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immunotherapy did not work for me/ everolimus?

jan9wils's picture
Posts: 167
Joined: Mar 2017

I had a CT scan earlier this week and met with my study oncologist. Unfortunately, for me the immunotherapy drug I was on did not work. My cancer has continued to progress. While not surprising to find out, ( I could both feel and see some of the tumors growing) it was still very disappointing. This came on the heels of learning that the study drug caused my thyroid to stop working. I wound up being hospitalized TWICE for this when my blood pressure and heart rate dropped dangerously low. Furthermore, the thyroid issue is likely permanent, though treatable.

There are two other studies I qualify for at the research center where I'm currently a patient.  I'm reading the material and thinking about whether or not I want to try either of them. They are both phase I studies. 

In going back over my Foundation One report there are two mutations I have that may make my tumors responsive to treatment with everolimus. My regular gyn/onc hasn't treated anyone with this drug and there isn't a study open at Mary Crowley or MD Anderson. I am thinking about contacting the onc/gyn at MDA that I saw before to find out if she has had experience treating patients with everolimus. Has anyone had experience with this medicine? 


Posts: 274
Joined: Oct 2017

I'm sorry it hasn't worked. I think Lulu might have or is trying everolimus but I'm not sure.


Posts: 263
Joined: Jan 2016




I was diagnosed with Stage 3B, Grade 3 endometrioid adenocarcinoma in Oct 2014. Two months after my hysterectomy, my cancer advanced to Stage IV, with metastases to my liver, spleen, vaginal cuff/outer rectum, and nodules on my lungs, spleen and outer colon. I will celebrate my 5 year anniversary shortly- I have remained completely cancer free since August 2015.
You can read the details of my story at my original post- https://csn.cancer.org/node/299313


I was treated by an integrative oncologist- and I believe the only way to heal metastatic cancer is with integrative cancer treatment, a combination of some standard cancer treatment and a lot of complementary treatments, treatments that address the root causes of your cancer and the processes involved in forming and spreading cancer. No one cancer drug can do this as there are many processes involved in the formation of cancer. I think it’s the synergy of addressing all these things at the same time that heals the cancer.


My integrative oncologist recommended I try Everoliumus (Afinitor) back in Feb 2015- it is not a new drug.  I went home and looked up the details of the drug at www. drugs. com and decided the drug was not for me. The drug suppresses the immune system (the last thing a cancer patient needs). It is given to patients who have organ transplants.  I too had a mutation on the PI3K/Akt/Akt pathway, PIK3R1. This mutation activates the pathway which causes cells to grow out of control. Do you happen to have this mutation or the PIK3CA or PTEN mutation?   80% of all endometrial cancers have a mutation on this pathway. It would be interesting if you could share all your mutations.


I was put on metformin, which also targets this pathway, along with many of the most important processes involved in the growth of cancer- plus it also lowers these fuels of cancer, like glucose, insulin and IGF-1. I was high in all of these and considered insulin resistant.  I went on the metformin, along with 2 low dose aspirins every day (targets inflammation which is a key driver of all cancer), along with about 35 supplements and herbs (which target many of the processes involved in the formation of cancer). But my biggest changes were addressing my health and lifestyle issues-the root causes of my cancer and thus mutations- I lost 45 pounds- 8 from surgery, started eating organic, healthy food, eliminated almost all sugar and processed foods-and started to exercise every day. If you want to heal cancer, you need to change your lifestyle- I live a completely different lifestyle from before I had cancer and have never felt better. 


[Content removed by CSN Support Team]  I also take a dose of Doxycycline (the antibiotic for Lyme disease) about once a year. Doxycycline kills cancer stems cells, that don’t get killed by the chemotherapy. Metformin also targets cancer stem cells. It is believed it is cancer stems cells that cause metastasis. You have already tried most of the cancer therapies- chemo, radiation, hormone therapy, immunotherapy-so you might want to consider trying non-cancer drugs that are known to lower cancer risk. You probably need to try a different strategy. Not all oncologists will prescribe metformin but you can speak to your general practitioner or work with a doctor of functional medicine or naturopath.


There is no one magic pill that cures cancer.  You have to heal cancer.  You were diagnosed at Stage 1b, Grade 2, yet you continued to have recurrences. This tells me that your body still has an environment that allows cancer to grow.  Your job is to determine your health issues and the state of your body so you can address these issues. The oncologists won’t do this for you- they will continue to try to kill tumors but not try to determine why you keep growing tumors.  I would recommend some comprehensive blood testing to better determine some of your health issues, issues you may not even know you have.


Cancer drugs may kill or shrink a tumor, but they won’t prevent new cancer from forming; your body has to do that.  I use four supplements- medicinal mushrooms- that are known for boosting your immune system- and I get my immune system tested regularly- it continues to remain strong.


I would be happy to correspond with you via e-mail if you wish to talk about  your situation in more detail.






EZLiving66's picture
Posts: 1479
Joined: Oct 2015

Jan, I am sorry this drug has not worked for you. I can give you no advice although, I too am on 2000 mg of Metformin every day and have been since chemo was done. I have UPSC, Stage II or III (no lymph nodes were taken, nor was there a pelvic wash. However, since I'm still kicking, I'm assuming it was Stage II). It will be four years next month that I had my hysterectomy and, knock-on-wood, it has not returned. Unlike TakingControl58 I have not changed my lifestyle except that we sold our business and retired to Florida. 

I wish you the best of luck in whatever you do and please keep us updated on your progress.



Fridays Child
Posts: 216
Joined: Jul 2019

I'm getting ready to meet with the research people about a possible clinical trial, and then the other options if I am not eligible or choose not to. Currently we're appealing the denial of molecular testing.

I wonder if they can put me on Metformin. 


jan9wils's picture
Posts: 167
Joined: Mar 2017

The drug is IBI308 by Innovent Biologics. I am wondering about Metformin for myself too.

Fridays Child
Posts: 216
Joined: Jul 2019

Thanks, and good luck to you!

Posts: 32
Joined: Jan 2017

I'm sorry that the immunotherapy didn't work. Recurrences are scary and frustrating.  The doctors have a lot of tools in their kits now and the options keep growing, so hang in there.

Foundation One recommended Everolimus too.  But my onc put me on Ibrance and an aromatase inhibitor.  It's been 22 months since my last recurrence, so maybe it's working.  He's had patents on it for 6 years and are still on it.  It's for ER+, PR+ HER2- Breast Cancer.  Most of those ladies have mbc. I had similar results as takingcontrol58 on Foundation One. Also my cancer is ER+,PR+ HER2-.

I also recommend going to an integrative cancer doctor.  If nothing else, I think she's been keeping some of my side effects more or less in check.  Also, the neurapathy isn't as bad as before.  I am not on metformin, I am taking Berberine which has the same effect.  But I don't have glucose issues.  Maybe the mushroom supplements help - I teach 2nd and 3rd graders and haven't gotten sick despite low wbc.  In any case, they don't seem to hurt.

What really helps me, though, is keeping physically active.  I am an avid swimmer.  I work around my energy levels. Then, I can manage all the fatigue that comes with the various low blood levels. I can't say that the exercise keeps the cancer away, but it helps me feel stronger and NORMAL. 

Stay current on the research and advocate for yourself. 

jan9wils's picture
Posts: 167
Joined: Mar 2017

Thank you Mercorby for your comments. Right now I'm battling side effects of my overactive immune system attacking myself so I cannot consider any treatments until it's under control. I agree with you about the exercise. I always feel stronger and normal when I'm more active. Looking forward to getting more energy and being able to do more soon.

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