Freaked out: Cancer Treatment Center of America

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Freaked out: Cancer Treatment Center of America

by HIGH_STRUNG_DAUGHTER on Thu Feb 26, 2009 12:00 AM

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Ok, I really need some guidance everyone.  Recap: Dad is 54 Diag with Stage 4 colon cancer last April.  12 FOLFOX with Avastin treatments, CEA down to 2.25.  He was ready to have surgery to reverse his colostomy and a last minute CT Scan (ordered because his lower abdominal pain has become so bad) showed fluid in his abdomen and "thickening" around his bowels from the cancer growth.  His surgery was supposed to be two days ago, it was cancelled.   He got a higher dose of his pain patch (Fentynal...spelled wrong but I think you know what I mean).  He had his 13th treatment (same FOLFOX with Avastin) last Thursday and has been in a lot of pain even with the patch and darvocet.  He called me yesterday saying he had put a call into the Cancer Treatment Center of America and they needed to fax some forms to me at work. Someone had told him about it so he thought he'd give it a try.   I called the guy who my Dad had talked to and he was very nice.  He said they would look at Dad's records and then they could fly him and my Mom out to Chicago (closest of the four locations to us as we're in Nebraska).  I faxed him back the signature forms today but BEFORE I had even sent them in a nurse from there had called my Dad at home and said they wanted to fly them out Tuesday, they would meet with an oncologist on Wednesday, Dad would have treatment on Thursday (they said they'd do the same treatment he has been on) and then meet again with doctors on Friday.  Ok, I may be dumb and (as my name always reminds you) a little too high strung but I emailed the contact guy I had talked to yesterday asking him how they are willing to do all of this within 4 days of now and have not seen one scan, report, etc..?  Has anyone used any of the Cancer Treatment Centers of America?  I think it's a little overwhelming to think of all of a sudden changing doctors and putting our Dad's life in hands of people who have never met him?!  They talk alot about holistic treatment and I'm sorry but when my Dad is down to around 138 lbs. I can't be comforted by the thought of "all natural".  If I felt like we were at a point to just experiement I may feel differently but for the first time I'm seeing signs of him losing ground on this cancer and I'm freaked out.   I guess it just seems a little overwhelming to us right now.  Do they just want money that bad that they'll jump all over new patients like this?  I'm not up for people to yell at me if they've personally went there and had good results so please know I'm not trying to assume they're a bad place but I usually have a "gut check" when it comes to Dad and his treatment plans and this time I'm really freaked.  There are great testimonials on the site but I'm sorry....no company will put the bad one's on there so I can't completely go off of them.  Thank you (as ALWAYS) for listening to this.  Please please please let me know if you have any personal experiences with this place (or just opinions too?!).  High Strung Daughter

RE: Freaked out: Cancer Treatment Center of America

by MEEMERZ on Thu Feb 26, 2009 12:00 AM

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On 2/26/2009 HIGH STRUNG DAUGHTER wrote:

