Platinum-resistant disease

carolenk

Platinum-resistance concern
I have the same concern about becoming platinum resistant (papillary serous OC stage IIIc w/ carcinomatosis). Especially since I had to take a break from chemo for 7 weeks due to brain problems from massive tumor die off.

I have been going to an alternative doctor who prescribed IV ascorbic acid 25-50 grams 3 times/week several months ago. The ascorbic acid is also called vitamin C and it is turns into hydrogen peroxide inside cancer cells to damage the cancer cells but does no harm to healthy cells. I think it is helping me but I am an uncontrolled experiment with N = 1 and don't know if I would be doing as well without the extra treatment.

My CA-125 was 13.2 last week down from 17,000 in October. I have only had 4 carboplatin treatments and 4 taxol (not doing any more taxol because the oncologist thinks I don't need it). I also use EDTA IV twice/week to chelate the platinum out from my body after it has done it's job so it doesn't build up. I am a nurse practitioner who has worked in a chelation clinic so I have confidence that this is a beneficial approach for me.

I thought that the Cancer Treatment Centers of America are doing clinical trials on IV ascorbic acid along with the standard of care treatment for OC but I cannot find info on that at this time.

best wishes to you,

Carolen

carolenk

Platinum-resistance concern
I have the same concern about becoming platinum resistant (papillary serous OC stage IIIc w/ carcinomatosis). Especially since I had to take a break from chemo for 7 weeks due to brain problems from massive tumor die off.

I have been going to an alternative doctor who prescribed IV ascorbic acid 25-50 grams 3 times/week several months ago. The ascorbic acid is also called vitamin C and it is turns into hydrogen peroxide inside cancer cells to damage the cancer cells but does no harm to healthy cells. I think it is helping me but I am an uncontrolled experiment with N = 1 and don't know if I would be doing as well without the extra treatment.

My CA-125 was 13.2 last week down from 17,000 in October. I have only had 4 carboplatin treatments and 4 taxol (not doing any more taxol because the oncologist thinks I don't need it). I also use EDTA IV twice/week to chelate the platinum out from my body after it has done it's job so it doesn't build up. I am a nurse practitioner who has worked in a chelation clinic so I have confidence that this is a beneficial approach for me.

I thought that the Cancer Treatment Centers of America are doing clinical trials on IV ascorbic acid along with the standard of care treatment for OC but I cannot find info on that at this time.

best wishes to you,

Carolen

123missy

Disneynutt said:

@123missy Please let me know
@123missy Please let me know how Doxil works for you.. that is my next cocktail. :-)

Will let you know. Just had
Will let you know. Just had first treatment on Wednesday.

Mum2bellaandwilliam

Disneynutt said:

Hi ...I'm sorry about your
Hi ...I'm sorry about your Mom but there is still hope!!! DO NOT FORGET THAT! There are other things out there. I wish you could remember the details of these stories or the URL to the web sites. I need some positive stories. I can't believe that all the doctors I have run into are such downers... they have no idea about how to encourage patients.

Next is doxil. Non platinum based so maybe it'll help.

Take care and all the best to you and your Mom. I keep you in my thoughts.

Kate

Kate
If you have a look on www.doxil.com on the home page go to thinking of usi g doxil for treatment , then click on more product information there is a table on therefor women are are platinum refractory / resistant. They have done studies and some of the women have achieved 15 month remissions using it, finger crossed we clock up those types of figures! I still haven't managed to locate these women I mentioned about but if I do I will post it on here for you. Xxx

1acme

carolenk said:

Platinum-resistance concern
I have the same concern about becoming platinum resistant (papillary serous OC stage IIIc w/ carcinomatosis). Especially since I had to take a break from chemo for 7 weeks due to brain problems from massive tumor die off.

I have been going to an alternative doctor who prescribed IV ascorbic acid 25-50 grams 3 times/week several months ago. The ascorbic acid is also called vitamin C and it is turns into hydrogen peroxide inside cancer cells to damage the cancer cells but does no harm to healthy cells. I think it is helping me but I am an uncontrolled experiment with N = 1 and don't know if I would be doing as well without the extra treatment.

