Dr. Axel Grothey from Mayo Clinic, February 3rd, 8 PM EST
· February 3, 2010-
Dr. Axel Grothey-Professor of Oncology; Medical Oncology, Mayo Clinic
· Topic-“Update from American Society of Clinical Oncology (ASCO) GI Meeting January 2010
-----------and Your Questions to Challenge the Professor”
·
In order to smoothly facilitate the chat, please submit your questions by February 1st, to guestspeaker@ccalliance.org. Dr. Grothey will answer as many questions as possible and encourages you to submit all questions that you have.
Please join Patient Support Manager and Caregiver, Jeannie Moore, Patient Advocate Nancy Butterfield and me as we explore this important topic with Dr. Grothey.
Thank you for your support, hope to see you in the chat room.
Laura D. Porter, MD
Stage IV Survivor and Patient Advocate Consultant
lporter@ccalliance.org
Comments
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Small World!Patteee said:whoa- this was my oncologist
whoa- this was my oncologist at Mayo- just called in for the consult after surgery - he is the one who staged my cancer and gave me the necessary steps to move forward in the journey.
Small World! I guess you will be tuning in to this chat!0 -
Husband stage iv--axel grothey our docPatteee said:whoa- this was my oncologist
whoa- this was my oncologist at Mayo- just called in for the consult after surgery - he is the one who staged my cancer and gave me the necessary steps to move forward in the journey.
Wondered what you think of him. We are very excited to have him on our team! He is so compassionate and encouraging. Treatment is going very well for my husband and he has responded very well to treatment. Hasn't missed any work and has been taking chemo for almost 7 months now. mets to liver, one in the lung that is almost gone, and one on the pelvic bone. all have shrunk considerably! Very scary stuff and always waiting for the other shoe to drop. how are you doing?0 -
I thought he was wonderful-judybauer said:Husband stage iv--axel grothey our doc
Wondered what you think of him. We are very excited to have him on our team! He is so compassionate and encouraging. Treatment is going very well for my husband and he has responded very well to treatment. Hasn't missed any work and has been taking chemo for almost 7 months now. mets to liver, one in the lung that is almost gone, and one on the pelvic bone. all have shrunk considerably! Very scary stuff and always waiting for the other shoe to drop. how are you doing?
I thought he was wonderful- not a frown or a bad word about any staff, doc or care that I got at Mayo. I am doing well. I got all my primary chemo care in Minneapolis, 3 surgeries at Mayo and some follow up care. I am 23 months NED (no evidence of disease) and am looking forward to a glorious spring and summer
0 -
OMG! NED for 23Patteee said:I thought he was wonderful-
I thought he was wonderful- not a frown or a bad word about any staff, doc or care that I got at Mayo. I am doing well. I got all my primary chemo care in Minneapolis, 3 surgeries at Mayo and some follow up care. I am 23 months NED (no evidence of disease) and am looking forward to a glorious spring and summer
OMG! NED for 23 months---that is wonderful, hopefully that will happen with my husband. He has never had surgery. That's the funny thing about his. His colon is clean. They told us sometimes the primary tumor dies off and they don't know why but it has already spread it's seeds. So surgery was not an option---at least for now. Dr. Grothey gives us such hope. We know there is not cure but hopefully manageable. Have heard they are very close to treating it as a chronic disease. Have you heard this?0 -
By the way what stage werePatteee said:I thought he was wonderful-
I thought he was wonderful- not a frown or a bad word about any staff, doc or care that I got at Mayo. I am doing well. I got all my primary chemo care in Minneapolis, 3 surgeries at Mayo and some follow up care. I am 23 months NED (no evidence of disease) and am looking forward to a glorious spring and summer
By the way what stage were you and when were you diagnosed?0 -
oh absolutely, chronicjudybauer said:OMG! NED for 23
OMG! NED for 23 months---that is wonderful, hopefully that will happen with my husband. He has never had surgery. That's the funny thing about his. His colon is clean. They told us sometimes the primary tumor dies off and they don't know why but it has already spread it's seeds. So surgery was not an option---at least for now. Dr. Grothey gives us such hope. We know there is not cure but hopefully manageable. Have heard they are very close to treating it as a chronic disease. Have you heard this?
oh absolutely, chronic disease! Many many on this board are keeping the cancer from spreading through long term chemo. I was staged at 3B0 -
No follow up with Grothey.judybauer said:Do you still have follow up
Do you still have follow up with Dr. Grothey? And did he ever give you a prognosis?
No follow up with Grothey. Never gave me a prognosis. Did tell me that if I stayed at Mayo, the cities, Florida, Hawaii, Europe- that no matter where I went the treatment would be the same. That he had no problemm with referring me outside of the Mayo system because stage 3B is treated universally the same way. He strongly encouraged me to stay very close to home (I am 90 miles north of Rochester), that one's oncologist should be close to where one lives. Great words- as my oncologist is less than a mile from where I live and work and was hospitalized 3 times due to chemo issues. I am so grateful that I DIDN'T make the attempt to stay at Mayo for chemo!0 -
I'm not sure what you meanPatteee said:No follow up with Grothey.