Ok, I really need some guidance everyone.  Recap: Dad is 54 Diag with Stage 4 colon cancer last April.  12 FOLFOX with Avastin treatments, CEA down to 2.25.  He was ready to have surgery to reverse his colostomy and a last minute CT Scan (ordered because his lower abdominal pain has become so bad) showed fluid in his abdomen and "thickening" around his bowels from the cancer growth.  His surgery was supposed to be two days ago, it was cancelled.   He got a higher dose of his pain patch (Fentynal...spelled wrong but I think you know what I mean).  He had his 13th treatment (same FOLFOX with Avastin) last Thursday and has been in a lot of pain even with the patch and darvocet.  He called me yesterday saying he had put a call into the Cancer Treatment Center of America and they needed to fax some forms to me at work. Someone had told him about it so he thought he'd give it a try.   I called the guy who my Dad had talked to and he was very nice.  He said they would look at Dad's records and then they could fly him and my Mom out to Chicago (closest of the four locations to us as we're in Nebraska).  I faxed him back the signature forms today but BEFORE I had even sent them in a nurse from there had called my Dad at home and said they wanted to fly them out Tuesday, they would meet with an oncologist on Wednesday, Dad would have treatment on Thursday (they said they'd do the same treatment he has been on) and then meet again with doctors on Friday.  Ok, I may be dumb and (as my name always reminds you) a little too high strung but I emailed the contact guy I had talked to yesterday asking him how they are willing to do all of this within 4 days of now and have not seen one scan, report, etc..?  Has anyone used any of the Cancer Treatment Centers of America?  I think it's a little overwhelming to think of all of a sudden changing doctors and putting our Dad's life in hands of people who have never met him?!  They talk alot about holistic treatment and I'm sorry but when my Dad is down to around 138 lbs. I can't be comforted by the thought of "all natural".  If I felt like we were at a point to just experiement I may feel differently but for the first time I'm seeing signs of him losing ground on this cancer and I'm freaked out.   I guess it just seems a little overwhelming to us right now.  Do they just want money that bad that they'll jump all over new patients like this?  I'm not up for people to yell at me if they've personally went there and had good results so please know I'm not trying to assume they're a bad place but I usually have a "gut check" when it comes to Dad and his treatment plans and this time I'm really freaked.  There are great testimonials on the site but I'm sorry....no company will put the bad one's on there so I can't completely go off of them.  Thank you (as ALWAYS) for listening to this.  Please please please let me know if you have any personal experiences with this place (or just opinions too?!).  High Strung Daughter
Hi - I live in Oklahoma City.  There is a treatment center in Tulsa like you are talking about.  They are supposed to be excellent.  We chose not to go because my husband wanted to stay home.  I work in a school and a teacher friend went to Tulsa.  Those centers are supposed to be excellent and they do practice holistic medicine.  That is something that our Drs. never talk about; however, we have read and researched a lot and that is the way to go.  Sooooo  -  we are in the process of trying to take the supplements and eat much better.  Good luck with your Dad and may God Bless your family.  This is a horrible disease to battle - it is difficult on everyone!   Cheryl    Oklahoma City

 

RE: Freaked out: Cancer Treatment Center of America

by Karenb on Thu Feb 26, 2009 12:00 AM

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Hi, I contacted CTCA when Mayo turned me down for a second liver resection. CTCA sent me a packet of info and offered the free flight for me ... that is until they checked my insurance and found that they were out of my network. They dropped me like a hot potato.

I do remember that they practice traditional western medicine in combination with holistic treatment. They also said they would gather all of my medical records. I just needed to sign a release and provide them the doctor, hospital and other names.

I would give them a call. Emailing can be difficult. Karen

RE: Freaked out: Cancer Treatment Center of America

by Jeanne520 on Fri Feb 27, 2009 12:00 AM

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On 2/26/2009 HIGH STRUNG DAUGHTER wrote:

Ok, I really need some guidance everyone.  Recap: Dad is 54 Diag with Stage 4 colon cancer last April.  12 FOLFOX with Avastin treatments, CEA down to 2.25.  He was ready to have surgery to reverse his colostomy and a last minute CT Scan (ordered because his lower abdominal pain has become so bad) showed fluid in his abdomen and "thickening" around his bowels from the cancer growth.  His surgery was supposed to be two days ago, it was cancelled.   He got a higher dose of his pain patch (Fentynal...spelled wrong but I think you know what I mean).  He had his 13th treatment (same FOLFOX with Avastin) last Thursday and has been in a lot of pain even with the patch and darvocet.  He called me yesterday saying he had put a call into the Cancer Treatment Center of America and they needed to fax some forms to me at work. Someone had told him about it so he thought he'd give it a try.   I called the guy who my Dad had talked to and he was very nice.  He said they would look at Dad's records and then they could fly him and my Mom out to Chicago (closest of the four locations to us as we're in Nebraska).  I faxed him back the signature forms today but BEFORE I had even sent them in a nurse from there had called my Dad at home and said they wanted to fly them out Tuesday, they would meet with an oncologist on Wednesday, Dad would have treatment on Thursday (they said they'd do the same treatment he has been on) and then meet again with doctors on Friday.  Ok, I may be dumb and (as my name always reminds you) a little too high strung but I emailed the contact guy I had talked to yesterday asking him how they are willing to do all of this within 4 days of now and have not seen one scan, report, etc..?  Has anyone used any of the Cancer Treatment Centers of America?  I think it's a little overwhelming to think of all of a sudden changing doctors and putting our Dad's life in hands of people who have never met him?!  They talk alot about holistic treatment and I'm sorry but when my Dad is down to around 138 lbs. I can't be comforted by the thought of "all natural".  If I felt like we were at a point to just experiement I may feel differently but for the first time I'm seeing signs of him losing ground on this cancer and I'm freaked out.   I guess it just seems a little overwhelming to us right now.  Do they just want money that bad that they'll jump all over new patients like this?  I'm not up for people to yell at me if they've personally went there and had good results so please know I'm not trying to assume they're a bad place but I usually have a "gut check" when it comes to Dad and his treatment plans and this time I'm really freaked.  There are great testimonials on the site but I'm sorry....no company will put the bad one's on there so I can't completely go off of them.  Thank you (as ALWAYS) for listening to this.  Please please please let me know if you have any personal experiences with this place (or just opinions too?!).  High Strung Daughter


