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Hello, I've been lurking for a while and decided the time was right to sign up!

ubcreative
ubcreative Member Posts: 19

Hello,

Without knowing it you have all been supporting me since January when I discovered this site.  I've been lurking in the background and learning from your experiences.

Short version about me.  I'm 45 yo female, living in Australia.  Just be Christmas I was Dx with Stage 4 Colon Cancer (Sigmoid) with mets to the liver.  Obviously this rocked my world in a bad way, like everyone else on here I'm sure. 

I was initially told that surgery wasn't viable as my liver had to many tumours and was placed on a cocktail of Oxyplatin/Avistan/Xeloda.  After 4 rounds the tumours had shrunk 30-40%.  CEA started at 740 but after round 5 was at 18.  Ive had the 6th round and awaiting those results.  Onc wont do more that 8 rounds with the Oxy so that is being dropped soon, 2 more to go.  I'm torn about this, I hate how I feel after this cocktail but I am having some results.  I'm nervous about how things will change when the Oxy goes and at the same time excited not to feel so dodgy.  I've been also told if I keep responding the same and then maintain, that surgery may be an option later in the year.

What else, I've been lucky with my work as my employer has been a perfect example on how to support a sick employee.  I work from home Wednesdays and if I don't feel up to coming in and can go home early with no guilt if a day becomes too long - in fact they often nag me to go!

I also have a great family and network of friends, who support me in ways that I would never have imagined.  Still, there is nothing like being around people who are going through what you are, and that is what I have been getting from reading the posts in this forum.  At the same time it makes me sad that so many are on this trip.

What else? Don't want to bore you, I know that my story is not new.  Oh, I'm planning a trip to Vegas in September, then up to Northern Cal to visit a friend, that is giving me something to look forward to and I'm ridiculously excited about it.  We must have things to look forward to.

Thanks for listening (or reading)

Ursula

Comments

  • renw
    renw Member Posts: 282
    The Golden rule is: Don't

    The Golden rule is: Don't believe everything your oncologist tells you.

    Even with extensive liver mets, surgery can still be an option.

    http://www.alpps.net

  • Semira
    Semira Member Posts: 378
    Welcome to our

    international family. Glad you found us! Good Idea to go on with your Vegas plan. (on our side it was a trip to India which we first had to cancel due to husbands diagnose but managed to go on 14 months afterwards. Lookig foreward to this helped a lot!)

    A hello from Cologne, Germany

    Petra (caregiver to husband with stage 4 coloncancer, mets to liver)

  • fatbob2010
    fatbob2010 Member Posts: 467
    Hello

    Hello Ursula, welcome to the board.  

    It is a great place to get information and often support (as you have already found out).  However, it is also the place most, if not all, of us would rather not have been drawn to,  

    I seem to remember that there have been others on this board who have had surgery with multiple Liver mets following Chemo or Chemoradiation intervention.  My memory is not as good as it once was.  Another thing that I have learned here is that there is  seemingly often wisdom in second opinions.

    Your planned upcoming vacation sounds great!!

    Keep us updated with your progress.

    Art

  • YoVita
    YoVita Member Posts: 590
    Welcome to a great support group

    Glad to hear that chemo has reduced tumors for possible surgery.  I'm glad to hear of your family and work support.  That is so important.  Keep us posted.

  • AnnLouise
    AnnLouise Member Posts: 276
    Similar diagnosis....

    I was diagnosed in Nov. 2011 with stage IV colon cancer with mets to the liver. I had colon surgery and then on oxy,xeloda and avastin. I had liver resection June 2011 but mets came back...SIRTS to liver in Nov. and Dec......clear liver scan in March. Now mets in lung but gone in liver. 

    I am glad that the chemo is working and there are many options for the liver mets.

    You seem to have a great attitude and good support system. That is so important.....and planning for future trips and activities is such a good thing. I am looking forward to a family vacation to our lake house in July and a family trip to Hawaii in Dec. 

    Welcome to a great support system with a wealth of knowledge and personal experiences. Any questions, please feel free to ask..~ Ann

  • annalexandria
    annalexandria Member Posts: 2,571
    Welcome to the board, Ursula!

