In Recurrenc - Will try HIPEC but there's dillema

Options
zenisthou
zenisthou Member Posts: 26
in Ovarian Cancer #1
My Dear Friends,

I am new to this board. I am glad to find a place with so ladies with good knowledge, and above all, with great heart and incredible courage.

Brief history of the desease: I had surgery on 12/29/2009 and confirmed the diagnosis of Ovarian Cancer IIIC. After surgery, I had 8 cycles of Carbo/Toxel. CA125 drop from 880 to 40 within the first 4 treatments, but bounce back and forth between 40 and 30 in the following 4 treatments. My doctor doesn't like the fact that the CA125 did not go down to one digit, he put me on Toxel maintainance once a month. I had 7 of the maintainance treatments, and my father passed away (at age 91) in Taiwan. I went back to Taiwan for funeral in Feb, 2011. I had last toxel maintainance on 1/18/2011. I didn't take any treatment while I was in Taiwan. I came back to USA on 3/20. Had a blood work on 4/1, the CA125 was up to 77, and then on 4/15, it went up to 135. PET scan shows finding and confirmed the recurrence.

Beside my primary care oncologist, I went to be seen by several doctors in prestigious cancer center. Everyone has a little bit different suggestions. I got suggestion to have Tobotecan every week, or Doxil every 3 weeks, or Doxil with AMG386 clinical trial, avastine every month, and HIPEC surgery. (one of link for you to understand the idea of HIPEC: http://www.theuniversityhospital.com/healthlink/archives/articles/ihpp.html)

I amy not suffering for any pain, any symptom of desease, I am doing very well physically. Eat well (too well :-), sleep well, hiking everyday, involve many charity volunteer activities daily. I am really enjoying life everyday.

I have made decision to go with HIPEC after I am back from Alaska Cruise with my kids by end of June. The surgeon thinks it is ok to wait till July to have the surgery. However,I want to go for a spiritual, soul searching trip to Taiwan in September. I want to pencil out one more thing on my wish list before I am down for this big surgery. My surgeon says that he can't say it is ok to wait that long, but everybody is different..

I read an article about "Treating symptom not the number" about treating recurrent OC. It emphasizes that the early treatment for recurrent OC doesn't make over all result different. If the article makes sense, then I should go ahead to do my things for now. Am I taking a huge risk???

I am posting this message to share information about recurrent treatment, and seek for any input from you girls.

Thanks for your time. Best wishes for all of you!!

Comments

  • LaundryQueen
    LaundryQueen Member Posts: 676
    #2
    Options
    Delay treatment or act sooner?
    Zenisthou: Since you asked, I'll give you my opinion--keep in mind that I have a different twist to my mind than most people in general and you may not feel my opinion is very helpful to you. Nevertheless, I read your personal information and it sounds like you have already accepted the hard fact that you may die from the disease sooner than you had hoped to die. After one accepts their own death, it becomes a matter of choosing the best way to live rather than avoiding death at all costs. So I feel in harmony with you on that issue and I can't get back to sleep tonight anyway.

    From your history, it sounds like you have already become platinum resistant...I say this based on the CA-125 number that bounced back up during the carbo/taxol treatment. I am going to speak as if your situation were my own personal situation--so what would I do in your shoes?

    I don't know if you have any tumors of considerable size--if I had a tumor or tumors that were very localized and threatening bowel/kidney/gall bladder obstruction, I would NOT wait for treatment--I would want a second "debulking surgery" ASAP but I don't think you have such a problem because then you wouldn't be a candidate for the HIPEC.

    If I had a rising CA-125 without evidence of localized tumors, felt well and wanted to take the trip to Taiwan, I would take the trip & wait for treatment AND I would ALSO enroll in the controlled amino acid therapy diet program (CAAT) for the entire time that I was waiting for the HIPEC surgery.

    The CAAT program is designed to starve cancer based on much very good research on the individual components of the diet--the entire diet itself has not been researched or scientifically proven to work. There are case studies of individuals were were considered terminal cancer cases who improved on the CAAT diet some were even cured. By doing the CAAT diet, I would have the peace of mind that I was starving the cancer and keeping it dormant until I was ready to finish it off in the fall.