Hello Daughter,

I understand your concerns.  Your family has been through quite a bit in a short time.  It can be confusing when something happens so suddenly, and you might be like me where more information is a good thing - you need to know the details of the situation.  I was diagnosed with Stage 4 colon cancer in Oct '05.  I've had 3 abdominal surgeries, FOLFOX with avastin for 6 months (but had to drop the oxaliplatin after 7 treatments), and after a recurrence 18 months ago I had another 6 months of chemo using FOLFIRI.  I never had the fluid accumulation like your dad has.  I live in the SF Bay Area in Calif, and here we usually go to UCSF or Stanford, the best research schools in our area, for 2nd opinions, and state-of-the-art treatments.  For me, these are a better medical resource.  There are also places like MD Anderson, Sloan-Kettering, etc., that are well-known for their state-of-the-art treatments and knowledge.  Usually it's best if you have your doctor's referral there, so the insurance will cover it.  

You said your dad learned about CCTA from a friend - what kind of experience did the friend have - is the friend the cancer patient? Regarding holistic treatments, I've used complimentary treatments along with the western medicine, seeing my acupuncturist frequently during treatment.  Run a Google search on " CCTA complaints" or something like that, to see what NEGATIVE feedback there is about CCTA.  Maybe even "CCTA lawsuits" or some such term.  Have you asked your dad's current docs what they think of CCTA?  Do you trust your dad's current docs?  You can always ask for a 2nd, 3rd, 4th opinion through your current medical facility.  I'm not sure about Creighton - I used to live in Omaha - but they might be a teaching medical school with a good reputation.  You can also ask the current docs who they look to for advice or recommendations when they have reached the end of their knowledge for a particular patient.

 Good luck - I'll be 55 in a few months, and have been dealing with cancer and treatment for the past 3+ years.  Blessings to your family, and hang in there.  It's overwhelming, scary, and nervewracking to be navigating the cancer fields when you don't have as much information as you'd like.

Best to you, Jeanne

 

RE: Freaked out: Cancer Treatment Center of America

by BeckyC on Fri Feb 27, 2009 12:00 AM

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Cancer Treatment Center of America uses intergrated medicines.  In other words, holistic practices are used in conjunction with conventional medicines.  It is a wonderful place.  I am going to ask a question: " What do you have to lose by going?"  I ask myself that question when I decided to go and my answer was : "I have nothing to lose and a life to live."  I went.  That was 6 years ago.  I am cancer free.  The doctors there deal with nothing but cancer.  There are doctors who treat certain types of cancer.  One doctor doesn't treat "all" the cancers.  There are specialist in each type of cancer.  That's how they can process your father quickly.  It is nothing like the docotors I had at home.  They have a system that works.  I know.  I have been there and I still go.  I go back in May.  Can't wait.  Please try it. 

RE: Freaked out: Cancer Treatment Center of America

by coloncan05 on Fri Feb 27, 2009 12:00 AM

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Hi, I am a 45 year old mother of two. I was diagnosed with st2 colon cancer. I was treated at ctca. I have been other places. They will treat your father with great respect and care. They will listen to you and your father to determine the best treatment. His cancer will be treated along with his mind and body. You should go for a see. I am writng this with a 7 month old on my lap. I was given no hope in 05. You shou;ld give it a try.  I hope things go well for your family.

