Avastin - should my daughter refuse it?
We are gathering scans and info to send to liver surgeon at a larger cancer center, only NCI cancer center in our state (MO). There is a guy here locally who had stage IV colon cancer with "inoperable" liver mets who was sent there by smaller onc group. He had five tumors in his liver - two large ones, three smaller ones, spread all over his liver. The surgeon removed the larger tumors and did RFA on the rest and this guy has been cancer-free since then. This doctor also does HAI, chemoembolization, cryosurgery, etc. The liver is his specialty. He does live donor liver transplants, etc., and is the head of the department.
I am worried that taking Avastin might disqualify her for some of the therapies that he might suggest, if he even agrees to see her. I am absolutely terrified. Do any of you know about this?
Also, does she need a referral to this surgeon from her current oncologist? How to oncologists feel about sending somebody to another cancer center than theirs?
Thanks for your help.
Comments
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Avastin
The avastin should not disqualify her for anything. It must be stopped about 6 weeks prior to any surgery and then you can go back on it anywhere from 4 to 6 weeks (I think 6 weeks is preferable)after. For instance right now I am on an avastin break since I'm having a few root canals in a couple of weeks. I will have been off avastin for 6 weeks and then after the root canals in 4 weeks I'll go back on it.
As for the oncologists, mine happily sent me to another to try and get liver surgery, in fact he recommended it, as he felt the oncologist at Stanford had a better chance of getting me surgery so he sent me right over. After surgery and a check up, then she sent me right back. It worked out great, so your oncologist shouldn't fear sending her for another opinion at all!!
Best of luck!!!
Winter Marie0 -
Second opinion...herdizziness said:Avastin
The avastin should not disqualify her for anything. It must be stopped about 6 weeks prior to any surgery and then you can go back on it anywhere from 4 to 6 weeks (I think 6 weeks is preferable)after. For instance right now I am on an avastin break since I'm having a few root canals in a couple of weeks. I will have been off avastin for 6 weeks and then after the root canals in 4 weeks I'll go back on it.
As for the oncologists, mine happily sent me to another to try and get liver surgery, in fact he recommended it, as he felt the oncologist at Stanford had a better chance of getting me surgery so he sent me right over. After surgery and a check up, then she sent me right back. It worked out great, so your oncologist shouldn't fear sending her for another opinion at all!!
Best of luck!!!
Winter Marie
Winter Marie, my son-in-law called the oncologist and told him we are getting an opinion from a liver surgeon. So now he knows, and told SIL that he should never feel he needs to ask "permission" to do this, that he is fine with it. I just hope and pray he will see us after we send the scans. He is going to look at them and decide. I am so scared. Thanks for the info about the Avastin. I just didn't know, and don't want to do anything wrong.0 -
Avastin
Im guessing that for one, you're not sure what the oncologist means by saying FOLFOX had plateaued? Chemo often stops being effective at some point. If that didn't happen then chemo could continue to kill cancer cells and more people would be cured..
The first drugs I went on way back when was FOLFOX and Avastin. The Avastin shrunk my liver tumors like we had hoped. Like Marie said, your daughter would have to stop Avastin prior to surgery but I can't think of any reasons why there'd be a problem.
I believe that any oncologist who is any good would not have a problem with you investigating other cancer centers. If they did have a problem, I'd have a problem with them! This is one time where you really don't want to skimp on things. You should get the BEST CARE POSSIBLE because what you do first makes a huge difference. Even if you consult at one cancer center then treat at another it does make a difference IMO.
Best wishes,
-Phil0 -
Folfox plateau...PhillieG said:Avastin
Im guessing that for one, you're not sure what the oncologist means by saying FOLFOX had plateaued? Chemo often stops being effective at some point. If that didn't happen then chemo could continue to kill cancer cells and more people would be cured..
The first drugs I went on way back when was FOLFOX and Avastin. The Avastin shrunk my liver tumors like we had hoped. Like Marie said, your daughter would have to stop Avastin prior to surgery but I can't think of any reasons why there'd be a problem.
I believe that any oncologist who is any good would not have a problem with you investigating other cancer centers. If they did have a problem, I'd have a problem with them! This is one time where you really don't want to skimp on things. You should get the BEST CARE POSSIBLE because what you do first makes a huge difference. Even if you consult at one cancer center then treat at another it does make a difference IMO.
