Anyone have pre-op chemo of Taxol/Carbo and then post-op chemo for positive nodes?

MissusB

Bill had his Ivor Lewis on August 29th at the University of Indiana, and the post-op path showed 5/22 positive nodes. His original staging was T3N1M0, but the post op staging was N2. When we went back in IUMed for his six week check we had hoped that they would recommend post-op chemo due to the positive nodes. They didnt, so we've been on a hunt to find a doctor that would since it's the unanimous opinion of the patients here that it's crucial in the case of positive nodes.

We saw two oncologists where we live (Kansas City area)yesterday and today, and the oncologist from the University of Kansas Cancer Center told us today that there is no data to support using the Taxol/Carbo regimen post-surgery inproves outcome, especially since it apparently didn't take care of the nodes the first time. (The tumor, however, got quite a bit smaller but it could have been the radiation.)

Has anyone had Taxol/Carbo pre-op and then post-op chemo for positive nodes, and if so, what chemo was used?

Bobs1wife

Chemo & positive nodes
Bob had Cisplatin and Irinotecan and one node that was known to be affected. At surgery the node that we knew about had been destroyed, but one that hadn't shown up on scans had scattered cancer cells. It was the only one of 27, but we had no idea until pathology was complete, as all looked good.

We were told the same thing that you are being told, that there is no evidence that post op chemo is effective, or needed. This was from our onclogist in Nebraska and at Mayo in Rochester. We had to really insist that it was our desire to do everything we could and it took a while as they wanted to to the Zelox treatment which was Zeloda (pill form of 5FU) and Oxaliplatin. Insurance didn't want to pay, so they worked at it and finally somehow got it through. So far he is NED at one year past surgery on Aug 16. Sometimes the drug companies can help out, but the oncologist office has to put forth extra effort to get it going and they are the ones who know where to go and what to do to get approval. Linda

Joel C

Bobs1wife said:

Chemo & positive nodes
Bob had Cisplatin and Irinotecan and one node that was known to be affected. At surgery the node that we knew about had been destroyed, but one that hadn't shown up on scans had scattered cancer cells. It was the only one of 27, but we had no idea until pathology was complete, as all looked good.

We were told the same thing that you are being told, that there is no evidence that post op chemo is effective, or needed. This was from our onclogist in Nebraska and at Mayo in Rochester. We had to really insist that it was our desire to do everything we could and it took a while as they wanted to to the Zelox treatment which was Zeloda (pill form of 5FU) and Oxaliplatin. Insurance didn't want to pay, so they worked at it and finally somehow got it through. So far he is NED at one year past surgery on Aug 16. Sometimes the drug companies can help out, but the oncologist office has to put forth extra effort to get it going and they are the ones who know where to go and what to do to get approval. Linda

Makes me wonder about carboplatin and taxol
Like Bill my chemo regiment pre surgery was carboplatin and taxol, pre-surgery I was staged 2B (T2N1M0). My pathology was clean so I was not offered any mop-up chemo. Nine months out I’m being offered Folfox chemotherapy regimen that incorporates folinic acid (FOL) fluorouracil (F (5FU) and Oxalipatin (OX) for a recurrence. My situation is different than Bill’s as mine is a recurrence and Bill is looking at follow up chemo to prevent a recurrence, although I know of a couple of people that are in the exact situation as Bill that are also being offered Folfox. I believe carboplatin and taxol have just recently stated to be offered as a first line pre-op treatment for EC. From what I can see it seems that people whose initial pre-op treatment is carboplatin and taxol compared to say 5FU have more incidences of positive pathology results and recurrence (just my observation but it makes me wonder).
Good Luck,
Joel

MissusB

Joel C said:

