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Re: Opinions on alternative treatments?

Posted: Sun Jul 28, 2019 9:03 am
by TinaFish
Jacques wrote:
I have many other comments on the topic of your current thread, but for now I will refrain from saying anything. I think it's better that I say nothing at all.


Why, Jacques? Please share your comments. CRGuy is passionate about the experiences of Vilca and Marc because they were his friends. But if there's information that can help people, then it should be shared, right?

Re: Opinions on alternative treatments?

Posted: Sun Jul 28, 2019 10:18 am
by TinaFish
RP1954 has some really interesting stuff to say about additional meds/vitamins. Is he still active on this site?

memberlist.php?mode=viewprofile&u=41553

Re: Opinions on alternative treatments?

Posted: Sun Jul 28, 2019 12:12 pm
by bitchslapped
I'm not sure just what's going on here, but I do know Maggie tends to lurch in the bowels of the forum, resurfacing old threads of members who have passed on.

Vilca was a friend of mine on & off forum (& many others I might add) & I personally find referencing the path she chose about as questionable as it gets. And the point is? Is she an example of what not to do or used an an aid to help a very new OP use process of elimination @ the expense of someone else's journey whose memory many hold dear?

Vilca was an independent, accomplished, generous human being who did her own research. It sounds as though the OP is quite capable of the same in searching this forum.

This thread appears to have stepped in a pile of...

BS

Re: Opinions on alternative treatments?

Posted: Sun Jul 28, 2019 9:54 pm
by TinaFish
bitchslapped wrote:I'm not sure just what's going on here, but I do know Maggie tends to lurch in the bowels of the forum, resurfacing old threads of members who have passed on.

Vilca was a friend of mine on & off forum (& many others I might add) & I personally find referencing the path she chose about as questionable as it gets. And the point is? Is she an example of what not to do or used an an aid to help a very new OP use process of elimination @ the expense of someone else's journey whose memory many hold dear?

Vilca was an independent, accomplished, generous human being who did her own research. It sounds as though the OP is quite capable of the same in searching this forum.

This thread appears to have stepped in a pile of...

BS


Kind of cool... I seem to have stumbled upon this microcosm where people know each other so well! Thank you for the compliment, Bitchslapped.

I'm here because I'm terrified and I feel like time is of the essence as far as the decisions I make about the ways in which I try to beat this disease. Of course I want to be successful, but also, I want others to be able to read about my and other peoples' first-hand experiences with alternative protocol. Yes, of course there are clinical studies. But they're all so impersonal and there are so many herbs/vitamins/meds suggested. Were anyone to take all of them, I'm sure their liver couldn't handle it. So I'm trying to intelligently weed out the treatments that seem the most effective (and the most synergistic), but since I have absolutely no experience with them, I was hoping to communicate with people who did have experience with them.

Wouldn't it be great if someone who was newly-diagnosed could come across this thread and have a definitive list of meds/supplements to acquire immediately so that he/she could take immediate control of this disease?? I can't imagine that the information in clinical trials could be too erroneous, right?

RP1954 did make such a list... but he's so much more educated than I am about all of this stuff, I frankly admit that a lot of it is over my head. I was hoping for more of an "idiot's guide."

Re: Opinions on alternative treatments?

Posted: Mon Jul 29, 2019 6:55 pm
by MetastaticEquilibria
CRguy wrote:
radnyc wrote:And what is this nonsense about “western medicine”??

And you have been here long enough to know that I am certified in TCM (Traditional Chinese Medicine), acupuncture, herbal medicine, and laser therapy. All of which I use in an integrative medicine program to treat patients. INTEGRATIVE ... NOT either OR... based upon WESTERN MEDICAL TRAINING !
and in practice for over 35 years.


Interesting, CRGuy. Out of curiosity, do you have any opinions on the following two TCMs?

Juzentaihoto (十全大補湯)
Hangeshashinto (半夏瀉心湯)

(These are the Japanese pronunciations and ways of writing the medicine names, which may or may not be based on an archaic dialect of Chinese instead of any modern version. No idea what the official English names would be. Sorry if this makes them hard to identify.)

There have been some scientific studies on them published in Japanese suggesting they may be helpful for ameliorating chemo side effects (blood counts for the first one, Irinotecan-induced diarrhea for the second one), and possibly the first one may also help improve the efficacy of chemo a bit. But they have not been studied anywhere nearly as extensively as Western medicines, so information on things like what effects they may have on liver panels, etc., is hard to come by.

Re: Opinions on alternative treatments?

