Oxaliplatin?

BC Brady · April 2016

Hello Ladies,

I am not frequently on this blog but when I do, I find you all have such great information. I love reading the NED stories and all the hopeful and good scans. To recap: I was diagnosed in January of 2015 with stage 4 endometrial and in Feb 2015, had a successful surgery removing both small and large tumors from the peritoneum. There was no liver or bowel involvement at that time but they called it serous adenocarcinoma and genetic testing concluded that it contained very rare markers that there were no targeted therapies for. So I did 6 rounds of carbo/ taxol in Syracuse NY, had a mostly clear scan last September and by October, a reoccurrence - which basically seems to me that it never really went away. No solid tumors, all nodal, they said. Next up was doxil - mixed results. Switched Dr's to Roswell in Buffalo for the hope that a trial would become available there

( it hasn't ). So next was more carbo - this time with gemzar. Reacted the 2nd round very severely - so next came gemzar with cisplatin. Less of a reaction with that, but still scary.

This last time, they switched me to Oxaliplatin and Gemzar. It's still a platinum based drug and I'm concerned that, too, will have a life time dosage limit. Have any of you taken Oxaliplatin and how many rounds could you tolerate? Also, has anyone ever done a platinum detox? Not something my Dr would do, but a naturopath, perhaps. If so, was it helpful? Were you able to receive more platinum based drugs with fewer side effects?

Despite these chemo issues, I am doing pretty darn well. I continue to work full time and concentrate on the positive. I will be participating in the Ride For Roswell in June - 10 mile bicycle ride. I plan on celebrating every day God gives me on this beautiful planet. This week I have blue highlights in my newly grown hair. It looks ridiculous - I resemble an older version of the Sparkle Paper Towel Fairy - but I am celebrating NO reaction to the oxaliplatin 2 weeks ago. There's some craaaazzzzy side effects, but you can live through it.

Thanks for your advice - feel free to offer more!

Billie

TeddyandBears_Mom · April 2016

Billie,
Love the visual with

Billie,

Love the visual with your blue hair! So glad to hear from you. I'm amazed that you can be so active while going through chemo. Impressive!

I don't have any input on your questions but wanted to reach out and tell you that I was happy to see your post.

There is a lady posting (TakingControl58) that has great success using alternative meds. If you haven't seen her posts, you may want to check out her story. It gives hopes outside of the chemo only relm of things.

I hope you continue to find strength and success with keeping the tumors down.

Love and Hugs,

Cindi

EZLiving66 · April 2016

Glad to see you posting,

Glad to see you posting, Billie. I don't have any advice to offer you. I did three chemos and almost died - whether it was the carboplatin or the Taxotere, who knows, but I know I'll never had it again. Some crazy side effects too but found out it was because my liver was going into liver failure. Even now, six months after chemo ended I'm still having problems with neuropathy, balance and weakness on my left side. My physical therapist thinks maybe I had some bleeding in my brain during chemo but who knows??

You sound like you'd be a good reference for other kinds of chemotherapy!!

I hope all this works for you and I love the blue hair idea. One good thing about cancer is "What more can happen to me? I might as well do as I please" attitude. I know I have it!!

Love,

Eldri

molimoli · April 2016

Billie , great vibes sister.

Winning spirit , I can't comment on your post other than to say I am approving the hair color , so what ? you see ridiculous others may see crazy they will stay out of your 'I am living ' way-that's a good thing, so do whatever wherever,whenever.

Good luck with treatment, how you can do all of that and work is baffling to me, but great for you.

Moli -Loving your beautiful pic. and hugging .

BC Brady · April 2016

EZLiving66 said:
Glad to see you posting,
Glad to see you posting, Billie. I don't have any advice to offer you. I did three chemos and almost died - whether it was the carboplatin or the Taxotere, who knows, but I know I'll never had it again. Some crazy side effects too but found out it was because my liver was going into liver failure. Even now, six months after chemo ended I'm still having problems with neuropathy, balance and weakness on my left side. My physical therapist thinks maybe I had some bleeding in my brain during chemo but who knows??

You sound like you'd be a good reference for other kinds of chemotherapy!!

I hope all this works for you and I love the blue hair idea. One good thing about cancer is "What more can happen to me? I might as well do as I please" attitude. I know I have it!!

Love,

Eldri

Thanks!

You are clearly kicking butt with your great attitude, Edri. I think they call this "the new normal" for us, right? After the severe reaction. I am much more freaked out about chemo - this last time I stood up almost the whole time, humming and swaying and praying and basically waiting for the first signs of a reaction - the flushing the heart racing, etc. My husband even danced with me for a bit to keep me distracted. You must've been absolutely terrified. Maybe your body just accepted those three rounds and applied it directly to the cancer - no messing around!

Best of health to you Eldri!

Billie

BC Brady · April 2016

TeddyandBears_Mom said:
Billie,
Love the visual with
Billie,

Love the visual with your blue hair! So glad to hear from you. I'm amazed that you can be so active while going through chemo. Impressive!

