Has anyone tried GCMaf and what are your experiences with this?

[SaEva]

I have read different opinions of the GCmaf- protein that was recommended by some people. I would like to learn about the experiences people may have had here. Also any other recommendations on alternative medicaments/suplements for an early stage of CLL. Thanks!

[AussieNeil Partner Administrator]

Gc-MAF has only been tested in small, poorly performed trials on patients with breast, bowel and prostate cancer, not CLL. A very good overview of Gc-MAF can be found here: scienceblog.cancerresearchu...

In summary - "The advent of the internet has led to a wild proliferation of stories of ‘miracle cures’ for cancer – virtually all of which are based on shaky (or zero) science.

Some companies are selling Gc-MAF for use by cancer patients. This treatment is not approved or licensed in the UK for treating cancer or any 0ther disease. Given that there is no solid scientific evidence to show that the treatment is safe or effective, we would not recommend that cancer patients use it." (My emphasis).

Neil

[Newdawn Administrator]

‘GcMAF therapy is still being researched as a possible effective treatment for cancer. However, it’s important to note that GcMAF supplementation isn’t approved for medical use for treating cancer or any other health conditions.

It’s not recommended that you abandon traditional cancer treatment options in favor of GcMAF therapy. The little data available on GcMAF therapy for cancer is questionable due to the integrity of the research. In some cases, the researchers worked for companies that made the drug. In other cases, the studies were published and later retracted.

Further research needs to be conducted. Until then, any beneficial role of GcMAF in cancer treatment is uncertain.’

healthline.com/health/gcmaf...

Sounds promising, worthy of greater scientific research and there have been some bold claims made about its application but too experimental presently.

Proceed with inquisitive interest but extreme caution would be my advice. There’s a lot of ‘miracle cures’ out there... allegedly.

Newdawn

[Cllcanada Top Poster CURE Hero]

Since GcMAF binds to VitD, you need to have your 25(OH)D levels checked and while at it, your B12 and folate... work with my our GP to bring these in line.

GcMAF has a rather shady past... some of the resesrch has been retracted , and a manufacturing plant closed.

fdanews.com/articles/170150...

en.m.wikipedia.org/wiki/GcMAF

retractionwatch.com/2014/07...

[SaEva in reply to Cllcanada]

Thank you all for such prompt replies. I am aware that there are all kinds of things on the internet without a proper research and I do keep that in mind, however it is difficult to just sit around and do nothing. Therefore I am trying at least to keep myslef happy by reading and feel more useful

[Cllcanada Top Poster CURE Hero]

A rare TRIPLE post! 👍🏻🤣

[MsLockYourPosts Passed Volunteer in reply to Cllcanada]

Wow! You're good! I've only been able to do that on CLL Forum, but someone came in to work on the issues on the site and it seems to be running much more smoothly now.

[Spacee]

In the strange world we live in with the internet, a doc in NYC (who is well respected...or was) was making GcMAF available to patients with Chronic Fatigue Syndrome...on eBay!! I was considering trying it. Some of us will just about try anything for more energy. (Hubby has the CLL and lots of energy).

[CLLCalifornia-USA in reply to Spacee]

Just because someone says they are Dr. X, it doesn’t mean that’s actually who they are. I have seen things advertised “as seen on tv” and they name shows and names of people who supposedly back the product. Just some fake advertising and they move on to someone else. Be careful. Sally

[Spacee in reply to CLLCalifornia-USA]

Thanks for the heads up Sally!! In this case I was a patient of this doctor. We did the office visits by Skype and what he looked like was well known in the CFS community. I do believe in his heart he was trying to help us. Some CFS patients cannot leave their homes. But...then there is that thing “what helps someone, does not help the next.’ Thanks again for reminding me to be careful!

Linda

[MsLockYourPosts Passed Volunteer]

When a doctor makes something available on line to his/ her patients it sends up red flags for me. I once saw a dermatologist who wanted me to use her miracle cream, available through her for a discount or on line. The claims of all of the things it had done for people, made in the pamphlet, were way over the edge. #5 on my list of dermatology fails. It turned out that my cardiologist had been in medical school with her and her husband. He made no bones about her reputation of being over the edge. Sad that we have to keep our guard up.

