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Moderator

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.

Profile picture for allisonsnow
allisonsnow | @allisonsnow | Feb 23, 2018

that is a good idea I will give that some thought and check into it.
They have started this new thing with Care Team, you don't get an appt. with a particular Dr. ...you get whoever is available within that team. That didn't wash with me!! I am finally getting used to my oncologist, one who actually knows almost all there is to know about thymic carcinoma/thymoma ,and now after my bad track record they think I should see just anybody???? sometimes not even a Dr.!!!!!!! I was very honest about my opinion a lot of people ,patients and staff, do not care for it. My Dr. said not to worry he would always make sure I saw him and I really appreciate that. So maybe he will be open to a joint meeting or a least a discussion og his findings.

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Profile picture for allisonsnow
allisonsnow | @allisonsnow | 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)
Profile picture for allisonsnow @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

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OH Kris @krishh my thoughts and prayers are with you. I hope you have someone (and faith) to lean on, waiting is the hardest thing I think. Some times even when I get good news I don't act happy ( I know call me a kook) but I think I have so prepared myself for bad news that when it is good I am kind of numb takes a while to sink in.
I hope all you hear is good news.

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Profile picture for lean
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)
Profile picture for allisonsnow @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

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Hi Kris
Our oncologist told us the same thing and has been treating my husband using drugs for colon and pancreas cancer. My husband has had Gemcitabine, Cisplatin and Folfox before. The difficulty now is to search for new drugs that will work on him. He submitted blood sample to the America Foundation Medicine for target testing but no target found and so no drug recommended. He is on Fulfori now. Just stay positive.
All the best to you !

REPLY
Profile picture for lean
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)
Profile picture for allisonsnow @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

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Thanks Teresa. My husband had his surgery and treatments in Singapore. So far there is no major problem with the liver and hence the oncologist didnt mention anything about liver transplant. The locations of the tumours now are the abdomen lining, liver and the ribs. A blood sample was sent to America Foundation Medicine but no target and no drugs found. My husband has used Fulfox before with good response but not this time. He is 3 days into Fulfori with minimal side effects. Hope it works.

REPLY
Profile picture for Teresa, Volunteer Mentor
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)
Profile picture for allisonsnow @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
Profile picture for krishh
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)
Profile picture for allisonsnow @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
Profile picture for lean
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)
Profile picture for allisonsnow @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
Profile picture for lean
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)
Profile picture for allisonsnow @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
Profile picture for Teresa, Volunteer Mentor
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)
Profile picture for saltis @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
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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)
Profile picture for saltis @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)

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