My Husband's Medical Oncologist Just Called...WTH

cbcardb12
cbcardb12 Member Posts: 84
edited March 2014 in Colorectal Cancer #1
I don't post very often, but this was too important not to share the latest. So, some of you may know that my husband was diagnosed in March of this year with stage IV rectal cancer with numerous mets to his liver. He started out on Folfiri w/Avastin. There was progression. He was switched to Folfox w/Avastin, which he just completed, and which kept the tumors stable. At his last treatment, he was told that the next course of action was the Erbitux. My husband is very concerned about the side effects, and he has also started feeling as though the dr. has no imagination, and would try nothing past the chemo drugs he is on. He was concerned that "stable" was the dr's only goal. So last week, we set up an appointment at Vanderbilt-Ingram Cancer Center for 12/18/09. Boy, are we glad we did. His dr. called tonight to find out why my husband didn't want to take the Erbitux. My husband gave his reasons, and the dr. said that if he didn't take the Erbitux, there was nothing else he could do. Remember that at the beginning the dr. stated that my husband had 2 years of "quality" life left. He said that my husband would be on Erbitux for 3 to 6 months. How does he get 2 years of quality life after the Erbitux is completed? He said that the only thing left was clinical trials. My husband told him that we are going to Vanderbilt, and the dr. assumed it was for clinical trials & told us that we could get better clinical trials at Emory (the dr. is affiliated with Emory) so what did we expect.

From the very beginning on this discussion board, everyone has told us to get 2nd, 3rd or 4th opinions until we find someone willing to work towards a cure, not just to keep it stable for 2 years. It really upsets me that his dr. doesn't seem to want to try to cure him. CB (my husband) has responed so well to all treatments. His CEA level dropped from a high of well over 600 down to 9! He was had no problems with his white blood counts, and have had virtually no side effects to the chemo, even Oxy. Why won't he try other treatments? Emory was just designated a NCI cancer center, but we were told point blank that their real claim to fame are their clinical trials!! I kind of feel like we are being pushed out to start one of their trials.

I thought we would have a lot more time before that was the only option. Has anyone else been told this soon in the journey that clinical trials is the last and only option? Will we get the same thing at Vanderbilt? Where else to try if that doesn't work?

Thanks,

Carolyn

Comments

  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #2
    Vanderbilt-Ingram Cancer Center
    Carolyn, I was a rectal cancer patient that wasn't satisfied with what was going to happen to me here in my home state. I opted to call after being diagnosed with rectal cancer to Vanderbilt and spoke with a Dr Alan Herline's Nurse Practicioner and was asked if I had been diagnosed yet. I told her yes and that was on Friday and on the following Monday I was there in his office being examined and pre briefed at what this journey was going to entail. He was kind considerate and very sharp. He doesn't deal in percentages . He deals with trying to regain as much normalcy back for the person he is working with. I did my Radiation/Chemo treatments here at my city for we have a great Rad/Chemo bldg and setup . The cancer surgeons at Vanderbilt work as a team to surmise the best possible route to take based on all of their career based opinions. These men and women are simply the best. They are very kind as are the complete hospital staff down to the janitors all come with a smile and a courteous gesture. In my own opinion I think that your Dr had come to the end of his expertise and you definitely need to get out of Dodge and go somewhere else. You will find hopefully a lot of hope at Vanderbilt. Yes they are a teaching hospital and yes they do have clinical trials and yes they are #14 in the nation for cancer treatment and care, and yes I'll put my treatment and care up against any other Drs care as far as knowledge and patient responsibility. He will make you feel good as soon as you meet them . They will also do everything they possibly can to return as much normalcy to him as soon as they realistically can. If not completely satisfied then go for a third opinion, at #1 in the nation MD Anderson........just my opinion, but I know you are making the right move.....I don't think you will regret it either when you get there.....