Best wishes,
-Phil
Phil, yes, the Folfox apparently stopped working. So she is being switched to Folfiri with Avastin, starting tomorrow. And tomorrow, we collect the last of the scans and will overnight the package to the liver surgeon. Please tell me there's still reason to hope?????? My heart is beating out of my chest.
Sandy0 -
SandyVarmint5 said:Folfox plateau...
Phil, yes, the Folfox apparently stopped working. So she is being switched to Folfiri with Avastin, starting tomorrow. And tomorrow, we collect the last of the scans and will overnight the package to the liver surgeon. Please tell me there's still reason to hope?????? My heart is beating out of my chest.
Sandy
Of course there is reason to still hope. There are many here that when one chemo quits working after some time and they start on another. I know my onc was going over the list of what I should go on next (this was when my CEA was rising, turned out all was well) if I needed to. It happens, that's why there are other chemo regimes out there. Personally the Avastin in combo with the Oxi did wonders for my tumor shrinkage so that I finally was able to get surgery. It's finding the right combo and that may take a few.
Winter Marie0 -
Thank you!!!herdizziness said:Sandy
Of course there is reason to still hope. There are many here that when one chemo quits working after some time and they start on another. I know my onc was going over the list of what I should go on next (this was when my CEA was rising, turned out all was well) if I needed to. It happens, that's why there are other chemo regimes out there. Personally the Avastin in combo with the Oxi did wonders for my tumor shrinkage so that I finally was able to get surgery. It's finding the right combo and that may take a few.
Winter Marie
Winter Marie... that makes me feel so much better. I am just a basket case. I just hope, hope, hope, and pray, pray, pray that this surgeon will see her and take her case.
Sandy0 -
our approach to surgery
Going for surgery, I might seriously consider cimetidine after Avastin in the weeks run up to surgery. Of course, consulting the doctors. Cimetidine has some partial functions parallel to avastin (VEGF) and erbitux (EGFR), as well as immunomodulation in its antimetastatic propertes.
We've used oral cimetidine at high dose, 1600-3200 mg/day, along with low dose daily 5fu chemo (UFT-LV) and supernutrition (like Life Extension Foundation and beyond), up to and through major surgery when all the doctors thought wife was likely doubly screwed on metastasis (peritoneal seeding and massive para aortic lymph nodes). Still going strong with no visible growth or new CT features.
Although I haven't run into doctors familiar with adding cimetidine for colorectal cancer, surgeons have routinely used high dose cimetidine in surgery for over 30 years.
For high stakes surgery, we looked for a surgeon with an outstanding track record and specific expertise, anywhere. We found hope was increased by continued research and more interviews, along with improved interview skills.0 -
liver surgeontanstaafl said:our approach to surgery
Going for surgery, I might seriously consider cimetidine after Avastin in the weeks run up to surgery. Of course, consulting the doctors. Cimetidine has some partial functions parallel to avastin (VEGF) and erbitux (EGFR), as well as immunomodulation in its antimetastatic propertes.
We've used oral cimetidine at high dose, 1600-3200 mg/day, along with low dose daily 5fu chemo (UFT-LV) and supernutrition (like Life Extension Foundation and beyond), up to and through major surgery when all the doctors thought wife was likely doubly screwed on metastasis (peritoneal seeding and massive para aortic lymph nodes). Still going strong with no visible growth or new CT features.
Although I haven't run into doctors familiar with adding cimetidine for colorectal cancer, surgeons have routinely used high dose cimetidine in surgery for over 30 years.
For high stakes surgery, we looked for a surgeon with an outstanding track record and specific expertise, anywhere. We found hope was increased by continued research and more interviews, along with improved interview skills.
Sandy, sooooo glad you found out about this liver surgeon and at an NCI center. The smaller places aren't for everyone. Each case is different, and you have to go to where doctors have loads of experience.
Will be thinking of you and looking for your update -
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I have done 20 rounds of
I have done 20 rounds of avastin an 3 liver surgeries so i dont think avastin would be a problem.0 -
Of Course there's HopeVarmint5 said:Thank you!!!
Winter Marie... that makes me feel so much better. I am just a basket case. I just hope, hope, hope, and pray, pray, pray that this surgeon will see her and take her case.
Sandy
There's always hope Sandy. While we all hope to reach NED-ness like Winter Marie and others have, there's also the scenario of Living WITH Cancer which is what I've been doing for the past 8 years. While it's not always the best roommate, I've had worse in my days...
For the past few years my life has been fairly normal aside from a yearly RFA and the chemo but even the chemo is nowhere as taxing as it was at first. I still hope to be "cured" at some point and my oncologist has not given up on me either.
