› Forums › General Melanoma Community › .MD Anderson, Moffit, or elsewhere?Seeking advice now on where to travel from here… Wanting to make decision abt Zelboraf
- This topic has 48 replies, 13 voices, and was last updated 11 years, 5 months ago by
Tina D.
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- November 13, 2012 at 2:50 pm
I have been thankful for all the helpful posts in response to my question abt possibly going off the Zelboraf in December if scans are still clear. We are thinking we'd like to seek expert opinion and are considering traveling to one of the bigger hospitals to seek opinion. I have heard MD Anderson mentioned favorably many times. We live in SW Indiana, but are completely willing to travel this time to wherever is best.
I have been thankful for all the helpful posts in response to my question abt possibly going off the Zelboraf in December if scans are still clear. We are thinking we'd like to seek expert opinion and are considering traveling to one of the bigger hospitals to seek opinion. I have heard MD Anderson mentioned favorably many times. We live in SW Indiana, but are completely willing to travel this time to wherever is best. My Oncologist ( though he is absolutely brilliant) has limited experience with Z and before making this big of a decision we'd like to talk with someone who has more experience in this area.
What are your experiences or opinions?
I will not always be this high-maintenance
. Just that these decisions are so big to us right now.Thank you!!
Tina
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- November 13, 2012 at 4:22 pm
You don't hear much about them on here, but Dr. Gerald Linette at Barnes Jewish in st. Louis is good. Very active in clinical trials for melanoma. the hospital is one of the top 10 cancer centers in the country.
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- November 13, 2012 at 5:59 pm
My husband is with Dr. Linette, too. Stage 4 with NED! Dr. Linnet ran one of the trials with Zelboraf, so he’s been working with it for at least 3 years and knows a lot about it. He even figured it out when my husband had a really rare, really scary reaction to the Zelboraf. I know he’s mentioned pulling my husband off of Zelboraf now that he’s NED, but neither of us are comfortable with that, and dr. Linnet respects our idea on it.
He does have a bit of a quirky personality…some days it’s hard to figure him out, but he’s patient, never in a hurry and will answer all the questions you have (unfortunately that means he runs really late some days, but it’s totally worth it to have his expertise and knowledge). -
- November 13, 2012 at 5:59 pm
My husband is with Dr. Linette, too. Stage 4 with NED! Dr. Linnet ran one of the trials with Zelboraf, so he’s been working with it for at least 3 years and knows a lot about it. He even figured it out when my husband had a really rare, really scary reaction to the Zelboraf. I know he’s mentioned pulling my husband off of Zelboraf now that he’s NED, but neither of us are comfortable with that, and dr. Linnet respects our idea on it.
He does have a bit of a quirky personality…some days it’s hard to figure him out, but he’s patient, never in a hurry and will answer all the questions you have (unfortunately that means he runs really late some days, but it’s totally worth it to have his expertise and knowledge). -
- November 13, 2012 at 5:59 pm
My husband is with Dr. Linette, too. Stage 4 with NED! Dr. Linnet ran one of the trials with Zelboraf, so he’s been working with it for at least 3 years and knows a lot about it. He even figured it out when my husband had a really rare, really scary reaction to the Zelboraf. I know he’s mentioned pulling my husband off of Zelboraf now that he’s NED, but neither of us are comfortable with that, and dr. Linnet respects our idea on it.
He does have a bit of a quirky personality…some days it’s hard to figure him out, but he’s patient, never in a hurry and will answer all the questions you have (unfortunately that means he runs really late some days, but it’s totally worth it to have his expertise and knowledge).
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- November 13, 2012 at 4:34 pm
HI Tina,
There are so many good Melanoma treatment centers out there. For whatever it's worth, my choice came down to MD Anderson or Moffitt. Due to the proximity, I chose Moffitt. Dr. Weber is an incredible oncologist! He has often called me after hours to give me news or emailed me late at night. I am very happy with the treatment and facilities at Moffitt.