My CA-125 was 13.2 last week down from 17,000 in October. I have only had 4 carboplatin treatments and 4 taxol (not doing any more taxol because the oncologist thinks I don't need it). I also use EDTA IV twice/week to chelate the platinum out from my body after it has done it's job so it doesn't build up. I am a nurse practitioner who has worked in a chelation clinic so I have confidence that this is a beneficial approach for me.

I thought that the Cancer Treatment Centers of America are doing clinical trials on IV ascorbic acid along with the standard of care treatment for OC but I cannot find info on that at this time.

best wishes to you,

Carolen

Chelation & Vitamin C injection
Hello

I had been diagnosed with TNBC, grade 3 and my Onco is getting me on 16 weeks Chemo (A/C and Taxol)begin in Mid April.

I asked about his opinion about Chelation therapy and Vitamin C injection AFTER chemo, but he set that nothing was proven, which is had to believe. I am continuously searching for more info in regards of this issue. My logic is if they load me with Chemo=Poison, I better get it out from my body AFTER chemo. But my Onco disagree with my logic.

It is frustrating.

Hugs Helen

LaundryQueen

1acme said:

Chelation & Vitamin C injection
Hello

I had been diagnosed with TNBC, grade 3 and my Onco is getting me on 16 weeks Chemo (A/C and Taxol)begin in Mid April.

I asked about his opinion about Chelation therapy and Vitamin C injection AFTER chemo, but he set that nothing was proven, which is had to believe. I am continuously searching for more info in regards of this issue. My logic is if they load me with Chemo=Poison, I better get it out from my body AFTER chemo. But my Onco disagree with my logic.

It is frustrating.

Hugs Helen

Nothing is proven
Helen

Of course the oncologist is going to disagree with you--they are experts in surgical/pharmaceutical treatment of cancer. Don't expect them to know everything. Look for an integrative physician who can help you so you can take advantage of the best of both worlds.

I had to take matters into my own hands regarding my therapy; although I am certainly NOT an oncologist, I am the expert on ME! Even if I might only be getting a placebo effect, I believe that the ascorbic acid and chelation treatments are working for me. I appreciate the open-mindedness of the oncologist that I have on my team but he is not the only expert that I consult with.

I can live with "nothing is proven" as long as it "does no harm." You can't say that about chemo. Chemo is all about "risk vs. benefit." Sometimes the benefits of new combinations of chemo amount to a matter of only an additional 2-3 months of survival. I think someone should study the long-term survivors and look for a common denominator in the ones who do well long-term.

What helps me to feel empowered is to take action--some kind of action even if it isn't proven as long as it does no harm.

Best wishes to you.

Mum2bellaandwilliam

LaundryQueen said:

Nothing is proven
Helen

Of course the oncologist is going to disagree with you--they are experts in surgical/pharmaceutical treatment of cancer. Don't expect them to know everything. Look for an integrative physician who can help you so you can take advantage of the best of both worlds.

I had to take matters into my own hands regarding my therapy; although I am certainly NOT an oncologist, I am the expert on ME! Even if I might only be getting a placebo effect, I believe that the ascorbic acid and chelation treatments are working for me. I appreciate the open-mindedness of the oncologist that I have on my team but he is not the only expert that I consult with.

I can live with "nothing is proven" as long as it "does no harm." You can't say that about chemo. Chemo is all about "risk vs. benefit." Sometimes the benefits of new combinations of chemo amount to a matter of only an additional 2-3 months of survival. I think someone should study the long-term survivors and look for a common denominator in the ones who do well long-term.

What helps me to feel empowered is to take action--some kind of action even if it isn't proven as long as it does no harm.

Best wishes to you.

@disneynutt !
Found it!!!! Hope you are ok I haven't seen you on here for a while but I stumbled across this and remember you had wanted to read it for yourself, it's on ovarian cancer national alliance website, under the heading Doxil.... What next.

Sorry I couldn't copy and paste this iPad is a nightmare!!, you can do it on here but it is really difficult , it never seems to highlight the right bit,and if it does it then doesn't copy it for you!!! Gggggrrrrrr.

