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Clinical Trial

ayostacey
Posts: 57
Joined: Sep 2015

Hello ladies,

My sister is still continuing to struggle with finding a chemo to work. She had 6 rounds of carbo/taxol...mixed results and spread to liver.  Doxil...liver growth....Doxil with Avastin (one round) but then got back bad blood work for her liver. Dr thought there might be blockage and was planning on putting in a stent, but MRI showed no blockage, only growing tumors...he now wants to abandon the Doxcil and Avastin completely and get her into a clinical trial. Waiting to hear from Dana Farber in Boston...has anyone had any sucess with trials or know anyone who had any success? She has multiple tumors that have metastisized to her abdomen and liver from initial Uterine cancer. (which by the way was graded 1A, stage 2 and was never supposed to come back...but it did 4 months later).  My sister is 46, otherwise healthy but nothing seems to be working. Another question about trials....is it true that some people may not even get the real medicine? Would that mean she might not get anything?? I cant imagine that. Desperate for suggestions or encouragement. Oh, one other side note, last CT scan was before Doxcil started and since on Doxcil her CA125 has gone down to 449 from 670. We thought that was good, until the bloodwork and MRI of the liver.

molimoli
Posts: 514
Joined: Aug 2014

which of the uterine cancers did she have? I hope they figure out something quickly. Try reaching out to AWK , she is Anne and knows a lot about clinical trials. so sorry. Moli -Hugging you and your sister both.

ayostacey
Posts: 57
Joined: Sep 2015

Thank you and yes i used to see AWK on here and thought that she was on a clinical trial and would have loved to hear from her as well. My sister's cancer is not clear cell or the other one i always read aboout...MMC i think they call it. She was staged 1 and grade 2. 

Donswife48
Posts: 326
Joined: Nov 2015

From what I've read, they offer standard treatment with real drugs, but the trial part adds another drug too the treatment, so she will still be getting chemo.  Hugs Nancy

 

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

From what I understand, the phase of the trial has a great bearing on how the drug(s) are administered, and whether it is a randomized trial or not.  I'm sure the information regarding the trial your mom is being considered for would have that information included.  

Chris

takingcontrol58
Posts: 261
Joined: Jan 2016

Ayostacey,

On March 16, you said your sister used to be on metformin for Type 2 diabetes but got off the drug.
Has she been on the metformin since then? If not, please have her get on the drug again. She has
nothing to lose.

I'm not sure if everyone understands that chemo does not cure cancer. It may appear to
stop it for a while, but then it can come back. The success rates for Taxol/Carbo for uterine cancer is up
to 40% success; it is ineffective for the remaining 60%. And they only measure up to 20% tumor shrinkage.
I was told this by Memorial Sloan Kettering.Just so you know, one of the things metformin does is what
Avastin does - stop angiogenesis which is the creation of new blood vessels to feed the tumors. And Avastin
has serious side effects. My doctor want to add it to my Taxol/Carbo but I refused.

Another reason why chemo stops working is because cancer cells become chemoresistant.  Chemo does not
kill the cancer stem cells which are responsible for tumor trowth and metastasis.  Metformin attacks the
cancer stem cells.  No chemotherapy drug does this today.

 I originally entered a trial at Sloan where you either got metformin or a placebo
with the Taxol/Carbo.  The trial ends in 2019. The purpose was to make the chemo work better.  But yes, I could have
been getting a placebo of a drug that has been around since the 1950s and costs $10 for a two
month supply. I wasn't going to risk getting a placebo for a drug that has proven anti-cancer
properties and risk dying over a $10 drug.  My own oncologist put me on the drug, not
Sloan Kettering.  They called my doctor unethical. Remember, I was originally Stage 3b, then metastasized
to 34cm of tumors 2 months after surgery (including my liver).  If you get in a trial for a new $100,000
drug, yes, your sister could definitely get a placebo. It's a crap shoot.  Remember, glucose is
processed in the liver, which is where your sister has metastases. Maybe they went to her liver because of
her excess glucose production. No other diabetes drug but metformin has anti-cancer properties.