RE: Freaked out: Cancer Treatment Center of America

by sherinurse on Fri Feb 27, 2009 12:00 AM

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Hello, 

 I just questioned my son's oncologist today (he's 27 with stage IV colon cancer and has been on chemo for a year) about the Cancer Treatment Centers of America. His response was that they will treat a patient but have no follow up.  They charge massive amounts of money for supplements you can get in any pharmacy for much less.  He recommended a large university (ex. NIH, John Hopkins, etc) for studies if we want a second opinion (which he has NO problem with us getting).  My son has elected to stay with his oncologist at this point (he changed his drug regimen today as FOLFOX was not working, now on FOLFURI (sp?)).  I feel for you.  

 sherinurse

RE: Freaked out: Cancer Treatment Center of America

by MaEarth on Sat Feb 28, 2009 12:00 AM

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On 2/27/2009 coloncan05 wrote:

Hi, I am a 45 year old mother of two. I was diagnosed with st2 colon cancer. I was treated at ctca. I have been other places. They will treat your father with great respect and care. They will listen to you and your father to determine the best treatment. His cancer will be treated along with his mind and body. You should go for a see. I am writng this with a 7 month old on my lap. I was given no hope in 05. You shou;ld give it a try.  I hope things go well for your family.

I am greatful that CTCA sponsor this website however when I was first diagnosed with cancer I called for info. The first question I was asked was "Who is your insurance provider?" After I answered the question I was told "We don't accept that insurance."

RE: Freaked out: Cancer Treatment Center of America

by newperson on Mon Mar 02, 2009 12:00 AM

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On 2/27/2009 Jeanne520 wrote:


Hello Daughter,

I understand your concerns.  Your family has been through quite a bit in a short time.  It can be confusing when something happens so suddenly, and you might be like me where more information is a good thing - you need to know the details of the situation.  I was diagnosed with Stage 4 colon cancer in Oct '05.  I've had 3 abdominal surgeries, FOLFOX with avastin for 6 months (but had to drop the oxaliplatin after 7 treatments), and after a recurrence 18 months ago I had another 6 months of chemo using FOLFIRI.  I never had the fluid accumulation like your dad has.  I live in the SF Bay Area in Calif, and here we usually go to UCSF or Stanford, the best research schools in our area, for 2nd opinions, and state-of-the-art treatments.  For me, these are a better medical resource.  There are also places like MD Anderson, Sloan-Kettering, etc., that are well-known for their state-of-the-art treatments and knowledge.  Usually it's best if you have your doctor's referral there, so the insurance will cover it.  

You said your dad learned about CCTA from a friend - what kind of experience did the friend have - is the friend the cancer patient? Regarding holistic treatments, I've used complimentary treatments along with the western medicine, seeing my acupuncturist frequently during treatment.  Run a Google search on " CCTA complaints" or something like that, to see what NEGATIVE feedback there is about CCTA.  Maybe even "CCTA lawsuits" or some such term.  Have you asked your dad's current docs what they think of CCTA?  Do you trust your dad's current docs?  You can always ask for a 2nd, 3rd, 4th opinion through your current medical facility.  I'm not sure about Creighton - I used to live in Omaha - but they might be a teaching medical school with a good reputation.  You can also ask the current docs who they look to for advice or recommendations when they have reached the end of their knowledge for a particular patient.

 Good luck - I'll be 55 in a few months, and have been dealing with cancer and treatment for the past 3+ years.  Blessings to your family, and hang in there.  It's overwhelming, scary, and nervewracking to be navigating the cancer fields when you don't have as much information as you'd like.

Best to you, Jeanne

 

Hi Jeanne,

Could you let us know how you are doing right now? Are you still having chemo or not? I hope that you are cancer-free after the 6 months treatment with FOLFIRI for the recurrence. Why I'm asking is that my husband has almost the same case as yours. He was diagnosed rectal cancer in Dec. 2006. He went through chemo/radiation, surgery, and chemo with FOLFOX and Avastin. He dropped after the 8th round due to the side effects. He had recurrence last Sept. He is now on chemo with FOLFIRI. He just started the 9th round today with 3 more to go. I don't know what to expect after this. I heard that it's very bad with recurrence. I worry about him so much and I'm scared. We live in east bay of SF in California. I hope I can hear the encouraging story from you. Also can anyone who had recurrence share your encouraging story with us?

Lucy

 

 

RE: Freaked out: Cancer Treatment Center of America

by Jeanne520 on Mon Mar 02, 2009 12:00 AM

Quote | Reply

 

On 3/2/2009 newperson wrote:

 

On 2/27/2009 Jeanne520 wrote:


Hello Daughter,

I understand your concerns.  Your family has been through quite a bit in a short time.  It can be confusing when something happens so suddenly, and you might be like me where more information is a good thing - you need to know the details of the situation.  I was diagnosed with Stage 4 colon cancer in Oct '05.  I've had 3 abdominal surgeries, FOLFOX with avastin for 6 months (but had to drop the oxaliplatin after 7 treatments), and after a recurrence 18 months ago I had another 6 months of chemo using FOLFIRI.  I never had the fluid accumulation like your dad has.  I live in the SF Bay Area in Calif, and here we usually go to UCSF or Stanford, the best research schools in our area, for 2nd opinions, and state-of-the-art treatments.  For me, these are a better medical resource.  There are also places like MD Anderson, Sloan-Kettering, etc., that are well-known for their state-of-the-art treatments and knowledge.  Usually it's best if you have your doctor's referral there, so the insurance will cover it.  

