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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.

allisonsnow | @allisonsnow | Dec 3, 2017
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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thanks for your encouragement I also had a Dr./resident that the first time he looked at my file was as he walked into the room so I can connect with your feelings there. I also have insisted on a new oncologist, since my old one left the clinic (loved him) I have gone thru three. I know what I need and won't settle for less. My last appt. I had a sub as my Dr. and wasn't impressed. Research is my middle name especially since I have a very rare cancer, most dr.s don't even know of it, if I wanted to find out everything there was to know and where the best treatment was I had to do it myself. I already knew exactly what research study/trial they used to determine what drugs they tried the first time. Still don't know what I am going to do but I am waiting to hear what my chemo oncologist will say and maybe he and I can discuss in more detail my scans and the radiologists findings. Thanks again for EVERYONES support

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Linda | @llwortman | Dec 3, 2017
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

You are brave and I love your attitude! Keep it up. If more people were like you, it is my feeling we would have better health care across the country.
You deserve a cyber hug
linda

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vsinn2000 | @vsinn2000 | Dec 4, 2017
In reply to @vsinn2000 "Allison, I'm truly sorry that your concerns and questions weren't answered or addressed. Perhaps an appointment..." + (show)
@vsinn2000

Allison,
I'm truly sorry that your concerns and questions weren't answered or addressed. Perhaps an appointment with both doctor and radiologist would give you the information you are looking for in a neutral setting? It sounds as though you are frustrated right now but have been with your doctor for a while. I'm new enough that I am not sure if each hospital has their own set up, or if a care team meeting would be a normal part of the process? I am still meeting all of mine to get treatment started but I believe I will ask if this would be possible if I had concern or an issue like this.
Vicky

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Teresa,
I have simply got to stop looking at the internet. Do you know of anyone who has had this type of radiation? I'm totally panicked by images of internal treatments, speculum being used, I can't do it. I. cannot. Do. this.

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allisonsnow | @allisonsnow | Dec 4, 2017
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

Thank you Teresa knowing there is someone out there that understands REALLY GETS IT! is a comfort. Not that I would wish cancer on anyone but we all do belong to the same club, sometimes we need support and sometimes (if we are lucky) we are able to support others. helping someone get thru a rough day can help to make us feel worthy, to feel needed and sometimes that is all we ask. To everyone out there have a good night (you should be asleep !)

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allisonsnow | @allisonsnow | Dec 4, 2017

that is a good suggestion !!!!

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 4, 2017
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 Allison@allisonsnow

Yes, when we talk (or post) with others who "get it" it really does make a difference, doesn't it? You have helped many people through your posts. That is what makes Mayo Connect so great - we are equally supportive of each other when we need it.

Teresa

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 4, 2017
In reply to @vsinn2000 "Allison, I'm truly sorry that your concerns and questions weren't answered or addressed. Perhaps an appointment..." + (show)
@vsinn2000

Allison,
I'm truly sorry that your concerns and questions weren't answered or addressed. Perhaps an appointment with both doctor and radiologist would give you the information you are looking for in a neutral setting? It sounds as though you are frustrated right now but have been with your doctor for a while. I'm new enough that I am not sure if each hospital has their own set up, or if a care team meeting would be a normal part of the process? I am still meeting all of mine to get treatment started but I believe I will ask if this would be possible if I had concern or an issue like this.
Vicky

Jump to this post

Oh, Vicky, @vsinn2000

I can certainly understand your anxiety and panic. I'm also the type of person who, if I know what to expect, it makes it easier to approach. Anticipation of an unknown event is probably far worse than the experience itself. (Does that help just a little?) Yes, keeping off the internet might be good plan for today.

Unfortunately, I don't know of anyone who has had any experience with this type of cancer or treatment. It is rather like the NETs that I have had - there is little information out there.

With that said, I pray that you will be able to experience some peace. Do you have any anti-anxiety meds to help you through this process tomorrow? Are you expecting any sedation for the procedure?

Keep in touch - I prayed for you first thing this morning when I woke up.

Teresa

REPLY
vsinn2000 | @vsinn2000 | Dec 4, 2017
In reply to @vsinn2000 "Allison, I'm truly sorry that your concerns and questions weren't answered or addressed. Perhaps an appointment..." + (show)
@vsinn2000

Allison,
I'm truly sorry that your concerns and questions weren't answered or addressed. Perhaps an appointment with both doctor and radiologist would give you the information you are looking for in a neutral setting? It sounds as though you are frustrated right now but have been with your doctor for a while. I'm new enough that I am not sure if each hospital has their own set up, or if a care team meeting would be a normal part of the process? I am still meeting all of mine to get treatment started but I believe I will ask if this would be possible if I had concern or an issue like this.
Vicky

Jump to this post

Teresa,
Thank you. It calms me reading your words. I have anti-anxiety meds, I suspect I need something stronger. I don't have a clue what to expect, so that ratchets it up almost beyond control immediately. Unfortunately. And just because Murphys law runs my life, we blew a tire yesterday so my husband is out trying to find a dealership that has my tires in stock. BUT at least we weren't going down the interstate when it went so that's a plus. So my day is already a mess with "the plan" changing from a morning to pack the car and get ready to a morning of chaos. I suppose if we are going to have a lufe changing medical condition we may as well have something we can learn from. I thank you for your morning prayers! They are much appreciated!
Updates later,
Vicky

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 4, 2017
In reply to @vsinn2000 "Allison, I'm truly sorry that your concerns and questions weren't answered or addressed. Perhaps an appointment..." + (show)
@vsinn2000

Allison,
I'm truly sorry that your concerns and questions weren't answered or addressed. Perhaps an appointment with both doctor and radiologist would give you the information you are looking for in a neutral setting? It sounds as though you are frustrated right now but have been with your doctor for a while. I'm new enough that I am not sure if each hospital has their own set up, or if a care team meeting would be a normal part of the process? I am still meeting all of mine to get treatment started but I believe I will ask if this would be possible if I had concern or an issue like this.
Vicky

Jump to this post

@vsinn2000 Yes, this next appointment will soon be over. I am glad that your tire blew before your trip and not during. I guess we have to be thankful for small blessings. 🙂

Teresa

REPLY
shortshot80 | @shortshot80 | Dec 6, 2017
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 ...

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December 6th Shortshot80, haven't beenhere for several days so thought I would catch up. Things have been going good, (tired) but good. There were several Christmas Bazaars held in the area last Saturday. Bob jr droe me around. First one I bought a Cribbage board for Bob sr., and then I found a bunch of hats. Knitted/crochet. All colors, well I found one had that was multi colored. Best siven dollars I've spent in a long time. It will match anything and everything I wear. Anyway I went to chemo yesterday 65 miles) and everyone really liked my hat. Wore it again this morning to primary doc for a change in meds. He liked it to with remark "what a hat!. Last night I did not sleep very good, don't know why but...woke up several times and got up at 4;30 and poured myself a cup of coffee. and a small donut to have with my medicine. Then today was doctor, wash clothes and fold them. Then a nap. Now to fix something for dinner.Busy couple of days. Have a great rest of your day. Nancy

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