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Talking Frankly about Living with Advanced Cancer

Posted by Colleen Young, Connect Director @colleenyoung, Sep 1, 2017

Are you living with advanced cancer (sometimes referred to as stage 4 or metastatic cancer)?
This discussion is a safe space where you can connect with others to talk about the realities of living with limited time. It's not easy to find people who understand what it is like. For many reasons, you may not feel comfortable talking about your thoughts and emotions with friends or family. Perhaps you are alone. Even if you are surrounded by people who support you, you may experience intense loneliness.

Connect is a place where honest conversation can safely take place. You can speak frankly and be heard without judgement. I invite you to share your reality facing death and living now.

Interested in more discussions like this? Go to the Cancer Support Group.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 23, 2018
In reply to @allisonsnow "Just had my mid-way scans for my chemo and am trying to figure out what is..." + (show)
@allisonsnow

Just had my mid-way scans for my chemo and am trying to figure out what is going on. Was told if we saw no improvement they would not suggest the continuation of the gemzar and xeloda. What the scans showed was no shrinkage and many areas had some growth BUT Dr. said to continue chemo treatments. I have to take what he said as truth as he showed me only one scan and sped through the discussion. I was still in some shock and a lot of disappointment to take in all he said. He showed the most enthusiasim when I said I would take part in a study.
When I asked what the next step would be if we still saw no improvement and he said try a different chemo regiment though he didn't know what. I am not a guinea pig for random drugs with no track record !!! I have made it clear I chose quality of life overall. The Dr. seemed to think I was handling side effects very easily which is not the case it just looks that way. I constantly hear how good I look which is nice but people then take for granted I feel good which is far from the truth some of the side effects are quite nasty and I am afraid how long they will take to go away. I present myself well when I do go out and I just don't go put when I can't appear healthy.But anyway the Dr. didn't seem to want to pursue the severity of my side effects and as I said I was in a bit of shock and surprise. Sorry I am not usually so whinny but I am still deciding what to do. Thanks for listening

for those that don't know me ( I haven't been on in a while) I have metsastic Thymoma

Jump to this post

Hello @lean Welcome to Mayo Connect.

I see that you have joined our conversation from Singapore. Your husband is so fortunate to have you advocating for him and helping him find the best treatment available.

I see that you have already met @krishh and I'm sure that others will be joining in the conversation as well. I thought you might be interested in a webinar from Mayo, from a few years ago, about cholangiocarcinoma. Here is the link: https://connect.mayoclinic.org/webinar/what-patients-need-to-know-about-hilar-cholangiocarcinoma-and-liver-transplant/?utm_campaign=search.

Here is another site that discusses a person who received a liver transplant for this same type of cancer, https://connect.mayoclinic.org/newsfeed-post/meet-maikki-a-new-way-of-looking-at-the-world/?utm_campaign=search

Has your husband's surgery and treatments been in Singapore or did you travel elsewhere? Have there been any discussions about the possibility of transplant?

I look forward to hearing from you again and I certainly wish you and your husband well.

Teresa

REPLY
krishh | @krishh | Feb 23, 2018
In reply to @allisonsnow "Just had my mid-way scans for my chemo and am trying to figure out what is..." + (show)
@allisonsnow

Just had my mid-way scans for my chemo and am trying to figure out what is going on. Was told if we saw no improvement they would not suggest the continuation of the gemzar and xeloda. What the scans showed was no shrinkage and many areas had some growth BUT Dr. said to continue chemo treatments. I have to take what he said as truth as he showed me only one scan and sped through the discussion. I was still in some shock and a lot of disappointment to take in all he said. He showed the most enthusiasim when I said I would take part in a study.
When I asked what the next step would be if we still saw no improvement and he said try a different chemo regiment though he didn't know what. I am not a guinea pig for random drugs with no track record !!! I have made it clear I chose quality of life overall. The Dr. seemed to think I was handling side effects very easily which is not the case it just looks that way. I constantly hear how good I look which is nice but people then take for granted I feel good which is far from the truth some of the side effects are quite nasty and I am afraid how long they will take to go away. I present myself well when I do go out and I just don't go put when I can't appear healthy.But anyway the Dr. didn't seem to want to pursue the severity of my side effects and as I said I was in a bit of shock and surprise. Sorry I am not usually so whinny but I am still deciding what to do. Thanks for listening

for those that don't know me ( I haven't been on in a while) I have metsastic Thymoma

Jump to this post

Hi Lean,

I don't think that immunotherapy is off limits to others with cholangiocarcinoma, or they wouldn't have had me tested. My two cents. I just didn't have the right make up for therapy that is available here at Mayo. I may be eligible for other trials, so always worth the testing.

