I had a problem day before yesterday and made it to the PET scan yesterday but then had to go to the hospital afterwards, they thought I had a blockage and I have been having problems intermittent vomiting but the day before yesterday I threw up everything that went down. Tom did not go to work yesterday and no problem getting into a treatment room and getting hooked up to an IV as they thought I needed hydration. Then they gave me a shot of dilaudid??????????? after they asked me my pain level and I said 2 out of 10 (still healing from the hernia surgery and have "traveling" pain from left to right side) (and another shot about 4 1/2 hours later of dilaudid) well 9 hours and a CAT scan later they wanted to admit me? I said why? No blockage showing although they did tell me there are lots of mets in liver and lungs but I already knew that (Will find out exactly about that more on the 22nd) and I had not thrown up once in the 9 hours even after chugging that ucky contrast stuff. So they let me go home. I am taking the nausea pills I had for my chemotherapy to see if I can stop the throwing up myself. Even though I still haven't thrown up again. I think myself its my cancer finally making itself known symptomatically as I also have slight irritation in my lungs, like sitting up and leaning forward or breathing deep.
So laying down again but like I put elsewhere on the forums about the Chilean Miners, Gods hands are every where and I am so thankful for God keeping His hands on the miners and keeping them alive for 7 weeks and for getting them to the earths surface, 26 out of 33 out right now so 7 miners still to come out and 5 rescue workers to be brought out. I can't watch it on TV too much just once in a while as I cry so much watching this and seeing this miracle is too emotional for me although I am so happy for this. So will be back on in a day or so perhaps. I keep you all in my prayers and thoughts (((((((((((((((hugs)))))))))))))))))))))
Thursday, October 14, 2010
Friday, October 8, 2010
My dosages from July 19th, 2010 chemotherapy and my next appointment to see Kristin
It's okay Sheila, I understand what you are trying to say and no it's not harsh. There are just some things each of us has to find answers for and then look within ourselves and make decisions. I appreciate all your words. My two weak points are emotional (Issues from childhood) and pain, I sincerely am terrified of pain.
So Kristin's assistant Nicole called me back and here are the dosages I received on July 19th:
5-FU 800 mgs
Oxaliplatin 200 mgs
leucovorin 400 mgs
Avastin 10 mgs
So is this a high dosage or a regular dosage anyone have any idea?
And again there is a twist. Kristin cannot see me next week anytime in the morning and then will be out of the office, so the first time I can see her is Friday October 22nd at 10:15 am. So I guess I go do the PET scan on Tuesday, call her office on Wednesday to let her know it it done then wait until October 22nd to go in to see her and talk about the PET scan results, treatments, options and I get to worry all this time about what might be going on in my body and what decisions I will make or not make.
Having slight pain in stomach from healing of hernia surgery so going to take a pain pill and watch TV till I conk out, take care everyone (((((((((((((((hugs)))))))))))))
So Kristin's assistant Nicole called me back and here are the dosages I received on July 19th:
5-FU 800 mgs
Oxaliplatin 200 mgs
leucovorin 400 mgs
Avastin 10 mgs
So is this a high dosage or a regular dosage anyone have any idea?
And again there is a twist. Kristin cannot see me next week anytime in the morning and then will be out of the office, so the first time I can see her is Friday October 22nd at 10:15 am. So I guess I go do the PET scan on Tuesday, call her office on Wednesday to let her know it it done then wait until October 22nd to go in to see her and talk about the PET scan results, treatments, options and I get to worry all this time about what might be going on in my body and what decisions I will make or not make.
Having slight pain in stomach from healing of hernia surgery so going to take a pain pill and watch TV till I conk out, take care everyone (((((((((((((((hugs)))))))))))))
Thursday, October 7, 2010
I am NOT a strong person
I understand Sheila but seriously I am not as strong as you all think I am, I am speaking emotionally and mentally here. No I am showing no symptoms of the cancer such as struggling for breath or losing weight or any such thing but I am terrified, absolutely terrified of going into chemotherapy once again and undergo the side effects as I did on July 19 this year. I still have nightmares and I am scared of it. To me quality of life right now is my main concern.
When I was first diagnosed and decided not to do any treatments I had a few bad moments emotionally but once Tom and I found each other we had a wonderful life; No pain or symptoms of the cancer, no emotional or mental problems, Tom and I enjoyed life to the fullest; we went to the movies, we went to the theatre, we went to dinner theatre, we went to the CA fair, we went to the circus, we walked every single day, we went out to dinner, we went to malls and walked, we made love regularly, we swam in the pool, we spent so much time together.