[SaEva]

After considering all that I read about GcMaf I started treatment today... I shall keep u all posted how it works out for me

[BeautifulPudding72 in reply to SaEva]

Hey SaEva, any updates to share on your experience with GcMaF? Really curious myself, so just wondering! 😊

[cornishpasty99 in reply to SaEva]

Hey there. I hope that your treatment was a success? I'm on my early stage research for my sister who's just been diagnosed as terminal. And looking at alternatives. Would love to hear more if possible?

[SaEva]

I was over a month on gcmaf, lets talk privatltely

[JDWell in reply to SaEva]

I would love to connect and understand your experience

[Equinepal]

I was considering this treatment along with Rigvir, did you have any success?

[AussieNeil Partner Administrator in reply to Equinepal]

Rigvir: Another unproven and dubious cancer therapy to be avoided according to Science Based Medicine: sciencebasedmedicine.org/ri...

It's certainly got an interesting and long (50 year) history, so why isn't it better known if it is as effective as claimed?

With respect to Gc-MAF, as I mentioned above, one US based researcher "Yamamoto, test(ed) the treatment on patients with breast, bowel and prostate cancer. (NOT CLL - my emphasis)

Note: The breast cancer paper (Yamamoto et al Int J Cancer 2008) has now been retracted"

:

"Some companies are selling Gc-MAF for use by cancer patients. This treatment is not approved or licensed in the UK for treating cancer or any other disease. Given that there is no solid scientific evidence to show that the treatment is safe or effective, we would not recommend that cancer patients use it"

scienceblog.cancerresearchu...

Neil

[Equinepal in reply to AussieNeil]

As someone who is having great success with Rigvir (as proved by scans and bloodwork), I find the usual "shut down" of optional treatments tiring. You may want to not "cut and paste" the same old tired chestnut article and consider that there are people who are having positive PERSONAL experiences. After being told that it was "Time for hospice" I reached out for other options...I'm still here and I'm no longer spiraling down the "treatment" hole. I'll get back with you in five years or so and share my journey. Thank you for your thoughts on Gc-MAF...I am hoping to find someone who has had actual experience with the treatment.

[AussieNeil Partner Administrator in reply to Equinepal]

Great to hear of your dramatic reversal! Rather than tantalising us with your promised revelations in five years time, why not share your journey now? We encourage members to share their experiences, but don't encourage promotion of alternative treatments not tried, particularly when there is scant evidence of effectiveness with CLL.

Just edit your currently empty profile here: healthunlocked.com/profile/... to include the high (low) lights of your journey along with records of how your tumour burden has changed. Why not show us the data you claim to have now?

Then how about introducing yourself in some posts about your experiences? To be so positive about being here in five years after being told to ready yourself for hospice means you have hope to share, not keep to yourself for five more years!

Neil

[SaEva]

I took GC maf for over a month or so- injections, tablets and a spray as agreed with one of my dr I consulted. I also took vitamin D3 in larger doses while taking GC maf. I must say I didn't get sick with flue or anything really and I felt I have more energy. However, i was worried what it really does to me. My reasoning was: it boosts up the immunity. ..How is that done, which cells defend ny oranism from viruses and bacteria? It is WBC, lymohocites... therefore if I boost up my immunity, am I speeding up the CLL too? No dr could reply to this question really with any scientifinc base. I was told you follow up on your progress by so called nagalase test, but I considered this test irrelevant for CLL. Basically, I freeked out a bit and stopped. Therefore I cannot say really if it worked. I continued taking D3 vitamin and some other suplements, and the winter is passing and I am still healthy without any serious viruses or bacteria. Just wanted to share my expetience which is not really that useful as nothing major was discovered or improved best motto is live you life, while you are able to good luck and keep your mind always open!

[MaxSmart]

I took it for a couple months while I was on watch and wait but my numbers kept going up.