Currently I am getting Abraxane and Gemcitabine. As I understand it, this is "meant" more for colon or pancreatic cancer, but it has been working for me since late fall. I recently have been having some pain issues and yesterday my blood work prior to chemo showed elevated enzyme issues in my liver, so my oncologist ordered scans for this morning, So we will see what is going on, if this line of therapy has quit working, or if the elevated enzymes were just a fluke.

I hope that answers your question. Good luck to you!

Kris

REPLY
lean | @lean | Feb 23, 2018
In reply to @allisonsnow "Just had my mid-way scans for my chemo and am trying to figure out what is..." + (show)
@allisonsnow

Just had my mid-way scans for my chemo and am trying to figure out what is going on. Was told if we saw no improvement they would not suggest the continuation of the gemzar and xeloda. What the scans showed was no shrinkage and many areas had some growth BUT Dr. said to continue chemo treatments. I have to take what he said as truth as he showed me only one scan and sped through the discussion. I was still in some shock and a lot of disappointment to take in all he said. He showed the most enthusiasim when I said I would take part in a study.
When I asked what the next step would be if we still saw no improvement and he said try a different chemo regiment though he didn't know what. I am not a guinea pig for random drugs with no track record !!! I have made it clear I chose quality of life overall. The Dr. seemed to think I was handling side effects very easily which is not the case it just looks that way. I constantly hear how good I look which is nice but people then take for granted I feel good which is far from the truth some of the side effects are quite nasty and I am afraid how long they will take to go away. I present myself well when I do go out and I just don't go put when I can't appear healthy.But anyway the Dr. didn't seem to want to pursue the severity of my side effects and as I said I was in a bit of shock and surprise. Sorry I am not usually so whinny but I am still deciding what to do. Thanks for listening

for those that don't know me ( I haven't been on in a while) I have metsastic Thymoma

Jump to this post

Krishh
Thanks for sharing.
You mentioned above "chemo that is NOT meant for my type of cancer (cholangiocarcinoma or bile duct cancer) and I am doing better than I have for the past year..." Please may I know what chemo drug are you using?

REPLY
lean | @lean | Feb 23, 2018
In reply to @allisonsnow "Just had my mid-way scans for my chemo and am trying to figure out what is..." + (show)
@allisonsnow

Just had my mid-way scans for my chemo and am trying to figure out what is going on. Was told if we saw no improvement they would not suggest the continuation of the gemzar and xeloda. What the scans showed was no shrinkage and many areas had some growth BUT Dr. said to continue chemo treatments. I have to take what he said as truth as he showed me only one scan and sped through the discussion. I was still in some shock and a lot of disappointment to take in all he said. He showed the most enthusiasim when I said I would take part in a study.
When I asked what the next step would be if we still saw no improvement and he said try a different chemo regiment though he didn't know what. I am not a guinea pig for random drugs with no track record !!! I have made it clear I chose quality of life overall. The Dr. seemed to think I was handling side effects very easily which is not the case it just looks that way. I constantly hear how good I look which is nice but people then take for granted I feel good which is far from the truth some of the side effects are quite nasty and I am afraid how long they will take to go away. I present myself well when I do go out and I just don't go put when I can't appear healthy.But anyway the Dr. didn't seem to want to pursue the severity of my side effects and as I said I was in a bit of shock and surprise. Sorry I am not usually so whinny but I am still deciding what to do. Thanks for listening

for those that don't know me ( I haven't been on in a while) I have metsastic Thymoma

Jump to this post

Hi Krishh
I'm Lean from Singapore. My husband has the same type of stage 4 cancer since 2015 Sep. He had whipple operation as the first course of treatment and chemo subsequently using similar drugs like yours after a relapse. I thought Immunotherapy would be the last form of treatment he can try since it has given hopes to so many other types of cancer patients. Why were you rejected for immunotherapy? Did the doctors tell you why? Does it mean immunotherapy can't be applied to all cholangio patients?