No follow up with Grothey. Never gave me a prognosis. Did tell me that if I stayed at Mayo, the cities, Florida, Hawaii, Europe- that no matter where I went the treatment would be the same. That he had no problemm with referring me outside of the Mayo system because stage 3B is treated universally the same way. He strongly encouraged me to stay very close to home (I am 90 miles north of Rochester), that one's oncologist should be close to where one lives. Great words- as my oncologist is less than a mile from where I live and work and was hospitalized 3 times due to chemo issues. I am so grateful that I DIDN'T make the attempt to stay at Mayo for chemo!
I'm not sure what you mean about not making the attempt to stay at Mayo for chemo! Do you mean because of the way you reacted to treatment?0 -
I hate to be a pain but doPatteee said:yes
yes
I hate to be a pain but do you ever feel that even though things are going really well, you get kind of depressed wondering about the what ifs? Things are going so well for my husband I can't help but think dark thoughts! I know Dr. Grothey is the best of the best and am very confident in his treatment plan but I guess I just want it all to go away. The doctors in Sioux Falls told us he would have 3-5 years and I keep focusing on that. I know I shouldn't but it is really hard not to. Dennis isn't, at least if he is, you would never know it. Dr Grothey said they are very close to treating this as a chronic disease not a fatal one and I try to hold on to that but it is very difficult to do sometimes. I guess I am just so scared about the future that sometimes I just want to
SCREAM! thanks for listening to me whine.0 -
*hugs*there are so manyjudybauer said:I hate to be a pain but do
I hate to be a pain but do you ever feel that even though things are going really well, you get kind of depressed wondering about the what ifs? Things are going so well for my husband I can't help but think dark thoughts! I know Dr. Grothey is the best of the best and am very confident in his treatment plan but I guess I just want it all to go away. The doctors in Sioux Falls told us he would have 3-5 years and I keep focusing on that. I know I shouldn't but it is really hard not to. Dennis isn't, at least if he is, you would never know it. Dr Grothey said they are very close to treating this as a chronic disease not a fatal one and I try to hold on to that but it is very difficult to do sometimes. I guess I am just so scared about the future that sometimes I just want to
SCREAM! thanks for listening to me whine.
*hugs*
there are so many days I look back and wonder how I got through it, many days I wonder if I am through it yet? but mostly I focus on the here and now. I will help you kick the doctor in Sioux Falls right in the kneecap for giving you a rubber stamp expiration date. I wonder too if the "date" is a warning of a rough road ahead and how serious this is? You have to know and believe that there are current treatments and the promise of future ones to come that WILL enhance and further life. There are all kinds of walking miracles with this on this very board. Dr. Grothey knows and believes this and has communicated it to you and your husband. You are in GREAT hands in his care- You are and Dennis is doing everything he is suppose to be doing. Please find some peace in that. And it is hard! I would have gladly lived my life without the Beast! But it was the hand I was dealt, what choice did I have other than to play it?0 -
I think I will take you upPatteee said:*hugs*there are so many
*hugs*
there are so many days I look back and wonder how I got through it, many days I wonder if I am through it yet? but mostly I focus on the here and now. I will help you kick the doctor in Sioux Falls right in the kneecap for giving you a rubber stamp expiration date. I wonder too if the "date" is a warning of a rough road ahead and how serious this is? You have to know and believe that there are current treatments and the promise of future ones to come that WILL enhance and further life. There are all kinds of walking miracles with this on this very board. Dr. Grothey knows and believes this and has communicated it to you and your husband. You are in GREAT hands in his care- You are and Dennis is doing everything he is suppose to be doing. Please find some peace in that. And it is hard! I would have gladly lived my life without the Beast! But it was the hand I was dealt, what choice did I have other than to play it?
I think I will take you up on the knee cap thing(ha) Don't know why they do that. They want the patient to have a good attitude about beating this thing and then they throw that in your face! Jerks! But you have given me some clarity and knowing someone who has dealt with Dr. Grothey also helps tremendously. It is an every day struggle as you well know. Hell, tomorrow he going to the twins game so he is living his life like there is nothing wrong. He is treating this like he has a chronic disease and if he needs to take chemo forever---so be it. As he said, he beats the alternative. Now I just need to follow his lead and yours!! Can't wait to see grothey is a couple of months and ask him more about two new drugs up for FDA approval that he said Dennis is the perfect candidate for. Right now he is on maintenance chemo, I think that's what he called it. Wish his liver mets would shrink enough for surgery. The liver is the most scary I think for me anyway.0 -
I think I will take you upPatteee said:*hugs*there are so many
*hugs*
there are so many days I look back and wonder how I got through it, many days I wonder if I am through it yet? but mostly I focus on the here and now. I will help you kick the doctor in Sioux Falls right in the kneecap for giving you a rubber stamp expiration date. I wonder too if the "date" is a warning of a rough road ahead and how serious this is? You have to know and believe that there are current treatments and the promise of future ones to come that WILL enhance and further life. There are all kinds of walking miracles with this on this very board. Dr. Grothey knows and believes this and has communicated it to you and your husband. You are in GREAT hands in his care- You are and Dennis is doing everything he is suppose to be doing. Please find some peace in that. And it is hard! I would have gladly lived my life without the Beast! But it was the hand I was dealt, what choice did I have other than to play it?