    The CAAT program is somewhat expensive as the cost of the counseling is added onto the price of the special supplements that you must take but if you contact someone from the CAAT website (www.apjohncancerinstitute.org), you will probably be offered a discount if you make a committment to do the program for a minimum of 3 months.

    Once I found out about the CAAT program, I decided that I would do the CAAT program if I have a recurrence--along with whatever chemo the oncologist thinks is appropriate. Even though I'd already decided that I was cured, I had to have some kind of "back up plan." Sort of the "Trust in Allah, but also tie up your camel" attitude.

    The CAAT program is not only expensive but also a very restricted diet (hence the counseling offered to help one stay on the program). In your personal information, you wrote that you "eat well (in fact, too well.)" This leads me to believe that you may have difficulty with a very strict diet. I know that I could do whatever I believed would help me to be a long-term survivor or dare I say even cured of OVCA. The key to success on the diet is in the mind.

    My personal opinion is that the benefit of the HIPEC is in the heated saline ALONE as cancer cannot survive above 104 degrees and it is too bad that no one is doing research on using heated saline ALONE in the belly. But to do it without chemo is considered unethical.

    I had an assay done on the malignant cells from my ascites that showed that the malignant cells were sensitive to hyperthermia. So I went out and bought a far-infra red "BioMat" that delivers penetrating heat up to 3 inches into my body and I lay under the mat almost every day. I find it very soothing to use. Send me a private message if you want more info on that.

    Please forgive me for the long post, I just wanted to give you my perspective and show you support for doing the HIPEC as even though you may be platinum-resistant, you may do very well with that therapy. I am sure your trip will promote your health if you can keep your mind at peace.

    LQ
  • zenisthou
    zenisthou Member Posts: 26
    #3
    Options
    LaundryQueen said:

    Delay treatment or act sooner?
    Zenisthou: Since you asked, I'll give you my opinion--keep in mind that I have a different twist to my mind than most people in general and you may not feel my opinion is very helpful to you. Nevertheless, I read your personal information and it sounds like you have already accepted the hard fact that you may die from the disease sooner than you had hoped to die. After one accepts their own death, it becomes a matter of choosing the best way to live rather than avoiding death at all costs. So I feel in harmony with you on that issue and I can't get back to sleep tonight anyway.

    From your history, it sounds like you have already become platinum resistant...I say this based on the CA-125 number that bounced back up during the carbo/taxol treatment. I am going to speak as if your situation were my own personal situation--so what would I do in your shoes?

    I don't know if you have any tumors of considerable size--if I had a tumor or tumors that were very localized and threatening bowel/kidney/gall bladder obstruction, I would NOT wait for treatment--I would want a second "debulking surgery" ASAP but I don't think you have such a problem because then you wouldn't be a candidate for the HIPEC.

    If I had a rising CA-125 without evidence of localized tumors, felt well and wanted to take the trip to Taiwan, I would take the trip & wait for treatment AND I would ALSO enroll in the controlled amino acid therapy diet program (CAAT) for the entire time that I was waiting for the HIPEC surgery.

    The CAAT program is designed to starve cancer based on much very good research on the individual components of the diet--the entire diet itself has not been researched or scientifically proven to work. There are case studies of individuals were were considered terminal cancer cases who improved on the CAAT diet some were even cured. By doing the CAAT diet, I would have the peace of mind that I was starving the cancer and keeping it dormant until I was ready to finish it off in the fall.

    The CAAT program is somewhat expensive as the cost of the counseling is added onto the price of the special supplements that you must take but if you contact someone from the CAAT website (www.apjohncancerinstitute.org), you will probably be offered a discount if you make a committment to do the program for a minimum of 3 months.

    Once I found out about the CAAT program, I decided that I would do the CAAT program if I have a recurrence--along with whatever chemo the oncologist thinks is appropriate. Even though I'd already decided that I was cured, I had to have some kind of "back up plan." Sort of the "Trust in Allah, but also tie up your camel" attitude.

    The CAAT program is not only expensive but also a very restricted diet (hence the counseling offered to help one stay on the program). In your personal information, you wrote that you "eat well (in fact, too well.)" This leads me to believe that you may have difficulty with a very strict diet. I know that I could do whatever I believed would help me to be a long-term survivor or dare I say even cured of OVCA. The key to success on the diet is in the mind.

