Clinical Trials

KTMay

I am new to this website and understand it is one of those most vibrant on uterine cancer. I was diagnosed with UPSC in April, had the hysterectomy et al in May, with one sentinental lymph node in pelvis determined to be serous cell, underwent 4 treatments of carbo/taxel which I completed in Sept. I was set to begin radiation therapy in October per the protocol when the CT and PET scans showed spread beyond the pelvis into abodominal areas that the radiologist could not treat without risk to organs. I had (another) laparsopy surgery almost two weeks ago to remove the concerning spots on the scans, all of which confirmed serous cell spread beyond pelvis, and they are now being analyzed by CARIS for molecular structure. As my surgeon oncologist has to date followed standard protocols for stage IIIC serous carcinomen, he is recommending I get second opinions to determine next treatment steps. I have three questions: 1) Have any of you participated in clinical trials for stage III or IV serous uterine cancer and what was your experience? 2) What chemo therapy treatments beyond carbo/taxel have proven effective in your case? 3) A couple of you are using keytruda with some positive results; how does a patient get access to those authorized to administer keytruda? Looks like I am the point person on next treatment steps which is overwhelming in terms of where to begin.  Thanks for any insights from those who have moved beyond carbo/taxel protocol, which apparently was not effective in my case. KTMay

EZLiving66

Welcome to our group that

Welcome to our group that LouAnn calls the club nobody wants to belong to.   I have UPSC,  Stage II, also and,  knock on wood,  it hasn't spread as far as I know.  I only made it through three chemos before the side effects just about did me in. LouAnn is on Keytruda and its working great for her. 

All my good vibes and positive thoughts to you!!! 

Love, 

Eldri 

BC Brady

Me too KTMay

I am set to do pre trial testing for the NCI Match trial. It is 24 arms - 22 of which are targeted chemo and 2 are immunotherapies - all depends on what mutation they find. I have the PIK3 ( and others ) but that is the one that matches one of the arms in this trial. About 20% are rejected after pre-trial testing for one reason or another. I was rejected after they thought I had a second primary cancer in the breast. Turns out it was metastatic uterine after the lumpectomy so now I am back in line for the trial. I wont start pretrial testing until December and if I make it thru all those hoops, wont start treatment in the trial until Feb. Currently, I am on Lynparza ( Olaparib ) - it's also a targeted chemo for the brca2 mutation. It's an oral chemo twice a day. I do not have the right mutation for ketruda I guess. I am also carboplatin resistant and have been on 9 different chemos in nearly 2 years. I treated for 8 rounds of carbo/taxol before a reaction. I had a clear looking scan after 6 rounds, but it came roaring back after 8 weeks. I am, and have been from the beginning, serous adenocarcinoma stage 4 - dx Jan 2015.

They tell me that serous is most similar to ovarian cancer in behavior and response to treatment. Look up the NCI Match trial and ask your drs if their hospital is participating - it's a national study. I hope that helps! Keep us posted! 

Billie

BC Brady

EZLiving66 said:

Welcome to our group that

Welcome to our group that LouAnn calls the club nobody wants to belong to.   I have UPSC,  Stage II, also and,  knock on wood,  it hasn't spread as far as I know.  I only made it through three chemos before the side effects just about did me in. LouAnn is on Keytruda and its working great for her. 

All my good vibes and positive thoughts to you!!! 

Love, 

Eldri 

LOVVVVE you hair!

I just ordered a wig that color! Hope it looks as pretty as yours! Mine is finally starting to sprout back and I look like a baby Magilla Gorilla. So wiggies are going to be in my wardrobe for awhile!

Lou Ann M

Welcome KTMay

This is a group no one wants to belong to, but we are so glad you found us.  I am on Keytruda and I am having good results so far.  i asked about Opdivo first when I saw that a couple of ladies here were trying that.  My oncologist suggested we try Keytruda first because it is given every three weeks where Obdivo is given every two weeks.  He did all the leg work to get me approved under a compassionate use program.   I had kind of reached a dead end with chemo.  So I am so thankful that I am getting this chance.  I was on Taxol/carbo for about 17 rounds when I,had a reaction to,the,carbo. We went to Doxil.  7 round of that and it worked on small tumors and bigger ones grow.  One,intwined itself between my small intestines.  Open bowel resection.. we went back to,the Taxol/carbo with a,desensitizing program for  carbo.  It was working slowly until I had another reaction to the carbo.  We tried Topotecan next with no results.  Tried Avastin which was a,genomic match for me.  It was working quite well, but I had one,of the.rarer side effects after two rounds... A heart attack..  It was after I healed from that, and we had not many choices for chemo left, that we decided to try and get,permission to,use Keytruda.

i live in a rural area and travel an hour,to,my Cancer center and it is not in a very large city either.  I have a doctor that is,very willing to try new things.  It is given just like chemo, except no pre-meds and it only lasts 1/2 hour for the,actual infusion.  So far I have had almost no,side effects.