I went in to to see the Oncologist simply to see where things were and how long I might have left, I only started chemotherapy because Tom asked me to as he wanted me with him for a time longer and told me I could stop the chemotherapy when ever I wanted. The first six weeks of chemotherapy were not too horrible, the maintenance of Avastin was not too bad although it gave me high blood pressure, The second six weeks of chemotherapy was a bit worse but the one round of the third chemotherapy (Folfox-6 with Avastin) had me in bed shaking with chills half the time and burning up with fever the other half of the time, diarrhea and incontinence of urine in the bed where I had to lay in it until I could gather the strength to change the sheets that day and hose myself off in the shower, nausea and then wave after wave of throwing up, pain knotting my stomach up and making me cry and scream for my Mother, my Father, screaming "I want to go home" and "Please God, help me" showed me I cannot go through this again.
I have good news though, the director of the Cancer Treatment Center returned a call Tom put in to her. She and Tom talked for some time and she told him I did not ever have to see my Oncologist again, I would only deal with his PA and her assistants (all of whom I love) so I am willing to stay with that Cancer Treatment Center. I know she will have to confer with the Oncologist on my tests, condition, treatments, etc, but I will only have to speak and see and deal with her and her assistants.
I know I sound like a coward and like I am giving up on life but I do understand all the things the woman from the ACS told me and realize they do not apply personally to me and yes like my Oncologist threw up in my face I am perfectly healthy looking, but I am terrified of the side effects of the chemotherapy and I no this is not going to be a popular opinion, but my stage of cancer, my mutation, the damage done to my lungs and liver (which I will find out on Wednesday) the fact that the tumor they found in July 23, 2008 and the fact they were immediately able to find it in my lungs and liver and diagnosis me stage IV tells me I will not live forever and if they had a chemotherapy or treatment that would give me a bit of diarrhea, or a bit of nausea and that is it sure I would do it to stay alive a bit longer but I am as terrified as person facing a speeding car coming towards them of taking the chemotherapy and having the same horrible terrible chemotherapy that reduced me to a thing trying to survive until Tom got home instead of a human being. Also although the Oncologist told me I needed to look at the cancer as a disease like heart disease or diabetes and deal with it from there he also told me that when he said he could "cure" me he meant it in the way of keeping me alive long enough for something else to kill me. With my stage and type and prognosis the chemotherapy is not a "cure" treatment, it is only pallitive care to keep the symptoms of the cancer at bay and buy me a bit more time, how much he could never say and he did tell me once that it's a matter of when I go downhill and pass not if.
I will wait till Wednesday I will wait until I speak to Kristin who will take over my case but unless something can be shown to me that is not going to put me right back in that situation I was in for the time of July 19th and two weeks after I would rather have quality of life than extension of life. I am sorry but I am not strong in that way, tears are streaming down my face right now as many of you have gone far past what I have had to and I feel like such a coward and failure to not be all bright and smiling and say "Oh I will beat this" I know I won't, I know one day I will die and I don't want to die after months of horrible side effects from chemotherapy, I want to die being as I was before I started chemotherapy and having a wonderful time with Tom.
I am sorry I am a disappointment to you Sheila, If as I say Kristin gives me other options I will take them, if not then well we shall see if I get lucky and beat the statistics again (I beat them the first time as I was told I had 6-8 months without treatment and I made it a year and two months without treatment).
I am a lot more relaxed knowing I will not have to deal with Dr. Clune but only with Kristin and I will think more on this and consider your suggestion about asking Kristin if taking more time off would be okay like you said until after the new year, but still in the end it comes down to I am terrified of the side effects of chemotherapy and do not want to subject myself to them if they will not appreciably add to my life expectancy which statistically they won't but I will think about it.
So enough whining about me, again I will let ya'll know what happens on Wednesday then will put my energies into helping others here to build up my inner strength of emotion and mentality and go from there.I understand Sheila but seriously I am not as strong as you all think I am, I am speaking emotionally and mentally here. No I am showing no symptoms of the cancer such as struggling for breath or losing weight or any such thing but I am terrified, absolutely terrified of going into chemotherapy once again and undergo the side effects as I did on July 19 this year. I still have nightmares and I am scared of it. To me quality of life right now is my main concern.
When I was first diagnosed and decided not to do any treatments I had a few bad moments emotionally but once Tom and I found each other we had a wonderful life; No pain or symptoms of the cancer, no emotional or mental problems, Tom and I enjoyed life to the fullest; we went to the movies, we went to the theatre, we went to dinner theatre, we went to the CA fair, we went to the circus, we walked every single day, we went out to dinner, we went to malls and walked, we made love regularly, we swam in the pool, we spent so much time together.