    My personal opinion is that the benefit of the HIPEC is in the heated saline ALONE as cancer cannot survive above 104 degrees and it is too bad that no one is doing research on using heated saline ALONE in the belly. But to do it without chemo is considered unethical.

    I had an assay done on the malignant cells from my ascites that showed that the malignant cells were sensitive to hyperthermia. So I went out and bought a far-infra red "BioMat" that delivers penetrating heat up to 3 inches into my body and I lay under the mat almost every day. I find it very soothing to use. Send me a private message if you want more info on that.

    Please forgive me for the long post, I just wanted to give you my perspective and show you support for doing the HIPEC as even though you may be platinum-resistant, you may do very well with that therapy. I am sure your trip will promote your health if you can keep your mind at peace.

    LQ

    Thanks for your valuable advice
    Hello, LQ,

    Thanks for taking time to reply my post. I can tell that you are very knowledgeable about the desease and treatments. You are a good boss for sure! (pls refer to "about me".)

    I will do my research on CAAT. Although I am eating too well now, but I am a person with strong will to fight for surviving. If only changing diet can increase my chance, I will definitely go for it. I will keep you posted my finding about CAAT. Thanks for the information.

    I will go see my surgical oncologist on Monday, will know the result of CA125 from today. 2 weeks ago, the number dropped from 177 to 135 after three elevation from 35 to 60 to177. I don't know if the drop means anything. My plan is that if the ca125 stay or drop, I will go to Taiwan in September and have HIPEC in October. If the number go up sharply, I will do the surgery in mid July when I am back from cruise. Either way I will study the CAAT and get in to the program...

    I put hope on this HIPEC. I wished that I will bring good news to the friends here!

    I don't know how to send private message to you, can you tell me how to do it? I want to buy the heat mat you described, sounds interesting and make sense.

    Thank you again for your time and valuable advice. It is nice to have someone like you to discuss this.

    Tracy
  • LaundryQueen
    LaundryQueen Member Posts: 676
    #4
    Options
    zenisthou said:

    Thanks for your valuable advice
    Hello, LQ,

    Thanks for taking time to reply my post. I can tell that you are very knowledgeable about the desease and treatments. You are a good boss for sure! (pls refer to "about me".)

    I will do my research on CAAT. Although I am eating too well now, but I am a person with strong will to fight for surviving. If only changing diet can increase my chance, I will definitely go for it. I will keep you posted my finding about CAAT. Thanks for the information.

    I will go see my surgical oncologist on Monday, will know the result of CA125 from today. 2 weeks ago, the number dropped from 177 to 135 after three elevation from 35 to 60 to177. I don't know if the drop means anything. My plan is that if the ca125 stay or drop, I will go to Taiwan in September and have HIPEC in October. If the number go up sharply, I will do the surgery in mid July when I am back from cruise. Either way I will study the CAAT and get in to the program...

    I put hope on this HIPEC. I wished that I will bring good news to the friends here!

    I don't know how to send private message to you, can you tell me how to do it? I want to buy the heat mat you described, sounds interesting and make sense.

    Thank you again for your time and valuable advice. It is nice to have someone like you to discuss this.

    Tracy

    More thoughts for you
    Tracy: I got your PM and will get back to you with more info on the biomat. I wish I "knew then what I know now" as I probably would have insisted on chemo before surgery--but I couldn't believe I even had cancer before surgery.

    There is another cancer marker called the HE4 (human epididymis protein) that should be under 150 that your doctor may also use to track your progress. My number was over 500 before surgery and under 30 when I finished chemo.

    If your CA-125 dropped a couple of weeks ago, you may have done something that decreased your overall inflammation (CA-125 tends to go up with inflammation). Although inflammation is a normal immune response to infection or injury, cancer recruits the inflammatory response to promote itself. So anti-inflammatory herbs like tumeric have been researched as cancer therapy and look promising.

    In Dr. Servan-Schreiber's book Anticancer: A New Way of Life, he writes that turmeric works better when it is in combination with pepper as it is used in making a curry. Really interesting book--highly recommended.

    LQ

Discussion Boards