My Mom-Stage IV, No More Chemo - Options?

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My Mom-Stage IV, No More Chemo - Options?

by laurat_112 on Wed Jun 19, 2019 12:44 AM

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Hi everyone,

My mom was diagnosed at the end of 2017 with Stage IIb Pancreatic Cancer, and has been fighting ever since.  In March of this year we got the news that the cancer had spread to the liver and my mom, the fighter she is, refused to give up.  She has been enrolled in a clincial trial since April and is doing a combo of Gema/Non-paxil therapy along with the study drug.  Her blood cells (red and white) do not recover well after treatments and even with the lowered chemo doses, they are probably going to pull her off the trial this week, Dr says they can't give her anymore boosters and the chemo seems to be doing more harm than good.  She did a total of 3 treatments of the chemo for the trial, I believe she should be on treatment # 9 by now.

She still wants to fight but does not want anymore chemo.  I'm not sure where she should go from here and she was told by her doctors that chemo is the ONLY treatment available for her.  I know that isn't true, but she wants me to start researching and I have no idea where to start.  She also has ascetis and severe swelling in her legs.  Any advise would be awesome and much appreciated.  

Thanks for listening :) 

RE: My Mom-Stage IV, No More Chemo - Options?

by ToddlerFather on Wed Jun 19, 2019 04:35 AM

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Chemo is used to name drugs so different as cytotoxins and targeted therapies... so the first thing to tell her is that every drug is different, and every patient reaction to a drug is different. 

If, as expected, she is taken out of the trial, are the doctors suggesting something she had already taken in the past or something new to her, even if something old ? 

And while I think the best line of action is to not stop conventional treatments, some alternative treatments that could be considered for her care:

- Raw vegan diet plus wheatgrass juicing (Hippocrates / Tree of Life / Gerson)
- Low Dose Naltrexone

- Alpha Lipoic Acid

- Dichloroacetetic Acid

- Paw-paw

- High-dose vitamin C (usually IV)

- Frankincense

Note that not all such treatments are compatible with chemo. Some are, some not... and the preference should be to keep chemo, not to any alternative treatment. 

I did 4 of the above alternative treatments, with one of the 4 having a remission effect on me... but my primary cancer and metastases site are too different from your mom's for you to rely on that for anything. 

Godspeed!

RE: My Mom-Stage IV, No More Chemo - Options?

by laurat_112 on Wed Jun 19, 2019 08:02 AM

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Thanks for the response. And yes,  she will probably go back to her previous treatment,  but the cancer wasn't responding to that at all, I believe that was the Fluxorel (excuse the spelling) and she's highly allergic to Campostar.  

I was also wondering about immunotherapy .  I'll be heading to Florida soon so I'll ask her dr about that.  If she's not giving up,  neither am I  :) I'll also tell her about your suggestions,  i truly appreciate it 

RE: My Mom-Stage IV, No More Chemo - Options?

by riverak on Wed Jun 19, 2019 03:21 PM

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On Jun 19, 2019 12:44 AM laurat_112 wrote:

Hi everyone,

My mom was diagnosed at the end of 2017 with Stage IIb Pancreatic Cancer, and has been fighting ever since.  In March of this year we got the news that the cancer had spread to the liver and my mom, the fighter she is, refused to give up.  She has been enrolled in a clincial trial since April and is doing a combo of Gema/Non-paxil therapy along with the study drug.  Her blood cells (red and white) do not recover well after treatments and even with the lowered chemo doses, they are probably going to pull her off the trial this week, Dr says they can't give her anymore boosters and the chemo seems to be doing more harm than good.  She did a total of 3 treatments of the chemo for the trial, I believe she should be on treatment # 9 by now.

She still wants to fight but does not want anymore chemo.  I'm not sure where she should go from here and she was told by her doctors that chemo is the ONLY treatment available for her.  I know that isn't true, but she wants me to start researching and I have no idea where to start.  She also has ascetis and severe swelling in her legs.  Any advise would be awesome and much appreciated.  

Thanks for listening :) 

We are so very sorry to hear about this challenge your Mom is having with her diagnosis and would like to provide some guidance to you in this time of need. One of our experienced Patient Advocates is available now to assist you at 847-342-6493. Please feel free to reach out anytime.