    Definitely not a club anyone wants to join, but now that you're here, hope that we can give you a little support along the way.  I had to drop the Oxy midway thorugh treatment, because the neuropathy was getting so bad.  According to my doc, it accounts for only about a 5% difference in outcome, so I think if your doctor recommends dropping it, it's probably ok to do so.  I have pretty unrelenting nerve damage from it, and wish I would have dropped it sooner.  I also know folks who have had it cut back by 20 or 30%...you could ask your doc about this option, if you really would like to keep it going.  Good luck, and keep us posted on how you're doing!  Ann Alexandria

  • gfpiv
    gfpiv Member Posts: 59
    welcome

    Welcome to the club.  The good news is that 8 tx of Oxaliplatin is probably good - from what I've heard, the added shrinkage after tx 8 is usually minimal, and the chance of potentially permanent neuropathy increases exponentially.  Not only that, but with only 8 tx down, there's a decent chance that they can revisit and reintroduce Oxi for another 6 or so tx in a couple years if necessary.  As stage IV currently inoperable, I imagine your next course of treatment will be FOLFIRI (possibly with Avastin).  That can be very effective in shrinking lesions too for some people - though there are of course different side effects to that.  And there's always slightly more novel treatments like sir-spheres, chemoembolization, RFA and HAI that you may consider on the back burner, depending on what's available in Oz.  Either way, best of luck in your treatment.

    -Chip

  • karguy
    karguy Member Posts: 1,020
    Welcome

    I'm sorry you have to be here,but I agree that you should get a second opinion.I had one met on my liver,golf ball size.I did 5fu,folfox,oxy,and avastin.It shurnk the tumor down level with the liver,then I had surgery.I'm glad the chemo is working,that's a good sign.We are here if you have any questions,or just want to vent.I think you should make plans for the future,and live your life like you normally would.Think positive,and don't ever give up.Good luck.

  • bigman4christ
    bigman4christ Member Posts: 87
    Hey

    Hey Ursula, first of all welcome! i am glad that you are getting some good advice and help from here.  I am on the same cocktail as you and it also seems to be working so we can both be excited about that!  the Dr. told me surgery is not possible either because i have so much of my liver covered in tumors.  His thought was because he cant do the surgery on the liver there is no point in putting my body through surgery on the colon because there was still the cancer in the liver. 

    After your 8 rounds of Oxy do you know what the onc will switch you to?  I started out on another drug (cant remember the name right now)  but it didnt do anything for my liver.

    Have fun in vegas and northern cali, it will be very hot and sunny for you i am sure of it :)  take lots of pics to show everyone of us that dont get to go play in the sun right now :)

    zach 

  • ubcreative
    ubcreative Member Posts: 19
    renw said:

    The Golden rule is: Don't

    The Golden rule is: Don't believe everything your oncologist tells you.

    Even with extensive liver mets, surgery can still be an option.

    http://www.alpps.net

    Thank you for the link Renw -

    Thank you for the link Renw - and for the Golden Ruke!

     

  • ubcreative
    ubcreative Member Posts: 19
    Semira said:

    Welcome to our

    international family. Glad you found us! Good Idea to go on with your Vegas plan. (on our side it was a trip to India which we first had to cancel due to husbands diagnose but managed to go on 14 months afterwards. Lookig foreward to this helped a lot!)

    A hello from Cologne, Germany

    Petra (caregiver to husband with stage 4 coloncancer, mets to liver)

    Thank you for your kind

    Thank you for your kind welcome. :)

  • ubcreative
    ubcreative Member Posts: 19

    Hello

    Hello Ursula, welcome to the board.  

    It is a great place to get information and often support (as you have already found out).  However, it is also the place most, if not all, of us would rather not have been drawn to,  

    I seem to remember that there have been others on this board who have had surgery with multiple Liver mets following Chemo or Chemoradiation intervention.  My memory is not as good as it once was.  Another thing that I have learned here is that there is  seemingly often wisdom in second opinions.

    Your planned upcoming vacation sounds great!!

    Keep us updated with your progress.

    Art

    Thank you for your welcome

    Thank you for your welcome Fatbob. My memory isn't as reliable as it was either. I'm reduced to making lists these days!

  • ubcreative
    ubcreative Member Posts: 19
    YoVita said:

    Welcome to a great support group

    Glad to hear that chemo has reduced tumors for possible surgery.  I'm glad to hear of your family and work support.  That is so important.  Keep us posted.

    Thanks for your welcome

    Thanks for your welcome Yovita. The dog in your pic looks very cute.  

  • ubcreative
    ubcreative Member Posts: 19
    AnnLouise said:

    Similar diagnosis....