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- November 13, 2012 at 4:34 pm
HI Tina,
There are so many good Melanoma treatment centers out there. For whatever it's worth, my choice came down to MD Anderson or Moffitt. Due to the proximity, I chose Moffitt. Dr. Weber is an incredible oncologist! He has often called me after hours to give me news or emailed me late at night. I am very happy with the treatment and facilities at Moffitt.
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- November 13, 2012 at 4:34 pm
HI Tina,
There are so many good Melanoma treatment centers out there. For whatever it's worth, my choice came down to MD Anderson or Moffitt. Due to the proximity, I chose Moffitt. Dr. Weber is an incredible oncologist! He has often called me after hours to give me news or emailed me late at night. I am very happy with the treatment and facilities at Moffitt.
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- November 13, 2012 at 6:57 pm
I'm a patient at Sloan Kettering. I started Zelboraf in May. Our plan all along was that after 4 months or so I would switch to Ipi. My Jul scans showed improvement but my Sept scans showed growth again. So it was a much easier decision to make a switch. Did surgery Oct 4th to remove rather large tumor from my small intestine and then started ipi the week before. Had 3rd dose last week. Final dose will be Nov 27th and then scans after that. Then we'll decide what to do.
I know other patients that were on Zelboraf who were told after clean scans they would look at switching to Ipi since Z tends to stop working after a certain amount of time. Guess when it comes down to it, it never hurts to get other opinions on treatment options!
Best of luck!
Erin
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- November 13, 2012 at 6:57 pm
I'm a patient at Sloan Kettering. I started Zelboraf in May. Our plan all along was that after 4 months or so I would switch to Ipi. My Jul scans showed improvement but my Sept scans showed growth again. So it was a much easier decision to make a switch. Did surgery Oct 4th to remove rather large tumor from my small intestine and then started ipi the week before. Had 3rd dose last week. Final dose will be Nov 27th and then scans after that. Then we'll decide what to do.
I know other patients that were on Zelboraf who were told after clean scans they would look at switching to Ipi since Z tends to stop working after a certain amount of time. Guess when it comes down to it, it never hurts to get other opinions on treatment options!
Best of luck!
Erin
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- November 13, 2012 at 6:57 pm
I'm a patient at Sloan Kettering. I started Zelboraf in May. Our plan all along was that after 4 months or so I would switch to Ipi. My Jul scans showed improvement but my Sept scans showed growth again. So it was a much easier decision to make a switch. Did surgery Oct 4th to remove rather large tumor from my small intestine and then started ipi the week before. Had 3rd dose last week. Final dose will be Nov 27th and then scans after that. Then we'll decide what to do.
I know other patients that were on Zelboraf who were told after clean scans they would look at switching to Ipi since Z tends to stop working after a certain amount of time. Guess when it comes down to it, it never hurts to get other opinions on treatment options!
Best of luck!
Erin
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- November 13, 2012 at 8:41 pm
Hi, TinaD-
Actually, Zelboraf is so new that NOBODY has much experience with it. However, those with the most experience would be the doctors who participated in the Zelboraf (aka Vermurafenib) clinical trials. You can't go wrong consulting with the melanoma specialists at either MD Anderson or at Moffitt. However, if you want to stay closer to home, Indiana University Hospital in Indianapolis and Indiana University at Goshen both participated in the Vermurafenib clinical trials (and have some new ones coming soon). So you might want to check them out.
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- November 13, 2012 at 8:41 pm
Hi, TinaD-
Actually, Zelboraf is so new that NOBODY has much experience with it. However, those with the most experience would be the doctors who participated in the Zelboraf (aka Vermurafenib) clinical trials. You can't go wrong consulting with the melanoma specialists at either MD Anderson or at Moffitt. However, if you want to stay closer to home, Indiana University Hospital in Indianapolis and Indiana University at Goshen both participated in the Vermurafenib clinical trials (and have some new ones coming soon). So you might want to check them out.
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- November 13, 2012 at 8:41 pm
Hi, TinaD-
Actually, Zelboraf is so new that NOBODY has much experience with it. However, those with the most experience would be the doctors who participated in the Zelboraf (aka Vermurafenib) clinical trials. You can't go wrong consulting with the melanoma specialists at either MD Anderson or at Moffitt. However, if you want to stay closer to home, Indiana University Hospital in Indianapolis and Indiana University at Goshen both participated in the Vermurafenib clinical trials (and have some new ones coming soon). So you might want to check them out.