Looking forward to helping you,
Karen Rivera
CTCA Community Engagement and Outreach Team

RE: My Mom-Stage IV, No More Chemo - Options?

by ToddlerFather on Thu Jun 20, 2019 03:26 AM

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On Jun 19, 2019 8:02 AM laurat_112 wrote:

Thanks for the response. And yes,  she will probably go back to her previous treatment,  but the cancer wasn't responding to that at all, I believe that was the Fluxorel (excuse the spelling) and she's highly allergic to Campostar.  

I was also wondering about immunotherapy .  I'll be heading to Florida soon so I'll ask her dr about that.  If she's not giving up,  neither am I  :) I'll also tell her about your suggestions,  i truly appreciate it 

Perhaps fluouracil + docetaxel + 2 other drugs combo, FEC-T ? 

But considering what you mentioned that the treatment was already tried and had no response, then not taking it can be considered an option. 

Immunotherapy is a great conventional option and if one is available, go for it. While the response I got for my metastases wasn't from conventional immunotherapy, the inner workings is pretty much the same: put one's own immune system into kill mode. 

And since you mentioned Florida, Hippocrates Health Institute is located there in West Palm Beach. No one can guaranteee it will do any good for your mom's case, but it is at least a pleasant and enlightening experience. It did nothing to help my case, and yet I still suggest it to others. 

RE: My Mom-Stage IV, No More Chemo - Options?

by Janey6 on Thu Jun 20, 2019 03:50 PM

Quote | Reply

On Jun 19, 2019 4:35 AM ToddlerFather wrote:

Chemo is used to name drugs so different as cytotoxins and targeted therapies... so the first thing to tell her is that every drug is different, and every patient reaction to a drug is different. 

If, as expected, she is taken out of the trial, are the doctors suggesting something she had already taken in the past or something new to her, even if something old ? 

And while I think the best line of action is to not stop conventional treatments, some alternative treatments that could be considered for her care:

- Raw vegan diet plus wheatgrass juicing (Hippocrates / Tree of Life / Gerson)
- Low Dose Naltrexone

- Alpha Lipoic Acid

- Dichloroacetetic Acid

- Paw-paw

- High-dose vitamin C (usually IV)

- Frankincense

Note that not all such treatments are compatible with chemo. Some are, some not... and the preference should be to keep chemo, not to any alternative treatment. 

I did 4 of the above alternative treatments, with one of the 4 having a remission effect on me... but my primary cancer and metastases site are too different from your mom's for you to rely on that for anything. 

Godspeed!

I’m happy to hear your mom has someone to advocate for her. And care for her in a loving way. It means so much to have an accomplice in the fight against this badass disease. My husband got some relief from his ascites when they “tapped” his abdomen. Once they got out 6 liters of fluid. It’s a comfort measure and the fluid does come back but he had less pressure on diaphragm and respiratory status improved. He also wore elastic stockings and elevated legs as often as he could. It helped with swelling. Best regards, Janey

RE: My Mom-Stage IV, No More Chemo - Options?

by butterfly501 on Fri Jun 21, 2019 10:49 AM

Quote | Reply

On Jun 19, 2019 3:21 PM riverak wrote:

On Jun 19, 2019 12:44 AM laurat_112 wrote:

Hi everyone,

My mom was diagnosed at the end of 2017 with Stage IIb Pancreatic Cancer, and has been fighting ever since.  In March of this year we got the news that the cancer had spread to the liver and my mom, the fighter she is, refused to give up.  She has been enrolled in a clincial trial since April and is doing a combo of Gema/Non-paxil therapy along with the study drug.  Her blood cells (red and white) do not recover well after treatments and even with the lowered chemo doses, they are probably going to pull her off the trial this week, Dr says they can't give her anymore boosters and the chemo seems to be doing more harm than good.  She did a total of 3 treatments of the chemo for the trial, I believe she should be on treatment # 9 by now.

She still wants to fight but does not want anymore chemo.  I'm not sure where she should go from here and she was told by her doctors that chemo is the ONLY treatment available for her.  I know that isn't true, but she wants me to start researching and I have no idea where to start.  She also has ascetis and severe swelling in her legs.  Any advise would be awesome and much appreciated.  

