Just left M D Anderson, and am very confused
I just left MD Anderson and am very upset at the conflicting advice I got. First I saw a radiologist that said there was no need for radiation since I had had the surgery and there was nothing to radiate, but that the medical team had agreed to chemo. Then I saw the head of the oncology department that said no chemo, that it would do me no good, and they don't know if I have any cancer cells floating around, and if there are some and they land on the liver, or bones, or lungs or where ever they may land, then there is nothing they can do about it. Then I saw my surgeon who was suprised that I was not going to get chemo, since it was agreed during the conference. He advised me to go elsewhere, find a thoracic oncologist and get chemo. He suggested a doctor in New Orleans since I live in Louisiana or go to the Mayo Clinic. I asked if he presented it to the medical team again, then maybe everyone would get on the same page. He said no one will go against this doctor since he is the head of the department. So now I am going to have to find a doctor who will agree to give me some chemo. Has anyone had this happen to them, and what did they do about it?
Cathy
Comments
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Follow-up chemo
Hi Cathy,
My husband, Jim, is a patient at MD Anderson too. Who is your Oncologist? You can contact the patient advocate and see if they can get the surgeon & oncologist to agree to follow-up chemo. We are not at that point. Still doing proton/chemo for a few more weeks. Nausea hit today for the first time. Hope it doesn't last. He's coughing quite a bit too. Let us know how you come out of this. If you want my personal email, let me know.
Sally0 -
Call your patient advocate NOW
And insist on a meeting with your team--all of them and YOU. And get them on the same page.
MD Anderson does not like to do cleanup chemo normally, I do know this. If it was agreed on in the conference though, it should be done and you get some say in this.
No hospital is perfect and no doc is perfect (though I love MD Anderson, I know that I have sometimes had to fight for things...) and if you can't get treatment you feel you need--then go elsewhere.
Keep us updated.
So what did your pathology report look like? Did they find something? I know you probably told me but I am so terrible with my memory these days...
Betty0 -
Clean chemoBetty in Vegas said:Call your patient advocate NOW
And insist on a meeting with your team--all of them and YOU. And get them on the same page.
MD Anderson does not like to do cleanup chemo normally, I do know this. If it was agreed on in the conference though, it should be done and you get some say in this.
No hospital is perfect and no doc is perfect (though I love MD Anderson, I know that I have sometimes had to fight for things...) and if you can't get treatment you feel you need--then go elsewhere.
Keep us updated.
So what did your pathology report look like? Did they find something? I know you probably told me but I am so terrible with my memory these days...
Betty
Betty, why do they not like to cleanup chemo? They found one lymph node positive. It was a suprise to them. They said normally they do radiation and chemo before surgery and since in my case they did not think that was needed, and there is nothing there to radiate now, and Dr, Ajani said chemo would do me no good. He was very confusing. I just left a message for the patient adovacate.
Cathy0 -
Cathy, I also have Dr. Ajani
Cathy, I also have Dr. Ajani and was dx T3N1Mo 2 yrs ago. Went through prop chemo/rad and then IL. Out of about 40 nodes taken, I had 1 postive. As for as clean-up chemo, there is no proof that it does anything. I have read many studies, and there is not one that recommends chemo after surgery. However, they may do some here and there, but it wears on most pts so bad, that the pt usually does poorly unless he/she is in top physical shape.
Was the surgery done at MD Anderson? A little tid bit! If everything was not done at Anderson from the beginning, you will get a run around sometimes. This came from my surgeon there. They want you from the beginning so they can study and find ways to beat this stuff. THEY ARE NOT A 2ND OPINION HOSPITAL AND THAT CAME FROM A TOP SURGEON THERE.0 -
i dont knowBetty in Vegas said:Call your patient advocate NOW
And insist on a meeting with your team--all of them and YOU. And get them on the same page.
MD Anderson does not like to do cleanup chemo normally, I do know this. If it was agreed on in the conference though, it should be done and you get some say in this.
No hospital is perfect and no doc is perfect (though I love MD Anderson, I know that I have sometimes had to fight for things...) and if you can't get treatment you feel you need--then go elsewhere.
Keep us updated.
So what did your pathology report look like? Did they find something? I know you probably told me but I am so terrible with my memory these days...