Makes me wonder about carboplatin and taxol
Like Bill my chemo regiment pre surgery was carboplatin and taxol, pre-surgery I was staged 2B (T2N1M0). My pathology was clean so I was not offered any mop-up chemo. Nine months out I’m being offered Folfox chemotherapy regimen that incorporates folinic acid (FOL) fluorouracil (F (5FU) and Oxalipatin (OX) for a recurrence. My situation is different than Bill’s as mine is a recurrence and Bill is looking at follow up chemo to prevent a recurrence, although I know of a couple of people that are in the exact situation as Bill that are also being offered Folfox. I believe carboplatin and taxol have just recently stated to be offered as a first line pre-op treatment for EC. From what I can see it seems that people whose initial pre-op treatment is carboplatin and taxol compared to say 5FU have more incidences of positive pathology results and recurrence (just my observation but it makes me wonder).
Good Luck,
Joel

Linda and Joel -
Linda - who did you see at Mayo? I've been given the name of Dr. Joseph Ruben.

Joel - At what centers were the people you know offered Folfox?

I don't think Carbo/Taxol is what the oncologist at IUMed usually uses - neglected to tell you Bill had a liver transplant over three years ago, and I think that was a concern althogh he has done beautifully since and there have been no concerns. Oncologist said this was in no way an inferior regimen, though.

Thanks!

Joel C

MissusB said:

Linda and Joel -
Linda - who did you see at Mayo? I've been given the name of Dr. Joseph Ruben.

Joel - At what centers were the people you know offered Folfox?

I don't think Carbo/Taxol is what the oncologist at IUMed usually uses - neglected to tell you Bill had a liver transplant over three years ago, and I think that was a concern althogh he has done beautifully since and there have been no concerns. Oncologist said this was in no way an inferior regimen, though.

Thanks!

Hi MissusB
One was Fox Chase in Philadelphia and I don’t remember where the other was but read it on this site.
In my case the doctors at Dana Farber in Boston are recommending six rounds of FolFox given in two week cycles with 28 rounds of radiation.

Joel

MissusB

Joel C said:

Hi MissusB
One was Fox Chase in Philadelphia and I don’t remember where the other was but read it on this site.
In my case the doctors at Dana Farber in Boston are recommending six rounds of FolFox given in two week cycles with 28 rounds of radiation.

Joel

I apologize for not introducing myself -
I'm Kim. Thank you both for your help. Joel - will search the site for any info about post-op Folfox.

AngieD

MissusB said:

I apologize for not introducing myself -
I'm Kim. Thank you both for your help. Joel - will search the site for any info about post-op Folfox.

Hi, neighbor, Kim
I have no experience with pre/post surgery treatment. My husband was diagnosed in June with Stage IV. However, if you are looking for someone in the KC area to help you with what you feel is the right path, I can certainly recommend Lawrence Cancer Center (and especially oncologists Soule and Stein) in Lawrence, KS. My husband has been treated there with Oxaliplatin and Xeloda and is having good results. We went to Univ KS Med Ctr Cancer Ctr for a second opinion and were very happy we had the resources in Lawrence that we do.
Angie

NikiMo

MissusB said:

Linda and Joel -
Linda - who did you see at Mayo? I've been given the name of Dr. Joseph Ruben.

Joel - At what centers were the people you know offered Folfox?

I don't think Carbo/Taxol is what the oncologist at IUMed usually uses - neglected to tell you Bill had a liver transplant over three years ago, and I think that was a concern althogh he has done beautifully since and there have been no concerns. Oncologist said this was in no way an inferior regimen, though.

Thanks!

FOLFOX
Kim,

I had responded before about post op chemo. My husband is receiving FOLFOX at University of Pennsylvania, he did 5 rounds before surgery with concurrent radiation had a clean pathology report and he is now doing 8 treatments. Post op chemo is more challenging, Jeff started on Tuesday and is not feeling well. He breezed through the first time, but now he has a very different physiology and is being affected by that.