-p0 -
Whether or not you need a referral to see another specialist would depend on your insurance. You'll want to check with them.
In terms of your current oncologist - any dr worth his salt understands and encourages 2nd opinions. Plus it is your daughter's life, so in the scheme of things, who cares if your dr likes you? The dr isn't going to stop treatment or default on treatment because you got another opinion (he has his malpractice and ethic boards to consider, if nothing else!)
One of my consultants poo-poohed my other consults, and didn't feel that they were necessary, that his way was the only way. He is not my dr (and his plan would have been absolutely wrong for me. I probably would have been dead by now, just to insure that his prognosis and predictions were right.)
Get whatever information makes you most comfortable.0 -
HopeVarmint5 said:Folfox plateau...
Phil, yes, the Folfox apparently stopped working. So she is being switched to Folfiri with Avastin, starting tomorrow. And tomorrow, we collect the last of the scans and will overnight the package to the liver surgeon. Please tell me there's still reason to hope?????? My heart is beating out of my chest.
Sandy
Sandy,
you obviously have not truly given up hope. You are reaching out and learning and doing research...
NEVER give up hope.
I haven't been on avastin, but am on Erbitux (which is "similar" to Avastin)
the only reason i am on Erbitux instead of Avastin is it was the choice of my onc.
and, after 8 treatments i had a CT scan of my liver (which had 30 liesons) and they have ALL reduced by nearly 35-45 percent. And, there is NO new cancer and NO new cancer growth.
I have heard many of the same stories like mine, directly related to Avasin.
keep the faith, keep the hope and never let this crap beat you!
my best
Joe0 -
It's interesting howabrub said:Whether or not you need a referral to see another specialist would depend on your insurance. You'll want to check with them.
In terms of your current oncologist - any dr worth his salt understands and encourages 2nd opinions. Plus it is your daughter's life, so in the scheme of things, who cares if your dr likes you? The dr isn't going to stop treatment or default on treatment because you got another opinion (he has his malpractice and ethic boards to consider, if nothing else!)
One of my consultants poo-poohed my other consults, and didn't feel that they were necessary, that his way was the only way. He is not my dr (and his plan would have been absolutely wrong for me. I probably would have been dead by now, just to insure that his prognosis and predictions were right.)
Get whatever information makes you most comfortable.
It's interesting how different doctors opinions are....I was put on Lovenox and my oncologist said when he started me on it....probably for the rest of your life. Last time I called the pharmacy I actually had the phamacist answer the phone instead of one of the ladies that work there. He started to look on the computer and saw I've been on it for ages and started to say I probably no longer need to me on it, why am I still on this bla bla bla......He threw me for a loop and I got all tonue tied and didn't really know how to answer him. My oncs. feeling is that the cancer itself is the cause of the bloodclots. My onc. basically compared me to a diabetic who need daily insulin injections. I don't see many insulin users with the huge bumps and bruising this lovenox causes.0 -
Thanks so much, Phil...PhillieG said:Of Course there's Hope
There's always hope Sandy. While we all hope to reach NED-ness like Winter Marie and others have, there's also the scenario of Living WITH Cancer which is what I've been doing for the past 8 years. While it's not always the best roommate, I've had worse in my days...
For the past few years my life has been fairly normal aside from a yearly RFA and the chemo but even the chemo is nowhere as taxing as it was at first. I still hope to be "cured" at some point and my oncologist has not given up on me either.
-p
...One of the many things I've learned from this site and Colon Club is that there are actually people like you living with this disease, getting on with their lives. And honestly, this is something I had never heard about - people living with colon cancer and keeping it stable. In my years of experience as an RN, my work with colon cancer patients has been palliative care. So this has been my point of reference from the start of my daughter's journey, and let me tell you, it's a devastating perspective.
BUT... I'm seeing things have obviously changed since I worked with those patients 12-20 years ago. And now, people around here in my own area of rural Missouri have been placed in my path who have been CURED of stage IV colon cancer. So I am going to pursue this for my daughter and not give up. I'm sure I'll need to keep coming back here to get reassurance again and again from you and the others!
Sandy0 -
Thanks Joe...joemetz said:Hope
Sandy,
you obviously have not truly given up hope. You are reaching out and learning and doing research...
NEVER give up hope.