Liz x

Mum2bellaandwilliam

LaundryQueen said:

Nothing is proven
Helen

Of course the oncologist is going to disagree with you--they are experts in surgical/pharmaceutical treatment of cancer. Don't expect them to know everything. Look for an integrative physician who can help you so you can take advantage of the best of both worlds.

I had to take matters into my own hands regarding my therapy; although I am certainly NOT an oncologist, I am the expert on ME! Even if I might only be getting a placebo effect, I believe that the ascorbic acid and chelation treatments are working for me. I appreciate the open-mindedness of the oncologist that I have on my team but he is not the only expert that I consult with.

I can live with "nothing is proven" as long as it "does no harm." You can't say that about chemo. Chemo is all about "risk vs. benefit." Sometimes the benefits of new combinations of chemo amount to a matter of only an additional 2-3 months of survival. I think someone should study the long-term survivors and look for a common denominator in the ones who do well long-term.

What helps me to feel empowered is to take action--some kind of action even if it isn't proven as long as it does no harm.

Best wishes to you.

@disneynutt !
Found it!!!! Hope you are ok I haven't seen you on here for a while but I stumbled across this and remember you had wanted to read it for yourself, it's on ovarian cancer national alliance website, under the heading Doxil.... What next.

Sorry I couldn't copy and paste this iPad is a nightmare!!, you can do it on here but it is really difficult , it never seems to highlight the right bit,and if it does it then doesn't copy it for you!!! Gggggrrrrrr.

Liz x

gorms2007

survivingovca said:

http://clinicaltrials.gov/
http://clinicaltrials.gov/ is the link for clinical trials. You can narrow your search criteria by type of cancer, open studies, etc.

I am super platinum resistant (the 'super' is not part of medical terminology! ). I actually grew large amounts of cancer during the six rounds of taxol/carbo. It was awful, knowing I had poisoned myself with that toxic concoction, with no success. Doxil didn't work for me either (although I know it has been very helpful for other platinum resistant women). I can understand how you feel, because I was certain it was the "end" after that. Thankfully, my husband was researching all the while, about new treatments and trials etc., and I found a clinical trial that was a good fit for me and my medical circumstances. I have now been free of any treamtent for over a year, with no signs of disease. There is hope.

You do have to conduct some of the research yourself though, to find the right 'fit' for you and your particular disease.

Good luck!

SURVIVINGOVACA--a question for you.
I was diagnosed with fallopian cancer IIIC in June 2007, had hysterectomy, debulking, omentum gone, and appendix too..they "cleaned me out".
I had Interperitoneal taxol and cisplatin for my treatments...then in Aug. 2008, it recurred and I had gemcitabine and carboplatin, another recurrence in Sept. 2009 and used carboplatin and doxil...now it's back again April 2011....
Am waiting to see what the results of my PET scan show...ca 125 is 886.
Would you be willing to tell me the name/place/chemo used...any info on the trial that you felt was a good fit for you. I am platinum sensitive....and only get about 6-7 months and then it comes back. I'd really appreciate your help. Thanks.

kellyh33

survivingovca said:

http://clinicaltrials.gov/
http://clinicaltrials.gov/ is the link for clinical trials. You can narrow your search criteria by type of cancer, open studies, etc.

I am super platinum resistant (the 'super' is not part of medical terminology! ). I actually grew large amounts of cancer during the six rounds of taxol/carbo. It was awful, knowing I had poisoned myself with that toxic concoction, with no success. Doxil didn't work for me either (although I know it has been very helpful for other platinum resistant women). I can understand how you feel, because I was certain it was the "end" after that. Thankfully, my husband was researching all the while, about new treatments and trials etc., and I found a clinical trial that was a good fit for me and my medical circumstances. I have now been free of any treamtent for over a year, with no signs of disease. There is hope.

You do have to conduct some of the research yourself though, to find the right 'fit' for you and your particular disease.

Good luck!

Trials
What clinical trial did you do. My Mom is currently in one too. She had her last CT scan March 8th which showed no disease progression but her tumor did not shrink nor did it grow. She has her next one April 19th. The oncologist told mom yesterday her stomach is softer then her previous visits. I am praying this is a good sign, I am desperate for some positive news.
Kelly