Best of luck,

Niki
Wife to Jeff T2N1M0

chemosmoker

NikiMo said:

FOLFOX
Kim,

I had responded before about post op chemo. My husband is receiving FOLFOX at University of Pennsylvania, he did 5 rounds before surgery with concurrent radiation had a clean pathology report and he is now doing 8 treatments. Post op chemo is more challenging, Jeff started on Tuesday and is not feeling well. He breezed through the first time, but now he has a very different physiology and is being affected by that.

Best of luck,

Niki
Wife to Jeff T2N1M0

Prayers for Jeff and for you, too...
Niki,
Sorry to jump in on this post, but we are certainly wanting you to know that we are praying hard for Jeff at this time and that he can get through his post-op chemo okay.

I can only imagine how rough this must be for him after surviving such a huge life-changing operation and now to do more chemo. We are here with you and thinking about Jeff, and you.
I hope all goes well. He is really a trooper and I am so impressed with his courage and please tell him this for me.

God bless you both.
Eric

TerryV

NikiMo said:

FOLFOX
Kim,

I had responded before about post op chemo. My husband is receiving FOLFOX at University of Pennsylvania, he did 5 rounds before surgery with concurrent radiation had a clean pathology report and he is now doing 8 treatments. Post op chemo is more challenging, Jeff started on Tuesday and is not feeling well. He breezed through the first time, but now he has a very different physiology and is being affected by that.

Best of luck,

Niki
Wife to Jeff T2N1M0

Virtual hugs to you & Jeff, Niki
I was wondering if the new plumbing would complain a bit louder with post surgery chemo. Sorry to hear that it is. You guys are in our thoughts and prayers!

You know we are here for you, Niki. Don't hesitate to shout when you need a shoulder or just a hand.

~ apologies for hijacking the thread ~

Terry

MissusB

TerryV said:

Virtual hugs to you & Jeff, Niki
I was wondering if the new plumbing would complain a bit louder with post surgery chemo. Sorry to hear that it is. You guys are in our thoughts and prayers!

You know we are here for you, Niki. Don't hesitate to shout when you need a shoulder or just a hand.

~ apologies for hijacking the thread ~

Terry

Hi Niki -
Read in the other threads that Jeff is having a hard time with his post-op chemo. I'm so sorry...you and everyone else on this message board have been in my prayers. Is it only me, or is it hard to remember what "normal" was before the diagnosis?

I looked back over your replies to my two threads, and I didn't see what kind of chemo Jeff had before his surgery. We've been to two additional doctors and we were led to believe that the same chemo (Taxol/Carbo) would have to be given to Bill post-op as well, and there are no studies showing benefits when there are positive nodes. All three doctors are just more or less telling us that it's going to come back and we'll just have to wait to deal with it then. Pretty distressing.

Thanks for anything anyone has to offer ~

NikiMo

MissusB said:

Hi Niki -
Read in the other threads that Jeff is having a hard time with his post-op chemo. I'm so sorry...you and everyone else on this message board have been in my prayers. Is it only me, or is it hard to remember what "normal" was before the diagnosis?

I looked back over your replies to my two threads, and I didn't see what kind of chemo Jeff had before his surgery. We've been to two additional doctors and we were led to believe that the same chemo (Taxol/Carbo) would have to be given to Bill post-op as well, and there are no studies showing benefits when there are positive nodes. All three doctors are just more or less telling us that it's going to come back and we'll just have to wait to deal with it then. Pretty distressing.

Thanks for anything anyone has to offer ~

FOLFOX before and after
Thank you for keeping all of us in your prayers, Jeff is having more of a challenge this time but he will get through it! Jeff had FOLFOX before and after surgery. I am sorry you are being given that disheartening news. I am shocked that you are not being offered post-op chemo. I would go to a fourth or fifth doctor. There is another gentleman on this board who had the surgery on September 8th, he had a few nodes come back positive and he has said he will be starting chemo. His username is JThomas223.