Betty
But some get it daphne did we did...and the magic study showed it increased lifespan... i know daphne had dr fan...and one node.0 -
i dont knowBetty in Vegas said:Call your patient advocate NOW
And insist on a meeting with your team--all of them and YOU. And get them on the same page.
MD Anderson does not like to do cleanup chemo normally, I do know this. If it was agreed on in the conference though, it should be done and you get some say in this.
No hospital is perfect and no doc is perfect (though I love MD Anderson, I know that I have sometimes had to fight for things...) and if you can't get treatment you feel you need--then go elsewhere.
Keep us updated.
So what did your pathology report look like? Did they find something? I know you probably told me but I am so terrible with my memory these days...
Betty
But some get it daphne did we did...and the magic study showed it increased lifespan... i know daphne had dr fan...and one node.0 -
oops double postBetty in Vegas said:Call your patient advocate NOW
And insist on a meeting with your team--all of them and YOU. And get them on the same page.
MD Anderson does not like to do cleanup chemo normally, I do know this. If it was agreed on in the conference though, it should be done and you get some say in this.
No hospital is perfect and no doc is perfect (though I love MD Anderson, I know that I have sometimes had to fight for things...) and if you can't get treatment you feel you need--then go elsewhere.
Keep us updated.
So what did your pathology report look like? Did they find something? I know you probably told me but I am so terrible with my memory these days...
Betty
.0 -
clean up chemocclambert said:Clean chemo
Betty, why do they not like to cleanup chemo? They found one lymph node positive. It was a suprise to them. They said normally they do radiation and chemo before surgery and since in my case they did not think that was needed, and there is nothing there to radiate now, and Dr, Ajani said chemo would do me no good. He was very confusing. I just left a message for the patient adovacate.
Cathy
Hi,
I just had the full surgery on 12/8 and after surgery they told me they found one positive lymph node a proximal one that had been near the tumor. Nothing was left of my tumor and my onc dr decided he wanted to do cleanup chemo even though the bad node was removed. He said though that many drs do not believe in doing it and would not be faulted by anyone if they did not, but I am so happy he is doing it. Please get second opinions and if they won't do it there find someone who will. As my dr said, he does not want to see me next year if he did not do it and find out that I have more cancer. He said no guarantees of a complete cure but why not try to do the most he can to prevent more spread. take care and hope they listen to you.
Donna700 -
Call your patient advocate NOWBetty in Vegas said:Call your patient advocate NOW
And insist on a meeting with your team--all of them and YOU. And get them on the same page.
MD Anderson does not like to do cleanup chemo normally, I do know this. If it was agreed on in the conference though, it should be done and you get some say in this.
No hospital is perfect and no doc is perfect (though I love MD Anderson, I know that I have sometimes had to fight for things...) and if you can't get treatment you feel you need--then go elsewhere.
Keep us updated.
So what did your pathology report look like? Did they find something? I know you probably told me but I am so terrible with my memory these days...
Betty
Hi Betty
I called the patient advocate and told her the problem with Dr. Ajani. About an hour later he called me back and said that studies of 5000 people had not indicated that chemo would do any good. He said that I had a 40% chance of it returning. He also said that if I wanted to put myself through chemo to have my local oncologist to call him and he would advise him on what chemo to give. Could you e-mail or reply with the chemo that Layne is getting
Thanks
Cathy0 -
Hi Skyhawkskyhawk said:Cathy, I also have Dr. Ajani
Cathy, I also have Dr. Ajani and was dx T3N1Mo 2 yrs ago. Went through prop chemo/rad and then IL. Out of about 40 nodes taken, I had 1 postive. As for as clean-up chemo, there is no proof that it does anything. I have read many studies, and there is not one that recommends chemo after surgery. However, they may do some here and there, but it wears on most pts so bad, that the pt usually does poorly unless he/she is in top physical shape.
Was the surgery done at MD Anderson? A little tid bit! If everything was not done at Anderson from the beginning, you will get a run around sometimes. This came from my surgeon there. They want you from the beginning so they can study and find ways to beat this stuff. THEY ARE NOT A 2ND OPINION HOSPITAL AND THAT CAME FROM A TOP SURGEON THERE.
I had everything
Hi Skyhawk
I had everything done at MD Anderson. They were suprised with the postive lymph node discovered during the surgery. I assume that you did not have clean up chemo, and are cancer free. Is that right?