I went in to to see the Oncologist simply to see where things were and how long I might have left, I only started chemotherapy because Tom asked me to as he wanted me with him for a time longer and told me I could stop the chemotherapy when ever I wanted. The first six weeks of chemotherapy were not too horrible, the maintenance of Avastin was not too bad although it gave me high blood pressure, The second six weeks of chemotherapy was a bit worse but the one round of the third chemotherapy (Folfox-6 with Avastin) had me in bed shaking with chills half the time and burning up with fever the other half of the time, diarrhea and incontinence of urine in the bed where I had to lay in it until I could gather the strength to change the sheets that day and hose myself off in the shower, nausea and then wave after wave of throwing up, pain knotting my stomach up and making me cry and scream for my Mother, my Father, screaming "I want to go home" and "Please God, help me" showed me I cannot go through this again.
I have good news though, the director of the Cancer Treatment Center returned a call Tom put in to her. She and Tom talked for some time and she told him I did not ever have to see my Oncologist again, I would only deal with his PA and her assistants (all of whom I love) so I am willing to stay with that Cancer Treatment Center. I know she will have to confer with the Oncologist on my tests, condition, treatments, etc, but I will only have to speak and see and deal with her and her assistants.
I know I sound like a coward and like I am giving up on life but I do understand all the things the woman from the ACS told me and realize they do not apply personally to me and yes like my Oncologist threw up in my face I am perfectly healthy looking, but I am terrified of the side effects of the chemotherapy and I no this is not going to be a popular opinion, but my stage of cancer, my mutation, the damage done to my lungs and liver (which I will find out on Wednesday) the fact that the tumor they found in July 23, 2008 and the fact they were immediately able to find it in my lungs and liver and diagnosis me stage IV tells me I will not live forever and if they had a chemotherapy or treatment that would give me a bit of diarrhea, or a bit of nausea and that is it sure I would do it to stay alive a bit longer but I am as terrified as person facing a speeding car coming towards them of taking the chemotherapy and having the same horrible terrible chemotherapy that reduced me to a thing trying to survive until Tom got home instead of a human being. The statistics given to me by the ACS were from 2005 to 2009. Also although the Oncologist told me I needed to look at the cancer as a disease like heart disease or diabetes and deal with it from there he also told me that when he said he could "cure" me he meant it in the way of keeping me alive long enough for something else to kill me. With my stage and type and prognosis the chemotherapy is not a "cure" treatment, it is only palliative care to keep the symptoms of the cancer at bay and buy me a bit more time, how much he could never say and he did tell me once that it's a matter of when I go downhill and pass not if.
I will wait till Wednesday I will wait until I speak to Kristin who will take over my case but unless something can be shown to me that is not going to put me right back in that situation I was in for the time of July 19th and two weeks after I would rather have quality of life than extension of life. I am sorry but I am not strong in that way, tears are streaming down my face right now as many of you have gone far past what I have had to and I feel like such a coward and failure to not be all bright and smiling and say "Oh I will beat this" I know I won't, I know one day I will die and I don't want to die after months of horrible side effects from chemotherapy, I want to die being as I was before I started chemotherapy and having a wonderful time with Tom.
I am sorry I am a disappointment to you Sheila, If as I say Kristin gives me other options I will take them, if not then well we shall see if I get lucky and beat the statistics again (I beat them the first time as I was told I had 6-8 months without treatment and I made it a year and two months without treatment). I am a lot more relaxed knowing I will not have to deal with Dr. Clune but only with Kristin and I will think more on this and consider your suggestion about asking Kristin if taking more time off would be okay like you said until after the new year, but still in the end it comes down to I am terrified of the side effects of chemotherapy and do not want to subject myself to them if they will not appreciably add to my life expectancy which statistically they won't but I will think about it.
So enough whining about me, again I will let ya'll know what happens on Wednesday then will put my energies into helping others here to build up my inner strength of emotion and mentality and go from there.
When I was first diagnosed and decided not to do any treatments I had a few bad moments emotionally but once Tom and I found each other we had a wonderful life; No pain or symptoms of the cancer, no emotional or mental problems, Tom and I enjoyed life to the fullest; we went to the movies, we went to the theatre, we went to dinner theatre, we went to the CA fair, we went to the circus, we walked every single day, we went out to dinner, we went to malls and walked, we made love regularly, we swam in the pool, we spent so much time together.
I went in to to see the Oncologist simply to see where things were and how long I might have left, I only started chemotherapy because Tom asked me to as he wanted me with him for a time longer and told me I could stop the chemotherapy when ever I wanted. The first six weeks of chemotherapy were not too horrible, the maintenance of Avastin was not too bad although it gave me high blood pressure, The second six weeks of chemotherapy was a bit worse but the one round of the third chemotherapy (Folfox-6 with Avastin) had me in bed shaking with chills half the time and burning up with fever the other half of the time, diarrhea and incontinence of urine in the bed where I had to lay in it until I could gather the strength to change the sheets that day and hose myself off in the shower, nausea and then wave after wave of throwing up, pain knotting my stomach up and making me cry and scream for my Mother, my Father, screaming "I want to go home" and "Please God, help me" showed me I cannot go through this again.