I hope you can find the medical care required,

Niki

MissusB

NikiMo said:

FOLFOX before and after
Thank you for keeping all of us in your prayers, Jeff is having more of a challenge this time but he will get through it! Jeff had FOLFOX before and after surgery. I am sorry you are being given that disheartening news. I am shocked that you are not being offered post-op chemo. I would go to a fourth or fifth doctor. There is another gentleman on this board who had the surgery on September 8th, he had a few nodes come back positive and he has said he will be starting chemo. His username is JThomas223.

I hope you can find the medical care required,

Niki

Hi Niki...I can't find
JThomas223. I did a member search and also searched the message board content and the only "JThomas223" that was a hit was the reference in your last post. Is it possible he is no longer a member? BTW, thanks for the info! Hope today is a better one for you both!

MissusB

MissusB said:

Hi Niki...I can't find
JThomas223. I did a member search and also searched the message board content and the only "JThomas223" that was a hit was the reference in your last post. Is it possible he is no longer a member? BTW, thanks for the info! Hope today is a better one for you both!

Ooops! Found him..
...JThomas233. Thanks again!

NikiMo

MissusB said:

Hi Niki...I can't find
JThomas223. I did a member search and also searched the message board content and the only "JThomas223" that was a hit was the reference in your last post. Is it possible he is no longer a member? BTW, thanks for the info! Hope today is a better one for you both!

Wrong name sorry.
His user name is JThomas233, he just posted on 10/20. I believe he had the same chemo too, carbo and taxol. Jeff is feeling better, but now he ate too much and feels nauseas...it is a never ending balancing act.

Niki

mlbrooks852

Folfox
We were also told by the oncologist at KU that she didnt think post op chemo would be recommended, but that she would do more research........RED FLAG....... We felt if she needed to do more research that she just might not be the oncologist that we needed to see. We went home and called Cancer Treatment Centers of America. I know there's a lot of negativity towards them on this discussion board, but we have found them to be just what we needed. They are professional and very geared towards putting the patient first. Dale had five rounds of Folfox post surgery. His scans and follow up treatment so far have been clear. Original diagnosis was in Jan 2010.

MissusB

mlbrooks852 said:

Folfox
We were also told by the oncologist at KU that she didnt think post op chemo would be recommended, but that she would do more research........RED FLAG....... We felt if she needed to do more research that she just might not be the oncologist that we needed to see. We went home and called Cancer Treatment Centers of America. I know there's a lot of negativity towards them on this discussion board, but we have found them to be just what we needed. They are professional and very geared towards putting the patient first. Dale had five rounds of Folfox post surgery. His scans and follow up treatment so far have been clear. Original diagnosis was in Jan 2010.

mlbrooks852 -
Thank you so much! How did your husband do with the FOLFOX, and which CTCA did you go to? BTW - do you remember which oncologist you saw at KU? We saw Dr. Joaquina Baranda.

Bill was diagnosed T3N1M0 orignally, but with the 5/22 positive nodes he was restaged to an N2. His resection was R0, though...but aren't a good many of them? I'm still learning. Did Dale have positive nodes?

mlbrooks852

MissusB said:

mlbrooks852 -
Thank you so much! How did your husband do with the FOLFOX, and which CTCA did you go to? BTW - do you remember which oncologist you saw at KU? We saw Dr. Joaquina Baranda.

Bill was diagnosed T3N1M0 orignally, but with the 5/22 positive nodes he was restaged to an N2. His resection was R0, though...but aren't a good many of them? I'm still learning. Did Dale have positive nodes?

