Treatment WITHOUT chemo and radiation

noellec
noellec Member Posts: 2
edited March 2014 in Sarcoma #1
My mother just had her left leg amputated (mid-thigh) this past Monday. Within a week, she had gone to the doctor complaining of arthritis and expecting a knee replacement, only to find she had a horrible sarcoma wrapped around her knee. Amputation was the only option to save her life. She is not a candidate for chemo since she has avascular neucrosis (a bone disease with the bones dying in spots). Chemo and radiation would only hurt her bones more. She has been in high spirits, though we are all in shock. It is very difficult to know that you cannot have chemo and that if the cancer comes back, they can try to cut it out, but you may not make it. She will have chest x-rays for the next year to watch her lungs. We have researched that this type of sarcoma occurs in young adults and pre-teens, so it is not as common for a 51 year-old. We are hoping that she can get a nice prosthetic soon, since she is fumbling around with a large cast now. If anyone has any experience with cancer treatment that does NOT include chemo (such as amputation only, and a strictly organic diet), please share. I have not seen any discussions on this, and I hope it is not because people only survive with chemo. I will keep you all in my prayers.

Comments

  • 571er
    571er Member Posts: 5
    #2
    I have had five surgeries since 1992 to remove sarcomas from different areas not including my extremidies. The use of radiation and chemo only limited the amount of surgeries that could be performed in the future because they breakdown the internal tissues and the risk of internal bleeding is too great. If your cancer can be removed by surgery, do that as long as it is possible. I have a type of cancer that was called liomyosarcom, but has resently been reclassified as GIST. The Univ. of Ariz. Cancer Center was involved with a study of the Gleevic or STI571 drug. It has been a miracle for me. I am cancer free for over 18 months for the first time since 1992. I am now 52years old and looking for a new start at life. This seem more daunting a task than fighting the cancer. I was and am still free of any other complication like, obesity, smoking,
    diabeties, heart, etc. It is really key in maintainging a positive attitude to the current and future situations that will arise. The use of herbal remedies has not shown any concrete results except in keeping yourself more aware of watching what you eat. Fats and caffine have been found to be more associated with cancer than not, so always cut out thses foods when modifing your diet. I like Andrew Weil's cookbook, The Healthy Kitchen for recepies that are really good and healthy. Another one I like is the Mediterraean Vegetables book by Clifford A. Wright. Most scarcomas are managable with just surgery and new designer drugs are comming along at an alarming rate. In 1992 I hoped to stay alive at least 10 years and then see what more I could do then. It has been 10 years and now I have a whole new future because of a new breakthrough drug that was only a theory ten years ago. Keep current with ALL new studies in cancer and talk to your oncologist about them often. Ask to be referred to any physicians involved in studies, keep in the loop of information. When you get seen and heard you will get thought of when any new information is available. I met the physician who referred me to the study I am in now, while in the hospital having a bad reaction to the chemo. I couldn't tolorate the medications and they did not effect the tumor anyway, so not having it is not as important as you may think, especially if it is not the prefered treatment for your specific tumor. So I hope for the best for your mom knowing that the best is yet to come.
    Just be there when it comes.
  • CALIFORNIABABE
    CALIFORNIABABE Member Posts: 2
    #3
    my brother has terminal cancer, (is waiting for a clinical trial that might buy him some time)..His cancer hasn't respond to radiation, and it hasn't respond to the 3 types of chemos given so far...There are no more treatments available for him at this time, except an experimental drug... Someone sent me a very interesting info regarding vitamin B17, if you email me I'll gladly forward you the information...

    The best to you and your mom. She'll be in my prayers.
    ytmo2002@yahoo.com
  • pamb
    pamb Member Posts: 1
    #4
    571er said:

    I have had five surgeries since 1992 to remove sarcomas from different areas not including my extremidies. The use of radiation and chemo only limited the amount of surgeries that could be performed in the future because they breakdown the internal tissues and the risk of internal bleeding is too great. If your cancer can be removed by surgery, do that as long as it is possible. I have a type of cancer that was called liomyosarcom, but has resently been reclassified as GIST. The Univ. of Ariz. Cancer Center was involved with a study of the Gleevic or STI571 drug. It has been a miracle for me. I am cancer free for over 18 months for the first time since 1992. I am now 52years old and looking for a new start at life. This seem more daunting a task than fighting the cancer. I was and am still free of any other complication like, obesity, smoking,
    diabeties, heart, etc. It is really key in maintainging a positive attitude to the current and future situations that will arise. The use of herbal remedies has not shown any concrete results except in keeping yourself more aware of watching what you eat. Fats and caffine have been found to be more associated with cancer than not, so always cut out thses foods when modifing your diet. I like Andrew Weil's cookbook, The Healthy Kitchen for recepies that are really good and healthy. Another one I like is the Mediterraean Vegetables book by Clifford A. Wright. Most scarcomas are managable with just surgery and new designer drugs are comming along at an alarming rate. In 1992 I hoped to stay alive at least 10 years and then see what more I could do then. It has been 10 years and now I have a whole new future because of a new breakthrough drug that was only a theory ten years ago. Keep current with ALL new studies in cancer and talk to your oncologist about them often. Ask to be referred to any physicians involved in studies, keep in the loop of information. When you get seen and heard you will get thought of when any new information is available. I met the physician who referred me to the study I am in now, while in the hospital having a bad reaction to the chemo. I couldn't tolorate the medications and they did not effect the tumor anyway, so not having it is not as important as you may think, especially if it is not the prefered treatment for your specific tumor. So I hope for the best for your mom knowing that the best is yet to come.
    Just be there when it comes.

