Chemo Not Working, Anyone Experience This?

I have been living with breast cancer for 13 years. During this time I have not had 5 years cancer free. Therefore, I have been through a lot of surgeries and treatments which have lead to my most recent dilemma.

I started my journey with a lumpectomy, radiation, and chemo therapy (A/C) and started on Tamoxifen. Three years later the cancer came back in the same breast. At this time I had a bilateral mastectomy, chemo (Taxotere), reconstructive surgery, and changed to Femara for the hormone therapy. Approximately one year after my last chemo treatment we found the cancer had metastasized to my bones. My hormone treatment was changed to Aromasin, I had my ovaries removed and I started on monthly I.V. treatments of Aridia for my bones. I enjoyed a little over 4 years of remission with this treatment alone. Unfortunately, in Jan '08 we discovered that the cancer had spread throughout my spine, hips, skull, pelvis, etc and several spots were seen on my liver.

This was devastating news but, the doctor was very hopeful that a pill form of chemo (Xeloda) would do the trick. They warned me of the possible side effects of the burning hands and feet. Well, these side effects were more than I could handle. They were so severe that I could not walk or function normally. The treatment was reduced several times to get to a level where I could tolerate it. After about 4 months we repeated the scans only to discover that not only did this treatment not work in reducing the cancer that was there, the cancer spread like mad. My liver now has extensive disease and the disease in my bones has spread as well.

In June I started on Abraxane and Avastin with three weekly treatments of Abraxane, two weekly treatments of Avastin and one week off. After one completed round (three weeks) and one additional week of treatment my tumor markers have doubled. It appears as though the treatment is not working. While I know some people experience false negatives and positive from tumor marker tests mine have been a pretty good indicator over the last 13 years.

So, I know it is a long shot but I am wondering if there is anyone out there that has had a similar experience and have gone on to find something else that has worked. I have read a few things about Cancer Treatment Centers of America on this message board and for the most part it sounds rather promising. Many well intentioned friends and family tell me to get another opinion or to go to MD Anderson or the many other cancer centers. It is so hard to start all over with doctors, tests, and scans! But, I know it is probably the best thing since to this point I have only had very traditional treatment.

If anyone has information that might help me I would greatly appreciate you sharing it with me.

I remain hopeful!

Hi Dovie

My journey with cancer has been short compared to yours and I had a different type of cancer (oralpharyngeal) so I'm not in a position to give you any advice on treatment; however, I did receive my treatment at Cancer Treatment Center in Zion and highly recommend them (I know they have a total of 5 hospitals).  If nothing else, I would suggest going there for a second opinion.   

The gentleman who started CTCA did so after losing his own mother to cancer and felt that there was a lack of communication and care involving his mother.  He believes that the patient's care & comfort as well as the caregivers comfort are the most important things.  They have a motto that God didn't give us an expiration date so they will not either.  Everyone - the doctors, the nurses, the technicians - and others were amazing.  Many (doctors included) are cancer survivors so they've been there - done that.  I had a nurse laughingly tell me how she taunted her sister about having a prettier shaped head than her - after she (the nurse) had lost all of her hair from having chemo for breast cancer.  They really do know what you are going through and were a God send during one of the most difficult times of my life.    

What was especially important to me was that CTCA believes in an integrative cancer treatment approach.  They combine conventional methods, such as surgery, radiation, chemo, and immunotherapy with complementary therapies such as nutrition, naturopathic med, mind-body med, physical therapy, pain management, and spiritual support - you can participate in one, two, all, or none of the complementary treatments (I even tried acupuncture for nausea).  They even had sessions on comedy as laughter does help.     

I know they pay for flights in for the patient - I'm not sure about a caregiver but they may.  I knew several people that flew in for treatment (and still are flying in) but we drove and they paid us mileage.  They even have stretch limos that pick you  up at the airport.  They are not flaunting anything - but who better deserves to be pampered if not someone battling cancer?  They have contracts w/ all the local hotels and you are given a very reasonable rate (they pay a portion and you pay a portion).  Shuttles transport you back and forth to CTCA - no charge.  One really nice thing they do is handle everything for you - flight arrangements, limo pick up, hotel reservations, and filing all insurance.  At a time we have so much on our mind, it is wonderful to leave all the details to them and let us concentrate on getting through treatment.  I received excellent care from CTCA and know that they had my best interests at heart.  You know how they say little things mean a lot - well for me it was the receptionist in the radiation department remembering me by name and asking how I was each and every day.  I also feel as if they are on top of all research going on.  My medical oncologist at CTCA stopped giving me heparin a couple of months into treatment because research now shows it doesn't help.  About 4 months after they stopped my heparin intake I was hospitalized at a local hospital (where I was originally diagnosed).  They gave me daily heparin shots in the stomach even though I tried to object.  For me it was saying CTCA was ahead of our local hospital as to the latest research data.  If you have any questions about CTCA please ask, I will be happy to answer them.  I wish you the best in your days ahead and will add you into my prayers.