If the current chemo drugs cured cancer, they still wouldn't be looking for a cure.
Here is my feeling on chemotherapy- this is a quote from Einstein.

"Madness is doing the same thing over and over again and expecting a different result."

I know you said your sister was originally diagnosed with Stage 1 uterine.  Let me explain my theory
of how the cancer treatment industry misleads cancer patients.

A stage 1 patients is diagnosed (early in the growth of the cancer) while a stage 3 patient is diagnosed
(late in the growth of the cancer, and it is starting to spread).  What is the difference between the Stage 1
and Stage 3 cancer patient?  Time.  Remember, both patients grew cancer.  I think they forget to mention
that the Stage 1 patient still grew cancer. Meaning. if you don't try to determine what caused the cancer to
grow in the first place (ie. glucose, fat, iron, hormones, mutations, etc). and fix those causes, cancer can always
come back.  I think the cancer industry does Stage 1 patients disservice in making them believe they are cured.
So they may just go back to doing what they were doing before which may have caused the cancer to grow. 
For me, it took being told I would be dead in 4-6 months to get very involved in getting to the bottom of why I got cancer
and changing my lifestyle.  No doctor has the time to figure that out for you. You need to figure that out yourself.

If your sister is not on the metformin, I would recommend that she at least try it for a few months then get her
next MRI or CT and see if it has had any effect.  Before getting more chemo.  Has your sister taken any chemo break?
Remember, chemo does not treat metastases- it was developed to treat the original tumor. When you read about
metastasis in the medical journals, they tell you there is no known effective treatment for metastasis. That is
why metformin was such a miracle for me- all my metastases disappeared without surgery as soon as I started the
metformin. I also did radically change my lifestyle-major diet changes, cutting out most sugar and processed food,
eating organic, only purified water, lost 30 pounds, minimal alcohol.

Metformin saved my life.  Since I started taking metformin last Feb 2015, I have had no recurrences and am in
complete remission.  Will it help everyone's cancer? Of course not. But if you sister has a similar profile to what
I had, perhaps it will help.  Even if it just stops her from getting any new tumors that would be a success. 

Did your sister do genomic testing? Does she know her mutations?  Metformin also addresses two key mutations
involved in endometrial cancer- two that I have.  And there are no current drugs that are available and
effective that address these two mutations, though they are working on it.  It is very possible your sister has these mutations.

Let me know if you need any additional information.
Takingcontrol58

 

\\

 

 

ayostacey
Posts: 57
Joined: Sep 2015

Hello, thank you for all that great information. My sister was on Metformin taking 500 milligrams per day. Then they switched her to something else while she was getting her carbo taxol because they felt it was contributing to her stomach issues. They now as of two weeks ago have taken her off all diabetes medicine. She was losing a lot of weight with chemo and then her blood sugar has been very low around 50 and her primary care physician took her off all diabetes meds because they feel she doesn't even need it anymore. So that concerns me considering metformin is used to treat diabetes. If she doesn't have it anymore from losing the weight then is it going to be impossible for her to take it again? That's what I'm afraid of .

takingcontrol58
Posts: 261
Joined: Jan 2016

It appears that if your sister is losing alot of weight, her body may not be absorbing the
nutrients from her food.  Has she changed her diet? Removed processed food and sugar?
I'm not sure if this can contribute to the low blood sugar or if could have been the metformin.
But you said she was on it before. Perhaps if she rebuilds her immune system she can go back
on the metformin. It is the only anti-diabetic drug that is also anti cancer. Maybe it was the
chemo that was contributing to her stomach issues, since chemo kills the cells in the stomach
lining which is why you get nausea. Chemo destroys the immune system which maybe why
your sister is losing weight.  It sounds like she needs a chemo break or needs to stop it
all together.

If I were you, I would take her to see a naturopath or integrative oncologist, who can do blood tests
to determine what nutrients she is defficient in.  It sounds like she needs to rebuild her immume
system so it can try to fight the cancer. The immune system is the only thing that really fights
cancer. Obviously, more chemo is not working, but then again it doesn't really work on our cancer.
The scientific journals say so.  But it's all the oncologists are allowed to prescribe for treatment,
along with radiation and surgery.