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- November 13, 2012 at 9:45 pm
Tina,I wish you the best of luck wherever you go, whatever you choose. I had a really good experience with my four rounds of biochemo at MD Anderson and they have just launched a $3 billion initiative to cure several kinds of cancer including Mel. (Google MDA moonshot). So they will have unique trials and studies that they pay for with their own funds.
That being said, it is less personal, I never once had a call back or email from my doc, only his nurse. But I was stage 3c resected NED at the time, so less needy!
I know, it is so hard to know what to do. I really don’t think they know right now.
Amy
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- November 13, 2012 at 9:45 pm
Tina,I wish you the best of luck wherever you go, whatever you choose. I had a really good experience with my four rounds of biochemo at MD Anderson and they have just launched a $3 billion initiative to cure several kinds of cancer including Mel. (Google MDA moonshot). So they will have unique trials and studies that they pay for with their own funds.
That being said, it is less personal, I never once had a call back or email from my doc, only his nurse. But I was stage 3c resected NED at the time, so less needy!
I know, it is so hard to know what to do. I really don’t think they know right now.
Amy
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- November 13, 2012 at 9:45 pm
Tina,I wish you the best of luck wherever you go, whatever you choose. I had a really good experience with my four rounds of biochemo at MD Anderson and they have just launched a $3 billion initiative to cure several kinds of cancer including Mel. (Google MDA moonshot). So they will have unique trials and studies that they pay for with their own funds.
That being said, it is less personal, I never once had a call back or email from my doc, only his nurse. But I was stage 3c resected NED at the time, so less needy!
I know, it is so hard to know what to do. I really don’t think they know right now.
Amy
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- November 15, 2012 at 4:15 am
Thanks everyone… We are looking in to each of these suggestions and really trying to weigh things out. We are not nearly as far from St Louis, and that would be a much more do-able trip. We are blessed to live in a country with such tremendous choices.We are praying that we make the right decision and sometimes the thought of it is overwhelming. I am not complaining. God has blessed me far beyond what I could have ever asked or imagined & I am grateful.
I appreciate you guys, I really do.
Tina
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- November 15, 2012 at 4:15 am
Thanks everyone… We are looking in to each of these suggestions and really trying to weigh things out. We are not nearly as far from St Louis, and that would be a much more do-able trip. We are blessed to live in a country with such tremendous choices.We are praying that we make the right decision and sometimes the thought of it is overwhelming. I am not complaining. God has blessed me far beyond what I could have ever asked or imagined & I am grateful.
I appreciate you guys, I really do.
Tina
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- November 15, 2012 at 4:15 am
Thanks everyone… We are looking in to each of these suggestions and really trying to weigh things out. We are not nearly as far from St Louis, and that would be a much more do-able trip. We are blessed to live in a country with such tremendous choices.We are praying that we make the right decision and sometimes the thought of it is overwhelming. I am not complaining. God has blessed me far beyond what I could have ever asked or imagined & I am grateful.
I appreciate you guys, I really do.
Tina
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- November 15, 2012 at 4:03 am
Hello, Tina; not to be argumentative, but rather inquisitive; what thoughts are driving you to stop something that is working for you and seeking confirmation to stop that?
The fear of Zelboraf no longer working I get; but if I understand it right, it IS working for you right now. Why would you stop? Sadly, Zelboraf has shown to be a temporary and short lived solution to Melanoma, for the most part,, however there ARE some instances of pathway shutdown that are lasting longer and longer.
I'm not a doctor and any opinion I have is just like a rectum…………..everybody has one.
My suggestion however, would be this: Knowing that the chances of a durable remission are slight with Zelboraf alone and since it IS working for you right now; explore a way to enhance that.
That aside, try not to get blinded by the light so to speak about what is the absolute best place to go for Melanoma treatment. There are an enormous amount of variables in the equation of what is "best".
As a benchmark, try and remember that no two melanoma patients respond to any one treatment in the same way; it is no less the same way with selection of a clinical provider.