    I was diagnosed in Nov. 2011 with stage IV colon cancer with mets to the liver. I had colon surgery and then on oxy,xeloda and avastin. I had liver resection June 2011 but mets came back...SIRTS to liver in Nov. and Dec......clear liver scan in March. Now mets in lung but gone in liver. 

    I am glad that the chemo is working and there are many options for the liver mets.

    You seem to have a great attitude and good support system. That is so important.....and planning for future trips and activities is such a good thing. I am looking forward to a family vacation to our lake house in July and a family trip to Hawaii in Dec. 

    Welcome to a great support system with a wealth of knowledge and personal experiences. Any questions, please feel free to ask..~ Ann

    Thanks for youR welcome Ann,

    Thanks for youR welcome Ann, and for sharing. Early on my doc mentioned SIRTS as an option but not lately. I must ask him again. The clear liver scan must have been a great moment.  

    Hawaii in Dec sounds devine!!

  • ubcreative
    ubcreative Member Posts: 19

    Welcome to the board, Ursula!

    Definitely not a club anyone wants to join, but now that you're here, hope that we can give you a little support along the way.  I had to drop the Oxy midway thorugh treatment, because the neuropathy was getting so bad.  According to my doc, it accounts for only about a 5% difference in outcome, so I think if your doctor recommends dropping it, it's probably ok to do so.  I have pretty unrelenting nerve damage from it, and wish I would have dropped it sooner.  I also know folks who have had it cut back by 20 or 30%...you could ask your doc about this option, if you really would like to keep it going.  Good luck, and keep us posted on how you're doing!  Ann Alexandria

    Hi Ann Alexandria, thank you

    Hi Ann Alexandria, thank you for your welcome and for the Oxy tips. I'm sorry that you now have to do with nerve damage. 

    I love youpip hoot, that lake looks amazing.  

     

  • ubcreative
    ubcreative Member Posts: 19
    gfpiv said:

    welcome

    Welcome to the club.  The good news is that 8 tx of Oxaliplatin is probably good - from what I've heard, the added shrinkage after tx 8 is usually minimal, and the chance of potentially permanent neuropathy increases exponentially.  Not only that, but with only 8 tx down, there's a decent chance that they can revisit and reintroduce Oxi for another 6 or so tx in a couple years if necessary.  As stage IV currently inoperable, I imagine your next course of treatment will be FOLFIRI (possibly with Avastin).  That can be very effective in shrinking lesions too for some people - though there are of course different side effects to that.  And there's always slightly more novel treatments like sir-spheres, chemoembolization, RFA and HAI that you may consider on the back burner, depending on what's available in Oz.  Either way, best of luck in your treatment.

    -Chip

    Hi Chip, thanks for your

    Hi Chip, thanks for your welcome and for your knowledge.  There is so much to learn on this journey, six months ago I thought that there was only one kind of chemo!!'  It is good to know there are other tools to fight with.  

  • ubcreative
    ubcreative Member Posts: 19
    karguy said:

    Welcome

    I'm sorry you have to be here,but I agree that you should get a second opinion.I had one met on my liver,golf ball size.I did 5fu,folfox,oxy,and avastin.It shurnk the tumor down level with the liver,then I had surgery.I'm glad the chemo is working,that's a good sign.We are here if you have any questions,or just want to vent.I think you should make plans for the future,and live your life like you normally would.Think positive,and don't ever give up.Good luck.

    Thanks karguy.   I will look

    Thanks karguy.   I will look at a second opinion. 

    BTW that car in your pic is awesome.  

  • ubcreative
    ubcreative Member Posts: 19

    Hey

    Hey Ursula, first of all welcome! i am glad that you are getting some good advice and help from here.  I am on the same cocktail as you and it also seems to be working so we can both be excited about that!  the Dr. told me surgery is not possible either because i have so much of my liver covered in tumors.  His thought was because he cant do the surgery on the liver there is no point in putting my body through surgery on the colon because there was still the cancer in the liver. 

    After your 8 rounds of Oxy do you know what the onc will switch you to?  I started out on another drug (cant remember the name right now)  but it didnt do anything for my liver.