I think I will take you up on the knee cap thing(ha) Don't know why they do that. They want the patient to have a good attitude about beating this thing and then they throw that in your face! Jerks! But you have given me some clarity and knowing someone who has dealt with Dr. Grothey also helps tremendously. It is an every day struggle as you well know. Hell, tomorrow he going to the twins game so he is living his life like there is nothing wrong. He is treating this like he has a chronic disease and if he needs to take chemo forever---so be it. As he said, he beats the alternative. Now I just need to follow his lead and yours!! Can't wait to see grothey is a couple of months and ask him more about two new drugs up for FDA approval that he said Dennis is the perfect candidate for. Right now he is on maintenance chemo, I think that's what he called it. Wish his liver mets would shrink enough for surgery. The liver is the most scary I think for me anyway.0 -
I think I will take you upPatteee said:*hugs*there are so many
*hugs*
there are so many days I look back and wonder how I got through it, many days I wonder if I am through it yet? but mostly I focus on the here and now. I will help you kick the doctor in Sioux Falls right in the kneecap for giving you a rubber stamp expiration date. I wonder too if the "date" is a warning of a rough road ahead and how serious this is? You have to know and believe that there are current treatments and the promise of future ones to come that WILL enhance and further life. There are all kinds of walking miracles with this on this very board. Dr. Grothey knows and believes this and has communicated it to you and your husband. You are in GREAT hands in his care- You are and Dennis is doing everything he is suppose to be doing. Please find some peace in that. And it is hard! I would have gladly lived my life without the Beast! But it was the hand I was dealt, what choice did I have other than to play it?
I think I will take you up on the knee cap thing(ha) Don't know why they do that. They want the patient to have a good attitude about beating this thing and then they throw that in your face! Jerks! But you have given me some clarity and knowing someone who has dealt with Dr. Grothey also helps tremendously. It is an every day struggle as you well know. Hell, tomorrow he going to the twins game so he is living his life like there is nothing wrong. He is treating this like he has a chronic disease and if he needs to take chemo forever---so be it. As he said, he beats the alternative. Now I just need to follow his lead and yours!! Can't wait to see grothey is a couple of months and ask him more about two new drugs up for FDA approval that he said Dennis is the perfect candidate for. Right now he is on maintenance chemo, I think that's what he called it. Wish his liver mets would shrink enough for surgery. The liver is the most scary I think for me anyway.0 -
I think one of the strongjudybauer said:I think I will take you up
I think I will take you up on the knee cap thing(ha) Don't know why they do that. They want the patient to have a good attitude about beating this thing and then they throw that in your face! Jerks! But you have given me some clarity and knowing someone who has dealt with Dr. Grothey also helps tremendously. It is an every day struggle as you well know. Hell, tomorrow he going to the twins game so he is living his life like there is nothing wrong. He is treating this like he has a chronic disease and if he needs to take chemo forever---so be it. As he said, he beats the alternative. Now I just need to follow his lead and yours!! Can't wait to see grothey is a couple of months and ask him more about two new drugs up for FDA approval that he said Dennis is the perfect candidate for. Right now he is on maintenance chemo, I think that's what he called it. Wish his liver mets would shrink enough for surgery. The liver is the most scary I think for me anyway.
I think one of the strong things I learned was how to turn it over. Do what I could every single day and then turn the outcome over to God. I would look at myself in the mirror and do all my worrying in 4 mins (did I do this, do I need to do that, what about this, what about that)- I would run various things through my mind trying to determine if any stone were not uncovered and what I could do about any of it that very day. It helped that I have an incredible oncologist who I trusted, (just not Grothey, my one here in the cities)- it helps to let them do their job and not have to feel like I am doing it for them At the end of my 4 mins of worry I would DROP it, truly drop it from my mind and my day. This does take some practice, btw! Basically Judy, I never ever wanted to look back and feel as though the cancer was running my life. 2 years later what I struggle with is almost a post tramatic syndrome- kinda like experiencing the horror of it all. Being rushed to Mayo in the middle of the night with an obstructed bowel, was pretty horrific. I get weapy at times, and angry more than anything. I feel as though I lost a huge part of myself and my life and I struggle to regain and find my new normal. What I have found is 23 months of NED is wonderful, but the struggle is still there! 0
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