With that in mind, here are three places near you that are worthjy of note that have extensive experience with melanoma; all three of which are "Cancer Centers of Excellence"
The Cleveland Clinc:
University of Pittsburgh Medical Center
http://www.upmccancercenter.com/portal_mela/program.cfm
Ohio Stae University-The James
http://cancer.osu.edu/patientsandvisitors/cancerinfo/cancertypes/skin/team/pages/index.aspx
Please bear in mind that I understand the urge to hop a flight and go see the best; that is not always necessary in our wired world.
It is plenty easy to send all of your scans, labs, path reports, surgical reports, treatment history and ask for a non-biased second opinion and get it via conference call or written second look without even leaving your home.
Just a thought.
I wish you well.
Charlie S
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- November 15, 2012 at 4:03 am
Hello, Tina; not to be argumentative, but rather inquisitive; what thoughts are driving you to stop something that is working for you and seeking confirmation to stop that?
The fear of Zelboraf no longer working I get; but if I understand it right, it IS working for you right now. Why would you stop? Sadly, Zelboraf has shown to be a temporary and short lived solution to Melanoma, for the most part,, however there ARE some instances of pathway shutdown that are lasting longer and longer.
I'm not a doctor and any opinion I have is just like a rectum…………..everybody has one.
My suggestion however, would be this: Knowing that the chances of a durable remission are slight with Zelboraf alone and since it IS working for you right now; explore a way to enhance that.
That aside, try not to get blinded by the light so to speak about what is the absolute best place to go for Melanoma treatment. There are an enormous amount of variables in the equation of what is "best".
As a benchmark, try and remember that no two melanoma patients respond to any one treatment in the same way; it is no less the same way with selection of a clinical provider.
With that in mind, here are three places near you that are worthjy of note that have extensive experience with melanoma; all three of which are "Cancer Centers of Excellence"
The Cleveland Clinc:
University of Pittsburgh Medical Center
http://www.upmccancercenter.com/portal_mela/program.cfm
Ohio Stae University-The James
http://cancer.osu.edu/patientsandvisitors/cancerinfo/cancertypes/skin/team/pages/index.aspx
Please bear in mind that I understand the urge to hop a flight and go see the best; that is not always necessary in our wired world.
It is plenty easy to send all of your scans, labs, path reports, surgical reports, treatment history and ask for a non-biased second opinion and get it via conference call or written second look without even leaving your home.
Just a thought.
I wish you well.
Charlie S
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- November 15, 2012 at 4:03 am
Hello, Tina; not to be argumentative, but rather inquisitive; what thoughts are driving you to stop something that is working for you and seeking confirmation to stop that?
The fear of Zelboraf no longer working I get; but if I understand it right, it IS working for you right now. Why would you stop? Sadly, Zelboraf has shown to be a temporary and short lived solution to Melanoma, for the most part,, however there ARE some instances of pathway shutdown that are lasting longer and longer.
I'm not a doctor and any opinion I have is just like a rectum…………..everybody has one.
My suggestion however, would be this: Knowing that the chances of a durable remission are slight with Zelboraf alone and since it IS working for you right now; explore a way to enhance that.
That aside, try not to get blinded by the light so to speak about what is the absolute best place to go for Melanoma treatment. There are an enormous amount of variables in the equation of what is "best".
As a benchmark, try and remember that no two melanoma patients respond to any one treatment in the same way; it is no less the same way with selection of a clinical provider.
With that in mind, here are three places near you that are worthjy of note that have extensive experience with melanoma; all three of which are "Cancer Centers of Excellence"
The Cleveland Clinc:
University of Pittsburgh Medical Center
http://www.upmccancercenter.com/portal_mela/program.cfm
Ohio Stae University-The James
http://cancer.osu.edu/patientsandvisitors/cancerinfo/cancertypes/skin/team/pages/index.aspx
Please bear in mind that I understand the urge to hop a flight and go see the best; that is not always necessary in our wired world.
It is plenty easy to send all of your scans, labs, path reports, surgical reports, treatment history and ask for a non-biased second opinion and get it via conference call or written second look without even leaving your home.