Hugs and prayers, Lou Ann

KTMay

BC Brady said:

Me too KTMay

I am set to do pre trial testing for the NCI Match trial. It is 24 arms - 22 of which are targeted chemo and 2 are immunotherapies - all depends on what mutation they find. I have the PIK3 ( and others ) but that is the one that matches one of the arms in this trial. About 20% are rejected after pre-trial testing for one reason or another. I was rejected after they thought I had a second primary cancer in the breast. Turns out it was metastatic uterine after the lumpectomy so now I am back in line for the trial. I wont start pretrial testing until December and if I make it thru all those hoops, wont start treatment in the trial until Feb. Currently, I am on Lynparza ( Olaparib ) - it's also a targeted chemo for the brca2 mutation. It's an oral chemo twice a day. I do not have the right mutation for ketruda I guess. I am also carboplatin resistant and have been on 9 different chemos in nearly 2 years. I treated for 8 rounds of carbo/taxol before a reaction. I had a clear looking scan after 6 rounds, but it came roaring back after 8 weeks. I am, and have been from the beginning, serous adenocarcinoma stage 4 - dx Jan 2015.

They tell me that serous is most similar to ovarian cancer in behavior and response to treatment. Look up the NCI Match trial and ask your drs if their hospital is participating - it's a national study. I hope that helps! Keep us posted! 

Billie

Thanks for sharing your personal information/journey

Will do. I didn't know a body could take 9 chemos over two years! You are an inspiration to all.  K 

KTMay

Lou Ann M said:

Welcome KTMay

This is a group no one wants to belong to, but we are so glad you found us.  I am on Keytruda and I am having good results so far.  i asked about Opdivo first when I saw that a couple of ladies here were trying that.  My oncologist suggested we try Keytruda first because it is given every three weeks where Obdivo is given every two weeks.  He did all the leg work to get me approved under a compassionate use program.   I had kind of reached a dead end with chemo.  So I am so thankful that I am getting this chance.  I was on Taxol/carbo for about 17 rounds when I,had a reaction to,the,carbo. We went to Doxil.  7 round of that and it worked on small tumors and bigger ones grow.  One,intwined itself between my small intestines.  Open bowel resection.. we went back to,the Taxol/carbo with a,desensitizing program for  carbo.  It was working slowly until I had another reaction to the carbo.  We tried Topotecan next with no results.  Tried Avastin which was a,genomic match for me.  It was working quite well, but I had one,of the.rarer side effects after two rounds... A heart attack..  It was after I healed from that, and we had not many choices for chemo left, that we decided to try and get,permission to,use Keytruda.

i live in a rural area and travel an hour,to,my Cancer center and it is not in a very large city either.  I have a doctor that is,very willing to try new things.  It is given just like chemo, except no pre-meds and it only lasts 1/2 hour for the,actual infusion.  So far I have had almost no,side effects.

Hugs and prayers, Lou Ann

Thanks for sharing.

You ladies are amazing and true source of inspiration. Thanks for the paving the search ahead with hope. Off to Memorial Sloan next week. K    

ConnieSW

Good luck, KTMay

i hope Sloan finds the perfect treatment for you.

Kvdyson

KTMay, so sorry about your

KTMay, so sorry about your recurrence. My frontline chemo was Ifosfamide/Mesna/Taxol. Ifosfamide (brand name, Ifex) is an older type of chemo. It's known to damage bladders so they give the Mesna to counteract that side effect. My dx was stage 1b, grade 3 uterine carcinosarcoma and I've been NED since June 2016. I hope this information is helpful to you and that your medical team is able to develop a treatment plan that can beat back this beast. Kim

KTMay

Another questions re managing pelvic pain

As I learn and decide next treatment options over the next couple weeks, I am trying to manage constant pelvic pain especially on left side and around to middle of the back and sometimes underneath rib cage in abdomen area. I have been "clean" of chemo since September and no radiation took place. I am using Advil according to dosage but wondered if any of you have had to manage constant aching betweeen therapies which without taking Advil lays me flat on my back.  

Kvdyson

KTMay said:

Another questions re managing pelvic pain

As I learn and decide next treatment options over the next couple weeks, I am trying to manage constant pelvic pain especially on left side and around to middle of the back and sometimes underneath rib cage in abdomen area. I have been "clean" of chemo since September and no radiation took place. I am using Advil according to dosage but wondered if any of you have had to manage constant aching betweeen therapies which without taking Advil lays me flat on my back.  

Have you reported that pain

Have you reported that pain to your medical team? They may want to do a scan of that area to figure out whether the pain is related to your diagnosis. If it were me, I would definitely let them know and then take it from there if it's found to not be related. Kim

KTMay

Kvdyson said:

Have you reported that pain

Have you reported that pain to your medical team? They may want to do a scan of that area to figure out whether the pain is related to your diagnosis. If it were me, I would definitely let them know and then take it from there if it's found to not be related. Kim

Thanks

Yes I reported it to my surgeon oncologist via the nurse but no response.  Will call again Monday and then off to MSKCC where they may have some answers. Part of my challenge is "medical" team and why I am looking forward to meeting with a nationally recognized cancer institute. KT