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PCW

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Hi Everyone,

I did get my Keytruda the following Tuesday. Didn’t get ( thank God) major SE except a little vertigo. I’m scheduled to receive my next round of chemo on the 18th.  I never imagined before I would look forward to receiving my chemo. This time, I will get all three agents on a single day. Lou, my hiccups would stop once decadron is D/C so not a major big deal for myself.


I know Lexie is undergoing her clinical trial at the moment and I sincerely hope the best for her from the bottom of my heart! Meanwhile, hope everyone’s taking good care of her/ himself! Till next time. Regards to all.

                                         Paul CW

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Hey, Paul,

Thanks for checking in! I'm fine and at home ATM--Surgery was a breeze and I'll go in for infusions on June 2 (or so we plan).

Glad to hear you're doing well. I was really pleasantly surprised at how manageable the triplet was. Good to hear you sounding so positive.

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Paul,

Good to hear from you again.  I'm glad you're doing well and especially glad that the hiccups won't become a major issue for you.  It also sounds like your side-effects have been minimal and that is always good.  While I have not had chemo I read the posts of others and it really seems that SE's can be all over the map by person or even during the course of treatment.  So, your news is very welcome.  Stay strong and keep in touch we're here to answer any questions or concerns you may have.

Lou

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  • 2 months later...

Hi Everyone!

Been a while since I posted last time. Would like to give a little update: I just finished my 4 cycles of triplets for my stage IV NSCLC.  Will resume maintenance therapy in August presumably with Alimta and Keytruda without Carbo , indefinitely.  Fortunately, the almost only SE I’m experiencing is fatigue. My oncologist said it’s due to the accumulated effects of chemo. My blood works show bone marrow depression so she cancelled the 5th and 6th cycles which were initially planned.  For the past few months, I started researching on the internet and Mr. Google  (as many of you would have done ) I read 2 books that are particularly impressive: ‘the cancer code ‘ by Jason Fung and ‘how to starve cancer ‘by Jane Mclelland . Both books advocate alternative medicine (in conjunction with conventional protocols) emphasizing the use of herbal medications , dieting/fasting , nutrition and the use of ‘repurposed medications’.  Basically, the repurposed drugs are a list of prescription drugs out of patents that have  shown evidence of anticancer/ anti tumor effects in studies. Many trials and studies are discussed in PubMed. At the moment, I’m searching for an integrative oncologist for consultation.  As mentioned earlier, I have an ERBB2 mutation and up to date, only a few phase II clinical trials are available.  Since I have multiple organ metastasis , so sad to say time is not on my side.  I’m wondering if any friends here on this forum have any opinion or insight or perhaps any experience  regarding this so called integrative oncology and any input is greatly appreciated.  Meanwhile, I hope everyone is well !

                                      Paul CW

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5 hours ago, PCW said:

Hi Everyone!

Been a while since I posted last time. Would like to give a little update: I just finished my 4 cycles of triplets for my stage IV NSCLC.  Will resume maintenance therapy in August presumably with Alimta and Keytruda without Carbo , indefinitely.  Fortunately, the almost only SE I’m experiencing is fatigue. My oncologist said it’s due to the accumulated effects of chemo. My blood works show bone marrow depression so she cancelled the 5th and 6th cycles which were initially planned.  For the past few months, I started researching on the internet and Mr. Google  (as many of you would have done ) I read 2 books that are particularly impressive: ‘the cancer code ‘ by Jason Fung and ‘how to starve cancer ‘by Jane Mclelland . Both books advocate alternative medicine (in conjunction with conventional protocols) emphasizing the use of herbal medications , dieting/fasting , nutrition and the use of ‘repurposed medications’.  Basically, the repurposed drugs are a list of prescription drugs out of patents that have  shown evidence of anticancer/ anti tumor effects in studies. Many trials and studies are discussed in PubMed. At the moment, I’m searching for an integrative oncologist for consultation.  As mentioned earlier, I have an ERBB2 mutation and up to date, only a few phase II clinical trials are available.  Since I have multiple organ metastasis , so sad to say time is not on my side.  I’m wondering if any friends here on this forum have any opinion or insight or perhaps any experience  regarding this so called integrative oncology and any input is greatly appreciated.  Meanwhile, I hope everyone is well !

                                      Paul CW

Hey Paul,

 Glad to see you’re holding on and you can “starve” cancer with a high protein and low carb/sugar diet. Stay strong and hope all the best for you. 
 

edit: to clarify by starve i just mean to provide less fuel available to cancer cells, not that it’s in any way a cure. 

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Paul, there is a lot of discussion about off-label or repurposed drugs. Some oncologists are open to them, some are not. Examples in the EGFR world are aspirin, atorvastatin (cholesterol), metformin (diabetes) and others. I asked my oncologist what he thought but since I'm NED he doesn't want to make any changes. 

It certainly doesn't hurt to explore these options. Glad you're looking for an integrative medicine physician. 

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@BrianK, I personally do not believe you can starve cancer by following a high protein/low carb diet. I was on a keto diet for most of 2019, and while I lost weight, I was diagnosed with Stage 3b NSCLC in October of that year. But I do know people who follow different types of diets. Do whatever makes you comfortable. 

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20 minutes ago, Judy M2 said:

@BrianK, I personally do not believe you can starve cancer by following a high protein/low carb diet. I was on a keto diet for most of 2019, and while I lost weight, I was diagnosed with Stage 3b NSCLC in October of that year. But I do know people who follow different types of diets. Do whatever makes you comfortable. 

Hi Judy,

Sorry i didn’t mean to imply that cancer would fade away from a high protein diet but rather it could potentially slow it down since these rapidly dividing cells mainly depend on atp derived from glucose. 

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Paul,

Thank you for providing an update.  The only thing I didn't see is if your doctors have done any scans or other tests to see how you responded to the treatments.  Have you done any tests yet?  I am glad to hear that your SE's are limited to fatigue, that seems better than some others have experienced.  I look forward to hearing about any test results and how your next leg of the treatment goes.

BTW, you do remember that most of us tell people to STAY AWAY FROM DR GOOGLE! No, I was not yelling at you, just trying to impress that so much of what is on the web isn't reliable and or accurate to what today's treatment options can produce as outcomes.  So please do your best to stick with questions to your medical team and to us here.  

Lou

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Hi Lou,

Thanks for your response. I’m scheduled to have a cat scan in about 2 weeks. I totally agree with you; there are all sorts of information (misinformation) on the web but personally I pay attention to the more prestigious sources. We have some advancement in cancer treatment but unfortunately there’s a great deal we don’t understand because of the complexity of the disease.  BTW, even though integrative oncology is a relative new field, the service is  provided by licensed oncologists. They are employing an additional strategy in conjunction with the standardized conventional protocols. The theories behind it sound quite logical and that fuels my continuous searching. 
                                     Paul CW

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Hi Brian and Judy,

Thank you both for your info earlier. Brian, I am trying my best to eliminate as much refined sugar and cholesterol as possible  from my diet( which is easier said than done) both are known to fuel rapidly dividing  malignant cells. I eat only resistant carbohydrates which are supposed to maintain a steady blood sugar level. And Judy, I’m still searching for a integrative oncologist . Been calling up different places. I figure that a second opinion wouldn’t hurt especially I am a stage IV patient.  I am really curious if any of these so called ‘repurposed’ drugs can help keeping my cancer in check or if they can exert synergistic effects with the maintenance chemo I’ll be getting.  I guess I’m willing to try anything at this point! 

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You might look up a hematologist/oncologist. I've meant two. Both very into organic/special diets. Might be a coincidence?

Me? I'm into pizza.

Peace

Tom

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