkins in Baltimore Md. He decided to stop chemo even though they still wanted him to do more. He is still NED (no eveidence of disease). His father also has the dreaded CC. He was considered cured after 8 yrs. NED but had a recurrance almost 3 yrs. ago with mets to lungs, liver and pancreas. He has been on chemo for almost 3 years - they called it pallative, but guess what - they just announced he is finally in remission this summer, and although he is not a good surgery candidate because of the multiple places of mets, he still is living a decent quality life. His chemo was the 5 FU and camptosar sp? and then they switched him to the FOLFOX and avastin. DO NOT give up hope! I know what you mean about the future, but you have to take life as it comes, one day at a time. Live it up now :) have you ever heard that song "Live like you were dying"?(not meant to sound morbid) We all should live this way! Its a good song. Please feel free to contact me with any questions you may have. Know that you (and all those here) are in our thoughts and prayers, always...
    God Bless,
    Sally