Just a thought.
I wish you well.
Charlie S
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- November 15, 2012 at 11:41 pm
Hi Charlie,
I appreciate your questions and input. There is so much I do not understand about how Zelboraf works, and many times, ceases to work. My understanding is that eventually the cancer cells find another communication pathway and then begin to proliferate sometimes at an even quicker rate than before. I am wondering if I could avoid having my body constantly bombarded with the Zelboraf, if this would slow down ( or perhaps avoid) this education of the cancer cells. That is one part of my thought process.
Along with that is the fact that the treatments are taking a big toll on me physically, and making it challenging to be a wife and mom… but I am willing to function at a fraction of the norm, if it may mean more time overall. I had numerous tumors in April of this year, and all were 100% resolved when I had my first scans abt 2 1/2 months later. I am due for scans in December, and am thinking that if they are clear again, then perhaps going off the Z and being closely monitored ( as always) would be a good idea. I dont know if it would be, but it is a thought that I entertain. If something showed up on a scan that was inoperable, then perhaps the Zelboraf would work at that point. I just do not know. This leads me to the reason for wanting an opinion from a "big name" hospital… just with the hopes that someone with much more experience with Zelboraf would be able to help us see possible implications as much as possible for any of the choices facing us. My Oncologist is great…. really great…. and we have seen him for over 10 yrs, but I am the only person he has on Zelboraf. Your suggestions for places closer than Houston are good, and we were already leaning towards possibly St Louis. I will also look into Cleveland Clinic.
Thank you, again… for taking the time to write your ideas here for me, I really do appreciate it so much.
Tina
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- November 15, 2012 at 11:41 pm
Hi Charlie,
I appreciate your questions and input. There is so much I do not understand about how Zelboraf works, and many times, ceases to work. My understanding is that eventually the cancer cells find another communication pathway and then begin to proliferate sometimes at an even quicker rate than before. I am wondering if I could avoid having my body constantly bombarded with the Zelboraf, if this would slow down ( or perhaps avoid) this education of the cancer cells. That is one part of my thought process.
Along with that is the fact that the treatments are taking a big toll on me physically, and making it challenging to be a wife and mom… but I am willing to function at a fraction of the norm, if it may mean more time overall. I had numerous tumors in April of this year, and all were 100% resolved when I had my first scans abt 2 1/2 months later. I am due for scans in December, and am thinking that if they are clear again, then perhaps going off the Z and being closely monitored ( as always) would be a good idea. I dont know if it would be, but it is a thought that I entertain. If something showed up on a scan that was inoperable, then perhaps the Zelboraf would work at that point. I just do not know. This leads me to the reason for wanting an opinion from a "big name" hospital… just with the hopes that someone with much more experience with Zelboraf would be able to help us see possible implications as much as possible for any of the choices facing us. My Oncologist is great…. really great…. and we have seen him for over 10 yrs, but I am the only person he has on Zelboraf. Your suggestions for places closer than Houston are good, and we were already leaning towards possibly St Louis. I will also look into Cleveland Clinic.
Thank you, again… for taking the time to write your ideas here for me, I really do appreciate it so much.
Tina
-
- November 15, 2012 at 11:41 pm
Hi Charlie,
I appreciate your questions and input. There is so much I do not understand about how Zelboraf works, and many times, ceases to work. My understanding is that eventually the cancer cells find another communication pathway and then begin to proliferate sometimes at an even quicker rate than before. I am wondering if I could avoid having my body constantly bombarded with the Zelboraf, if this would slow down ( or perhaps avoid) this education of the cancer cells. That is one part of my thought process.
Along with that is the fact that the treatments are taking a big toll on me physically, and making it challenging to be a wife and mom… but I am willing to function at a fraction of the norm, if it may mean more time overall. I had numerous tumors in April of this year, and all were 100% resolved when I had my first scans abt 2 1/2 months later. I am due for scans in December, and am thinking that if they are clear again, then perhaps going off the Z and being closely monitored ( as always) would be a good idea. I dont know if it would be, but it is a thought that I entertain. If something showed up on a scan that was inoperable, then perhaps the Zelboraf would work at that point. I just do not know. This leads me to the reason for wanting an opinion from a "big name" hospital… just with the hopes that someone with much more experience with Zelboraf would be able to help us see possible implications as much as possible for any of the choices facing us. My Oncologist is great…. really great…. and we have seen him for over 10 yrs, but I am the only person he has on Zelboraf. Your suggestions for places closer than Houston are good, and we were already leaning towards possibly St Louis. I will also look into Cleveland Clinic.