I have good news though, the director of the Cancer Treatment Center returned a call Tom put in to her. She and Tom talked for some time and she told him I did not ever have to see my Oncologist again, I would only deal with his PA and her assistants (all of whom I love) so I am willing to stay with that Cancer Treatment Center. I know she will have to confer with the Oncologist on my tests, condition, treatments, etc, but I will only have to speak and see and deal with her and her assistants.
I know I sound like a coward and like I am giving up on life but I do understand all the things the woman from the ACS told me and realize they do not apply personally to me and yes like my Oncologist threw up in my face I am perfectly healthy looking, but I am terrified of the side effects of the chemotherapy and I no this is not going to be a popular opinion, but my stage of cancer, my mutation, the damage done to my lungs and liver (which I will find out on Wednesday) the fact that the tumor they found in July 23, 2008 and the fact they were immediately able to find it in my lungs and liver and diagnosis me stage IV tells me I will not live forever and if they had a chemotherapy or treatment that would give me a bit of diarrhea, or a bit of nausea and that is it sure I would do it to stay alive a bit longer but I am as terrified as person facing a speeding car coming towards them of taking the chemotherapy and having the same horrible terrible chemotherapy that reduced me to a thing trying to survive until Tom got home instead of a human being. Also although the Oncologist told me I needed to look at the cancer as a disease like heart disease or diabetes and deal with it from there he also told me that when he said he could "cure" me he meant it in the way of keeping me alive long enough for something else to kill me. With my stage and type and prognosis the chemotherapy is not a "cure" treatment, it is only pallitive care to keep the symptoms of the cancer at bay and buy me a bit more time, how much he could never say and he did tell me once that it's a matter of when I go downhill and pass not if.
I will wait till Wednesday I will wait until I speak to Kristin who will take over my case but unless something can be shown to me that is not going to put me right back in that situation I was in for the time of July 19th and two weeks after I would rather have quality of life than extension of life. I am sorry but I am not strong in that way, tears are streaming down my face right now as many of you have gone far past what I have had to and I feel like such a coward and failure to not be all bright and smiling and say "Oh I will beat this" I know I won't, I know one day I will die and I don't want to die after months of horrible side effects from chemotherapy, I want to die being as I was before I started chemotherapy and having a wonderful time with Tom.
I am sorry I am a disappointment to you Sheila, If as I say Kristin gives me other options I will take them, if not then well we shall see if I get lucky and beat the statistics again (I beat them the first time as I was told I had 6-8 months without treatment and I made it a year and two months without treatment).
I am a lot more relaxed knowing I will not have to deal with Dr. Clune but only with Kristin and I will think more on this and consider your suggestion about asking Kristin if taking more time off would be okay like you said until after the new year, but still in the end it comes down to I am terrified of the side effects of chemotherapy and do not want to subject myself to them if they will not appreciably add to my life expectancy which statistically they won't but I will think about it.
So enough whining about me, again I will let ya'll know what happens on Wednesday then will put my energies into helping others here to build up my inner strength of emotion and mentality and go from there.I understand Sheila but seriously I am not as strong as you all think I am, I am speaking emotionally and mentally here. No I am showing no symptoms of the cancer such as struggling for breath or losing weight or any such thing but I am terrified, absolutely terrified of going into chemotherapy once again and undergo the side effects as I did on July 19 this year. I still have nightmares and I am scared of it. To me quality of life right now is my main concern.
When I was first diagnosed and decided not to do any treatments I had a few bad moments emotionally but once Tom and I found each other we had a wonderful life; No pain or symptoms of the cancer, no emotional or mental problems, Tom and I enjoyed life to the fullest; we went to the movies, we went to the theatre, we went to dinner theatre, we went to the CA fair, we went to the circus, we walked every single day, we went out to dinner, we went to malls and walked, we made love regularly, we swam in the pool, we spent so much time together.
I went in to to see the Oncologist simply to see where things were and how long I might have left, I only started chemotherapy because Tom asked me to as he wanted me with him for a time longer and told me I could stop the chemotherapy when ever I wanted. The first six weeks of chemotherapy were not too horrible, the maintenance of Avastin was not too bad although it gave me high blood pressure, The second six weeks of chemotherapy was a bit worse but the one round of the third chemotherapy (Folfox-6 with Avastin) had me in bed shaking with chills half the time and burning up with fever the other half of the time, diarrhea and incontinence of urine in the bed where I had to lay in it until I could gather the strength to change the sheets that day and hose myself off in the shower, nausea and then wave after wave of throwing up, pain knotting my stomach up and making me cry and scream for my Mother, my Father, screaming "I want to go home" and "Please God, help me" showed me I cannot go through this again.
