Talking Frankly about Living with Advanced Cancer

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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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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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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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

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

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

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

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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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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