Thank you, again… for taking the time to write your ideas here for me, I really do appreciate it so much.
Tina
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- November 16, 2012 at 5:44 am
I wish I had the answer for Zelboraf. I have been taking the first targeted cancer drug approved for any cancer, Gleevec. There has been studies that have shown that often, if the administration is stopped at either the 1, 2 or 3 year points that the cancers it is approved for accelerate their growth. I have contacted some people that have been on it for over ten years. I have also known others that after having a miraculous remission for a number of months, had it cease to be effective and are no longer with us. For me and the Gleevec, I will continue taking it as long as I remain essentially stable and the side-effects allow me to function reasonably well.
According to NIH, Gleevec is a cytostatic (stops tumor cell proliferation), not an apoptosis (cell death) creating drug. Some of the oncologists state that Gleevec MAY induce apoptosis.
So many unknowns!
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- November 16, 2012 at 5:44 am
I wish I had the answer for Zelboraf. I have been taking the first targeted cancer drug approved for any cancer, Gleevec. There has been studies that have shown that often, if the administration is stopped at either the 1, 2 or 3 year points that the cancers it is approved for accelerate their growth. I have contacted some people that have been on it for over ten years. I have also known others that after having a miraculous remission for a number of months, had it cease to be effective and are no longer with us. For me and the Gleevec, I will continue taking it as long as I remain essentially stable and the side-effects allow me to function reasonably well.
According to NIH, Gleevec is a cytostatic (stops tumor cell proliferation), not an apoptosis (cell death) creating drug. Some of the oncologists state that Gleevec MAY induce apoptosis.
So many unknowns!
-
- November 16, 2012 at 5:44 am
I wish I had the answer for Zelboraf. I have been taking the first targeted cancer drug approved for any cancer, Gleevec. There has been studies that have shown that often, if the administration is stopped at either the 1, 2 or 3 year points that the cancers it is approved for accelerate their growth. I have contacted some people that have been on it for over ten years. I have also known others that after having a miraculous remission for a number of months, had it cease to be effective and are no longer with us. For me and the Gleevec, I will continue taking it as long as I remain essentially stable and the side-effects allow me to function reasonably well.
According to NIH, Gleevec is a cytostatic (stops tumor cell proliferation), not an apoptosis (cell death) creating drug. Some of the oncologists state that Gleevec MAY induce apoptosis.
So many unknowns!
-
- November 17, 2012 at 12:50 am
Tina, wanted to let you know that my husband is being treated at the Cleveland Clinic for Stage IV metastatic melanoma that spread to brain, liver, lungs, eye orbit. We have been very happy with his treatment so far at the Taussig Cancer Center. They do not have a dedicated Melanoma Center however. Our team consists of Dr McNamara – oncologist, Dr. Chao – Radiation Oncologist, and Dr. Singh – Eye Specialist – Cole Eye Institute at Cleveland Clinic, Together these doctors have planned a course of treatment for my husband. Started in September 2012. Zelboraf and whole brain radiation. The Eye orbit tumor is totally gone. No new lesions – All others are shrinking. We pray for continued healing. We also had a consultation at the University of Pittsburgh with their Melanoma Clinic and Dr. Kirkwood after we had started treatment in Cleveland. Dr. Kirkwood is on our team as we progress forward. He has the access to clinical trials etc that the Cleveland Clinic does not participate in for Melanoma.