    I was so encouraged by your message re:
    Gleevec. I was recently diagnosed with a GIST tumor, have had surgery, and have an appointment 4/11 at Sloan Kettering where I hope to find out about Gleevec trials. Did you have any side effects? Any information you can provide will be appreciated. Thanks. Pam
  • melissadean
    melissadean Member Posts: 2
    #5
    Noelle, You may want to check out CAAT Therapy at http://www.hpjohncancerinstitute.org. It deprives cancer cells of amino acids thru a special diet that is followed for 3-9 months. I am checking into it for metastatic breast cancer (Stage IV). However, it is expensive. Melissa
  • MatthewS951
    MatthewS951 Member Posts: 8
    #6
    pamb said:

    I was so encouraged by your message re:
    Gleevec. I was recently diagnosed with a GIST tumor, have had surgery, and have an appointment 4/11 at Sloan Kettering where I hope to find out about Gleevec trials. Did you have any side effects? Any information you can provide will be appreciated. Thanks. Pam

    Hello Pam, I had a GIST removed from my stomach last November. Do you know of any good sources of information on GIST? I've searched and have found very little, other than some articles on Gleevec. I'm very interested in learning more on this form of cancer that I've had. Thank You, MatthewS
  • MatthewS951
    MatthewS951 Member Posts: 8
    #7
    pamb said:

    I was so encouraged by your message re:
    Gleevec. I was recently diagnosed with a GIST tumor, have had surgery, and have an appointment 4/11 at Sloan Kettering where I hope to find out about Gleevec trials. Did you have any side effects? Any information you can provide will be appreciated. Thanks. Pam

    Hi Pam, I too had a GIST surgerically removed last November. As of a month ago I have been told I'm cancer free, but for how long is uncertain. I am finally making a great recovery (I had two surgeries in five days time, one to remove the GIST and the second to cut an exclusion area around where the tumor was after pathology found cancer cells in the mass they removed. Keep me informed here as to how your appointment at Sloan Kettering went. I'll be back at Mary Bird Perkins Cancer Center here in Baton Rouge in two weeks for another CT scan. I'm finally beginning to feel as good as I did prior to my surgeries. Take Care, Matthew S.
  • amelina
    amelina Member Posts: 3
    #8
    pamb said:

    I was so encouraged by your message re:
    Gleevec. I was recently diagnosed with a GIST tumor, have had surgery, and have an appointment 4/11 at Sloan Kettering where I hope to find out about Gleevec trials. Did you have any side effects? Any information you can provide will be appreciated. Thanks. Pam

    I am currently enrolled in a clinical trial for Gleevec at the Univ. of Michigan. I have a soft tissue sarcoma (desmoid tumor) in my neck area. I know they are having alot of success w/ GIST and gleevec. It would be worth looking into. I take 6 pills a day. some side effects, but i'm sure they will become more managable in time. Good luck to you.
  • amelina
    amelina Member Posts: 3
    #9
    pamb said:

    I was so encouraged by your message re:
    Gleevec. I was recently diagnosed with a GIST tumor, have had surgery, and have an appointment 4/11 at Sloan Kettering where I hope to find out about Gleevec trials. Did you have any side effects? Any information you can provide will be appreciated. Thanks. Pam

    I've been taking Gleevec for 4 weeks now. At first, U of M docs had me on a high dose (600 mgs daily) which made me pretty sick. Flu like symptoms, vomiting. They then lowered my dose to 400 mgs. daily, which is much more tolerable. I have good days and bad days, but it feels like my body is getting used to it. If it will shrink my sarcoma, it will be well worth it. How did your appointment go on the 11th? Best of luck.
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #10
    melissadean said:

    Noelle, You may want to check out CAAT Therapy at http://www.hpjohncancerinstitute.org. It deprives cancer cells of amino acids thru a special diet that is followed for 3-9 months. I am checking into it for metastatic breast cancer (Stage IV). However, it is expensive. Melissa

    web address you gave does not exist according to Yahoo
  • Danzilla123
    Danzilla123 Member Posts: 2
    #11
    amelina said:

    I've been taking Gleevec for 4 weeks now. At first, U of M docs had me on a high dose (600 mgs daily) which made me pretty sick. Flu like symptoms, vomiting. They then lowered my dose to 400 mgs. daily, which is much more tolerable. I have good days and bad days, but it feels like my body is getting used to it. If it will shrink my sarcoma, it will be well worth it. How did your appointment go on the 11th? Best of luck.

    i've heard that gleevec only works for two years after that it stops and the tumor grows back
  • Danzilla123
    Danzilla123 Member Posts: 2
    #12
    pamb said:

    I was so encouraged by your message re:
    Gleevec. I was recently diagnosed with a GIST tumor, have had surgery, and have an appointment 4/11 at Sloan Kettering where I hope to find out about Gleevec trials. Did you have any side effects? Any information you can provide will be appreciated. Thanks. Pam

    i've recently heard gleevek works for two years and stops after that leaving the tumor to grow back
  • lifelinemom
    lifelinemom Member Posts: 5
    #13
    fibrohistiocytoma sarcoma
    In 1991 I had a very aggressive cancer of the middle finger left hand. After the initial biopsy, i went to MD Anderson in Houston for consultation and surgery. Doctors there had never seen it in the fingers. A second surgery was performed there, but the neoplasm had spread again. Without insurance in Texas, I went to Cincinnati and ended up having my whole left hand amputated. No chemo or radiation was used, because no one knew if it would do any good. The sarcoma metatasized in my lung, but i chose prayer over removal of my lung. on a Ct scan 3 months later, the cells were gone. Prayer does work. I'm alive 18 years later, when they gave me a survival rate of one year.

Discussion Boards