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Hormone sensitivity and immunotherapy questions

derMaus's picture
Posts: 561
Joined: Nov 2016

I saw a (potential) new oncologist yesterday, and he gave me lots to think about. Background: I have platinum resistant mets and completed CyberKnife for them in January. I also have Lynch syndrome. My current onc just goes from crisis w/o an overall treatment plan and it feels like the only person really in charge is ME, which is pretty stressful. Example: current onc hasn't even addressed the whole Lynch thing; he wanted to do a PET scan at the end of April and assess where to go after that. New doc wants a PET scan, proto, and close monitoring thereafter; he also noted my cancer has some hormone sensitivity  and wants me to start on Arimidex ASAP. He was "surprised" no one had discussed that with me before. I'd asked old doc about that but he blew me off :( I know there's a lot of Tamoxifen feedback on the other boards but didn't find a lot about aromatase inhibitors in our neck of the woods. I know Cheese is on Megace, which is similar but not the same. Any feedback on hormone positive cancer is most appreciated.

Also, new doc suggested going ahead with immunotherapy, regardless of how well the CyberKnife worked. I thought that Keytruda was more of a "salvage" drug, but his interpretation is more proactive; he wants to get it working ahead of any new tumors growing. (From that I surmise he doesn't think the CyberKnife cleared everything out, but who knows...)  Anyway, I'm a little surprised by this different approach although it makes sense: chemo is the traditional model that kills something after it's already there, even if microscopic, whereas he sez immunotherapy boosts your system to kill off whatever's left and reboot it to root out any microscopic cells before they even start. I don't think it's wrong, it's just different and I'm trying to get my head around it. Lou Ann is the only one of us that I know of who's had immunotherapy; anyone else out there? 

Let me tell you again how much I appreciate the community, support and insight I get from you all. It's truly the best thing in my life when it comes to this wild ride, y'know? Best always, B 

Posts: 257
Joined: Jan 2016

You might want to read my posting from this morning March 6, at 10:32A on immunotherapy drugs
under posting  "Uterine Stage IVb Reoccurence Vagina."  Linmk was looking into getting on an
immunotherapy drug.

One other thing.  Arimidex is given to postmenopausal women; Tamoxifen is given to women
who have not yet gone into menopause from what I understand.



derMaus's picture
Posts: 561
Joined: Nov 2016

Thank you, TakingControl58, I did read what you say and it makes sense. Unfortunately, I have microsatellite unstable tumors as well as Lynch Syndrome; my body's operating system has a factory defect and it can't entirely heal itself no matter how much I give it in the way of supplements and Metformin. Those are good things and I will continue doing them, but it will always have that gap, which the new oncologist hopes immunotherapy might bridge. I'm very fortunate to be in the 4% of the people whose genetic profile qualifies them for immunotherapy, giving me hope that my insurance will pay for it. They covered most of the F1 testing and all of the Lynch testing.  The new onc emphasized that, while targeted therapies are clearly advancing, there's no one size fits all treatment for cancer. All of us here w/unsuccessful chemo could have certainly told him that !  

NoTimeForCancer's picture
Posts: 2752
Joined: Mar 2013

Dang girl!  When did you go to Med School!  Seriously, in a million years did you ever think you would know, or want to know everything you have learned?

The one thing I will say is I agree with your new onc's statement:  There's no one size fits all.  I think we all know that, we all just want them to find the key that unlocks the cure for ours.  Hugs dear one.

CheeseQueen57's picture
Posts: 924
Joined: Feb 2016

Refreshing to hear a different approach although it makes me a little concerned because what if we never seek out the oncologist with the right approach or our oncologist isn’t willing to take a chance. I’ll be following your journey closely.  I pray it works for you. 

EZLiving66's picture
Posts: 1415
Joined: Oct 2015

Wow, I agree 100% - why not use the immunotherapy as a first line drug?  Especially for someone like me who was considered having no evidence of disease after surgery, CT scan and x-rays??  Instead, I had that horrible chemo which almost killed me and will have to live with those side effects the rest of my life.  


I am sure that in 50 years the healthcare community will look back and scratch their heads about the torture they have put us through when the answer was already there.

Please keep us updated!!!



Donna Faye's picture
Donna Faye
Posts: 400
Joined: Jan 2017

derMaus, so glad you are seeing another onc! My daughter and I just met with mine today to discuss cisplatin for me during radiation. There is so much "we don't know" with our cancers. Hang in there and keep advocating for yourself, although I know how exhausting it gets. Thank heaven my radiologist  is a gem and I go into it with high hopes. Hugs and support for you from me.

ConnieSW's picture
Posts: 1481
Joined: Jun 2012

makes a lot of sense to me. Do you have good gut instincts with people?  If so, what do they say?

Posts: 257
Joined: Jan 2016

My posting on the other topic was just to ensure women really look into the
drugs that are being recommended for cancer, . Immunotherapy is
the latest thing in cancer treatment these days but also has its
limitations.  And it is not effective for everyone. If it is possible it may
work for you because you have the correct targets, that is great. 
Women shouldn't just take a drug because a doctor is recommending it.