I have good news though, the director of the Cancer Treatment Center returned a call Tom put in to her. She and Tom talked for some time and she told him I did not ever have to see my Oncologist again, I would only deal with his PA and her assistants (all of whom I love) so I am willing to stay with that Cancer Treatment Center. I know she will have to confer with the Oncologist on my tests, condition, treatments, etc, but I will only have to speak and see and deal with her and her assistants.
I know I sound like a coward and like I am giving up on life but I do understand all the things the woman from the ACS told me and realize they do not apply personally to me and yes like my Oncologist threw up in my face I am perfectly healthy looking, but I am terrified of the side effects of the chemotherapy and I no this is not going to be a popular opinion, but my stage of cancer, my mutation, the damage done to my lungs and liver (which I will find out on Wednesday) the fact that the tumor they found in July 23, 2008 and the fact they were immediately able to find it in my lungs and liver and diagnosis me stage IV tells me I will not live forever and if they had a chemotherapy or treatment that would give me a bit of diarrhea, or a bit of nausea and that is it sure I would do it to stay alive a bit longer but I am as terrified as person facing a speeding car coming towards them of taking the chemotherapy and having the same horrible terrible chemotherapy that reduced me to a thing trying to survive until Tom got home instead of a human being. The statistics given to me by the ACS were from 2005 to 2009. Also although the Oncologist told me I needed to look at the cancer as a disease like heart disease or diabetes and deal with it from there he also told me that when he said he could "cure" me he meant it in the way of keeping me alive long enough for something else to kill me. With my stage and type and prognosis the chemotherapy is not a "cure" treatment, it is only palliative care to keep the symptoms of the cancer at bay and buy me a bit more time, how much he could never say and he did tell me once that it's a matter of when I go downhill and pass not if.
I will wait till Wednesday I will wait until I speak to Kristin who will take over my case but unless something can be shown to me that is not going to put me right back in that situation I was in for the time of July 19th and two weeks after I would rather have quality of life than extension of life. I am sorry but I am not strong in that way, tears are streaming down my face right now as many of you have gone far past what I have had to and I feel like such a coward and failure to not be all bright and smiling and say "Oh I will beat this" I know I won't, I know one day I will die and I don't want to die after months of horrible side effects from chemotherapy, I want to die being as I was before I started chemotherapy and having a wonderful time with Tom.
I am sorry I am a disappointment to you Sheila, If as I say Kristin gives me other options I will take them, if not then well we shall see if I get lucky and beat the statistics again (I beat them the first time as I was told I had 6-8 months without treatment and I made it a year and two months without treatment). I am a lot more relaxed knowing I will not have to deal with Dr. Clune but only with Kristin and I will think more on this and consider your suggestion about asking Kristin if taking more time off would be okay like you said until after the new year, but still in the end it comes down to I am terrified of the side effects of chemotherapy and do not want to subject myself to them if they will not appreciably add to my life expectancy which statistically they won't but I will think about it.
So enough whining about me, again I will let ya'll know what happens on Wednesday then will put my energies into helping others here to build up my inner strength of emotion and mentality and go from there.
Another update
EDITING TO UPDATE:
I called 9 different Oncologists today to try and get an appointment to see them to change Oncologists and had to leave messages at all of them and no calls back as of yet.
On another hand I called the American Cancer Society early this morning when I woke up (5:30am I seem to be having trouble sleeping, or rather I can fall to sleep constantly but wake up anywhere between 2 and 6am and cannot go back to sleep).
I was transferred to a wonderful woman whom I was able to articulate the question I was asking of my Oncologist. She said she would spend time researching and get back to me. At 6pm this evening she called me back. She had been assigned my case and spent all day researching every medical journal and paper and this is what she told me.
In a case such as mine depending indeed on if there was further damage done to lungs and liver from me being off of chemotherapy for the amount of time I was the consensous is that if I decide not to do any chemotherapy the "general" statistic is eight months, this of course is if I am being treated for the symptoms of the cancer when they show up (i.e. Jaundice, lung pain, ascites, etc) and the "general" statistic if I go back on Folfox 6 with Avasin is 11.7 months.
She made sure to tell me these are not exact time lines but are general timelines from many medical journals, clinical trials and medical papers, I could go further or could have less time. With these statistics I do not feel chemotherapy will benefit me as in my quality of life and unless can be given any other information by another Oncologist or another type of treatment I have decided not to do any treatment.
Tom of course said nothing beyond "It's up to you". Even as I am dealing with this even harder than when I was first diagnosed and had to make the decision on treatment or not.
So will update Wednesday after Tom calls the Oncologist to get the results of the PET scan on Tuesday.
God bless you all and Keith I am going to try to call you I hope it is not to late.
I called 9 different Oncologists today to try and get an appointment to see them to change Oncologists and had to leave messages at all of them and no calls back as of yet.