Thanks for listening :) 

We are so very sorry to hear about this challenge your Mom is having with her diagnosis and would like to provide some guidance to you in this time of need. One of our experienced Patient Advocates is available now to assist you at 847-342-6493. Please feel free to reach out anytime.

Looking forward to helping you,
Karen Rivera
CTCA Community Engagement and Outreach Team

thank goodness proper attention found you! 

RE: My Mom-Stage IV, No More Chemo - Options?

by WYLife2live on Thu Jun 27, 2019 05:39 PM

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laurat 112,

In short, chemo is NOT the only treatment available. I was diagnosed with stage 3 PC in Sept of 2017.  I did chemo and chemo radiation, got the cancer in check and now am doing an alternative therapy from Mexico for the last 7 months.  With God's grace my tumor is gone and my tumor markers are undetectable and I am enjoying a normal active life.  Doctors can only prescribe what the FDA will allow them.  There are effective alternative therapies all over the world that WORK!!!  Try to have an open mind and look at them.  The Mexico one is working for me.  If you would like more information please let me know.  I am happy to share what has worked for me.

Blessings!!

RE: My Mom-Stage IV, No More Chemo - Options?

by mariab964 on Thu Jun 27, 2019 06:09 PM

Quote | Reply

On Jun 19, 2019 12:44 AM laurat_112 wrote:

Hi everyone,

My mom was diagnosed at the end of 2017 with Stage IIb Pancreatic Cancer, and has been fighting ever since.  In March of this year we got the news that the cancer had spread to the liver and my mom, the fighter she is, refused to give up.  She has been enrolled in a clincial trial since April and is doing a combo of Gema/Non-paxil therapy along with the study drug.  Her blood cells (red and white) do not recover well after treatments and even with the lowered chemo doses, they are probably going to pull her off the trial this week, Dr says they can't give her anymore boosters and the chemo seems to be doing more harm than good.  She did a total of 3 treatments of the chemo for the trial, I believe she should be on treatment # 9 by now.

She still wants to fight but does not want anymore chemo.  I'm not sure where she should go from here and she was told by her doctors that chemo is the ONLY treatment available for her.  I know that isn't true, but she wants me to start researching and I have no idea where to start.  She also has ascetis and severe swelling in her legs.  Any advise would be awesome and much appreciated.  

Thanks for listening :) 

Check out the book How to Starve Cancer by Jane McClelland as well as the Care Oncology Center (COC). Both outline protocols based on undermining the cancer’s metabolic pathways using off-label drugs and supplements. You’ll find several Facebook groups related to these protocols. Another place to go if she is really motivated is the pancreatic enzyme treatment. An oncologist named Nicholas Gonzalez did this for many years in NYC and was particularly successful with pancreatic cancer. I believe others have carried on since his death. You can find it with a Google search. It’s too bad patients have to get to the end of the line before they start investigating alternatives. Often they are too weakened by treatments to recover but it sounds like your mom is very motivated. She is lucky to have you in her corner. I personally have used the best of both traditional oncology and integrative treatments to achieve remission from Stage IV breast cancer. Best, Maria

RE: My Mom-Stage IV, No More Chemo - Options?

by ToddlerFather on Fri Jun 28, 2019 12:37 AM

Quote | Reply

Actually, doctors can prescribe both medications approved to different conditions (off-label) or to non-yet-approved drugs (early-access). But insurance companies usually don't like paying for what they call experimental treatments, and only the drug manafacturer can decide who gets early-access (although there are "right-to-try" legislation efforts trying to change that). 

There is also the issue that only treatments that are patentable generate enough revenue to pay for the FDA approval process, so anything that is not has almost no chance of being tested. 

But outside those issues, FDA-approved treatments are the ones that generate more harm than a good for a reasonable number of patients. Alternative treatments need to step up their scientific methodology in order to match possible treatments to conditions; I happen to benefit a lot from one of such alternative treatments as well (LDN), which put my stage IV ThyCa into remission, but I strive to detail about chances in different scenarios so an informed decision can be made. Both FDA-Approved and alternative treatments won't work for every case, and the hopes of a patient need to be handled carefully. 

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