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Afinitor

bluehyacinth
Posts: 45
Joined: Feb 2016

Afinitor (Everolimus) has anyone been on it? I was approved for it, but have not decided whether and or when I will start. I was also approved for Keytruda a couple of months ago, but chose to enjoy my summer after not responding to chemo and radiation except I responded very well to the side effects.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1549
Joined: Jun 2015

Hey Blue - I don't have any information on Afinitor. But, wanted to mention that LouAnn is on Keytruda and is doing well. From her postings, she isn't dealing with side effects from it and feels better than she has in years. You may have already read her posts so just ignore this if you were aware!  I hope whatever you end up using is effective and mild on your system!

Love and Hugs

Cindi

takingcontrol58
Posts: 242
Joined: Jan 2016

Blue Hyacinth,

Afinitor was recommended for me because I have the PIK3R1 mutation.  It is recommended for mutations of the Pi3K/AKT/Mtor
pathway, which is mutated in about 80% of EC cancers.  What is the mutation(s) you have?

Instead of going on Afinitor, I began taking Metformin, a drug that controls insulin and glucose levels and is turning out to be
a miracle drug for many cancers because of all the anti-cancer properties it has.  It is a drug that has been around for over 50 years.
Most people know it as a drug for diabetes and insulin resistance.  I had extremely high levels of insulin growth factor, which fuels
EC cancer because EC cancer cells have a high level of insulin receptors on them. Metformin is also well known to inactivate the Pi3K/AKT/
Mtor pathway. It also stops angiogenesis- the creation of new blood vessels to feed tumors- angiogenesis is usually high when you have
metastasis because your body is continuing to feed the creation of new tumors.

I was orginally diagnosed with Stage 3B endometrioid adenocarcinoma, 2 months after my surgery, my cancer metatasized all over
my body, before treatment, totalling 34CM of tumors (liver, spleen, rectum, plus nodules in multiple places.)  After one month on metformin,
I was down to 4CM of tumors. Went into complete remission within 6 month of starting metformin.  Just achieved one year in full remission
in August, after being told I had 4-6 months to live. It has been 2 years since I started my cancer journey. I still take the
metformin everyday. It also believed to help breast cancer, which has many of the same risk factors as EC, because it also
lowers estrogen levels, which can also fuel EC cancer.

I would suggest you ask you doctor about metformin- it inhibits the Pi3K/AKT/Mtor pathway- Afinitor only addresses the Mtor part
of the pathway.  That is why I'm curious what mutation/s you have. I would try this drug (a pill) first to see if
it helps you. It is not a chemo drug. If it does not help you, you can always go on Afinitor.  fRemember these cancer drugs don't
address all the factors that led to your cancer forming in the first place.  You have to figure out all the root causes of your cancer.

Good luck with your decision.

There are over 2800 articles on metformin and cancer at the website of the National Institutes of Health - www.pubmed.gov.

Takingcontrol58 

MAbound
Posts: 868
Joined: Jun 2016

So are you taking Metformin with normal blood sugars? What dose? How often?

I'm looking at your pubmed link, and you can cut the number of articles down to 117 if you search metformin endometrial cancer instead of metformin and cancer. Still a lot to slog through, but I'm interested because I was started on Metformin during chemo for elevated blood sugars (500mg daily). I was pre-diabetic pre-surgery, so my PCP may want to take me off of it if the elevated numbers were only because of going through chemo.

I'm curious how much is needed to be anti-cancer and how is it safe to take if your blood sugars are in the normal to pre-diabetic range? Will insurance cover it for cancer treatment if a person is not diabetic?

takingcontrol58
Posts: 242
Joined: Jan 2016

When I was diagnosed with metastasis, my integrative oncologist put me on 500mg 2X day.
I was considered pre-diabetic. My highest glucose level was 115- I have averaged around 90
while being on the drug. My blood glucose has never gotten too low. In fact, it has been ideal.