    The only part of the whole ordeal that wasn't very cordial at Vandy was when they took lab work. I guess there are so many patients there everyday the have a lab that actually takes patients 5 at a time and places them in small stalls to draw blood...LOL..Its kind of like a cattle sale.....They call out 5 names and then the next 5 and so on .. It is kind of funny though....If you need any other assistance with Vandy or getting around simply post up or PM me with any questions and I will be more than happy to help you with them...The also have a web site of their own with all of the surgeons there...Good Luck and I'll look for good results to come from the trip there...and where are you from ?

    .....Buzzard........
  • Shayenne
    Shayenne Member Posts: 2,342
    #3
    Buzzard said:

    Vanderbilt-Ingram Cancer Center
    Carolyn, I was a rectal cancer patient that wasn't satisfied with what was going to happen to me here in my home state. I opted to call after being diagnosed with rectal cancer to Vanderbilt and spoke with a Dr Alan Herline's Nurse Practicioner and was asked if I had been diagnosed yet. I told her yes and that was on Friday and on the following Monday I was there in his office being examined and pre briefed at what this journey was going to entail. He was kind considerate and very sharp. He doesn't deal in percentages . He deals with trying to regain as much normalcy back for the person he is working with. I did my Radiation/Chemo treatments here at my city for we have a great Rad/Chemo bldg and setup . The cancer surgeons at Vanderbilt work as a team to surmise the best possible route to take based on all of their career based opinions. These men and women are simply the best. They are very kind as are the complete hospital staff down to the janitors all come with a smile and a courteous gesture. In my own opinion I think that your Dr had come to the end of his expertise and you definitely need to get out of Dodge and go somewhere else. You will find hopefully a lot of hope at Vanderbilt. Yes they are a teaching hospital and yes they do have clinical trials and yes they are #14 in the nation for cancer treatment and care, and yes I'll put my treatment and care up against any other Drs care as far as knowledge and patient responsibility. He will make you feel good as soon as you meet them . They will also do everything they possibly can to return as much normalcy to him as soon as they realistically can. If not completely satisfied then go for a third opinion, at #1 in the nation MD Anderson........just my opinion, but I know you are making the right move.....I don't think you will regret it either when you get there.....

    The only part of the whole ordeal that wasn't very cordial at Vandy was when they took lab work. I guess there are so many patients there everyday the have a lab that actually takes patients 5 at a time and places them in small stalls to draw blood...LOL..Its kind of like a cattle sale.....They call out 5 names and then the next 5 and so on .. It is kind of funny though....If you need any other assistance with Vandy or getting around simply post up or PM me with any questions and I will be more than happy to help you with them...The also have a web site of their own with all of the surgeons there...Good Luck and I'll look for good results to come from the trip there...and where are you from ?

    .....Buzzard........

    I think....
    ... You got me wanting to go there too Clift, I may be seeking the second opinion next year, after the holidays.

    Hugsss!
    ~Donna
  • cbcardb12
    cbcardb12 Member Posts: 84
    #4
    Buzzard said:

    Vanderbilt-Ingram Cancer Center
    Carolyn, I was a rectal cancer patient that wasn't satisfied with what was going to happen to me here in my home state. I opted to call after being diagnosed with rectal cancer to Vanderbilt and spoke with a Dr Alan Herline's Nurse Practicioner and was asked if I had been diagnosed yet. I told her yes and that was on Friday and on the following Monday I was there in his office being examined and pre briefed at what this journey was going to entail. He was kind considerate and very sharp. He doesn't deal in percentages . He deals with trying to regain as much normalcy back for the person he is working with. I did my Radiation/Chemo treatments here at my city for we have a great Rad/Chemo bldg and setup . The cancer surgeons at Vanderbilt work as a team to surmise the best possible route to take based on all of their career based opinions. These men and women are simply the best. They are very kind as are the complete hospital staff down to the janitors all come with a smile and a courteous gesture. In my own opinion I think that your Dr had come to the end of his expertise and you definitely need to get out of Dodge and go somewhere else. You will find hopefully a lot of hope at Vanderbilt. Yes they are a teaching hospital and yes they do have clinical trials and yes they are #14 in the nation for cancer treatment and care, and yes I'll put my treatment and care up against any other Drs care as far as knowledge and patient responsibility. He will make you feel good as soon as you meet them . They will also do everything they possibly can to return as much normalcy to him as soon as they realistically can. If not completely satisfied then go for a third opinion, at #1 in the nation MD Anderson........just my opinion, but I know you are making the right move.....I don't think you will regret it either when you get there.....

