Is anyone using immunotherapy or anything other than chemo?

angec, so thoughtful for you to be in the hunt for your SIL.  There is a phone number in the clinical trial information.  It is worth the call, what is the worst they can tell you??

Here is the info from the link for anyone interested:

The purpose of this study is to evaluate the safety and effectiveness of the investigational drug LY3023414 in women with endometrial cancer that has come back despite prior therapy or has continued to grow despite treatment. LY3023414 works by blocking the activity of two proteins known to fuel cancer growth: PI3 kinase (PI3K) and mTOR, which work abnormally in most endometrial cancers. LY3023414 is a capsule that is taken orally (by mouth).

Eligibility

To be eligible for this study, patients must meet several criteria, including but not limited to the following:

• Patients must have endometrial cancer that has come back despite prior therapy or has continued to grow despite treatment.
• Patients' tumors must contain alterations in the PI3K-AKT-mTOR pathway.
• Patients whose tumors also contain RAS/RAP or MAP kinase alterations may not participate, because these changes can cause a lack of response to drugs like LY3023414.
• Patients must have had at least one but no more than two prior regimens of chemotherapy.
• At least 2 weeks must pass between the completion of prior therapy and entry into the study.
• Patients must be physically well enough that they are fully ambulatory, capable of all self care, and are capable of all but physically strenuous activities. As an example, patients must be well enough that they would be able to carry out office work or light housework.
• This study is for women age 18 and older.

For more information about this study and to inquire about eligibility, please contact Dr. Vicky Makkerat 646-888-4224.

BC Brady said:

Thanks for bringing this up. I too, was looking for a trial and made 3 calls and an email to Sloan because of that very study. Perhaps they never got back to me because I didn't fit the criteria, but after my surgeon sent my records, I would've thought I'd get at least a response. I ended up going to Roswell in Buffalo and hope that they find me suitable for a trial in the future.

I've had the surgery, 6 rounds of Carbo/Taxol, and two months after a clear scan its back. I was panicked and knew it was all about the medicine now and any innovations were going to be in research hospitals. I'm disappointed that Sloan was so lax - and I felt invisible at my initial treatment center in Syracuse - although my surgeon was top notch. I looked at Philly Cancer Center of America - and found out that was the way a patient should be treated. Too bad the plane trip going into the winter months was just too much for me coming from upstate NY, or I would've signed on with them. I learned a lot though - and I set out to never be invisible again - and I found a wonderful match at Roswell.

My outcome at this point is uncertain and I am getting ready for a scan this month to see how 3 rounds of Doxil are working. I had the genetic testing done, and they did find a marker, but my doc said there was only a phase one trial being done in Massachusetts and that we would see how the doxil is doing first. I'm always researching - so I appreciate your post and this space.

I was diagnosed just a year ago - out of the blue. I'm 57 and still wrapping my head around everything thats happened in a short 12 months. I am interested in hearing if anyone out there has achieved remission while on Doxil? Thanks, Billie

Welcome to the group, Billie, although we're a group nobody wants to belong to.  What was your initial diagnosis?  What treatment have you had?  I'm Eldri, age 63 and was diagnosed in September with UPSC, Stage II, Grade 3.  I did three rounds of Taxotere and Carboplatin and had to quit because of the side effects.  The last chemo was over four weeks ago and I'm still sick.  I'm also dealing with an infection after they removed my infected port.

Love, 

Eldri

EZLiving66 said:

Welcome to the group, Billie,

Welcome to the group, Billie, although we're a group nobody wants to belong to.  What was your initial diagnosis?  What treatment have you had?  I'm Eldri, age 63 and was diagnosed in September with UPSC, Stage II, Grade 3.  I did three rounds of Taxotere and Carboplatin and had to quit because of the side effects.  The last chemo was over four weeks ago and I'm still sick.  I'm also dealing with an infection after they removed my infected port.

Love, 

Eldri

Eldri,

My dx was last January 2015 - uterine CA stage 4 - metastasis to abdomen - serous adenocarcinoma. No major organs at the time - 5 large tumors removed, complete hyterectomy, and many smaller "grains of sand size tumors". 6 rounds of the carbo txol was rough - but I kept moving - had to premedicate with  steroids to get through the treatments. Clear scan in August but back in October with numerous spots lighting up. Genetic testing showed 3 markers - none of which have any therapies as yet. Doxilrubicin is actually easier for me - but exhausting. Once you fail to go into remission after carbo/taxol apparently youre done with that and you go to the next recipe - which for me was this doxil. 

Hard to recover from any infection in your port when the chemo probably put your numbers down. I'm told that chemo is cummulative - so you are still feeling the effects of all three of your treatments - like compounded. My side effects on your cocktail were different each time so very hard to predict. I'm sorry that it didnt work for both of us since it's so awful to get thru! I always wonder - is this the chemo or the disease? I knew I wasn't rallying the way I had hoped in August after the clear scan and everyone kept saying well - it took 8 months to break your body down - it'll take that long to build it back up. But I had a sneaking fear it was back. So I asked my primary to order a blood test and the CA 125 had tripled. I had some rectal bleeding - coincidentally - apparently NOT cancer - and that prompted my primary to refer to a GI doc who ordered a contrast CT - and sure enough, it was back. 

Hoping this Doxil will beat it back - scan will tell in two weeks.

