8 replies to this topic

[studentlost]

After a year of extensive web research, I realized that the most valid and advanced ideas I have come across have been on this website.

 

My dad, who is 60 years and in good shape, has stage 4 nsclc. He was diagnosed with solitary metastasis to his hip, with one primary tumor, and a pleural effusion. After 6 rounds of carbo/alimta/avastin, the effusion was gone and he had significant improvement in the secondary and primary tumor. This was August 2013.

 

He has been on maintenance with alimta/avastin since. January 2014 scan showed improvement and shrinkage in both tumors, but the June 2014 scan showed that both tumors are very small and stable, but no actual shrinkage is occurring. It's hard for me to navigate through what is real and what is sensationalized, and while a lot of supplements may have in vitro or in vivo evidence, but that doesn't necessarily mean it translates to helping a human.

 

My dad is currently on eggplant extract, long pepper (as a tea), aronia berry, vitamin D (5000 iu), and soon to be on brown seaweed extract (biofilam (previous modafilam)). This is along with folic acid (for alimta) and calcium (for bone metastasis).

 

What do you guys think of this? Do you have any suggestions at all? Please give me any ideas you have. I would appreciate any links to journals or studies that you may find. Again, I really appreciate your help and support.

 

Best,

 

-A

Edited by studentlost, 05 July 2014 - 08:11 AM.

[zen]

I did the search on the internet for "Non Small Cell Lung Cancer PAK1" and, based on my understanding of the information I found,  it seems that it is worth looking into inhibiting oncogenic kinase PAK1. With that in mind you may want to look into BIO-30 propolis (which is natural PAK1 inhibitor) and related research of prof. Hiroshi Maruta.

HTH

 

[Dorian Grey]

I'm not an expert on these things at all, but I've done a lot of research on IP6 (Inositol Hexaphosphate) and have seen numerous references indicating IP6 may be "THE" complementary therapy to conventional medicine for lung cancer.  

 

The most common formulation mentioned is a combination of IP6 with simple (myo) inositol called "IP6 Gold".  

 

I'm sorry I don't have a lot of links for you right now, but I may be able to work on this more later.  A bit of work on google should get you a lot of results.  If you include the word "forum" and "lung cancer" in searches with: Inositol, IP6, and "IP6 with Inositol", you'll see this is a very hot topic in many cancer forums and a lot of these folks quote studies in their discussions.  

 

I also noticed a lot of the folks with lung cancer posting about IP6 with Inositol have been active on the forums for several years following their diagnosis, and this says a lot about how they are doing as lung cancer can often move quite swiftly. 

 

One of the interesting high points on IP6 and Inositol is that it is supposed to be safe when combined with chemo, and is usually not contraindicated with chemo as many other complimentary therapies often are.  It is also very well tolerated and rather inexpensive.  

 

My only other thought is on the folic acid...  I've read folic acid is a good thing, but when cancer is present, it may promote growth of the tumors.  The cautions I read on this were mostly regarding colon cancer and I honestly don't know if it might apply to lung cancer as well.  I just remember reading and following up on how folic acid may promote growth of colon cancer.  I've actually sought out formulations of B-Complex vitamins that are low in folic acid due to these cautions.  Something you might want to look into.  

 

Best of Luck to you both, and I can work on this further with you if you have trouble finding information on what I've mentioned above.  

Edited by synesthesia, 05 July 2014 - 06:02 PM.

[studentlost]

I also have to add in that the only mutation they found was the PI3KCA mutation, which is insensitive to calorie restriction and influences AKT and mTOR, I believe

[Kalliste]

Well before you add supplements make sure he checks them with his oncologist before starting. I think you should start with some form of CR/DR/PF, if that is OK then add high intensity excersize, and then add meditation. Those things will do a lot more than any known supplement.

Speaking of supplements I think curcumin has the strongest profile.

[medicineman]

please don't take anything outside of the jurisdiction of the oncologist. some supplements interfere with the activity/metabolism of chemotherapeutic agents, rendering them more toxic or less effective.

[John Schloendorn]

I've seen these drugs.  They're terrible.  Look at the survival curves.  They're hardly doing anything at all http://cancergrace.o...intbreak-trial/.  I mean, even the worthless, made-up endpoints like "PFS" are barely being met.  Looks to me like you've got nothing to lose by being more experimental. 

 

 

 

[Dorian Grey]

Here's an interesting page from "Lung Cancer Survivors Support Community" talking about IP6

http://www.inspire.c...?page=1#replies

 

My experience with some "natural" anti-cancer substances

 

If you get the nag window to log in or sign up, click on "log in" at the very bottom of the nag screen (NOT sign up) and then browser back / previous page arrow and you should return to a clean page.  

 

Here, you'll see ElroyJ report in January 2010: 

"I was dx December 2008 w/stage IIIa NSCLC with one mediastinal lymph node involved. I received three treatments of Cisplatin and Alimta, then had a lobectomy. The pathologist's report from the surgery said that there was no cancer remaining in either the tumor or the lymph node - what's called "pathologic complete response". 

When I first got my diagnosis, I started taking six grams per day of Cell Forte IP6 and inositol, after having read the results of some studies online"

 

-------------------------------------------

 

When another poster (HighlandGuy) asks how the path report could have found no cancer after his lobectomy and how they knew he really ever even had lung cancer, ElroyJ replies:

 

"HighlandGuy - Yes, I had a nine millimeter "spiculated" growth in my right lung, spotted on a CT scan; that nodule and an area in the center of my chest "lit up" on a PET scan. I had a needle biopsy which showed adenocarcinoma in the nodule. Up until surgery, it was assumed that the nodule was stage Ia, and was scheduled for a lobectomy. I had a mediastinoscopy which confirmed lymph node involvement. The surgery was cancelled and I was given three rounds of chemo. The scans after the chemo showed significant shrinkage and lower SUV levels in both the nodule and the lymph node. I was rescheduled for the lobectomy. The pathology report after surgery showed only scarring in the upper right lobe and granulation where the lymph node had been."

 

-------------------------------------

 

This guy is cancer free over a year after being diagnosed with lung cancer (non small cell) with metastasis to mediastinal lymph nodes?, and apparently was cancer free even before his surgery after only 3 rounds of chemo and IP6?  Could this be a plant?  

 

carolhg chimes in a bit further down...  

"I have been taking IP6 since my surgery almost five years ago.

Carol"

 

Five years ago?  On a lung cancer survivors forum?  The graphs from John's post above seem to indicate 70 to 80% failure for chemo in the first year, and two year survivals even more dismal at around 10%.  

Edited by synesthesia, 07 July 2014 - 05:22 AM.

[joelcairo]

please don't take anything outside of the jurisdiction of the oncologist. some supplements interfere with the activity/metabolism of chemotherapeutic agents, rendering them more toxic or less effective.

 

This can happen, but the more I look into this subject the more it seems like there's a far higher chance of no interaction or a synergistic benefit. The only substance that I would definitely recommend against is NAC, which interferes with a vast range of drugs. Among all antioxidants, it is the one that directly raises intracellular glutathione and always has the effect of "rescuing" cancer cells from apoptosis.

 

You're right to run anything by the oncologist, but the problem is that they are programmed to say that every alternative therapy is bunk. Most of them don't even put their patients on things like NSAIDs, which have unequivocal evidence of their value in slowing cancer progression. Therefore in my opinion the oncologist's opinion should be considered but perhaps not blidly followed.