Not riding the chemo train again

LaundryQueen
LaundryQueen Member Posts: 676
edited July 2011 in Peritoneal Cancer #1
Even though I post a lot on the ovarian cancer board, I thought I would post my update here as there seem to be more people who share my situation on this board. The situation is where you watch your elevated CA-125 without going on chemo right away.

Basically, my MRI looks stable without lymph node involvement (no progression of visible disease since 3/11) and my CA-125 is sitting around 100. I've decided to see how long I can live with this condition before getting back on the chemo train as I have peritoneal cancer in addition to the ovarian cancer.

I am starting on new non-traditional treatments to prevent metastasis and slow progression of the disease. These are in addition to the 50 Gm vitamin C IVs that I have been doing twice/week for the past 10 months. The first new treatment is "low dose naltrexone" (prescription) which works to increase endorphins (www.lowdosenaltrexone.com). This treatment has greatly helped me sustain a positive attitude and decreased anxiety overall.

The second treatment is modified citrus pectin (MCP) which somehow coats the malignant cells and help the immune system recognize them. Here's something from the American Cancer Society web site:

These studies appear to show that MCP makes it difficult for cancer cells that break off from the main tumor to join together and grow in other organs. However, in most animal studies, MCP had no effect on the main tumor, suggesting that it may only be useful for preventing or slowing the growth of metastatic tumors in very early stages of development.

Recent laboratory studies of human and animal cells have provided information on how MCP might slow the spread of cancer. MCP appears to attach to galectin-3, a common chemical in many cells. Galectin-3 is present in abnormally high levels in many cancers and plays an important role in the growth, survival, and spread of cancer cells.

American Cancer Society and Citrus Pectin

Also check out: http://en.wikipedia.org/wiki/Modified_citrus_pectin

The final treatment is bindweed (aka VascuStatin) which has antiangiogenesis effects.

I feel great and figure that I can live with a little cancer in my belly as long as it doesn't decide to migrate into other tissues. So far, I have no ascites so I guess my decision to return to chemo will be based on my ability to keep the cancer from metastasizing further.

Will keep you posted on my progress or lack thereof.

LQ

Comments

  • AussieMaddie
    AussieMaddie Member Posts: 345 Member
    #2
    Enjoy being off the train!
    Hi,

    I've just had PET/CT scans which show no sign of tumours. The chemo I've been on has kept away the ascites (the cancerous fluid in the abdomen). The oncologist has continued to keep an eye on my CA125 each month as it comes down (except last month, it went up just one point, to 13). I'm to stay on chemo this month and next before we stop it for a time. Then it will be a matter of keeping a check of my CA125 each month still and wait and see if anything changes, such as the return of the ascites. Then we will probably look to the same chemo again since it has worked so well for me so far. But, like you, I will be off the train also.

    Thank you for your information on alternative treatments. I personally don't feel inclined to go that way, but many do.

    I wish you well,

    AussieMaddie
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #3
    No chemo for a while
    This is good news that the treatment has been effective for you both. That is the thing with our cancer - it is chronic and on-going and all we can hope for is a nice long break in between chemo. I hope you both get years xxxx

    Tina
  • AussieMaddie
    AussieMaddie Member Posts: 345 Member
    #4
    Tina Brown said:

    No chemo for a while
    This is good news that the treatment has been effective for you both. That is the thing with our cancer - it is chronic and on-going and all we can hope for is a nice long break in between chemo. I hope you both get years xxxx

    Tina

    For you too Tina
    (((( hugs
    For you too Tina
    (((( hugs ))))
    AussieMaddie
  • LaundryQueen
    LaundryQueen Member Posts: 676
    #5
    AussieMaddie said:

    For you too Tina
    (((( hugs
    For you too Tina
    (((( hugs ))))
    AussieMaddie

    Leaving for Mexico
    I found a clinic in Tijuana that offers all the therapies that I am interested in doing but can't get in the US. I'm leaving in two days & will be staying at the Immunity Therapy Center for 3 weeks.

    I'll keep the board posted on my stay. This place has hyperthermia, sonodynamic therapy & stem cell therapy. If it looks like I really need chemo, it'll be the insulin-potentiated chemo at one tenth the usual strength. I hope something will get me into remission.

    LQ
  • stella65
    stella65 Member Posts: 152
    #6
    LaundryQueen said:

    Leaving for Mexico
    I found a clinic in Tijuana that offers all the therapies that I am interested in doing but can't get in the US. I'm leaving in two days & will be staying at the Immunity Therapy Center for 3 weeks.

    I'll keep the board posted on my stay. This place has hyperthermia, sonodynamic therapy & stem cell therapy. If it looks like I really need chemo, it'll be the insulin-potentiated chemo at one tenth the usual strength. I hope something will get me into remission.

    LQ

    Hi, so glad you are able to
    Hi, so glad you are able to have your treatment and I hope it goes really well for you, I have just read your first post about the various things you are taking, I am going to suggest to mum that she gives some of them a go, we had a bit of a depressing day on friday with mums results ( must pay less attention to CA125) but now want to move onwards with positive thoughts and try some complementary stuff, so thank you for your information X
  • carolenk
    carolenk Member Posts: 907 Member
    #7
    stella65 said:

    Hi, so glad you are able to
    Hi, so glad you are able to have your treatment and I hope it goes really well for you, I have just read your first post about the various things you are taking, I am going to suggest to mum that she gives some of them a go, we had a bit of a depressing day on friday with mums results ( must pay less attention to CA125) but now want to move onwards with positive thoughts and try some complementary stuff, so thank you for your information X

    She's back on the chemo train again
    LaundryQueen is still in Tijuana and wanted me to post that she is getting intensive treatment at the clinic which she feels hopeful about. The treatments are 6 hrs/day, 6 days/week. The doctor felt she needed to do chemo again and so she has agreed despite her wish not to. Her decision was based on the fact that she found out thru a PET/CT (done right before she left for Mexico) that she has had cancer in her liver since October 2010. Apparenty what the MRI was calling "cysts" was a very stable cancer that "woke up" recently.