On another hand I called the American Cancer Society early this morning when I woke up (5:30am I seem to be having trouble sleeping, or rather I can fall to sleep constantly but wake up anywhere between 2 and 6am and cannot go back to sleep).
I was transferred to a wonderful woman whom I was able to articulate the question I was asking of my Oncologist. She said she would spend time researching and get back to me. At 6pm this evening she called me back. She had been assigned my case and spent all day researching every medical journal and paper and this is what she told me.
In a case such as mine depending indeed on if there was further damage done to lungs and liver from me being off of chemotherapy for the amount of time I was the consensous is that if I decide not to do any chemotherapy the "general" statistic is eight months, this of course is if I am being treated for the symptoms of the cancer when they show up (i.e. Jaundice, lung pain, ascites, etc) and the "general" statistic if I go back on Folfox 6 with Avasin is 11.7 months.
She made sure to tell me these are not exact time lines but are general timelines from many medical journals, clinical trials and medical papers, I could go further or could have less time. With these statistics I do not feel chemotherapy will benefit me as in my quality of life and unless can be given any other information by another Oncologist or another type of treatment I have decided not to do any treatment.
Tom of course said nothing beyond "It's up to you". Even as I am dealing with this even harder than when I was first diagnosed and had to make the decision on treatment or not.
So will update Wednesday after Tom calls the Oncologist to get the results of the PET scan on Tuesday.
God bless you all and Keith I am going to try to call you I hope it is not to late.
Wednesday, October 6, 2010
I sent this to the Practice Administrator at the Oncology Medical Group who is over my Oncologist
just thought you might be interested in my blog over the past year dealing with Dr. Clune and also my latest posting on the colon cancer forum I belong to.
Tom (My boyfriend) will be calling you tomorrow as from now on I don't have anything to say to anyone at the cancer treatment center and Tom is my patient advocate and will speak to you, Dr, Clune, Amy, etc for me and I will go along with any decisions Tom thinks is best for me.
I am also calling the American Cancer Society and the American Medical Association regarding Dr. Clune. Simply to ask a few questions.
Here is my blog:
http://coloncancerstageiv.blogspot.com/
Here is the latest posting on the colon cancer forum:
I called my Oncologist's office today and spoke to both the other Oncologists Assistants, they said they would speak to the Oncologist's and get back to me, not three minutes after I hung up with the second one, Amy, my Oncologist's Assistant called me and said that in that office they did not allow switching of Dr's inside the same office and no Oncologist would be able to tell me what I wanted to hear.
Tom and I were out and I broke down. It seems Tuesday I will go to get my PET scan then Wednesday I am to CALL my Oncologist and get the results over the phone (Now I have not had chemotherapy or any treatment since July 19th so I cannot see how the results of the PET scan will be anything but worse than they were and yet he will only do a PHONE consultation to tell me the news? He won't have me come into his office to explain it to me?????? How can that be?) then he won't see me for I guess another six weeks unless I do chemotherapy. I don't know how to make a decision to do chemotherapy without some help from my Oncologist but I won't get any so I guess I just will not do chemotherapy as I originally planned no matter if the cancer is standing still or has gotten worse as I just cannot take those side effects anymore, at least not without some input from my Oncologist on if say I might have a year left and the chemotherapy might give me three more months, well then I would not do it as I could not bear the quality of life with the chemotherapy but if I had a year left and the chemotherapy might give me six months or a year more than I would talk to Tom about it and decide. But how can I decide when I don't have any facts or statistics or help to decide?
So as of right now "IF" we go back in to see the Oncologist I see right now at any time Tom will have to talk to him as I will not say word one to Him and if my Oncologist will not help me in giving me the facts on both the benefits or disadvantages of doing chemotherapy right now then I will simply not do treatment. As my Oncologist said to me Monday, "You still look healthy" so I am not going to die right away and I don't know what else to do but heal from the hernia treatment then live life to the fullest and enjoy life as I did before I started going to this Oncologist and started chemotherapy.
To tell you the truth my Oncologist has me so scared that no other Oncologist will help me in the way I am asking for help, (He and His assistant both keep saying over and over again no Oncolgist will tell me how long I have or what the chances of survival are or anything close to my question) that when I even think about calling to make an appointment for another Oncologist or having to go see one and go through this whole thing again I break down and cry for about an hour before I can get myself under control. I guess I will just wait and see what my results of my Pet Scan are, figure out for myself how much longer I have then never see another Dr. again until I get to the end of my life when I have to be put on hospice.
It's my fault for not listening to my instincts when I first walked into this Oncologist's office and for being wishy washy about seeing another one during this time and now I am paying the price.
Total hysterectomy July 23 2008, mass in colon.