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- November 17, 2012 at 12:50 am
Tina, wanted to let you know that my husband is being treated at the Cleveland Clinic for Stage IV metastatic melanoma that spread to brain, liver, lungs, eye orbit. We have been very happy with his treatment so far at the Taussig Cancer Center. They do not have a dedicated Melanoma Center however. Our team consists of Dr McNamara – oncologist, Dr. Chao – Radiation Oncologist, and Dr. Singh – Eye Specialist – Cole Eye Institute at Cleveland Clinic, Together these doctors have planned a course of treatment for my husband. Started in September 2012. Zelboraf and whole brain radiation. The Eye orbit tumor is totally gone. No new lesions – All others are shrinking. We pray for continued healing. We also had a consultation at the University of Pittsburgh with their Melanoma Clinic and Dr. Kirkwood after we had started treatment in Cleveland. Dr. Kirkwood is on our team as we progress forward. He has the access to clinical trials etc that the Cleveland Clinic does not participate in for Melanoma.
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- November 17, 2012 at 12:50 am
Tina, wanted to let you know that my husband is being treated at the Cleveland Clinic for Stage IV metastatic melanoma that spread to brain, liver, lungs, eye orbit. We have been very happy with his treatment so far at the Taussig Cancer Center. They do not have a dedicated Melanoma Center however. Our team consists of Dr McNamara – oncologist, Dr. Chao – Radiation Oncologist, and Dr. Singh – Eye Specialist – Cole Eye Institute at Cleveland Clinic, Together these doctors have planned a course of treatment for my husband. Started in September 2012. Zelboraf and whole brain radiation. The Eye orbit tumor is totally gone. No new lesions – All others are shrinking. We pray for continued healing. We also had a consultation at the University of Pittsburgh with their Melanoma Clinic and Dr. Kirkwood after we had started treatment in Cleveland. Dr. Kirkwood is on our team as we progress forward. He has the access to clinical trials etc that the Cleveland Clinic does not participate in for Melanoma.
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- November 18, 2012 at 5:16 pm
Tina,
Did you hear about the new arrangement between MD Anderson and Community North hospital in Indianapolis. It was just in the Indy Star and on the news this Thursday. They have a 3 year contract and will be working together on cancer treatment. Community North doctors will have contact with all of the doctors at MD Anderson!
Maybe you can do a google search for Community North & MD Anderson and see the article that I'm referring to.
We are going back to the general oncologist that we met with when Scott was first diagnosed. His name is Dr. Bhatia.
I'd suggest setting up an appointment with a community north oncologist. The deal with MD Anderson is effective immediately.
Best of luck, Lisa
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- November 27, 2012 at 7:52 pm
What have you decided, Tina ? Just wondering…..and interested. How are you doing ?
Nancy (devoted wife of 3 X Warrior Wayne)
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- November 28, 2012 at 12:43 am
Nancy,
Thank you for checking 🙂 . I found that I was fairly unable to think too much more about it until I get past my upcoming scans… emotionally, seems like I couldn't go beyond. But, I do think we've settled on St Louis since it is rather close and if I were to need follow up visits and such, it would be manageable. I will ask my oncologist next week on scan report day ( the 5th) and see what he thinks abt St Louis as an option. I am trying to just leave the scans in the Lord's hands, but anxiety is creepin in there from time to time.
I am feeling pretty fatigued from the Z overall… it has an accumulative effect, it seems. I did just get a few days off because I was down in bed with strep throat, haha! I was able to enjoy most of Thanksgiving Day with our 29 guests … amazing to still be here for yet another Thanksgiving. Since my stg IV dx in 2005, I am amazed with every passing year. So grateful.
Hope all is well there with you guys!
Tina
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- December 9, 2012 at 12:14 am
Well, since my PET came back showing a recurrence, we have moved ahead quickly. ( so much for discussing about whether to d/c Zelboraf!) . I will be seeing Dr Linette at Barnes-Jewish Hosp in St Louis. My oncologist was impressed with the fact that they have a melanoma specialty clinic. It took less than one week from request to having an appointment! Amazing! also, my oncologist is calling around to gather opinions. Thanks again for all the great advice and help.
Tina
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- December 9, 2012 at 12:14 am
Well, since my PET came back showing a recurrence, we have moved ahead quickly. ( so much for discussing about whether to d/c Zelboraf!) . I will be seeing Dr Linette at Barnes-Jewish Hosp in St Louis. My oncologist was impressed with the fact that they have a melanoma specialty clinic. It took less than one week from request to having an appointment! Amazing! also, my oncologist is calling around to gather opinions. Thanks again for all the great advice and help.