Did she get a blood test to test her NK cells?  These are the natural killer cells that are the superpower
in the immune system.  The supplements that are best at rebuilding the immune system are the medicinal mushrooms-
I take Maitake-D fraction Shitake, Coriolis and Chaga.  But a naturopath would recommend what is best for your sister. 

Takingcontrol58

molimoli
Posts: 514
Joined: Aug 2014

and blunt regarding the miseducation of cancer patients re:the purpose and role Chemo plays.

"If the current Chemo drugs cure cancer ,they wouldn't still be looking for a cure. So common sense ,so true.

My 1st oncologist  answered my chemo Querry by saying  "there is a 25 %chance it will do something for a while.

My response was "I require more than 25%  from Chemo with all it's possible horrific life changing effects , for that reason I am OUT "

My 2nd visit he moved it up to 40% without being able to tell me what caused the jump, I stayed OUT.

You have validated my feelings and thoughts.Win or lose I am not putting any eggs in the chemo basket at all.

Having done your homework, Knowing what you know I am quite curious as to your expected outcome from taking carbo /taxol yourself.Do you think  it has  contributed to your remission by suppressing new growth?Just seeking rationale. This whole cancer and treatment decisions is mind boggling for many, eating up precious living time.

Thanks for explaining the not so big differences between the stages, this simple well put revelation will no doubt intrude into other's comfort zone, however, every one will be better off without the sugar coating on these nasty cancers.

Moli-- hoping remission stays with you. You are strong and determined to figure this thing out, we need you, we thank you.Blessings.

 

 

takingcontrol58
Posts: 261
Joined: Jan 2016

Unfortunately, I had not been doing enough homework on my cancer after my hysterectomy
because I was told "we think we got it all."

A few things.
1) I started the Taxol/Carbo on Jan 30, 2015- joined trial to add metformin or not at the same time
2) Second chemo infusion February 19
3) Feb 25, 2015- met with integrated oncologist who did tumor marker tests, along with many others.
CA125 was 280 - ferritin was 334 (cancer cells love iron as well as sugar). Sloan never took
CA125 test before treatment.
Put me on the real metformin, since I had no idea if I was getting the placebo or not. 
4) Third chemo infusion Mar 12
5) March 24- met with integrative oncologists- took blood tests-
CA125 was 220, Ferritin was 168 (normal less than 232) - normal
6) Mar 31- another CT scan- 34cm of tumors was down to 4cm

Within one month of being on metformin and one more chemo, 88% of my
tumors disappeared.  Based on the blood tests before I knew if I was on the
real metformin and when I knew I was, one month passed, and my turmor
markers were now normal.  There is no doubt in my mind that metformin did
this.  I always wonder if the same would have happened if I was just on the
metformin and not getting the chemo, but I'll never know. The point of the trial
was to make the chemo work better (which tells you they know it doesn't work
well). I know there are people who will disagree. I'm sure the chemo killed some
cancer since I lost all my hair- it killed something.  Maybe when you have as much
cancer as I did, those initial infusions of chemo killed alot of the floating cells to
help clear out what was so much cancer. But chemo doesn't prevent cancer from
coming back, as all these women on the cancer boards find out. Maybe now that
I was only down to 4cm of tumors, my own immune system could handle that amount
of cancer.

I had 3 more infusions (for a total of 6) and was down to 2cm- not much shrinkage for
3 more treatments. I stopped chemo at that point.  The 2 cm disappeared on their own
over the next 2 1/2 months on the metformin and supplements.

Knowing what I know now, I wish I would have stopped the chemo after 3 infusions.
I believe it is the metformin and my changed lifestyle that is preventing a recurrence because
metformin kills cancer stem cells and fixes two of my mutations.  I've tried to eliminate all the
risk factors that led to my cancer.  I pray this will be enough to prevent a recurrence, but it
is in God's hands.  I guess I'm still here for a reason.