I started metformin after 2 infusions of Taxol/Carbo,and remained on that dose for the remaining 4 infusions.
I still had 2cm of tumors remaining so my doc raised the dose to 750MG/ 2X a day- I was in complete remission
2 months later. I remain on that dosage today.  Personally I believe you need at least 500mg 2X a day to beat cancer.
For me, I believe my extremely high insulin growth factor-1 levels fueled my cancer. IGF-1can cause both EC and
breast cancer. Have you been tested for IGF-1? It is usually raised before an EC diagnosis.  Metformin lowers IGF-1.
If you want to get rid of cancer or prevent a recurrence, I would stay on the drug but talk to your doctor about possibly
raising the dose. Do you actually have a tumor or metastases? Or is the chemo a preventative measure?

I mentioned all the articles on metformin and cancer because it is extremely important to understand everthing
this drug does for many key cancers, like breast, melanoma, pancreatic, colon and liver cancer. It helps stop
cancer period because it addresses many of the pathways, processes and genes that many cancers have in common. 
It even works on brain cancer because it can pass the blood brain barrier, which the chemo can't do
for the most part.  From reading multiple articles across numerous cancer types, I put a list together of all that
metformin does for cancer (for which there are no successful cancer treatments). There are another 19 things
that metformin does to stop the cancer process (besides lowering glucose and insulin growth factor-1 and stopping
angiogenesis). It has more anti-cancer properties than anti-diabetic properties. It is really more of an anti-cancer drug.

I would not get off this live-saving cancer drug. The good doctors are very well aware of its benefits to cancer patients.
All those metformin and cancer articles go back to the 1980s, which tells you how long they have known about the anti-
cancer properties of this drug. The issue is that the cancer industry does not promote because it is not  officially approved
for cancer.  But neither is most chemotherapy, as the FDA does not test all chemotherapy combinations.  Most people do not know this.
Metformin is low cost and generic. It can be prescribed off-label.  In fact most of the chemo drugs for EC are prescribed off-label,
since they were never FDA approved for EC, like Avastin. 

If you are getting the drug already, you would continue to get the drug and your insurance company would pay for it. It doesn't need
any approvals for cancer- remember, almost every drug is prescribed off label. Metformin helped save my life.

By the way, I also take 2 low dose aspirins a day. Aspirin inhibits the COX-2 enzyme, the cause of inflammation. And most serious
diseases are caused by chronic inflammation. They prescribe it for heart patients but not for cancer patients. And the side effects
of some cancer drugs are heart problems. You have to wonder why they don't automatically recommend it for cancer patients. Perhaps
because it is low cost and it works.

If you have alot of other questions about metformin, let me know.  I have been doing lots of research.

Takingcontrol58

MAbound
Posts: 868
Joined: Jun 2016

Thanks for answering my questions. I can see I have some more homework to do to understand this well enough to discuss with my doctors. I was staged at 3a, grade 3 adenocarcinoma and just finished 1 cycle of Taxol/Carbo and 5 of Taxotere/Carbo. Next is a PET scan and another pelvic wash since the 1st was suspicious, but not conclusive. The outcome will determine what kind of treatment(s) will follow chemo. What a long saga this is turning out to be, but at least it gives me time to learn along the way!

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

I ask both my Gyno-Onc and my medical Oncologist About Metformin andmy Gyno-Onc said that since my blood sugar was normal it could make my blood sugar levels to drop to dangerous levels .  My regular Oncologist said there was some good information about it and it sounded hopeful, but needed more,information about its use with non diabetic cancer patients.

i don't know anything about the first drug but I am on Keytruda and have had no side effects and feel better than I hav for  a long time.

Hugs and prayers, Lou Ann

bluehyacinth
Posts: 45
Joined: Feb 2016

Thanks for the responses. TakingC it is great you found something that works for you. I also asked several oncs about Metformin and got the same responses as Lou Ann. My highest glucose level  is 90. Nobody is interested in prescribing Metformin with that. I have stage 3C UPSCII which is quite different from type 1 EC. As my surgeon said more suffisticatedly with higher stages UPSC chemo often only manages to kill the "slow easy" cancer cells and this leaves more room for the harder to kill but fewer aggressive cells, that simply start over somewhere else. Mine metastisised quickly after chemo. 

Glad you are doing well on Keytruda Lou Ann, I will start in October. I chose to go on a long vacation after wasting so much precious life on chemo and rads. I am on an aromatase inhibitor.

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