I don't have any input on your questions but wanted to reach out and tell you that I was happy to see your post.

There is a lady posting (TakingControl58) that has great success using alternative meds. If you haven't seen her posts, you may want to check out her story. It gives hopes outside of the chemo only relm of things.

I hope you continue to find strength and success with keeping the tumors down.

Love and Hugs,

Cindi

alternatives and additions to chemo

Cindi, thanks for responding - I have seen TakingControl58 - great insight into metformin - which I've asked about at Roswell. So far I'm not getting a lot of inclusive naturopathic therapies. I'm not asking them to give up chemo - just something progressive that might move the needle in a positive direction, you know? When I went for a second opinion in Philly at the Cancer Treatment Centers of America - they explained they meet with a nutritionist, a naturopathic doctor, reiki and other pain management therapists. I had hoped that a big research hospital like Roswell would be the same. They can refer you, but your team doesn't actually plan your treatment together. So I'm on my own to stay as healthy as possible to withstand whatever they throw at me though the port. I'm going to pay more attention to this site and get all the ideas I can to fight this.

Love and hugs right back at ya,

Billie

BC Brady · April 2016

molimoli said:
Billie , great vibes sister.
Winning spirit , I can't comment on your post other than to say I am approving the hair color , so what ? you see ridiculous others may see crazy they will stay out of your 'I am living ' way-that's a good thing, so do whatever wherever,whenever.

Good luck with treatment, how you can do all of that and work is baffling to me, but great for you.

Moli -Loving your beautiful pic. and hugging .

Blue hair = Carpe Diem

Haha - Thanks Moli. I have a few events for work coming up that the blue hair may not be the most appropriate, but I believe what you said -

"Get out of my 'I am LIVING WAY'"!

I just was given a huge gift and inspiration for hanging in there - our first grandbaby was born on Feb 4th. And what a living doll he is.

Hugs to you as well,

Billie

Red Corvette · April 2016

Blue Hair

Blue hair is cool! Wear it proudly and if anyone says anything, like you said "get out of my living way"!!

Congrats on your new grandbaby.

Red Corvette

molimoli · April 2016

BC Brady said:
Blue hair = Carpe Diem
Haha - Thanks Moli. I have a few events for work coming up that the blue hair may not be the most appropriate, but I believe what you said -

"Get out of my 'I am LIVING WAY'"!

I just was given a huge gift and inspiration for hanging in there - our first grandbaby was born on Feb 4th. And what a living doll he is.

Hugs to you as well,

Billie

What is not appropriate is that we have to deal with this crud

when we should be rewarding our selves with wonderous things that we have spent our lives working and planning for.

You go right on to those meetings and rock your blue hair with 'tude and no apologies.( on this board we don't have attitudes ,we have 'tudes) Wish I could tell you where to find the thread with "tudes, you would have a laugh and understand how it came about.

Many will secretly admire your' I am living' boldness.

Don't forget to get some blue shoes to rock the hair.Then watch all the eyeballs flick from north to south passing by your big bold 'I am done with the restrictive program' smile All the while mentally humming the song 'A whole new world a new fantastic point of view' repeat,repeat,repeat.

Congrats on the partial continuation of you,in that little bundle, Wish I could just smell his neck,Don't know why babies necks smell better than ours All the time .

Follow through with your threat to hug and enjoy life to the fullest. Do it my sister.

Moli- Hugging.

ccfighter · April 2016

Hi,
im here from the GYN

Hi,

im here from the GYN boards ( cervical cancer). I had the same experience as you. Initial treatment with carbo/taxol and Cisplatin with radiation. 6 months after I finished I had met to lung and abdominal wall. Had those respected and started on carbo/Gemzar. Blood counts tanked so switched to Cisplatin/Gemzar. Had a terrible allergic reaction. Switched to oxaliplatin/Gemzar. First infusion was fine, second had a reaction. I am just allergic to all platinum now.

oxaliplatin is weirder then carbo or Cisplatin. Cold liquids feel like swallowing glass. Touching anything metal (door knobs, silverware) or anything cold made electric shock feelings in fingers. So weird. Gemzar caused my liver enzymes to elevate but otherwise was quite tolerable with fatigue the only noticeable side effect.

i haven't had any chemo siNce so I can't speak to the desensitizing process though I know that it is sometimes done. Good luck to you. Hugs.

takingcontrol58 · April 2016

comment from takingcontrol58

Billie,

I saw my name mentioned in a comment by Cindy so I thought I'd comment.

You mention you had mutations for which there is no treatment. Can you tell me
what those mutations were? None of the targeted drugs so far for endometrial cancer
have been very effective. (Everolimus and Temsirolimus). My integrative oncologist
wanted me to try Everolimus (Afinitor) but I refused, because I had such great
success with metformin.

I had two mutations that are found in a majority of Endometrial Cancers-
CTNNB1(mutation activates the Wnt signalling pathway) and
PlK3R1(activates the Plk/Akt/Mtor pathway).
The mutations activate these pathways(which stops cells from dying)-
metformin inhibits these pathways.