I haven't been on avastin, but am on Erbitux (which is "similar" to Avastin)
the only reason i am on Erbitux instead of Avastin is it was the choice of my onc.
and, after 8 treatments i had a CT scan of my liver (which had 30 liesons) and they have ALL reduced by nearly 35-45 percent. And, there is NO new cancer and NO new cancer growth.
I have heard many of the same stories like mine, directly related to Avasin.
keep the faith, keep the hope and never let this crap beat you!
my best
Joe
And that's wonderful. I wish you continued success in your battle. No, I haven't given up hope - I just need reassurance (lots of reassurance) now and then. And I think that reading and doing research helps me feel less powerless. I've learned so much here and gained much hope - I imagine it's the case for you as well. Keep up the good work!
Sandy0 -
Thanks Janie...janie1 said:liver surgeon
Sandy, sooooo glad you found out about this liver surgeon and at an NCI center. The smaller places aren't for everyone. Each case is different, and you have to go to where doctors have loads of experience.
Will be thinking of you and looking for your update -
Thanks for the support Janie! I just hope and pray he will meet with us after he reviews everything and have some suggestions for a plan. I think you are right. I hope I'll soon be giving an update that he has taken her case.
Sandy0 -
Lovenoxsmokeyjoe said:It's interesting how
It's interesting how different doctors opinions are....I was put on Lovenox and my oncologist said when he started me on it....probably for the rest of your life. Last time I called the pharmacy I actually had the phamacist answer the phone instead of one of the ladies that work there. He started to look on the computer and saw I've been on it for ages and started to say I probably no longer need to me on it, why am I still on this bla bla bla......He threw me for a loop and I got all tonue tied and didn't really know how to answer him. My oncs. feeling is that the cancer itself is the cause of the bloodclots. My onc. basically compared me to a diabetic who need daily insulin injections. I don't see many insulin users with the huge bumps and bruising this lovenox causes.
Joe, I think you need to listen to your oncologist on this one. He is right. But I know what you mean - my daughter has the same complaint about the bumps and bruises and hematomas. Maybe one day you can come off of it. Hope so!
Sandy0 -
Abrub re: referralsabrub said:Whether or not you need a referral to see another specialist would depend on your insurance. You'll want to check with them.
In terms of your current oncologist - any dr worth his salt understands and encourages 2nd opinions. Plus it is your daughter's life, so in the scheme of things, who cares if your dr likes you? The dr isn't going to stop treatment or default on treatment because you got another opinion (he has his malpractice and ethic boards to consider, if nothing else!)
One of my consultants poo-poohed my other consults, and didn't feel that they were necessary, that his way was the only way. He is not my dr (and his plan would have been absolutely wrong for me. I probably would have been dead by now, just to insure that his prognosis and predictions were right.)
Get whatever information makes you most comfortable.
Thanks, we will check with the insurance. I agree with you and fortunately, my daughter's doctor has not been unsupportive - although he has now come up with his own liver surgeon he wants them to meet with at his cancer center. Well, that's fine. We'll do that to humor him, but we are also going ahead with the one at the NCI hospital. And that's a scary thought about your original doctor - I've wondered the same thing about many doctors over the years in their treatment of patients under my care (I'm a nurse).
Sandy0 -
The pompous dr was never my drVarmint5 said:Abrub re: referrals
Thanks, we will check with the insurance. I agree with you and fortunately, my daughter's doctor has not been unsupportive - although he has now come up with his own liver surgeon he wants them to meet with at his cancer center. Well, that's fine. We'll do that to humor him, but we are also going ahead with the one at the NCI hospital. And that's a scary thought about your original doctor - I've wondered the same thing about many doctors over the years in their treatment of patients under my care (I'm a nurse).
Sandy
I had 3 consults when I was diagnosed in order to find out what to do. Fortunately, he was the 3rd, and tho he denigrated what his own colleague (same institution) had said to me a few days earlier, I recognized that he didn't know what he was talking about - he had all of his "facts" wrong (including writing up on my report that I was on meds that I had never taken in my life, that my father was dead, and other material errors.) I filed a major complaint and letter of correction with the medical center, as they would not withdraw his report. Thus, Dr. I was never my dr, but just one I consulted with.
I did go with his colleague, an absolutely wonderful oncologic colorectal surgeon with lots of experience with appendix cancer - he is brilliant, talented and compassionate.
I dread to think what might have happened if I hadn't gone for multiple opinions, and been stuck with Dr. I because he was from a major cancer center, and must know what's right.
Let us know how it goes. I've sent you my email in a private message - feel free to contact me.
Wishing you all the best,
Alice0
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