Colonoscopy Aug 2008
Rigid Sigmoidoscopy with a laparoscopic-assisted partial colectemy with enbloc small bowel resection Sep 2008
Diagnosed: Stage IV Colon Cancer mets to lungs and liver. (T3,N2,M1,G2) KRAS Mutation
Started chemotherapy: 09/14/09 Folfox-6/Avastin then Camptosar/Avastin & last Folfox-6/Avastin
July 24, 2010: Decided to stop chemotherapy
Next PET scan: Sep/Oct
Most recent CEA Level: 08/16/10: 284.8 up from 08/02/10: 163.7
Tom (My boyfriend) will be calling you tomorrow as from now on I don't have anything to say to anyone at the cancer treatment center and Tom is my patient advocate and will speak to you, Dr, Clune, Amy, etc for me and I will go along with any decisions Tom thinks is best for me.
I am also calling the American Cancer Society and the American Medical Association regarding Dr. Clune. Simply to ask a few questions.
Here is my blog:
http://coloncancerstageiv.blogspot.com/
Here is the latest posting on the colon cancer forum:
I called my Oncologist's office today and spoke to both the other Oncologists Assistants, they said they would speak to the Oncologist's and get back to me, not three minutes after I hung up with the second one, Amy, my Oncologist's Assistant called me and said that in that office they did not allow switching of Dr's inside the same office and no Oncologist would be able to tell me what I wanted to hear.
Tom and I were out and I broke down. It seems Tuesday I will go to get my PET scan then Wednesday I am to CALL my Oncologist and get the results over the phone (Now I have not had chemotherapy or any treatment since July 19th so I cannot see how the results of the PET scan will be anything but worse than they were and yet he will only do a PHONE consultation to tell me the news? He won't have me come into his office to explain it to me?????? How can that be?) then he won't see me for I guess another six weeks unless I do chemotherapy. I don't know how to make a decision to do chemotherapy without some help from my Oncologist but I won't get any so I guess I just will not do chemotherapy as I originally planned no matter if the cancer is standing still or has gotten worse as I just cannot take those side effects anymore, at least not without some input from my Oncologist on if say I might have a year left and the chemotherapy might give me three more months, well then I would not do it as I could not bear the quality of life with the chemotherapy but if I had a year left and the chemotherapy might give me six months or a year more than I would talk to Tom about it and decide. But how can I decide when I don't have any facts or statistics or help to decide?
So as of right now "IF" we go back in to see the Oncologist I see right now at any time Tom will have to talk to him as I will not say word one to Him and if my Oncologist will not help me in giving me the facts on both the benefits or disadvantages of doing chemotherapy right now then I will simply not do treatment. As my Oncologist said to me Monday, "You still look healthy" so I am not going to die right away and I don't know what else to do but heal from the hernia treatment then live life to the fullest and enjoy life as I did before I started going to this Oncologist and started chemotherapy.
To tell you the truth my Oncologist has me so scared that no other Oncologist will help me in the way I am asking for help, (He and His assistant both keep saying over and over again no Oncolgist will tell me how long I have or what the chances of survival are or anything close to my question) that when I even think about calling to make an appointment for another Oncologist or having to go see one and go through this whole thing again I break down and cry for about an hour before I can get myself under control. I guess I will just wait and see what my results of my Pet Scan are, figure out for myself how much longer I have then never see another Dr. again until I get to the end of my life when I have to be put on hospice.
It's my fault for not listening to my instincts when I first walked into this Oncologist's office and for being wishy washy about seeing another one during this time and now I am paying the price.
Total hysterectomy July 23 2008, mass in colon.
Colonoscopy Aug 2008
Rigid Sigmoidoscopy with a laparoscopic-assisted partial colectemy with enbloc small bowel resection Sep 2008
Diagnosed: Stage IV Colon Cancer mets to lungs and liver. (T3,N2,M1,G2) KRAS Mutation
Started chemotherapy: 09/14/09 Folfox-6/Avastin then Camptosar/Avastin & last Folfox-6/Avastin
July 24, 2010: Decided to stop chemotherapy
Next PET scan: Sep/Oct
Most recent CEA Level: 08/16/10: 284.8 up from 08/02/10: 163.7
Update on hernia repair healing and Oncologist visit
My surgeon is very very pleased with the way everything is healing and says within two weeks I should be past any of the danger points and hopefully past the few pain points I have now. I have a wonderful circular pattern of now closed holes on my stomach where she laparoscopically closed the hernia after pushing everything back where it needed to be then sutured the mesh to the flesh to close the hole (The hernia was pretty damn big!) and I once more have a flat stomach (grins). I don't have to go back to see her for any more checkups or anything unless I get worried about something, feel changes in the area or have pain past the next two weeks. I love my Surgeon.
On the other hand I hate my Oncologist, I hate my Oncologist, I hate my Oncologist.