Posted: Tue Jul 30, 2019 6:35 pm
by CRguy
Well fortunately your descriptors are very good and I have a Japanese / Pinyin / English formulary cross-reference :D
I have also given the common English name and Pinyin for reference.

Juzentaihoto (十全大補湯) {shi quan da bu tang} All-Inclusive Great Tonifying Decoction
One of many derivatives of the " Eight-Treasure Decoction " combinations.
Effect of Juzentaihoto/Shi-Quan-Da-Bu-Tang on malignant progression and metastasis of tumor cells

Hangeshashinto (半夏瀉心湯) {ban xia xie xin tang} Pinellia Decoction to Drain the Epigastrium
It is a variant of the " Minor Bupleurum Decoction "
The clinical impact of Hangeshashinto (TJ-14) in the treatment of chemotherapy-induced oral mucositis in gastric cancer and colorectal cancer: Analyses of pooled data from two phase II randomized clinical trials (HANGESHA-G and HANGESHA-C)

Both these are fairly recent papers with the second showing some benefit of reducing COM but not being preventive, for chemo patients.

The first is more of a "mouse" level investigation of possible mechanisms for the action of herbal components on various cancer "mechanisms" ... very briefly stated.

The language in them is science based, which I like as it is immediately "available" to most folks here.
The actual TCM type descriptors would not be as easily understood by most western patients ( clinicians ) ....
Formulas which Tonify the Qi and Blood / Formulas which Hamonize the Stomach and intestines ....

I like that there is this type of investigating going on with the traditional formulas ... AND the Japanese model particulary, is based upon a formulary where the exact components are defined as to purity, consistency, efficacy, formulation. This has not been the case for many TCM "herbals" which many practitioners just accept as being what is represented. ( stepping off soap box now :mrgreen: )

To answer your question :shock:
I have no personal experience using either of these formulas in the context of treating or managing side effects in cancer patients.

My opinion : is that we should be doing more of this type of investigation.
I think Integrative medicine, in my mind, would best be described as " having a TCM mindset while using a western medical tool set ! "

Harmony
CRguy

Re: Opinions on alternative treatments?

Posted: Wed Jul 31, 2019 5:54 am
by MetastaticEquilibria
Thanks, CRGuy!

CRguy wrote:Well fortunately your descriptors are very good and I have a Japanese / Pinyin / English formulary cross-reference :D
I have also given the common English name and Pinyin for reference.

Juzentaihoto (十全大補湯) {shi quan da bu tang} All-Inclusive Great Tonifying Decoction
One of many derivatives of the " Eight-Treasure Decoction " combinations.
Effect of Juzentaihoto/Shi-Quan-Da-Bu-Tang on malignant progression and metastasis of tumor cells

Hangeshashinto (半夏瀉心湯) {ban xia xie xin tang} Pinellia Decoction to Drain the Epigastrium
It is a variant of the " Minor Bupleurum Decoction "
The clinical impact of Hangeshashinto (TJ-14) in the treatment of chemotherapy-induced oral mucositis in gastric cancer and colorectal cancer: Analyses of pooled data from two phase II randomized clinical trials (HANGESHA-G and HANGESHA-C)

Both these are fairly recent papers with the second showing some benefit of reducing COM but not being preventive, for chemo patients.

The first is more of a "mouse" level investigation of possible mechanisms for the action of herbal components on various cancer "mechanisms" ... very briefly stated.


Thanks for those links. More for the collection.

The language in them is science based, which I like as it is immediately "available" to most folks here.
The actual TCM type descriptors would not be as easily understood by most western patients ( clinicians ) ....
Formulas which Tonify the Qi and Blood / Formulas which Hamonize the Stomach and intestines ....


Yeah, those English names are somewhat off-putting. Sound better in the original somehow.

I like that there is this type of investigating going on with the traditional formulas ... AND the Japanese model particulary, is based upon a formulary where the exact components are defined as to purity, consistency, efficacy, formulation. This has not been the case for many TCM "herbals" which many practitioners just accept as being what is represented. ( stepping off soap box now :mrgreen: )


Yes, I definitely would like to see more systematic analysis of these things.

To answer your question :shock:
I have no personal experience using either of these formulas in the context of treating or managing side effects in cancer patients.


Thanks. Figured it was a long-shot.

My opinion : is that we should be doing more of this type of investigation.
I think Integrative medicine, in my mind, would best be described as " having a TCM mindset while using a western medical tool set ! "

Harmony
CRguy


I think I agree, though might view it complementarily as using scientific method on as-yet-poorly-understood drugs, to see how they can be used in the context of the Western pharmacopia. One thing I also like in the first link is the attempt to break down the medicine into its component parts and see what they do individually, in addition to studying the effects of the package as a whole. Could be lots to learn there.