    The only part of the whole ordeal that wasn't very cordial at Vandy was when they took lab work. I guess there are so many patients there everyday the have a lab that actually takes patients 5 at a time and places them in small stalls to draw blood...LOL..Its kind of like a cattle sale.....They call out 5 names and then the next 5 and so on .. It is kind of funny though....If you need any other assistance with Vandy or getting around simply post up or PM me with any questions and I will be more than happy to help you with them...The also have a web site of their own with all of the surgeons there...Good Luck and I'll look for good results to come from the trip there...and where are you from ?

    .....Buzzard........

    Thanks Cliff
    We live in the Atlanta area. The trip is approximately 200 miles from our home. We are going to drive up on Thursday, and our appointment is on Friday. I've never been to Nashville, so we are going to try to stay the weekend. We are in the process of looking for affordable hotels in the area. We will be meeting with Dr. Emily Chan. We are looking forward to the meeting. Thanks for the info, even the cattle calls LOL!! At least we know what to expect!

    Thnx,

    Carolyn
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #5
    Wow
    What a story you told. I am hoping that everything goes well for your husband. I was always told if your doctor has a problem with you getting a second opinion than they are not the person you want to be with. Good luck and I'm wishing the best for you both.

    Kim
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    #6
    Second opinion
    Carolyn,

    I hope you have a successful trip to Vanderbilt. I am curious as to why your husband can't continue with FOLFOX given that it's working for him. Is he experiencing neuropathy?

    All the best,
    Amy
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #7
    Hi Carolyn
    Things do smell fishy there for sure. As Kim said, if your doctor has a problem with you getting a second opinion then their not that good (or something along those lines).
    I agree with the others that your husbands and your first goal is to become NED. Buzzard offered some great first-hand info about where he went. I'll bet that is great info, there are other fish in the sea too.

    I know that Erbitux can be a bit rough at times but the side effects level out after a while. I've been on it for well over 3 years and it's been VERY helpful for me. I just thought I'd mention it since your husband does not want to go on it.

    Best of luck, you'll find a better place for treatment I'm sure
    -phil
  • pluckey
    pluckey Member Posts: 484 Member
    #8
    PhillieG said:

    Hi Carolyn
    Things do smell fishy there for sure. As Kim said, if your doctor has a problem with you getting a second opinion then their not that good (or something along those lines).
    I agree with the others that your husbands and your first goal is to become NED. Buzzard offered some great first-hand info about where he went. I'll bet that is great info, there are other fish in the sea too.

    I know that Erbitux can be a bit rough at times but the side effects level out after a while. I've been on it for well over 3 years and it's been VERY helpful for me. I just thought I'd mention it since your husband does not want to go on it.

    Best of luck, you'll find a better place for treatment I'm sure
    -phil

    Erbatux
    I've had 12 rounds of Erbatux and I've done very well- Cea from 1400 to 2.5. Rash on face and chest and back, but it subsided.

    2nd and 3rd opinions for sure are needed....Let us know what you find out and what treatment your decide

    ((HUGS))

    Peggy
  • snommintj
    snommintj Member Posts: 601
    #9
    pluckey said:

    Erbatux
    I've had 12 rounds of Erbatux and I've done very well- Cea from 1400 to 2.5. Rash on face and chest and back, but it subsided.