So I believe metformin was addressing more than just my
insulin resistance. The Plk pathway is mutated in over 80% of EC cancers.
If you have one of these mutations, I would bet metformin could help you.
There are numerous drugs in development for the Plk pathway but none have
been successful so far. If metformin, a cheap and well tolerated drug can reverse
one of your mutations, what do you have to lose to try it?

I was diagnosed with Stage 3b endometrioid adenocarcinoma:
within 2 months of surgery, my cancer metastasized to34cm, before any treatment.
Within 1 month of starting metformin (after only3 chemo infusions), I was down to 4cm.
I was down to 2cm after the remaining 3 infustions and just stayed on the metformin.

I am convinced the metformin helped me not the chemo, since the scientific facts say
that Taxol/Carbo only helps up to 40% of the people that get it- and they only measur.e
20% tumor shrinkage. This from Sloan Kettering, where I got my chemo infusions.

Another tip. I take two low dose aspirins a day- two for cancer,one for heart disease.
Aspirin does for cancer what it does for heart disease- thins the blood and inhibits the
COX2 enzyme which causes inflammation. We all know that chronic inflammation is the cause
of many diseases. Another cheap drug. If you can handle it, you should talk to your doctor
about it.

Remember, you can cut out the tumor, but you can't cut out the cancer. Cancer can always
come back if you don't figure out what made it grow in the first place. Chemo does not
stop its growth- it may slow it down for a time. But if you body is still creating an environment
for cancer cells to turn into a tumor, it can always come back. You have to get to the root of the
problem. Everyday we make billions of cells and they say 1% are cancer cells. Everyone has cancer
cells floating around- they just don't all turn into tumors because our immune system kills them,
just like it kills other viruses and bacteria. That is if it is working properly and isn't too destroyed
from the chemo.

I have had no new cancer since starting the metformin in Feb 2015-went into complete remission Aug 2015.

Takingcontrol58

BC Brady · April 2016

takingcontrol58 said:
comment from takingcontrol58
Billie,

I saw my name mentioned in a comment by Cindy so I thought I'd comment.

You mention you had mutations for which there is no treatment. Can you tell me
what those mutations were? None of the targeted drugs so far for endometrial cancer
have been very effective. (Everolimus and Temsirolimus). My integrative oncologist
wanted me to try Everolimus (Afinitor) but I refused, because I had such great
success with metformin.

I had two mutations that are found in a majority of Endometrial Cancers-
CTNNB1(mutation activates the Wnt signalling pathway) and
PlK3R1(activates the Plk/Akt/Mtor pathway).
The mutations activate these pathways(which stops cells from dying)-
metformin inhibits these pathways.

So I believe metformin was addressing more than just my
insulin resistance. The Plk pathway is mutated in over 80% of EC cancers.
If you have one of these mutations, I would bet metformin could help you.
There are numerous drugs in development for the Plk pathway but none have
been successful so far. If metformin, a cheap and well tolerated drug can reverse
one of your mutations, what do you have to lose to try it?

I was diagnosed with Stage 3b endometrioid adenocarcinoma:
within 2 months of surgery, my cancer metastasized to34cm, before any treatment.
Within 1 month of starting metformin (after only3 chemo infusions), I was down to 4cm.
I was down to 2cm after the remaining 3 infustions and just stayed on the metformin.

I am convinced the metformin helped me not the chemo, since the scientific facts say
that Taxol/Carbo only helps up to 40% of the people that get it- and they only measur.e
20% tumor shrinkage. This from Sloan Kettering, where I got my chemo infusions.

Another tip. I take two low dose aspirins a day- two for cancer,one for heart disease.
Aspirin does for cancer what it does for heart disease- thins the blood and inhibits the
COX2 enzyme which causes inflammation. We all know that chronic inflammation is the cause
of many diseases. Another cheap drug. If you can handle it, you should talk to your doctor
about it.

Remember, you can cut out the tumor, but you can't cut out the cancer. Cancer can always
come back if you don't figure out what made it grow in the first place. Chemo does not
stop its growth- it may slow it down for a time. But if you body is still creating an environment
for cancer cells to turn into a tumor, it can always come back. You have to get to the root of the
problem. Everyday we make billions of cells and they say 1% are cancer cells. Everyone has cancer
cells floating around- they just don't all turn into tumors because our immune system kills them,
just like it kills other viruses and bacteria. That is if it is working properly and isn't too destroyed
from the chemo.

I have had no new cancer since starting the metformin in Feb 2015-went into complete remission Aug 2015.

Takingcontrol58

Thank you Takingcontrol58

Dear One,

You give me hope - thank you thank you thank you. I go back to Roswell this Friday and will talk (again) about metformin. I have also contacted my GP about it. My genetic testing was so deflating I have buried it in my file and can't put mt hands on it at the moment - but I will get back to you about that as soon as I find it.

Billie

Oxaliplatin?

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