As a practical matter, though I have tried the above formulas myself, in the end I tend to break off using things like that out of concern for what undocumented side effects they may be having. My liver has been through a lot, so when it starts putting up crazy numbers (again), I don’t need yet another random variable in the mix when wondering what the cause may be. Just trying to keep the number of free parameters down, for my own sanity. But in principle I’m not against trying anything that has at least some kind of scientific evidence for it.

Re: Opinions on alternative treatments?

Posted: Wed Jul 31, 2019 1:10 pm
by zephyr
TinaFish wrote: Wouldn't it be great if someone who was newly-diagnosed could come across this thread and have a definitive list of meds/supplements to acquire immediately so that he/she could take immediate control of this disease?? I can't imagine that the information in clinical trials could be too erroneous, right?


It would be great ... but it's not a simple answer IMHO. So much about what could help depends on individual circumstances: the type of chemo or radiation, genetic mutations, other prescription drugs, etc. There is no one-size-fits-all answer. For example, I receive high-dose vitamin C IVs to help my immune system and to try to break through the KRAS mutation but when I was on radiation, my naturopathic oncologist stopped the IVs because it might interfere with the radiation. Some people take turmeric but turmeric may inhibit the action of some types of chemo and other drugs. If you're on irinotecan, you probably shouldn't be drinking green tea because it may increase the toxicity of the chemo.

You can get information from others but you still need to do your own research. Life Extensions is a help and also Memorial Sloan Kettering's About Herbs database which you can find here:
https://www.mskcc.org/cancer-care/diagnosis-treatment/symptom-management/integrative-medicine/herbs/search

Hope this helps.

Re: Opinions on alternative treatments?

Posted: Wed Jul 31, 2019 9:23 pm
by TinaFish
zephyr wrote:
TinaFish wrote: Wouldn't it be great if someone who was newly-diagnosed could come across this thread and have a definitive list of meds/supplements to acquire immediately so that he/she could take immediate control of this disease?? I can't imagine that the information in clinical trials could be too erroneous, right?


It would be great ... but it's not a simple answer IMHO. So much about what could help depends on individual circumstances: the type of chemo or radiation, genetic mutations, other prescription drugs, etc. There is no one-size-fits-all answer. For example, I receive high-dose vitamin C IVs to help my immune system and to try to break through the KRAS mutation but when I was on radiation, my naturopathic oncologist stopped the IVs because it might interfere with the radiation. Some people take turmeric but turmeric may inhibit the action of some types of chemo and other drugs. If you're on irinotecan, you probably shouldn't be drinking green tea because it may increase the toxicity of the chemo.

You can get information from others but you still need to do your own research. Life Extensions is a help and also Memorial Sloan Kettering's About Herbs database which you can find here:
https://www.mskcc.org/cancer-care/diagnosis-treatment/symptom-management/integrative-medicine/herbs/search

Hope this helps.


It helps so much!! You made great points, and the links are so useful

Re: Opinions on alternative treatments?

Posted: Wed Jul 31, 2019 10:10 pm
by Jacques
TinaFish wrote:...I'm seeing my oncologist on Monday; I'll definitely be giving her the list of meds...

You mentioned earlier that you would be seeing your oncologist on Monday this week.

How did the meeting go? What did your oncologist have to say about your long list of meds?

Re: Opinions on alternative treatments?

Posted: Sat Aug 03, 2019 10:19 am
by TinaFish
Jacques wrote:
TinaFish wrote:...I'm seeing my oncologist on Monday; I'll definitely be giving her the list of meds...

You mentioned earlier that you would be seeing your oncologist on Monday this week.

How did the meeting go? What did your oncologist have to say about your long list of meds?


She didn't have any problems with any of them. I asked about contraindications with cimetidine vs statins, or cimetidine vs Avastin, and she said we're monitoring my liver very closely and if anything we're going badly, we would notice right away.

Re: Opinions on alternative treatments?

Posted: Mon Oct 14, 2019 7:57 am
by Cmac1275
radnyc wrote:I find the outright dismissals of non-standard cancer interventions disappointing. She’s obviously under the care of a properly trained and licensed professional and it’s just asking for some advice on some alternatives.

And what is this nonsense about “western medicine”??