Love, Billie

BC Brady said:

Thanks for bringing this up. I too, was looking for a trial and made 3 calls and an email to Sloan because of that very study. Perhaps they never got back to me because I didn't fit the criteria, but after my surgeon sent my records, I would've thought I'd get at least a response. I ended up going to Roswell in Buffalo and hope that they find me suitable for a trial in the future.

I've had the surgery, 6 rounds of Carbo/Taxol, and two months after a clear scan its back. I was panicked and knew it was all about the medicine now and any innovations were going to be in research hospitals. I'm disappointed that Sloan was so lax - and I felt invisible at my initial treatment center in Syracuse - although my surgeon was top notch. I looked at Philly Cancer Center of America - and found out that was the way a patient should be treated. Too bad the plane trip going into the winter months was just too much for me coming from upstate NY, or I would've signed on with them. I learned a lot though - and I set out to never be invisible again - and I found a wonderful match at Roswell.

My outcome at this point is uncertain and I am getting ready for a scan this month to see how 3 rounds of Doxil are working. I had the genetic testing done, and they did find a marker, but my doc said there was only a phase one trial being done in Massachusetts and that we would see how the doxil is doing first. I'm always researching - so I appreciate your post and this space.

I was diagnosed just a year ago - out of the blue. I'm 57 and still wrapping my head around everything thats happened in a short 12 months. I am interested in hearing if anyone out there has achieved remission while on Doxil? Thanks, Billie

I had 7 treatments of Doxil and it did get rid of small tumors, but did nothing to the 2 larger ones.  I had a hard time with the Doxil, for me the side effects were unpredictable.  Everyone seems to react to the different chemos in different ways, with different results.  Hoping and praying for the best for you.  Lou Ann

takingcontrol58 said:

First posting- how I got to NED for Stage IV metastatic EC

Hi,

This is my first posting to this site.  After reading many of the entries on this site, I felt I had to join.

October 2014- diagnosed with Grade 3 endometrioid endocarcinoma  (endometrial cancer)

November2014- total hysterectomy, plus removal of ovaries, fallopian tubes, cervix, 13 lymph nodes, part of omentum and perirectal tumor <1cm, cancer went into
lymphatic system

January 2015- CT scan prior to recommended treatment of radiation and chemotherapy.

Cancer had metastasized to liver, spleen, outer rectum (5cm) plus nodules on lung, spleen,colon- 34 cm of measurable tumors in total - two months after surgery prior
to any treatment - MSK radiologist told my husband I had 4-6 months to live.  Now Stage IV. No radiation. Was told radiation destroys the liver.

My gynecological oncologist/surgeon recommended I meet with integrative oncologist, Dr. Mitchell Gaynor (NYC) - Lisa mentions him on this site
He wrote The Gene Therapy Plan - he saved my life. His death is a mystery. I saw him two weeks before he died.

January  30, 2015- started chemo infusions at MSKCC of Taxol/Carboplatin-joined a trial that added metformin to Taxol/Carboplatin treatment (may have been
getting a placebo)

end of February 2015- met with Dr. Gaynor, after 2 chemo infusions - tested various blood markers- were extremely high - CA125 was 280 (there are many other
cancer markers that I am tested for regularly ).  

Dr. Gaynor put me on the real metformin because I am insulin resistant (and metformin is known to have anticancer properties for many types of cancers)
I removed myself from the trial at MSKCC.  Metformin was discovered in the 1950s- approved in 1995 by FDA. 125Million people around the world take drug for
diabetes and insulin resistance plus a few other conditions, like PCOS. Dr. Gaynor also put me on 34 supplements.

Mid-March 2015- third chemo infusion. 

March 23, 2015 -  met with Dr. Gaynor after 3 chemo infusions and one month on metformin- CA125 was down to 20

March 31, 2015- another CT scan- went from 34cm of tumors to 4cm- MSKCC could not explain why

April - May 2015 -Had remaining  3 chemo infusions of Taxol/Carbo

June 2015-  another CT scan - now down to 2cm of tumors (on spleen and rectum). MSKCC wanted to give me up to 4 more chemo infusions- I refused.

Dr. Gaynor increased my dosage of metformin and added 9 more supplements to my regimen.

August 2015- PET/CT declared NED, two weeks before Dr. Gaynor died. 

For Billie, ask your doctor about giving you a prescription for metformin.  You can research hundreds of articles at www.pubmed.gov (National Insititutes of Health).
One of the articles calls metformin a "magical" drug. Made from the French lilac.

My surgeon had genomic testing performed so I was able to research that metformin targets two of those mutations, for which there are no successful targeted
therapies yet.

If you have advanced or metastatic EC, I believe you have to attack cancer from many directions.  I stopped eating processed food, eliminated almost all sugar(I was a sugar
junkie), drink only purified water and cut out 99% of the wine I was drinking, also down 40 pounds.  You need to figure out the cause of your cancer and fix that.I figure you
have to get back to your healthier self, prior to when you had cancer.

Goal is to remain in remission.  Last chemo May 2015.  As of October 2015, CA125 is 13. Continue to take metformin and supplements only.

Hope this helps some of you looking for other solutions,
takingcontrol

 

 

You give us hope that even with Stage IV you can achieve NED. My GP just started me on Metformin because the chemo caused my blood glucose to go so high.  Maybe it will keep the UPSC from mestastasizing in my body!!!

I'm glad you decided to join our group although I wouldn't wish this on my worst enemy.  Keep us updated!!

Love, 

Eldri