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Keytruda Efficacy

Gardena
Posts: 102
Joined: Jan 2016

Greetings All. I’ve been a member since 2016. I have been on immunology for a year and a half and wanted to share my experience. First, my backstory/ treatment history:

I was diagnosed in Fall of 2015 w stage 3c2 endometrial adenocarcinoma, I had a radical hysterectomy, followed by six rounds of carbo / taxol, followed by 28 external radiation txments. After frontline treatment I was put on Metformin. Started w 500 milligrams per day and worked up to 1500 milligrams per day, where I am currently.

At six month PET scan hyperbolic activity was seen in my clavicle lymph nodes. I had 24 external radiation txtments to one node and surrounding area, accompanied by 4 low dose carboplatin treatments. The radiation shrunk the one node, but soon another node in my neck was swelling and my onco suggested Avastin. I declined and asked if there was any other treatment available to me. My onco retested my tumor (on file) and was then able to offer me Opdivo. It is an immunology drug by Bristol Meyers. My insurance company denied me, which was expected, as it has not be FDA approved for uterine cancers, and Bristol Meyers agreed to provide it for free for one year under their compassionate patient program. I had an infusion of Opdivo every two weeks for one year starting in May 2017. After starting Opdivo my clavicle nodes shrunk and required no further treatment.

After being on Opdivo for six months I had a CT scan and enlarged lymph nodes were found in my left armpit area. Three lymph nodes, that when biopsied, turned out to be my original cancer and not breast cancer. I continued on Opdivo and had eleven rounds of radiation on these nodes.

At this point, it's now May/June 2018... I’m switched over to Keytruda and it’s also time for my six month CT scan. My CT is clear - No evidence of disease. The first time since being diagnosed in 2015. Then January 2019 rolls around and it’s time for another CT scan. At this point, I have been on Keytruda for six months and on immunology for a year and a half. My CT scan was clear once again.

My onco and I discussed staying on Keytruda until June of this year (which will be two years on immunology) if my next six month scan is clear (this will be a PET scan as opposed to CT.) I am nervous about being taken off of Keytruda in June, but also excited. It can always be reintroduced to my system if need be.

Sorry this is so long winded. If you’ve read this far, thank you for listening to my story. I hope I can encourage you all to keep going, be your own advocate, and live your best life. All the best, Gardena

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1554
Joined: Jun 2015

Gardena,

Thanks for taking the time to post your update. We can all use great news and this sure sounds like just that!

I pray that you continue to have results that allow us to dance with you. Congrats!!!!

Love and Hugs,

Cindi

oldbeauty
Posts: 194
Joined: May 2012

This is vital and useful information of note for many here, I expect.  As for me, I also have endometrioid adenocarcinoma.  At diagnosis in 2005, I was Stage IC (old system), Grade 2.  My tissue was estrogen and progesterone receptor positive.  Since then, I have recurred two times and we are watching a single pulmonary nodule in my left lung lobe for possible third recurrence.

May I ask what grade you were staged with at diagnosis?  I have not had occasion to research immunology much so it may be my ignorance showing but I thought Keytruda was for tumors with certain profiles.  And, I did not think the "garden variety" endometrioid adenocarcinoma type of UC was an approved target for Keytruda.  So, if you'd care to share a bit more info about the justification for the switch over to Keytruda, I'd very much be interested.  Thanks for your consideration.  Best wishes, Oldbeauty

Gardena
Posts: 102
Joined: Jan 2016

OldBeauty, I was diagnoused as 3c 2. I was switched from Opdivo because Bristol Meyers no longer offered me the compassionate patient  program and my insurance company would not cover the very high cost per dose. It happened right around the time the FDA approved Keytruda for use w cancers that have particular mutations, of which my uterine cancer did/does. Wikipedia has a good explanation of Keytruda, how it works and what it targets.

Basically, Opdivo and Keytruda are the same drug type, created by different companies. Equate it to aspirin, many companies make it and   sell it under their own label. So switching me to Keytruda was the logical choice if I wanted to stay on immunology, as my insurance would cover the cost.

I hope that answers your questions.

Gardena

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

Gardena, your story is informative, and inspiring. Might you cut-and-paste some of it to your "About Me" page? It would be so helpful for others who are in your same situation to see someone who's faced challenges and overcome them. Thank you for your consideration. B

Donna Faye's picture
Donna Faye
Posts: 253
Joined: Jan 2017

It is always a lift to read good reports. Happy for you and gives us information we need. Keep it up!!!

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

for sharing your experience. The gift of hope is a treasure. 

cmb's picture
cmb
Posts: 377
Joined: Jan 2018

As I also have the genetic mutation that could benefit from Keytruda should my cancer recur, I was very interested to read about your experience. Thanks for sharing.

oldbeauty
Posts: 194
Joined: May 2012

Can you point me to the source for this info?  I am in watch/wait for a small lung nodule.  If it grows I want to harvest tissue for analysis.  What tests discover the key to Keytruda/Opdivo??  Thanks for any insight.  Best wishes. Oldbeauty

cmb's picture
cmb
Posts: 377
Joined: Jan 2018

oldbeauty,

My tumor was tested after surgery and the pathology indicated that I may have Lynch Syndrome, a genetic mutation. This was later confirmed with additional genetic testing. Lynch Syndrome predisposes a person to different types of cancer.

In the past, knowing one had Lynch could be used to take a more proactive approach to preventative testing, but didn't change treatment protocols.

But about 6 months after I was diagnosed, the FDA approved the use of Keytruda for patients with cancers that have recurred after initial treatment, if the patient has a kind of cancer that is shown by a laboratory test to be a microsatellite instability-high (MSI‑H) or a mismatch repair deficient (dMMR) solid tumor. Lynch Syndrome causes microsatellite instability-high (MSI-H), making me and others with Lynch Syndrome possible candidates for immunotherapy.

See https://www.keytruda.com/msi-h/ for more information.

oldbeauty
Posts: 194
Joined: May 2012

OK.  Those I've heard of...the mismatch repair deficiency and Lynch and MSI-H.  I will make a note and retain this time.  Thanks again, cmb.  You are awesome.  Best wishes, Oldbeauty

Little Annie
Posts: 19
Joined: Jul 2018

I love to read stories like this.

 

Kaleena's picture
Kaleena
Posts: 1976
Joined: Nov 2009

Gardena, that is good to hear.   Thanks for sharing your story.

Hugs!

Kathy

evolo58
Posts: 293
Joined: Dec 2017

To read the Keytruda is helping you. Congrats!

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