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 16, 2018
In reply to @saltis "Hi friends, Everybody tells me that I look fablous & not at all sick. Nobody ever..." + (show)
@saltis

Hi friends,
Everybody tells me that I look fablous & not at all sick. Nobody ever told me that I look fab when it was important & I wasn't sick. 22 years of cancer & now for the last 3 years stage 4 & it has spread to my chest, too. Hopefully I would start my new treatment on Tuesday and by then I hope to be able to breath as before, normally. My new chemo is based on pills Capecitabin, 8 ones everyday in two weeks time & then a rest week & then I would continue two other weeks.
Sometimes I feel that my oncolog is a bit intimated by me and blurbs out words or phrases that are not so diplomatic but he is a human being and my fablousness puts him in disadvantage, lol! Like while treating my lung problem I started to notice that my right breast which was operated and a fourth of it was taken away is losing it's form and now is stuck like a clump on my chest and is a very little thing. Anyway he has never seen anything like it and then he tells me that I have lived quite a long time with my cancers and must expect organ failures in future. I asked him is there anything I can do?
He told me No, just don't expect too much! You mean no biggest lottery Prize? Between us I still feel that I am lucky and I have my family & friends around me. When I can breath I feel lucky & everything would work out for the best somehow.
Take care folk and enjoy your day, night ...

Jump to this post

Nancy, @shortshot80

Yes, you will have a long day - I'll be praying that all goes well for you.

Teresa

REPLY
shortshot80 | @shortshot80 | Jan 15, 2018
In reply to @saltis "Hi friends, Everybody tells me that I look fablous & not at all sick. Nobody ever..." + (show)
@saltis

Hi friends,
Everybody tells me that I look fablous & not at all sick. Nobody ever told me that I look fab when it was important & I wasn't sick. 22 years of cancer & now for the last 3 years stage 4 & it has spread to my chest, too. Hopefully I would start my new treatment on Tuesday and by then I hope to be able to breath as before, normally. My new chemo is based on pills Capecitabin, 8 ones everyday in two weeks time & then a rest week & then I would continue two other weeks.
Sometimes I feel that my oncolog is a bit intimated by me and blurbs out words or phrases that are not so diplomatic but he is a human being and my fablousness puts him in disadvantage, lol! Like while treating my lung problem I started to notice that my right breast which was operated and a fourth of it was taken away is losing it's form and now is stuck like a clump on my chest and is a very little thing. Anyway he has never seen anything like it and then he tells me that I have lived quite a long time with my cancers and must expect organ failures in future. I asked him is there anything I can do?
He told me No, just don't expect too much! You mean no biggest lottery Prize? Between us I still feel that I am lucky and I have my family & friends around me. When I can breath I feel lucky & everything would work out for the best somehow.
Take care folk and enjoy your day, night ...

Jump to this post

Teresa) I had a blood (t2o unites) last Friday.. Saturday was a ok day Yesterday and today was not so good(dizzy, stumbling out of sorts) don't know what is wrong. Had a blood test this morning, ( went to the bathroom, upon leaving the door was hard to push got my cane caught with the door and really hit my right hand on the back of my hand and now have a inch by inch skin tear on the back of my hand. Now yes I will have chemo tomorrow so fare every three weeks...... Makes for a long day. My appt for tomorrow is I have to be 60 miles away for chemo at 9:30 am. However long this takes, also have a kidney doc appt at 2;30l.....makesfor a long day! Nancy (shortshot80)

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 15, 2018
In reply to @saltis "Hi friends, Everybody tells me that I look fablous & not at all sick. Nobody ever..." + (show)
@saltis

Hi friends,
Everybody tells me that I look fablous & not at all sick. Nobody ever told me that I look fab when it was important & I wasn't sick. 22 years of cancer & now for the last 3 years stage 4 & it has spread to my chest, too. Hopefully I would start my new treatment on Tuesday and by then I hope to be able to breath as before, normally. My new chemo is based on pills Capecitabin, 8 ones everyday in two weeks time & then a rest week & then I would continue two other weeks.
Sometimes I feel that my oncolog is a bit intimated by me and blurbs out words or phrases that are not so diplomatic but he is a human being and my fablousness puts him in disadvantage, lol! Like while treating my lung problem I started to notice that my right breast which was operated and a fourth of it was taken away is losing it's form and now is stuck like a clump on my chest and is a very little thing. Anyway he has never seen anything like it and then he tells me that I have lived quite a long time with my cancers and must expect organ failures in future. I asked him is there anything I can do?
He told me No, just don't expect too much! You mean no biggest lottery Prize? Between us I still feel that I am lucky and I have my family & friends around me. When I can breath I feel lucky & everything would work out for the best somehow.
Take care folk and enjoy your day, night ...

Jump to this post

Nancy, @shortshot80

That is such good news about your breathing being better and that your scan showed improvement with your lungs - that is good way to start the new year.

Will you be having a new chemo treatment any time soon?