    2nd and 3rd opinions for sure are needed....Let us know what you find out and what treatment your decide

    ((HUGS))

    Peggy

    Go for the trials
    You should definitely do some significant research. There are some amazing things going on in the clinical trial arena. Right now, things are stable and you know what your response is going to be to conventional treatment. If surgery, RFA, and embolization, truly aren't options, I say go for the trials now. You always have conventional second line treatment to fall back on. I have 2 primary cancers so I don't qualify for clinical trials. If I did I would start with one of the PARP inhibitors, Olaparib is performing extremely well. Keep in mind, they will test to see if it's working, if not they will remove you from the trial and you will only loose a few weeks worth of conventional treatment time. I would avoid phase 0 and 1 trials until things look bleak. But a good phase 2 or 3 trial shouldn't pose you much of a risk. Fostamatinib is another promising inhibitor with a broad range of uses. A large % of patients have very good responses with little side effects. Also, a large % of patients have been on this drug for over a year without it loosing it's efficacy.
  • sfmarie
    sfmarie Member Posts: 602
    #10
    HOPE
    Don't lose hope. We were told the same thing and now, as it seems the avastin is working, are being told 6 more months of chemo (which will then be a year, first on Erbitux) and then RFA/Resection for the liver. Sought out MANY opinions. Keep trying. This process sucks! But there is someone out there that may have a better read. Prayers, Marie
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #11
    sfmarie said:

    HOPE
    Don't lose hope. We were told the same thing and now, as it seems the avastin is working, are being told 6 more months of chemo (which will then be a year, first on Erbitux) and then RFA/Resection for the liver. Sought out MANY opinions. Keep trying. This process sucks! But there is someone out there that may have a better read. Prayers, Marie

    Carolyn...............
    ask your Dr to refer you to rooms available there for patients...They are at a reduced rate for patients at Vandy...I think mine was $195/night but I got it for $140. Nashville is expensive but the hospitals should tell you where to book for reduced rates. Being a patient will get you that benefit.....Go to their website and find the info about it or simply ask your Dr....Thats what its there for, patient care and ease through difficult times...It will be about a 3 hr 15 min trip from Atlanta for you....Let me know if you need any assistance while there. I will pm you my #............Clift
  • amcp
    amcp Member Posts: 251 Member
    #12
    Vanderbilt Medical Center
    My husband was sent to Vanderbilt for a phase 1 clinical trial back in Dec 2008, his oncologist told us at home nothing left but a trial. He was diagnosed 8/26/2006 with mets to liver. Had coloscopy (the bag in 9/15/06) followed by chemo from 11/06 to 12/08 with nothing helping to stop the growth of the mets. We went to Vandy and found hope there. Frank has liver surgery which they removed 75 % of his right lobe of his liver and also right lung surgery which they removed only 4%. They bought us a year but not the mets have come back this time to but lungs(multiple mets). You can call your doctor back and ask for refer to HOPE Lodge which is free if they have any vacancy. It is so nice. Also Frank and I have stayed multiple nights at Baymont Lodge located off of Charolette on I think White Hall. All you have to do is ask for a medical rate and you get a room for $75.00 total that includes tax and everything. They are not too far from the hospital. They serve a continental breakfast and have coffee available and fruit most of the day. They have a laundry room available, there is a Shoney right in front of it along with a Kroger store behind and other fast food resturants. We are going down for Frank to start the clinical trial on Nov. 30th. We love Vanderbilt and have been treated so wonderful and such caring people. We will keep you both in our prayers and if I can be of any help let me know. My personal email is frankannap@netzero.com.
    May God bless and keep you,
    Anna
  • cbcardb12
    cbcardb12 Member Posts: 84
    #13
    Buzzard said:

    Carolyn...............
    ask your Dr to refer you to rooms available there for patients...They are at a reduced rate for patients at Vandy...I think mine was $195/night but I got it for $140. Nashville is expensive but the hospitals should tell you where to book for reduced rates. Being a patient will get you that benefit.....Go to their website and find the info about it or simply ask your Dr....Thats what its there for, patient care and ease through difficult times...It will be about a 3 hr 15 min trip from Atlanta for you....Let me know if you need any assistance while there. I will pm you my #............Clift

    Hotels
    Hi Clift,

    I've been looking on the Vandy website, and will definitely call them about the hotel rates. We have found a few that look reasonable, so I think we will be able to find something we can afford. The website also says that as long as the person is getting treatment, they can stay at the Hope Lodge, so I will definitely keep that in mind.

    Thanks,

    Carolyn

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