You said your dad learned about CCTA from a friend - what kind of experience did the friend have - is the friend the cancer patient? Regarding holistic treatments, I've used complimentary treatments along with the western medicine, seeing my acupuncturist frequently during treatment.  Run a Google search on " CCTA complaints" or something like that, to see what NEGATIVE feedback there is about CCTA.  Maybe even "CCTA lawsuits" or some such term.  Have you asked your dad's current docs what they think of CCTA?  Do you trust your dad's current docs?  You can always ask for a 2nd, 3rd, 4th opinion through your current medical facility.  I'm not sure about Creighton - I used to live in Omaha - but they might be a teaching medical school with a good reputation.  You can also ask the current docs who they look to for advice or recommendations when they have reached the end of their knowledge for a particular patient.

 Good luck - I'll be 55 in a few months, and have been dealing with cancer and treatment for the past 3+ years.  Blessings to your family, and hang in there.  It's overwhelming, scary, and nervewracking to be navigating the cancer fields when you don't have as much information as you'd like.

Best to you, Jeanne

 

Hi Jeanne,

Could you let us know how you are doing right now? Are you still having chemo or not? I hope that you are cancer-free after the 6 months treatment with FOLFIRI for the recurrence. Why I'm asking is that my husband has almost the same case as yours. He was diagnosed rectal cancer in Dec. 2006. He went through chemo/radiation, surgery, and chemo with FOLFOX and Avastin. He dropped after the 8th round due to the side effects. He had recurrence last Sept. He is now on chemo with FOLFIRI. He just started the 9th round today with 3 more to go. I don't know what to expect after this. I heard that it's very bad with recurrence. I worry about him so much and I'm scared. We live in east bay of SF in California. I hope I can hear the encouraging story from you. Also can anyone who had recurrence share your encouraging story with us?

Lucy

 

 

Hi Lucy,

I live in the East Bay also, near Concord/Martinez.  I belong to a cancer support group through The Wellness Community, and the N. Calif regional office is on the Walnut Creek/Pleasant Hill border.  You can call 925-933-0107 for more information, or check out the website at:  http://thewellnesscommunity.org/  .  They are WONDERFUL, and I wouldn't have made it through with such a good attitude without them.

Anyway, I am doing very well now.  I have had no evidence of recurrent disease since finishing the FOLFIRI. It was a tough chemo for me, with side effects of major fatigue and hand/foot syndrome, also the mouth sores were much worse than I had with the FOLFOX.  But I always felt like FOLFIRI was a better chemo for me.  My CEA is now rising, having been around 1.6 - 2.6 since Nov of 2007 (FOLFIRI started in Sept 2007).  But now it's up to 7.7.  The doctor has moved me back to blood tests every month, and I'll do a CT scan every 2 months, so we can be sure to catch any new growth of the cancer.  I'm also having energy healings, I continue with my acupuncture, and I don't exercise much (not a good thing).  I'm getting more active to help keep the cancer further away. 

I also heard it's bad news if Stage 4 cancer recurs.  But I don't feel like I"m going to die from this, I don't know why.  I have almost all my energy back, just not all my motivation to get things done!  I have had no evidence of cancer in my body for about 15 months, which is the longest span I've made it since being diagnosed.  I understand why you are scared.  I learned during the last chemo that when I only have a limited amount of energy, I'd rather spend it on calming things rather than on worrying.  If worrying won't change the outcome then I do my best to just let it go, and live day to day rather than focusing on what I'll do when/if the cancer returns.   It's the nature of the disease that it will return, and my doctor & I have discussed what approach we'll take at that time. 

Let me know if I can help in any other way.  My thoughts are with you & your husband.  He's lucky to have you with him - I'm not partnered with anyone, and I do most of this stuff myself.  (I have great friends, and wonderful adult kids who help me out.)

Best to you,

Jeanne

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