Yes, it was Dr Baranda. Our
Yes, it was Dr Baranda. Our visit with her was disappointing, with her quoting results of trials in Japan. The appointment had been scheduled for weeks and she was not prepared for our visit. She had not read the chart and had no idea where Dales cancer was, or what stage he was. All she wanted to do was dazzle us with her vast knowledge of clinical trials in Japan. She also told us she would be happy to arrange "palliative"care. At that point in the visit, we decided it was time for us to be done. Tulsa is the cancer center that we went to. Dr Pollock is his oncologist. At the cancer center there, the team makes sure that they are all informed. You dont have to tell your story six times. They know you, know your circumstances, and we have been very satisfied with Dales care there. Dale had 3 out of 18 nodes positive. He had no chemo before the surgery because they thought there was no lymph node involvement. He did fair with the chemo. It was hard, but we made it thru it. Dale has other health issues in addition to the cancer, including an affinity for lots of beer every day. I feel he would have done much better post surgery and chemo without the alcohol, but I have given up that battle. The alcohol is stronger than me. I just try to focus on loving him and being there for him. I would be happy to talk with you. If you want my phone number just Private Message me. We live in Salem, Mo now, which is our hometown, but we were near KC when he had the diagnosis and surgery. That's how we ended up at KU.

MissusB

mlbrooks852 said:

Yes, it was Dr Baranda. Our
Yes, it was Dr Baranda. Our visit with her was disappointing, with her quoting results of trials in Japan. The appointment had been scheduled for weeks and she was not prepared for our visit. She had not read the chart and had no idea where Dales cancer was, or what stage he was. All she wanted to do was dazzle us with her vast knowledge of clinical trials in Japan. She also told us she would be happy to arrange "palliative"care. At that point in the visit, we decided it was time for us to be done. Tulsa is the cancer center that we went to. Dr Pollock is his oncologist. At the cancer center there, the team makes sure that they are all informed. You dont have to tell your story six times. They know you, know your circumstances, and we have been very satisfied with Dales care there. Dale had 3 out of 18 nodes positive. He had no chemo before the surgery because they thought there was no lymph node involvement. He did fair with the chemo. It was hard, but we made it thru it. Dale has other health issues in addition to the cancer, including an affinity for lots of beer every day. I feel he would have done much better post surgery and chemo without the alcohol, but I have given up that battle. The alcohol is stronger than me. I just try to focus on loving him and being there for him. I would be happy to talk with you. If you want my phone number just Private Message me. We live in Salem, Mo now, which is our hometown, but we were near KC when he had the diagnosis and surgery. That's how we ended up at KU.

Just PM'd you...
...thank you so much for help!

Cora11

Joel C said:

Makes me wonder about carboplatin and taxol
Like Bill my chemo regiment pre surgery was carboplatin and taxol, pre-surgery I was staged 2B (T2N1M0). My pathology was clean so I was not offered any mop-up chemo. Nine months out I’m being offered Folfox chemotherapy regimen that incorporates folinic acid (FOL) fluorouracil (F (5FU) and Oxalipatin (OX) for a recurrence. My situation is different than Bill’s as mine is a recurrence and Bill is looking at follow up chemo to prevent a recurrence, although I know of a couple of people that are in the exact situation as Bill that are also being offered Folfox. I believe carboplatin and taxol have just recently stated to be offered as a first line pre-op treatment for EC. From what I can see it seems that people whose initial pre-op treatment is carboplatin and taxol compared to say 5FU have more incidences of positive pathology results and recurrence (just my observation but it makes me wonder).
Good Luck,
Joel

comment on taxol carboplatin
from the latest NCCN guidelines the taxol/carbo is considered first line these days and sloan kettering, Northwestern is using it and I think there is literature out now favoring taxol/carbo as the newer option. If you were interested in getting that literature you could look up Al Bensen at Northwestern and Ilison at Sloan Kettering who are promoting the Taxol/Carboplatin protocol as the first offense.

Cora

MissusB

Cora11 said:

comment on taxol carboplatin
from the latest NCCN guidelines the taxol/carbo is considered first line these days and sloan kettering, Northwestern is using it and I think there is literature out now favoring taxol/carbo as the newer option. If you were interested in getting that literature you could look up Al Bensen at Northwestern and Ilison at Sloan Kettering who are promoting the Taxol/Carboplatin protocol as the first offense.

Cora

Cora11 - thank you!
This is very helpful...will get started with the research today!