    Have fun in vegas and northern cali, it will be very hot and sunny for you i am sure of it :)  take lots of pics to show everyone of us that dont get to go play in the sun right now :)

    zach 

    Hi Zach, thanks for the

    Hi Zach, thanks for the welcome.  I'm glad the "cocktail" is working for you too.  I think the plan after round 8 is to simply drop the Oxy and continue with Xeloda and Avistan. He said if I maintain on that that liver resection will be looked at later in the year, that is only if the 2nd 4 rounds show the same kind of results as the 1st 4.  If not, he said there are option schemes to try but I don't remember him naming one. So many "ifs" on this trip.  How many rounds in are you?

  • Roddy2
    Roddy2 Member Posts: 21

    Hi Zach, thanks for the

    Hi Zach, thanks for the welcome.  I'm glad the "cocktail" is working for you too.  I think the plan after round 8 is to simply drop the Oxy and continue with Xeloda and Avistan. He said if I maintain on that that liver resection will be looked at later in the year, that is only if the 2nd 4 rounds show the same kind of results as the 1st 4.  If not, he said there are option schemes to try but I don't remember him naming one. So many "ifs" on this trip.  How many rounds in are you?

    Welcome to the clan

    Hi Ursula,

    Sorry you have to join us but welcome to the mix. Been through the 8 shots of Oxally and got similar results to you at around 30%. Also similar response from Onc that nothing is operable. Now up to round 21 of Folfox, so will keep persisting and hopefully still getting reductions in size. What part of Oz are you in? I am in sunny Qld.

    cheers and stay well.

    Roddy

  • Beachlace
    Beachlace Member Posts: 37
    Roddy2 said:

    Welcome to the clan

    Hi Ursula,

    Sorry you have to join us but welcome to the mix. Been through the 8 shots of Oxally and got similar results to you at around 30%. Also similar response from Onc that nothing is operable. Now up to round 21 of Folfox, so will keep persisting and hopefully still getting reductions in size. What part of Oz are you in? I am in sunny Qld.

    cheers and stay well.

    Roddy

    Hi Ursula!
     
    Im new here too,

    Hi Ursula!

     

    Im new here too, although I was just diagnosed with sigmoid colon cancer on March 27, underwent surgery on 4/23 and one of 9 lymph nodes were invaded; so stage 3a.  Im having the port put in next week and then will start on oxy once every 3 weeks and xeloda in pill form for 14 days.  I am just beginning my journey.  

     

    Glad you decided to join in!

     

    Kelley

  • ubcreative
    ubcreative Member Posts: 19
    Roddy2 said:

    Welcome to the clan

    Hi Ursula,

    Sorry you have to join us but welcome to the mix. Been through the 8 shots of Oxally and got similar results to you at around 30%. Also similar response from Onc that nothing is operable. Now up to round 21 of Folfox, so will keep persisting and hopefully still getting reductions in size. What part of Oz are you in? I am in sunny Qld.

    cheers and stay well.

    Roddy

    Hi Roddy

    I'm glad you getting good results, keep it up!   Lucky you living in sunny QLD, I'm in not so sunny Melbourne.  

  • ubcreative
    ubcreative Member Posts: 19
    Beachlace said:

    Hi Ursula!
     
    Im new here too,

    Hi Ursula!

     

    Im new here too, although I was just diagnosed with sigmoid colon cancer on March 27, underwent surgery on 4/23 and one of 9 lymph nodes were invaded; so stage 3a.  Im having the port put in next week and then will start on oxy once every 3 weeks and xeloda in pill form for 14 days.  I am just beginning my journey.  

     

    Glad you decided to join in!

     

    Kelley

    Hi Kelley

    Good luck with your treatment next week - and make sure to enjoy your "off" week. Let us know how you go. 

  • Annabelle41415
    Annabelle41415 Member Posts: 6,712 **
    Welcome

    Welcome to the group.  There are many on here that were told they were not candidates for surgery and ended up with it.  The oxy is such a terrible drug and can affect you way beyond after you stop.  Let your doctor know of any side effects you have and especially if they are getting worse.  It sounds like you have a wonderful future planned with all your trips.  It's wonderful that you have planned for that and I'm sure you will enjoy every moment.  You are very lucky to have such a wonderful support system through this journey.  Wishing continued improvement.

    Kim

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900
    welcome ursula

    I am 46 from Sydney and recently had inoperable mets liver, peritoneum and lung. At present I am NED using immunotherapies and holistic medicine and conventional.

    PM me if you are interested. Getting off heavy duty systemic chemo was the best move I took in saving my life. Thats my experience anyway.

    If you are in Sydney there is an excellent colorectal support group at the SAN hospital.

    Hugs,

    Pete