Takingcontrol58

 

 

 

molimoli
Posts: 514
Joined: Aug 2014

Interesting journey indeed.You are really in control ,an excellent position to be in , learning all you can to keep yourself out of harm's way , awsome . Showers of new blessings I wish for you.

Moli --Thanks for coming to us.

pinky104
Posts: 574
Joined: Feb 2013

I'm very curious to know what your genetic mutations were that caused uterine cancer.  I know one of the BRCA gene mutations can cause uterine cancer.  I tried to get approval to be tested for that, but my former insurance company wouldn't test for that even though I had a mother and grandmother with a history of breast cancer, a father with prostate cancer, and a half-sister with lymphoma.  I had a basal cell carcinoma on my neck a few years before I got UPSC.  My insurance company did approve the test that looks for Lynch syndrome, even though there was no history of that in the family, and my genetic test for that came out negative.  I find it interesting to see your mention of iron as a cause of cancer.  I was diagnosed with hemochromatosis three months after my chemo ended because I was still short of breath in spite of several transfusions.  My iron level was at 968 when it shouldn't have been over 150.  I was found to have a defect that sometimes causes iron overload and sometimes doesn't.  It's called an H63D defect.  Vitamin C can make a person with that store iron, and I was taking large doses of vitamin C because I knew it was an anti-oxidant and I thought it would protect me against coming down with cancer.  Wrong!  I also ate a lot of bad foods (bacon, sausage, hamburger, etc.) that probably contributed to my cancer.  I know that hemochromatosis can cause some cancers, but I've never been told which ones. I'd love to know what defects you have if you don't mind sharing this information.

takingcontrol58
Posts: 261
Joined: Jan 2016

I did genomic testing my original tumor and one of my liver metastases. My mutations
were exactly the same on both tissues, since I had not yet had chemo.  Chemo ususally
causes new mutations which is why you need to test the original tumor and metastases.
I had no EC cancer in my family. Though my aunt got breast cancer at age 66.  I think
it is very important to do genomic testing- getting to the bottom of your cancer is like
solving a crime- you need all the facts of the crime. Foundation One did my genomic testing.
They may cover the cost if you fit into their financial model. That test is fairly expensive, but
they are on the leading edge of this testing. My surgeon sent in the tissue to them.

I had four mutations:
1) PlK3R1 (84% of EC tumors have a Pl3K mutation- on the Pl3K/AKT/Mtor pathway. Many other
cancers have mutation of this pathway, I believe melanoma is included.  I too have had 3 basal
cell carcinomas removed. Current targeted therapies are Everolimus and Temsirolus. Metformin
does the same as Everolimus, so I never took Everolimus (though integrated oncologist recommended this)
2) CTNNB1 - this one causes activation of Wnt pathway (no known treatment for this). This one
causes Stage 1 EC cancers to recur and your basic EC to be aggressive- mine was very aggressive
3) RB1- I'm still learning about this but it is somehow tied in with the other mutations-no therapies to address this
4) SF3B1- don't know much about this - no therapies to address this

The BRCA genes are tied to ovarian cancer, breast and pancreatic cancer.

My iron was 334 - it is now 70. I was a huge meat eater before I get cancer.  Now I only eat meat rarely- and no
processed meats (bacon,sausage, lunch meat- I used to eat them all). They have nitrites which are cancer causing.
I also try to get meat that is hormone free or grass fed. In fact, I do eat hamburgers but use grass fed beef. I don't
eat pork anymore either.

I don't use Vitamin C but resveratrol is the key anti -oxidant that is good for cancer. I drink a smoothie every morning,
mostly made from berries (strawberries, raspberries, blackberries, blueberries, cherries) and add liquid resveratrol
plus eight other nutrients recommended by my integrative doctor. I'll also mix in the vegetables like beets, or garlic
or carrots.

A really good book to read is "Natural Strategies for Cancer Patients" by Russell Blaylock. It tells you all about how to
use diet and supplementation to heal cancer and teaches you alot about chemotherapy and radiation.

Let me know if you have any other questions.

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