Diana

Breastcancer.org is a great site for info and I hope the moderator is not offended but the women there are a fountain of knowledge and long term survivors some of them.  Best advice also from John Hopkins asktheexpert.com as she is a two time BC survivor.  I know they will include "get a 2nd and 3rd opinion" in their responses, preferably at a center that is renowned for their work with BC patients. 

 

www.breastcancer.org

 

How are you feeling physically at this point??  I contacted the Cancer Treatment Center also at one point and my insurance which is an HMO would not cover services.  But you should call them about a consult, however, they may require their own testing so if your ins. does not cover prepared to pay for their services.  They were able to give me a ball park figure over the phone.  Have you considered any BC trials??  I would definitely look to see if any are being conducted with your stage cancer.  I have read in CURE magazine where some people have responded well in trials.  Research is working on finding tests that determine who will benefit and from what chemo agent so people are not put on a drug with side effects that will not benefit their cancer.  They are doing this to try to find the right "cocktail" so to speak to address an individuals tumor.  Unfortunately, all this takes time that is why I would suggest a trial.  May God bless you.  Enjoy each day as life is precious.  Hope you are feeling well so you can engage.

Diana, Thank you so much for your input on CTCA. I am traveling to Tulsa, OK tomorrow for evaluation over the following 3-5 days. I am looking forward to seeing what it is all about. I did confirm that my suspicion that the chemo I was on was not working so I am currently in no treatment. I am scared and feel a little lost. There is so much to think about and the pressure of making the right decision is really tough. But, I have faith that something will turn up. Thanks again for sharing your experience with CTCA!

On 7/9/2008 Bunnyswanson wrote:

Breastcancer.org is a great site for info and I hope the moderator is not offended but the women there are a fountain of knowledge and long term survivors some of them.  Best advice also from John Hopkins asktheexpert.com as she is a two time BC survivor.  I know they will include "get a 2nd and 3rd opinion" in their responses, preferably at a center that is renowned for their work with BC patients. 

 

www.breastcancer.org

 

Thank you very much for this info. I am taking that advice and getting several different opinions.

On 7/10/2008 Leemg wrote:

How are you feeling physically at this point??  I contacted the Cancer Treatment Center also at one point and my insurance which is an HMO would not cover services.  But you should call them about a consult, however, they may require their own testing so if your ins. does not cover prepared to pay for their services.  They were able to give me a ball park figure over the phone.  Have you considered any BC trials??  I would definitely look to see if any are being conducted with your stage cancer.  I have read in CURE magazine where some people have responded well in trials.  Research is working on finding tests that determine who will benefit and from what chemo agent so people are not put on a drug with side effects that will not benefit their cancer.  They are doing this to try to find the right "cocktail" so to speak to address an individuals tumor.  Unfortunately, all this takes time that is why I would suggest a trial.  May God bless you.  Enjoy each day as life is precious.  Hope you are feeling well so you can engage.

You are so right about enjoying each day. I am a firm believer in that. I would say that the hardest part is dealing with pain. I have now been taken off of the previous chemo because the cancer continued to grow with it as I had suspected. I found out that my insurance will cover treatment at CTCA so I will be going there on Wed. I will see another doctor next Tue who is involved in a lot of research and will most likely find a trial that fits me. I have been looking at the ACS website for clinical trials and it is tough. There really weren't that many that would fit me. But, I have faith and I know that with that faith I will be guided to the right place. Thank you for your reply.

 

On 7/29/2008 Dovie wrote:

Diana, Thank you so much for your input on CTCA. I am traveling to Tulsa, OK tomorrow for evaluation over the following 3-5 days. I am looking forward to seeing what it is all about. I did confirm that my suspicion that the chemo I was on was not working so I am currently in no treatment. I am scared and feel a little lost. There is so much to think about and the pressure of making the right decision is really tough. But, I have faith that something will turn up. Thanks again for sharing your experience with CTCA!

Hi Dovie

I read where you are seeing another doctor next Tues also.  That is good because when making such an important decision I don't think it ever hurts to get 2nd and 3rd opinions.  It is so important that you are comfortable with your doctors and your treatment when dealing with cancer.  I go to CTCA in Zion on Thur and Fri for my check up and hoping for a clear scan and good results on my blood work.  My prayers are with you and just imagine a hug coming to you Thur from CTCA in Zion.  Even if you decide on one of the trials at the other cancer center, I think you will like CTCA.  For me, they were like family that were with me throughout.  Please let me know what you decide to do - I know how difficult it can be in trying to make the right decision for treatment.   

Diana

Best of luck at the Cancer Center.  Maybe once you have had your work up etc. you can let others know about your experience.  I believe they are at the cutting edge of science so hopefully you will be one of their success stories. God Bless!