Tina
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- December 9, 2012 at 12:14 am
Well, since my PET came back showing a recurrence, we have moved ahead quickly. ( so much for discussing about whether to d/c Zelboraf!) . I will be seeing Dr Linette at Barnes-Jewish Hosp in St Louis. My oncologist was impressed with the fact that they have a melanoma specialty clinic. It took less than one week from request to having an appointment! Amazing! also, my oncologist is calling around to gather opinions. Thanks again for all the great advice and help.
Tina
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- November 28, 2012 at 12:43 am
Nancy,
Thank you for checking 🙂 . I found that I was fairly unable to think too much more about it until I get past my upcoming scans… emotionally, seems like I couldn't go beyond. But, I do think we've settled on St Louis since it is rather close and if I were to need follow up visits and such, it would be manageable. I will ask my oncologist next week on scan report day ( the 5th) and see what he thinks abt St Louis as an option. I am trying to just leave the scans in the Lord's hands, but anxiety is creepin in there from time to time.
I am feeling pretty fatigued from the Z overall… it has an accumulative effect, it seems. I did just get a few days off because I was down in bed with strep throat, haha! I was able to enjoy most of Thanksgiving Day with our 29 guests … amazing to still be here for yet another Thanksgiving. Since my stg IV dx in 2005, I am amazed with every passing year. So grateful.
Hope all is well there with you guys!
Tina
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- November 28, 2012 at 12:43 am
Nancy,
Thank you for checking 🙂 . I found that I was fairly unable to think too much more about it until I get past my upcoming scans… emotionally, seems like I couldn't go beyond. But, I do think we've settled on St Louis since it is rather close and if I were to need follow up visits and such, it would be manageable. I will ask my oncologist next week on scan report day ( the 5th) and see what he thinks abt St Louis as an option. I am trying to just leave the scans in the Lord's hands, but anxiety is creepin in there from time to time.
I am feeling pretty fatigued from the Z overall… it has an accumulative effect, it seems. I did just get a few days off because I was down in bed with strep throat, haha! I was able to enjoy most of Thanksgiving Day with our 29 guests … amazing to still be here for yet another Thanksgiving. Since my stg IV dx in 2005, I am amazed with every passing year. So grateful.
Hope all is well there with you guys!
Tina
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- November 27, 2012 at 7:52 pm
What have you decided, Tina ? Just wondering…..and interested. How are you doing ?
Nancy (devoted wife of 3 X Warrior Wayne)
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- November 27, 2012 at 7:52 pm
What have you decided, Tina ? Just wondering…..and interested. How are you doing ?
Nancy (devoted wife of 3 X Warrior Wayne)
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- November 18, 2012 at 5:16 pm
Tina,
Did you hear about the new arrangement between MD Anderson and Community North hospital in Indianapolis. It was just in the Indy Star and on the news this Thursday. They have a 3 year contract and will be working together on cancer treatment. Community North doctors will have contact with all of the doctors at MD Anderson!
Maybe you can do a google search for Community North & MD Anderson and see the article that I'm referring to.
We are going back to the general oncologist that we met with when Scott was first diagnosed. His name is Dr. Bhatia.
I'd suggest setting up an appointment with a community north oncologist. The deal with MD Anderson is effective immediately.
Best of luck, Lisa
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- November 18, 2012 at 5:16 pm
Tina,
Did you hear about the new arrangement between MD Anderson and Community North hospital in Indianapolis. It was just in the Indy Star and on the news this Thursday. They have a 3 year contract and will be working together on cancer treatment. Community North doctors will have contact with all of the doctors at MD Anderson!
Maybe you can do a google search for Community North & MD Anderson and see the article that I'm referring to.
We are going back to the general oncologist that we met with when Scott was first diagnosed. His name is Dr. Bhatia.
I'd suggest setting up an appointment with a community north oncologist. The deal with MD Anderson is effective immediately.
Best of luck, Lisa
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