My belief is that if you have advanced or metastatic endometrial cancer,
you have to do much more than the standard treatment of surgery,
chemo and radiation.Because we know that doesn't cure metastatic cancer.

You need a comprehensive plan that targets all that is driving your cancer.
That is really how I healed my cancer.  It is not just the supplements and metformin alone. 
I radically changed my diet, cut out most sugar, exercise every day, lost 45lbs
(I needed to lose most of the weight), drink purified water and cut out almost all
alcohol (only drink on special occasions).

It takes work to heal cancer. I will have to work at it the rest of my life.
I believe because I lost the weight and changed the food I eat, the metformin
probably doesn't have to work so hard, since I don't have the same health
issues any longer. No one drug will cure you. I"m amazed some days how
much I have changed what I eat.

I knew my cancer was insulin driven, so that is probably why metformin has worked
so well for me.  You mention having yours being hormone driven.  I too don't understand
why your doctor didn't address this previously.  But it is probably because they don't treat
you, they treat your tumor.  Targeted therapy to me includes much more than
just a targeted drug, though it can include a targeted drug. You also have to target
your weight, diet, lifestyle, exercise habits, alcohol and smoking habits, health
issues, removing chemicals from your food, cosmetics, cleaning products, drinking purified water. 
I look at life very differently now that I did before I had cancer. I feel cancer saved
my life. If I hadn't developed cancer, I was probably on the way to diabetes or
heart disease.

If you can determine all that you believe led to your cancer, what made your body grow
cancer, that is what you should focus on.  You want to prevent your cells from turning
into cancer in the first place, so your immune system can handle the cancer cells that we
all make every day (about 1% of all the cells we make every day are cancer cells, but
our immune system kills them, so they don't go on to form tumors.) i guess the key
is not making more cancer cells than our immune system can handle.

You want to adresss cancer on the front end  (make sure your body isn't creating
too many cancer cells) and the back end (your immune system kills the ones we
make every day).  Current cancer treatment only addresses cancer after you get it-
they don't tell you what you need to do to prevent it from returning.



Armywife's picture
Posts: 394
Joined: Feb 2018

Takingcontrol, it is inspiring to see how hard you work and how committed you are to health and inspiration to others.  I wonder, though, how one can target a genetic mutation.  I am headed to MD Anderson this week to discuss the results of my Lynch syndrome tests.  Like derMaus, I believe they're going to tell me that I have Lynch.  The approach you have discussed sounds healthy and wonderful for your situation, but how does one correct one's DNA?  Also, how did you ever find the energy to make all the changes you have made?  I'm still struggling to get off the sofa.

Posts: 257
Joined: Jan 2016


Only 5-10% of all cancers are caused by inherited mutations, like Lynch Syndrome
and the BRCA genes. The rest are called somatic mutations, which are caused
by our diet, lifestyle and the environment.  It is very limiting to only focus on
inherited mutations.

The reason we have mutations is because some of the internal functions that
control our cells are not working properly- perhaps we are lacking in certain vitamins
or minerals that are the building block of our cells.  Or perhaps we have too much
of a certain element- glucose, insulin, estrogen, metals, or other poisons, that can cause mutations
and thus allow cells to grow out of control. Cells mutate when they have to react to
our toxic internal environment- they mutate in order to survive.  If they were getting
the proper levels of oxygen and nutrients, they would not have a need to mutate.

Lynch syndrome only accounts for 2-3% of endometrial cancers.  It is very important to
do complete genomic profiling- personally, I believe Foundation One is the best.  They
test for the 6 or so genes tied to Lynch Syndrome plus they test a total of over 300 genes.
Most of the genes tied to endometrial cancer have nothing to do with Lynch Syndrome.
You need to know all the mutations in your tumor.  

Once you know your mutations, you can do some research.  They know alot about many
mutations and what causes them. There are not drugs to target most of the mutations
but you can target them with supplements and drugs not targeted to cancer. You want
to try to find out what processes caused your cancer (what processes in your
body went wrong). For example, 90% of endometrial cancers have a
mutation on the PI3K/Akt/Mtor pathway- this pathway controls energy production
and insulin in our bodies. We all have this pathway. They say excess IGF-1 (insulin growth factor hormone)
and loss of the PTEN tumor suppressor gene can cause the mutation of this pathway.
But you have to do the proper blood tests first to understand the state of your body-
and learn all your tumor mutations-to find out what is driving your cancer. Oncologists
don't test for the underlying health conditions that led to your cancer. It is those conditions
that caused your cancer that can lead to a recurrence if you don't address them. 
You have to look at the "big picture" of your body, not focus on the tumor.  Your body created
a tumor. A tumor is the symptom of something else.  You have to 'peel back the onion" to try
to get to the root cause of what is malfunctioning in your body. Perhaps you exposed to toxic chemcials.
Remember the movie Erin Brockovich? Her clients had gynecologial cancers from chemical
dumping. You have to try to target all that you know may have caused your cancer, and most of what
you probably need to target has nothing to dowith cancer drugs.