Teresa

REPLY
shortshot80 | @shortshot80 | Jan 14, 2018
In reply to @saltis "Hi friends, Everybody tells me that I look fablous & not at all sick. Nobody ever..." + (show)
@saltis

Hi friends,
Everybody tells me that I look fablous & not at all sick. Nobody ever told me that I look fab when it was important & I wasn't sick. 22 years of cancer & now for the last 3 years stage 4 & it has spread to my chest, too. Hopefully I would start my new treatment on Tuesday and by then I hope to be able to breath as before, normally. My new chemo is based on pills Capecitabin, 8 ones everyday in two weeks time & then a rest week & then I would continue two other weeks.
Sometimes I feel that my oncolog is a bit intimated by me and blurbs out words or phrases that are not so diplomatic but he is a human being and my fablousness puts him in disadvantage, lol! Like while treating my lung problem I started to notice that my right breast which was operated and a fourth of it was taken away is losing it's form and now is stuck like a clump on my chest and is a very little thing. Anyway he has never seen anything like it and then he tells me that I have lived quite a long time with my cancers and must expect organ failures in future. I asked him is there anything I can do?
He told me No, just don't expect too much! You mean no biggest lottery Prize? Between us I still feel that I am lucky and I have my family & friends around me. When I can breath I feel lucky & everything would work out for the best somehow.
Take care folk and enjoy your day, night ...

Jump to this post

Hi Teresa. a, feeling better than I was this morning. That was my first blood transfusion I have ever had. I felt pretty good yesterday, don't know what happened today, but I am feeling a little better this evening. Thanks for the prayers. By the way, my lungs are better according to the cat scan. I can even breathe better. Nancy

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 14, 2018
In reply to @saltis "Hi friends, Everybody tells me that I look fablous & not at all sick. Nobody ever..." + (show)
@saltis

Hi friends,
Everybody tells me that I look fablous & not at all sick. Nobody ever told me that I look fab when it was important & I wasn't sick. 22 years of cancer & now for the last 3 years stage 4 & it has spread to my chest, too. Hopefully I would start my new treatment on Tuesday and by then I hope to be able to breath as before, normally. My new chemo is based on pills Capecitabin, 8 ones everyday in two weeks time & then a rest week & then I would continue two other weeks.
Sometimes I feel that my oncolog is a bit intimated by me and blurbs out words or phrases that are not so diplomatic but he is a human being and my fablousness puts him in disadvantage, lol! Like while treating my lung problem I started to notice that my right breast which was operated and a fourth of it was taken away is losing it's form and now is stuck like a clump on my chest and is a very little thing. Anyway he has never seen anything like it and then he tells me that I have lived quite a long time with my cancers and must expect organ failures in future. I asked him is there anything I can do?
He told me No, just don't expect too much! You mean no biggest lottery Prize? Between us I still feel that I am lucky and I have my family & friends around me. When I can breath I feel lucky & everything would work out for the best somehow.
Take care folk and enjoy your day, night ...

Jump to this post

Hi Nancy, @shortshot80

I am sorry to hear that you aren't feeling well, Nancy. I hope that you will begin to feel better soon.

Have you had this type of side-effect from transfusions before? Perhaps you need to call your doctor's office and let them know how you are feeling.

Keep us posted on how you are feeling. I'll be praying for you.

Teresa

REPLY
shortshot80 | @shortshot80 | Jan 14, 2018
In reply to @saltis "Hi friends, Everybody tells me that I look fablous & not at all sick. Nobody ever..." + (show)
@saltis

Hi friends,
Everybody tells me that I look fablous & not at all sick. Nobody ever told me that I look fab when it was important & I wasn't sick. 22 years of cancer & now for the last 3 years stage 4 & it has spread to my chest, too. Hopefully I would start my new treatment on Tuesday and by then I hope to be able to breath as before, normally. My new chemo is based on pills Capecitabin, 8 ones everyday in two weeks time & then a rest week & then I would continue two other weeks.
Sometimes I feel that my oncolog is a bit intimated by me and blurbs out words or phrases that are not so diplomatic but he is a human being and my fablousness puts him in disadvantage, lol! Like while treating my lung problem I started to notice that my right breast which was operated and a fourth of it was taken away is losing it's form and now is stuck like a clump on my chest and is a very little thing. Anyway he has never seen anything like it and then he tells me that I have lived quite a long time with my cancers and must expect organ failures in future. I asked him is there anything I can do?
He told me No, just don't expect too much! You mean no biggest lottery Prize? Between us I still feel that I am lucky and I have my family & friends around me. When I can breath I feel lucky & everything would work out for the best somehow.
Take care folk and enjoy your day, night ...

Jump to this post

Teresa I wrote a little bit and the compter put it in the wrong place. It is dated Jan 12 and it put it just below this one Dec 6th. Perhapes you can move it into the January. Nancy

REPLY
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