I talked to Dr. Ajani today, and was told if I want chemo he will talk to my local oncologist to tell him what to do. Problem is, I don't have a local oncologist, since I went to Houston as soon as I was diagnosed. So now I am having to find a oncologist to do this, then decide if I should do it.
I went to Houston praying that I would not have chemo and left begging for chemo. I just don't know which way to go. Dr. Ajani said there is a 40 % chance it will come back somewhere else. Yesterday he said that if it does come back, then there is noting they can do. Today he said if it comes back then we will treat it. I wish he would get the story straight.
Thanks for your reply and please feel free to email me with anything else you can think of that I might need to know. cclambert@eatel.net
Cathy0 -
Cathy,
I had chemo and
Cathy,
I had chemo and radiation BEFORE surgery, in Cincinnati (University of Cincinnati). I understood that was protocol. And, interestingly, my oncologist had studied at MD Anderson!!!!
They scanned me FOLLOWING surgery and said all was ok...
Did you have anything BEFORE surgery???
-David
Hillsboro, OH0 -
Yes, I have heard the same thingcclambert said:Hi Skyhawk
I had everything
Hi Skyhawk
I had everything done at MD Anderson. They were suprised with the postive lymph node discovered during the surgery. I assume that you did not have clean up chemo, and are cancer free. Is that right?
I talked to Dr. Ajani today, and was told if I want chemo he will talk to my local oncologist to tell him what to do. Problem is, I don't have a local oncologist, since I went to Houston as soon as I was diagnosed. So now I am having to find a oncologist to do this, then decide if I should do it.
I went to Houston praying that I would not have chemo and left begging for chemo. I just don't know which way to go. Dr. Ajani said there is a 40 % chance it will come back somewhere else. Yesterday he said that if it does come back, then there is noting they can do. Today he said if it comes back then we will treat it. I wish he would get the story straight.
Thanks for your reply and please feel free to email me with anything else you can think of that I might need to know. cclambert@eatel.net
Cathy
If it comes back, there is nothing we can do and then the next day if it comes back we will fight it. Well which is it? UGHHH I hate the double speak. And I have heard SO MANY get those answers!
I would say find a good local onc. Call a local cancer support group and go and ask people there WHO IS GOOD. Layne is on EOX right now. I am fighting to get him Erbitux, too.
If chemo doesn't work, why do it at all? Why do it before? See, that makes no sense. So I would say....if you feel in your heart you need it, fight for it. Your body has a way of telling you what you need.
Listen to your own body.
Keep me updated.
Betty0 -
Betty,Betty in Vegas said:Yes, I have heard the same thing
If it comes back, there is nothing we can do and then the next day if it comes back we will fight it. Well which is it? UGHHH I hate the double speak. And I have heard SO MANY get those answers!
I would say find a good local onc. Call a local cancer support group and go and ask people there WHO IS GOOD. Layne is on EOX right now. I am fighting to get him Erbitux, too.
If chemo doesn't work, why do it at all? Why do it before? See, that makes no sense. So I would say....if you feel in your heart you need it, fight for it. Your body has a way of telling you what you need.
Listen to your own body.
Keep me updated.
Betty
We are fighting to
Betty,
We are fighting to get my Dad Erbitux as well --- here is the website for Bristol Meyers Squibb http://www.destinationaccess.com/index.aspx?emscontentpage=erbitux-prior
to try and get the drug at a reduced price since insurance won't pay for it if you aren't in the Stage III clinical trial.
They changed the chemo agent in Phase III trial to Citoplatin from Carboplatin and my Dad can not tolerate the citoplatin because the side effects are every bad for diabetics and individuals with hearing loss. Interestingly in the Phase I and II trials they used Carboplatin, which can be tolerated by diabetics.
Also, it appears that the FDA and some of the literature (As well as Bristol Myers Squibb) are recommending that the patient get an EGFR Test (Epidermal Growth Factor Receptor test) to determine if the tumor has the necessary receptors to allow the Erbitux to work. See the site explaining the test. http://www.labtestsonline.org/understanding/analytes/egfr_her1/test.html
The EGFR test allows the doctor to assess the genetic charcteristics of the tumor and see if Erbitux might work to stop the agreesive growth of the tumor. There is alot more information our there just wanted to give you some of the things we have been digging up. Keep in touch and let me know how you are doing.