Ancient Chinese and indigenous people’s medicines have been curing humans of all kinds of ailments for millennia. And the fact is that many if not most drugs are derived from plants still. Tina, do your research, there are others on here who have extensive experience with alternative methods whom I hope will chime in and help you sort out the scammers out there.

Peace
Al


I know this post is old, but I have to agree with Radnyc here. I opted for the "actual cancer treatment" route. Had my surgeries and chemo. I'll give all the credit in the world to FOLFOX during my first six sessions of chemo. It did its job shrinking tumors enough so I could get liver resection.

BUT, FOLFOX failed immediately after those first six sessions. Then I was switched to FOLFIRI. That worked for exactly 4 months before it too failed. So, not I'm out of "actual medicine" options. Which is why it truly disturbs me when alternative approaches are so easily dismissed.

I've been on my cancer journey for less than 2 years. Last week, my oncologists told me there's not much more they can do since I no longer respond to the two...let me say that again...the only 2 FDA approved treatments the field can offer me. I can definitely attest that I would have faired much worse had I not consulted with a naturopath to integrate other methods.

And as it turns out, I will now need to fully place my faith in God and these so-called "quacks" to save my life. I'll take my chances. Thank you very much. Turns out, I didn't even enjoy average progression-free survival benefit with "actual cancer treatments."

Re: Opinions on alternative treatments?

Posted: Mon Oct 14, 2019 1:22 pm
by boxhill
I'm sorry about your situation. Any possibility of the HAI pump or something like Y90 for you?

I'm sorry that neither FOLFOX nor FOLFIRI worked for you long term. FOLFOX didn't work for me either, and since like you I have a KRAS mutation I'd be pretty much out of FDA-approved conventional alternatives if I weren't MSI-H.

Are you still in the trial?

There are apparently a number of KRAS-mutant--focused trials starting these days.

Re: Opinions on alternative treatments?

Posted: Mon Oct 14, 2019 7:07 pm
by Lee
Cmac1275 wrote:
radnyc wrote:I find the outright dismissals of non-standard cancer interventions disappointing. She’s obviously under the care of a properly trained and licensed professional and it’s just asking for some advice on some alternatives.

And what is this nonsense about “western medicine”??

Ancient Chinese and indigenous people’s medicines have been curing humans of all kinds of ailments for millennia. And the fact is that many if not most drugs are derived from plants still. Tina, do your research, there are others on here who have extensive experience with alternative methods whom I hope will chime in and help you sort out the scammers out there.

Peace
Al


I know this post is old, but I have to agree with Radnyc here. I opted for the "actual cancer treatment" route. Had my surgeries and chemo. I'll give all the credit in the world to FOLFOX during my first six sessions of chemo. It did its job shrinking tumors enough so I could get liver resection.

BUT, FOLFOX failed immediately after those first six sessions. Then I was switched to FOLFIRI. That worked for exactly 4 months before it too failed. So, not I'm out of "actual medicine" options. Which is why it truly disturbs me when alternative approaches are so easily dismissed.

I've been on my cancer journey for less than 2 years. Last week, my oncologists told me there's not much more they can do since I no longer respond to the two...let me say that again...the only 2 FDA approved treatments the field can offer me. I can definitely attest that I would have faired much worse had I not consulted with a naturopath to integrate other methods.

And as it turns out, I will now need to fully place my faith in God and these so-called "quacks" to save my life. I'll take my chances. Thank you very much. Turns out, I didn't even enjoy average progression-free survival benefit with "actual cancer treatments."


I too am sorry for your current situation. Have you checked out Keytruda? There was a member, Beansmama who failed every tradition chemo and was pretty much deemed months from death, when put on this drug as a last ditch effort. She had state IV mets to her liver. Keytruda was successful in killing the cancer cells in her liveer. I'm sorry to say, she has passed, due to a blood clot. Butt make no mistake, she died a cancer free person. It's because of her and people like her, that Keytruda has been approved for colon cancer patient. There is another thread I will need to look upthat might be of interest to you. Give me a few hours.

Have your got a opinion at a major cancer treatment center or hospital? If not please consider it.

Lee

Re: Opinions on alternative treatments?

Posted: Mon Oct 14, 2019 7:15 pm
by Lee
This is Celine's journey, a bit long, butt very informational. She too was only given a few months, but is very much NED (No Evidence Detected) today. This thread is to help other who may want to follow this path.

https://coloncancersupport.colonclub.co ... lit=celine

It was a big deal around here when Joan Lunden was taping her during one of her follow up visit a few years back.

Hope you can find the time to read it.

All the best,

Lee