Choosing a Clinical Trial

takingcontrol58 said:

On Choosing a Clinical Trial

Cazz,

I recommend you read my post "How my liver mets disappeared on their own".
I had mets to the liver, spleen (largest lymph node in the body) and a 5cm tumor on my outer
rectum. I was diagnosed with Stage IV metastatic endometrial cancer, which has the same risk
factors as colon cancer.

The drug metformin put me in complete remission in 6 months from the day I started the drug in Feb 2015. I remain
on the drug and have not had a recurrence for one year.

I originally joined a trial at the top cancer center in the country in NYC, but removed myself and my own oncologist prescribed
the drug for me because he was clearly aware of its anti cancer properties plus I was insulin resistant.  I needed the drug.
I was told I had 4-6 months to live because I had so many metastases after my surgery.  I've done alot of research
on cancer and the cancer treatment industry because I was told I was going to die and I didn't believe them.  Instead of
dying, I went into complete remission.

There are many ongoing trials with metformin but please don't enter a trial to get the drug. Your doctor can just
prescribe it to you. It's called "off label" prescribing. Don't let them tell you that you have to enter a trial for the drug.  
If you have metastasis, you don't have time to wait for some useless trial to end. Metformin has been around since 1958.  It is the most
prescribed diabetes drug in the world plus is anti cancer.  The smart oncologists who know its benefits prescribe it to their patients.

Also, Metformin does what Erbitux does, with limited side effects.  It inhibits EGFR (Epidermal Growth Factor Receptor). With
none of the serious side effects.  Metformin also kills cancer stem cells, which are the source of cancer growth and metastasis.
Metformin also stops angiogenesis- the creation of new blood vessels- tumors grow new blood vessels to feed them. The chemo
drug Avastin is supposed to do this but has serious side effects.  It's like metformin does what multiple cancer drugs try to do.

It does many other anti-cancer things. They have many drugs in development that are trying to do what metformin already does.
 I would highly recommend you tell your doctor you want to try it before you enter any new trials and get more poisonous drugs.

Do you mind telling me what trials you are considering or what drugs? Do you know what mutations you have?

Takingcontrol58
Taking control of your cancer is how you survive

 

 

 

 

 

 

 

 

Thanks, John23 - I am not a candidate for surgery as there are too many mets in too many places.  They wouldn't even remove my liver mets last year while they were still small enough to be manageable because I had three of them and another tumor in my calf.  Unfortunately, I know nothing about Chinese herbal medicines and don't feel I have enough time to spend trying to learn about them now. 

Takingcontrol58.  I did read, with great interest, your post on the Metformin and asked my doctor about it today.  He was non-committal and suggested we wait and see what my next CT shows in two weeks, but he was open to the idea.  I think he is open to just about anything because the conventional chemos don't seem to do anything.  I was looking at a trial of Pembrolizumab, but my doc said that is basically the same thing as the Nivolumab (Opdivo) that I did last year.  Another trial is at MDAnderson combining metformin and Temsirolimus, unfortunately its only a Phase I trial, but Temsirolimus is one of only two drugs that the Foundation One (genetic testing) thought might help.  That testing came up with five mutations, but they are all strange labels, nothing like the KRAS or the BRAF(?) that people talk about.  I have mutations of genes TP53, which is commonly associated with pancreatic cancer (I've got anal cancer),  NTRK1 associated with thyroid cancer, PIK3R1 - uterine cancer and glioblastoma and a couple of others.  The only other drug Foundation One suggested was Everolimus, also known as Afinitor, which is FDA approved for treatment of breast cancer and kidney cancer.

I am really pleased for you that the metformin worked so brilliantly and I am trying desperately to find something that will do the same for me, but the only thing that has worked so far has been radiation.  I've got to find something systemic that kills all of the cancerous cells no matter how they have mutated nor where they are hiding.  I am going to MDAnderson for a CT in two weeks and if Dr Eng tells me that the Erbitux isn't working then I will ask her about combining Afinitor and Metformin and see what she has to say about it.  In the meantime, my local oncologist has said he will check on trials for me and see if there is anything suitable coming up.

takingcontrol58 said:

Cazz,

I am glad to hear your doctor is open to metformin.

I also had genomic testing through Foundation One.  One of my mutations was PlK3R1, just likeyou.
This mutation is part ofthe Pl3R1/akt/Mtor pathway, which is one of the most mutated pathways in
many cancers, not just uterine cancer like me. T53 is a tumor suppressor gene on this pathway that
is suppressed in many cancers. 

My Foundation One report also recommended Affinitor and Temsirolimus for me.
My integrative oncologist who put me on metformin also recommended I take Affinitor as well but
I refused because I had such miraculous results with just the metformin.  Why take on unneeded risk
if you don't have to.  If the metformin hadn't worked, maybe I would have tried the Affinitor. But I
understand that Affinitor targets the Mtor part of the pathway (our mutations our on the other part of
the pathway). Metformin inhibits the entire pathway.

My theory is that if you can try a non-toxic drug first that might work, I would do that before getting more chemo drugs.
These targeted drugs have side effects just like chemo.

Just so you know, the results with Affinitor and Temsirolimus haven't been so great. You can read the
medical studies.

If it was me, I would ask your doctor to put you on metformin now for the next two weeks so you can see if it
has any effect before your next CT scan, and not wait.  I had major results in just one month. You never know.

Do you mind telling me your other mutations? My other 3 mutations were CTNNB1, RB1and SF3B1. No drugs
exist for these 3 mutations but I found out metformin targets a key pathway tied to the CTNNB1 mutation.

I think the reason all these targeted drugs are not working is because they only target one mutation, and like you
indicate, you have many mutations.  If the drug targets the mutation that caused your cancer, then you win, but
so far their results are limited.

Takingcontrol58

 

 

Great handle, by the way!

The other two mutations they came up with were NF1 and PIK3R1.  They suggested Afinitor for both as well as temsirolimus aka Torisel, never heard of them either.

I won't start on metformin or anything else until we see the results of the CT scan in two weeks.  I suspect that it will be very depressing and stuff will have grown and new ones started up all over the place - this is based on an MRI I got last week that showed that the tumor in my calf that I had radiated away in November 2015 has recurred and is at 7 x 4.7 x 3.2 cm already, this despite being on Erbitux for the last 7 weeks.  I am hoping that what really happened is that they just didn't get it all and don't want to admit it.

So I really need to get the CT done and see what Dr. Eng has to say about it all.  I will definitely mention the metformin to her, but she said that she was hoping a new immunotherapy trial would finally open up as she wants to get me in that, and obviously, I wouldn't be able to take anything that doesn't mesh with the trial.

Carol