One final thing the company in Germany (Merck -not the US company) will ship the drug to the US to a cancer center for use with a prescription from a doctor. It costs about $8,000 and isn't covered by insurance.
Best, Cindy0 -
hi Daviddwhite0002 said:Cathy,
I had chemo and
Cathy,
I had chemo and radiation BEFORE surgery, in Cincinnati (University of Cincinnati). I understood that was protocol. And, interestingly, my oncologist had studied at MD Anderson!!!!
They scanned me FOLLOWING surgery and said all was ok...
Did you have anything BEFORE surgery???
-David
Hillsboro, OH
No I did not have
hi David
No I did not have anything before surgery except a endoscopic mucosal resection which they thought would do the job, but found that the cancer was in the submucosal so that meant I needed the surgery. The discovery of the one lymph node was a big surprise to everyone apparently. Now I am going back and forth in my mind of whether to do the chemo or not. If it won't do any good, why do it? On the other hand, how do I know it won't do any good. I think I am going to have the chemo just in case it will do some good. I thought that is what chemo is for, to kill any stray cells floating around. I understand that it doesn't do much for a tumor and that is why they do radiation on tumors along with chemo to catch the loose ones. I just wish there was a clear answer for this.
Cathy0 -
another thoughtcclambert said:hi David
No I did not have
hi David
No I did not have anything before surgery except a endoscopic mucosal resection which they thought would do the job, but found that the cancer was in the submucosal so that meant I needed the surgery. The discovery of the one lymph node was a big surprise to everyone apparently. Now I am going back and forth in my mind of whether to do the chemo or not. If it won't do any good, why do it? On the other hand, how do I know it won't do any good. I think I am going to have the chemo just in case it will do some good. I thought that is what chemo is for, to kill any stray cells floating around. I understand that it doesn't do much for a tumor and that is why they do radiation on tumors along with chemo to catch the loose ones. I just wish there was a clear answer for this.
Cathy
I am not sure of the time frame on all of this---but doesn't chemo keep working or a period of time (?maybe 30 days or so) after the last treatment?)----so maybe 1 lymph node is the last one to go down?? it sounds naive---but now I see that more chemo is not always better. It is so hard-not knowing whose opinions to trust..
Having seen my dad go through chemo and do great for 4 weeks---then fail off the cliff for the last week.... I am not sure extra chemo is always the best bet..
good luck
Kim0 -
I don't think she had chemo prior to surgeryK_ann1015 said:another thought
I am not sure of the time frame on all of this---but doesn't chemo keep working or a period of time (?maybe 30 days or so) after the last treatment?)----so maybe 1 lymph node is the last one to go down?? it sounds naive---but now I see that more chemo is not always better. It is so hard-not knowing whose opinions to trust..
Having seen my dad go through chemo and do great for 4 weeks---then fail off the cliff for the last week.... I am not sure extra chemo is always the best bet..
good luck
Kim
So this would be her first... which is what makes it even more important.0 -
I did not have chemo beforeBetty in Vegas said:I don't think she had chemo prior to surgery
So this would be her first... which is what makes it even more important.
I did not have chemo before surgery. The postive lymph node did not show up until it was removed and tested. I have an appointment with an oncologist locally on March 9th for a second opinion. Dr. Ajani did say if I really wanted chemo to have an oncologist from here call him. Now just waiting for the appointment.0 -
This comment has been removed by the Moderatorcclambert said:I did not have chemo before
I did not have chemo before surgery. The postive lymph node did not show up until it was removed and tested. I have an appointment with an oncologist locally on March 9th for a second opinion. Dr. Ajani did say if I really wanted chemo to have an oncologist from here call him. Now just waiting for the appointment.0 -
By the way K Anncclambert said:I did not have chemo before
I did not have chemo before surgery. The postive lymph node did not show up until it was removed and tested. I have an appointment with an oncologist locally on March 9th for a second opinion. Dr. Ajani did say if I really wanted chemo to have an oncologist from here call him. Now just waiting for the appointment.
Did that last post of mine come out rude? I re-read it and felt like it did. I didn't mean for it to. I meant to just say that I don't think everyone knows Cathy didn't have any chemo before the surgery....
My foot goes in my mouth so much!
Betty0
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