Why you ask? Short and to the point, because he has no human compassion and refuses to listen to a word I say or take under consideration my requests of him.
He has ordered a PET scan to see how much more damage has been done by the cancer since I have not had chemotherapy since July 19th and I asked him if the damage is not too severe that I will still be able to do chemotherapy could he at the time of the PET scan (Oh he had my chest X-ray done from before my hernia surgery but refused to tell me anything about it) if he could give me a time line if I did not do chemotherapy versus if I did do chemotherapy on life expectancy so "I" can make an informed choice if "I" feel the time gained by more chemotherapy would outweigh the likely hood of highly increased side effects judging from July 19th's chemotherapy versus quality of life if I don't do chemotherapy.
He flat out told me no, then proceeded to give me a lecture about I should be happy each and every day and smile and not think about when I start going downhill as "HE" will tell me about 3-4 months before I die. He said "You look fine now and the clincal trial (the same one he has been dangling in front of me like a carrot for a year now and is STILL on FDA clinical lockdown) will be open in January (There is no way he can know this so he's a liar) and we will get you started on it then.
There are so many things this many lies about or won't help ease my mind about or just give me the damn truth about it makes me go into panic attacks. I told Tom from now on HE can talk to the Oncologist as I have nothing more to say to the man.
Anyways we went back and forth in a hollering match until I was again in tears and total panic attack and am basically living off valium to keep from losing my mind at this point as I don't know what to do now. Oh and he told me I was not his only patient and so he could not spend all the time talking with me that I demand when I see him? My fricking insurance companies pay him $200 for each office visit and he wants to brush me off with five minutes and a "do as I tell you with no questions attitude".
Tom totally does not understand my feelings about all this and I told him like I said before, "From now on when we go to see the Oncologist you talk to him and you make the decisions and when he screws up like he did when he forgot I had the KRAS mutation and wanted to put me on Vecibix, it's on your head when you decide we go ahead and do it and I suffer the side effects for nothing."
Anyways I hope ya'll are having a better time of it. You are all in my thoughts and prayers and I will come into the forum sometime this week to try and help others and take my mind off my own thoughts. Oh and I see a MSW every friday for therapy, she comes to my house so hopefully this will help with my panic and anxiety attacks.
On the other hand I hate my Oncologist, I hate my Oncologist, I hate my Oncologist.
Why you ask? Short and to the point, because he has no human compassion and refuses to listen to a word I say or take under consideration my requests of him.
He has ordered a PET scan to see how much more damage has been done by the cancer since I have not had chemotherapy since July 19th and I asked him if the damage is not too severe that I will still be able to do chemotherapy could he at the time of the PET scan (Oh he had my chest X-ray done from before my hernia surgery but refused to tell me anything about it) if he could give me a time line if I did not do chemotherapy versus if I did do chemotherapy on life expectancy so "I" can make an informed choice if "I" feel the time gained by more chemotherapy would outweigh the likely hood of highly increased side effects judging from July 19th's chemotherapy versus quality of life if I don't do chemotherapy.
He flat out told me no, then proceeded to give me a lecture about I should be happy each and every day and smile and not think about when I start going downhill as "HE" will tell me about 3-4 months before I die. He said "You look fine now and the clincal trial (the same one he has been dangling in front of me like a carrot for a year now and is STILL on FDA clinical lockdown) will be open in January (There is no way he can know this so he's a liar) and we will get you started on it then.
There are so many things this many lies about or won't help ease my mind about or just give me the damn truth about it makes me go into panic attacks. I told Tom from now on HE can talk to the Oncologist as I have nothing more to say to the man.
Anyways we went back and forth in a hollering match until I was again in tears and total panic attack and am basically living off valium to keep from losing my mind at this point as I don't know what to do now. Oh and he told me I was not his only patient and so he could not spend all the time talking with me that I demand when I see him? My fricking insurance companies pay him $200 for each office visit and he wants to brush me off with five minutes and a "do as I tell you with no questions attitude".
Tom totally does not understand my feelings about all this and I told him like I said before, "From now on when we go to see the Oncologist you talk to him and you make the decisions and when he screws up like he did when he forgot I had the KRAS mutation and wanted to put me on Vecibix, it's on your head when you decide we go ahead and do it and I suffer the side effects for nothing."
Anyways I hope ya'll are having a better time of it. You are all in my thoughts and prayers and I will come into the forum sometime this week to try and help others and take my mind off my own thoughts. Oh and I see a MSW every friday for therapy, she comes to my house so hopefully this will help with my panic and anxiety attacks.
Sunday, October 3, 2010
Starting to feel better
Am starting to feel better but today and tomorrow are Tom's days off so will post Tuesday after he goes back to work and with what happens Monday at the Surgeons for my check up and at my Oncologist to see where we go from here.
Love,
Marsha
Love,
Marsha
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