Another example is the process called angiogenesis. This is the creation of new
blood vessels.  Cancer cells sprout new blood vessels to feed themselves and
grow into a tumor. This is needed for metastasis to occur. The protein that
does this is called VEGF (vascular endothelial growth factor).  Women are given
Avastin to address angiogenesis, but it has not been effective for most women and
has some dangerous side effects.  It was recommended for me but I refused.
The supplements curcurmin and black seed cumin oil also target angiogenesis,
and are  common supplements recommended for cancer patients. I use both.
The drug metformin also targets angiogenesis but is not considered a cancer drug,
but it needs to be repurposed for cancer.  There are no successful cancer drugs
that target angiogenesis yet it is a key process in the formation and spread of
tumors.  So I use supplmenets and metformin. Chemotherapy does not stop

You can target mutations with supplements, drugs and diet. Remember, if
you are healthy, you don't form cancer.  So you need to get to a healthy
state so that your body has no need to mutate its genes.

The study of epigenetics says that you can change the expression of your
genes with diet and lifestyle.  It is all about how your genes are expressed.
You are not condemned with your mutations.My integrative oncologist was a
pioneer in the study of epigenetics. And just because you have a gene mutation
that puts you at risk for a certain cancer doesn't mean you will get the cancer.
You usually have to have alot more going on. 

When my cancer metastasized all over my body, and I realized I could die,
I finally decided to change my diet and lose the weight i needed to lose. If 
I had done these things prior to getting cancer, i may never have gotten cancer.
I think we all know our bad habits and what we need to change, but we don't
change until we are forced to.

There is a great quote from the movie "The Day the Earth Stood Still," with
Keaneau Reeves "At the precipice we change."  I think that says it all.
Unfortunately i think this is human nature.  Don't wait until a doctor tells
you that you have 6 months to live to change your diet, or exercise or lose 
weight. I feel like cancer gave me a second chance and I took it.I don't
think most people look at cancer as an opportunity for change.

It is all about getting healthy again. And believe me, it takes alot of work.
I keep thinking about buyiny Oreo cookies, which I haven't eaten in almost
four years.  You can't regress back to you old bad habits or the cancer can
return. Too much chemo or radiation does not make you healthy. You can use
it to start the healing process but you have to do much more than just use cancer drugs.
Personally, i think they should be used to "jump start" the healing process.

One last thing. Ever since I radically changed my diet and lost weight, I have never
had more energy in my life.  I didn't have this much energy before I had cancer.
And doing these things has gotten my insulin, glucose, IGF-1 and ferritin levels
back to normal, hopefully lowering my risk for a recurrence.





Posts: 46
Joined: Feb 2016

I don’t frequent this forum often, but I posted before about being on Keytruda so here goes again. I am stage 4B and had liver mets, extensive lympfh/vasc invasion, a number of malignant lymph nodes, ascites etc, had 28 rounds of rads, Cistplatin, doxil, Carboplatin and had mets before finishing, obviously platin resistant. Had foundation one genomic testiing, had 25 genomic alterations among others MSI-H. Decided to go on Keytruda (a year before it was approved for solid tumors so Merck just paid for it and still do).

I have been on it for 1.5 years. After about 6 months the liver mets were inactive and gone a few months later. I did have a few lymph nodes light up a little there 6 months after beginning when I had a pet/ct scan, but I decided to stop having more pet/CT scans. I had MRIs some 6 months ago which looked fine, except for a few lung nodules. Have not had any scans since since I have decided not to try other treatments if I progress. I was never declared NED, but I have basically done nothing but vacationing around the world enjoying life so Keytruda definitely gave me another 1.5 years of quality of life (I already had a disabling chronic neurological disease so I am used to staggering around on cobblestones etc) as I was toast.

Metformin did nothing for me and being already healthy, slim etc sublements were not going to do the job.

Good luck if you start on Keytruda. I only had some garden varety side effects the first couple of months. Now my thyroid numbers, bob up and down and I expect my thyroid may end up fried, but that is a small price to pay for me.


derMaus's picture
Posts: 561
Joined: Nov 2016

Thanks bluehyacinth, I appreciate hearing from an actual user. Continue to enjoy your travels! B

NoTimeForCancer's picture
Posts: 2752
Joined: Mar 2013

Good to hear from you, bluehyacinth.  It so good for us to know about how handled Keytruda, and you prove, one size does not fit all.  Enjoy your travels!

Posts: 257
Joined: Jan 2016

Congratulations on your success with Keytruda.

It looks like the Keytruda worked because you have alot of mutations- 25
and microsatellite instability - high.  These are the factors they are saying
may be what Keytruda targets the best and that the drug works best in
patients with these two factors.

As I said above, you have to target what is driving YOUR cancer.

You have to selct the drugs that will most likely help you, which
is what you did.

Best of luck!



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