    The carboplatin will be given at 1/10 the dose of the usual dose and given as "insulin-potentiated" chemo. This involves giving the patient a small dose of insulin to take the blood sugar to 50 or so then the low dose of chemo is given with a sugar solution IV. The cancer cells are very greedy and take in the sugar first along with the chemo.

    I'll keep you posted on her progress as she can only send instant messages from her location.

    Carolen
  • VickiReed
    VickiReed Member Posts: 66
    #8
    carolenk said:

    She's back on the chemo train again
    LaundryQueen is still in Tijuana and wanted me to post that she is getting intensive treatment at the clinic which she feels hopeful about. The treatments are 6 hrs/day, 6 days/week. The doctor felt she needed to do chemo again and so she has agreed despite her wish not to. Her decision was based on the fact that she found out thru a PET/CT (done right before she left for Mexico) that she has had cancer in her liver since October 2010. Apparenty what the MRI was calling "cysts" was a very stable cancer that "woke up" recently.

    The carboplatin will be given at 1/10 the dose of the usual dose and given as "insulin-potentiated" chemo. This involves giving the patient a small dose of insulin to take the blood sugar to 50 or so then the low dose of chemo is given with a sugar solution IV. The cancer cells are very greedy and take in the sugar first along with the chemo.

    I'll keep you posted on her progress as she can only send instant messages from her location.

    Carolen

    Thanks for the update on LQ,
    Thanks for the update on LQ, I'm hoping this approach will work for her!
  • SOPHIE333
    SOPHIE333 Member Posts: 92
    #9
    stella65 said:

    Hi, so glad you are able to
    Hi, so glad you are able to have your treatment and I hope it goes really well for you, I have just read your first post about the various things you are taking, I am going to suggest to mum that she gives some of them a go, we had a bit of a depressing day on friday with mums results ( must pay less attention to CA125) but now want to move onwards with positive thoughts and try some complementary stuff, so thank you for your information X

    Me too
    Same here. THank you LQ for your encouraging thoughts. I will inform my mum too. It is worth trying. Good lucj to you too Stella!

    Love,
    Sophie
  • ff981318
    ff981318 Member Posts: 4
    #10
    Immunity center updates?

    How did the treatments work at the immunity center? Any success?

  • ff981318
    ff981318 Member Posts: 4
    #11
    Alternative treatment

    Has anyone tried Alternative Treatment in Mexico like the Immunity Clinic?

  • ff981318
    ff981318 Member Posts: 4
    edited September 2016 #12
    LaundryQueen said:

    Leaving for Mexico
    I found a clinic in Tijuana that offers all the therapies that I am interested in doing but can't get in the US. I'm leaving in two days & will be staying at the Immunity Therapy Center for 3 weeks.

    I'll keep the board posted on my stay. This place has hyperthermia, sonodynamic therapy & stem cell therapy. If it looks like I really need chemo, it'll be the insulin-potentiated chemo at one tenth the usual strength. I hope something will get me into remission.

    LQ

    what result did you see? Was it ok?

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    edited September 2016 #13
    ff981318~Welcome-LaundryQueen hasn't posted since 2011

     Good morning”ff981318”

     I see that you have joined us for the first time today, and are addressing “LaundryQueen” who has not communicated with anyone on this site since 2011.  I did look at her “about me” page, and she made one entry in February of 2012.  She has added nothing since then.  Here is the link for her “about me” page:  http://csn.cancer.org/user/140087

     It seems all too often people reply to a post which is quite “old”.  I wasn’t here in 2011 and have no knowledge of her problems, other than the statements she made on her last Feb. 2012 post.  We can only imagine the trials she has gone through, but it would seem that if she came out victorious surely she would have shared that wonderful news with us.  We’re all encouraged by others who have had positive experiences.

     So you may want to address your inquiry to someone else.  I see that “LaundryQueen” has already made the trek to Mexico for alternative treatments.  There are some on here that have mentioned making a trip to Mexico and perhaps they will see your inquiry and answer you.  I have just sent “LaundryQueen” a “private message” inquiring about her whereabouts and progress to date.  You could access her “about me” page and send her a private message.  I see there is another lady who was communicating with “LaundryQueen” while she was in Mexico.  You might want to send a private message to “Carolenk” as well.  If either of them are still around, I’m certain they will answer.  Let’s face it, when someone hasn’t posted in 5 years, we wonder if the cancer finally won the battle. 

     Meanwhile, please continue to post if you have more specific questions.  I, for one, am only being treated with traditional methods and am doing well.  After all, Stage IV is Stage IV and so far, no cure has been found.   I’m happy to have long periods of “progression free survival” (PFS).  That’s what my treatments are all about at this stage.  “It is what it is!”  I’m having a good quality of life even still, and am at total peace with myself and the Lord.  And for me, that’s the secret to coping with my Stage IV cancer. 

    Even though you haven’t really told us about your own specific reason for writing, if you have been diagnosed with some form of Peritoneal or Ovarian cancer, I’m sure some of us will have experiences that they can share with you. 

     Loretta

     Peritoneal Carcinomatosis/Ovarian Cancer Stage IV since Nov. 2012 and still doing well—all things considered

     

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