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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.

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

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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?

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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
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

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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
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

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
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 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
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)
@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

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.

REPLY
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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shortshot80 | @shortshot80 | Mar 4, 2018

Teresa, (shortshot80) Hi Teresa, I have been so sick since the last chemo Feb, 6 I think. My face was sow swollen, eyes just slits, could not wear my dentures, eyses so itchiy and not worth a darn. I say my cancer doc last Thursday, be off chemo till the 29th and will have imunetherapy fusion then. Hopefully this will set better. I have also lost weight, been in the hospital for four days, My husband of 90 was in the hospital for 9 days with UTI, and pneomnia. It has been hectic to say the least. And the weatjer has been just awful. Wind, rain, some snow on the beach of Oregon. My vision is bad macular degeneration too. If I make it to the 19th of march I will be 85. Just has been "not fun!. My spelling isn't good today either. Just wanted you to know that most things are not easy any more. Nancy

REPLY
7 replies
Linda | @llwortman | Mar 4, 2018
In reply to @shortshot80 "Teresa, (shortshot80) Hi Teresa, I have been so sick since the last chemo Feb, 6 I..." + (show)
@shortshot80

Teresa, (shortshot80) Hi Teresa, I have been so sick since the last chemo Feb, 6 I think. My face was sow swollen, eyes just slits, could not wear my dentures, eyses so itchiy and not worth a darn. I say my cancer doc last Thursday, be off chemo till the 29th and will have imunetherapy fusion then. Hopefully this will set better. I have also lost weight, been in the hospital for four days, My husband of 90 was in the hospital for 9 days with UTI, and pneomnia. It has been hectic to say the least. And the weatjer has been just awful. Wind, rain, some snow on the beach of Oregon. My vision is bad macular degeneration too. If I make it to the 19th of march I will be 85. Just has been "not fun!. My spelling isn't good today either. Just wanted you to know that most things are not easy any more. Nancy

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Oh my Dearest:Life is not being fair to you or your husband. You have manypeople thinking of you. You both are in my thoughts & prayers.Try to talk to your body about feeling better. Naps help too.
This has been a crazy year for weather everywhere. We drove back from a cool PHX, AZ withtemps low 40F-60F! 
I ran the PHX Marathon 10K race at 6:00am with 40F weather, and flu like symptoms.
Just after the start I had to run to the bushes with the runs! What a year for illness, right?
 Two blocks from the Finish Line I fell down! 
I’ve never done that...and a woman yelled, “Get Up! You can finish this race! Run with me!” So, I did! Happy to finish 11th in my age group! Now I have a new friend! 
It’s all about getting up! I now show off my black, purple and yellow, swollen right eye, that I hit on the pavement when I tripped on the street gas line cap ( silly me)!  It’s become an inspiration to others who feel like they are falling down in life!
So my dear, Know I’m cheering for the moderator n day medicine to do their work for you and your loving husband. Thank you for sharing your journey and staying Connected ! You are so brave!!!hugs & prayerslinda 

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