Uterine Stage IV B Reoccurence Vagina

Yes, I was never ned, had chemo and radiation which did nothing and was put on death row while we searched for options. I tried Metformin, which did nothing, had genomic testing which showed many alterations among others MSI-H which Keytruda was not approved for then (it is now no matter what type of cancer as long as the tumor is MSI-H) and my tumor shrunk and more, I am still here. You might want to ask about getting genomic testin of one of your primary tumor.

linmk, I am so sorry to hear about your recurrence. It is good that you had the tumor genetically tested. There are so many new and effective treatments out there. Hoping that your doctor contacts you soon with some good options for you! Wishing you peace and strength, Kim

linmk said:

Phase II Rad/Let/Lee Clinical Trial

Update: I have just started my first week in a clinical trial at MD Anderson. It involves taking three oral drugs in the morning. So far so good. No bad side effects. I feel pretty good. I was told that I am the third person to be enrolled in the study. Kvdyson, thank you for your good wishes. I hope that you and everyone on the board is doing well.

Please keep us updated on your treatment.  Although I currently am NED, who knows when a recurrence may strike especially with my UPSC.  I am sure glad you are not having any bad side effects with your new treatment.  Good luck!!!

Love,

Eldri

linmk said:

Phase II Rad/Let/Lee Clinical Trial

Update: I have just started my first week in a clinical trial at MD Anderson. It involves taking three oral drugs in the morning. So far so good. No bad side effects. I feel pretty good. I was told that I am the third person to be enrolled in the study. Kvdyson, thank you for your good wishes. I hope that you and everyone on the board is doing well.

Hi Linmk

Can you tell us what the names of the 3 drugs you’re taking are?

linmk said:

Followup: Everolimus, Ribociclib, & Letrozole Clinical Trial

The Everolimus, Ribociclib, & Letrozole Clinical Trial did not help me. The cancer spread and I experienced the dreaded canker sores, a noted side effect of the drugs. The sores began in my throat and at first I thought I just had a sore throat. Then the sores appeared in my mouth and on my lip. I've never had canker sores before and didn't quite know how to deal with them. Gargling with bicarbonate of soda and/or salt solution did not help. The sores are taking some time to go away. The drugs also raised my fasting blood sugars and triglycerides. I think the doctor wanted to put me on statins. Something I didn't want.  Other bad side effects included fatigue and lack of appetite. Also, everything I put in my mouth tasted like sugar.

I was relieved when the doctor took me out of the study. The clinical trial is still in its early stages. However she said that so far about 40% of those in the study have a positive response. I only wish that I had dropped out of it a few weeks earlier. I am feeling better now, but am still dealing with the mouth sores. After Christmas I start Gemcitabine-Cisplatin chemo treatments. It's a 50-50 chance that it will work. I'm stage iv, so I realize that my chances of surviving more than 15 months are not good. I am not afraid to die. I just want to live well.

 

I‘m so sorry the trial didn’t work for you. I used to get cankor sores often and a prescription paste called Kenalog in orabase used to quicken their healing for me. I think it’s only a generic product now but it’s worth a try. They are so painful. Good luck 

It's heartening to know that a clinical trial is in progress with Everolimus.  That is a drug that was approved for use in a defect that was found in me in my genomic testing, but it was approved for another type of cancer, not the UPSC that I have.  I asked my oncologist about taking that or the other drugs approved for some of my other mutations, but he said that since it hadn't been approved for my type of cancer and it was expensive, he thought the insurance companies would not be willing to pay for it.

I'm also a stage IVb.  I started with my cancer in 2010, when I had Carboplatin and Taxol and went into remission.  The cancer came back with a vengeance this yea, although a very small mass was found in 2014 and watched for a year with scans, and it didn't grow.  I started off taking Carboplati and and Gemzar (Gemcitabine)  in May of this year and had those for most of my treatments, but after an allergic reaction to Carboplatin the 11th time I had it (counting my chemo in 2010), I switched to Cisplatin and Gemzar for the final treatments.  I had two drugs the first week, then Gemzar alone the second, and the third week off except for labs.  I found it tougher this time than the first time.  The Gemzar did a number on me, making my blood levels drop faster than the Taxol did (and the doctor told me that's how it normally works).  I had to have my doses lowered.  But now I'm in remission again.  Since there are no parp inhibitors approved for my mutations that work on my type of cancer, I'm now trying Metformin and Turmeric/Curcumin to try to keep my cancer from coming back a third time, which my GYN/onc. seems to think will happen another 5 years or so down the road. 

Don't assume you're automatically going to die because you're stage IVb.  I'm not the only survivor on this site who has had that stage.  It may or may not be a losing battle a ways down the road.  Time will tell.  In the meantime, my GYN/onc told me I was very lucky that my cancer only came back in one area as most recurrences come back in multiple small areas, which aren't operable,  and he also said I was very lucky to be able to go through chemo a second time as there are people that can't even tolerate it a second time.  He  said there are people that have been able to have chemo nine times, so I guess you just have to see how your own body reacts to everything.

My  step-daughter is a teacher and gets canker sores at the beginning of each school year.  Stress can play a part in developing them, and so can allergies.  My step-daughter found that she was allergic to a lot of different things she regularly eats--soy, dairy, wheat, etc.  That probably isn't the case with you--it's just the meds, but I would guess that stress  from the cancer diagnosis might be keeping them from going away. 

How are you doing?