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clinical trial for me, I think

jan9wils's picture
jan9wils
Posts: 52
Joined: Mar 2017

Thanks to MABound and LuLu who opened my mind to genomic testing and clinical trials. I am screening for a trial of an immunotherapy drug. Same as LuLu, I'm MSS but have some mutations that make this look promising as a treatment for me. Hoping to stabilize or even better. If all goes as expected with screening I begin the Trial Tuesday after Memorial Day. 

I qualified for three trials but this one had an immediate opening and luckily enough was the one I was most interested in since more is known about this type of therapy. As I already knew with recurrent EC, the prognosis with standart treatments is poor, so I am thankful for having mutations.

ConnieSW's picture
ConnieSW
Posts: 1415
Joined: Jun 2012

You qualify and have great success with the trial. Will be waiting to hear more from you

MAbound
Posts: 829
Joined: Jun 2016

As NoTime recently said, "We all collectively get us down the road." The trial you are embarking on will be of great help to all of us presently here or yet to come. I really hope this works for you!

P.S. Do you think you could write your story on the about me page that we all go to when we click on each others screen names. You've told us a lot already, but it makes it easier to find when we can't keep everybody's details straight.

jan9wils's picture
jan9wils
Posts: 52
Joined: Mar 2017

Okay I've completed the my story page and I apologize for all of the misspelled words! 

derMaus's picture
derMaus
Posts: 552
Joined: Nov 2016

Thank you for updating your About Me page! It really helps us better support one another if we have the facts close at hand. Gracias!

ConnieSW's picture
ConnieSW
Posts: 1415
Joined: Jun 2012

i wish everyone would do that. There are so many of us and sometimes I can't keep things straight. 

Armywife's picture
Armywife
Posts: 266
Joined: Feb 2018

Sure would love to hear more about this.  Thank you for sharing!

jan9wils's picture
jan9wils
Posts: 52
Joined: Mar 2017

Armywife, it is an "open-label, phase 1b multicenter study of IBI308 in subjects with advanced/metastatic solid malignancies (CIBI308A102). The study agent is designed to stimulate the immune system to help it better recognize and attack tumor cells. i'll know more after Monday, fingers crossed my screening goes well. 

SF73
Posts: 252
Joined: Oct 2017

Just read your story. What a warrior you are! This clinical trial sounds very promising. Glad they had an immediate opening. Wishing you all the best! 

Lulu7582's picture
Lulu7582
Posts: 112
Joined: Jun 2018

I just finished my 2nd cycle and had a pelvic scan looks like the little beasts are decreasing in size....but get this somehow the radiologist thinks I have a uterus (CT was done in the middle of the night because I ended up in the hospital needing IV hydration but good now)!!! Haha unless there has been a miracle the uterus was removed back in 2017. Will have a chat with my gyn/onc....obviously someone wasn't awake when they read the scan...oops!!! 

Trial going ok having the usual side effects from the Taxol which is a pain but hanging in there one day at a time. 

So all the best! Keep us posted which trial.. xoxo

derMaus's picture
derMaus
Posts: 552
Joined: Nov 2016

Glad to hear from you, Lulu. May the little beasts continue to shrink...and shrink...and shrink into oblivion! That said, your magical, regerating uterus story reminds me of how we live and die based on these scans, holding our breath with every interpretation, sifting through details for any possible good to be found. Meanwhile, radiologists are seeing the same thing, day in and day out, to the point where they (apparently) see things that are no longer there. Wouldn't it be nice if it was the cancer that wasn't there, instead ?

Cool

jan9wils's picture
jan9wils
Posts: 52
Joined: Mar 2017

Update on my progress with immunotherapy clinical trial:  I have completed 4 cycles of the study drug. My previous scan showed stable disease (overall growth of about 4%). Side effects this far include some mouth sores which were alleviated with miracle mouth wash and a kidney infection. Last week I was told my thyroid has quit working and was prescribed levothyroine but I only had one dose before winding up in the ER and subsequent 3 day stay in hospital. Woke up at 3am just feeling agitated and out of sorts. Had some tingling sensations, nausea and a bit light-headed. I just couldn't get comfortable. I decided I would watch a movie. When I went to the living room I still just felt "off." Very agitated still so I called 911. I couldn't speak much above a whisper. I went to unlock the door and got very light-headed so I crawled. Paramedics couldn't get an IV line started. I struggled to answer their questions. I vomited all over the floor (I did tell them I was going to be sick). I heard them tell the hospital my Bp was 67/34 and my heart rate was 32. In the ER it was like a TV show, unlike any ER visit I've ever witnessed. Lots of nurses and two doctors, they got an IV going after many attempts and my BP began to respond. Now it was 87/55. I gave the doctor the card from my reasearch doctor that has instructions for contacting them and identifying me. I was admitted, lots of fluids given, several tests administered over the course of my stay. Finally on day 2 my BP had increased to 110/62 (normal for me) but my heart rate continued to be in the 40's. I was able to take short walks looping around the hospital with my IV pole in one hand and my heart monitor in the other. By end of day my BP was 122/78 and my heart rate was 48. I asked them to take me off the IV fluids as I was using the bathroom almost constantly! They agreed I didn't need them anymore. The next day my BP was holding steady and my heart rate was still low, 49. ECG normal, CT of chest unremarkable. They said I could go home. Consensus: low heart rate due to hypothryroid but no longer critical. Now here is the scary part: they thought I was going to code in the ER. I had no idea how dangerously low those numbers were. I just knew they were really low. Here's the good news: My immune system is cranking up and has gone after my thyroid, which can be treated with medicine. Now we will see if it will go after my tumors. I have a scan next week and another infusion. I'm feeling more optimistic than I have in a very long time. 

derMaus's picture
derMaus
Posts: 552
Joined: Nov 2016

Oh. My. Gawd. WHAT a scary experience !! I've been on thyroid meds for years and have had occassional side effects, but I had no idea it could cause that much havoc. Thank you for sharing this story, even though I'm horrified you had to go through it. I'll definitely view my thyroid with more respect now! Hope your recovery continues apace, best wishes, B

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1504
Joined: Jun 2015

Wow Jan. What a frightening ordeal you went through. So glad to hear the optimism in your post. Shout out for very good news with your next scan. Please keep us posted.

Love and Hugs,

Cindi

 

Armywife's picture
Armywife
Posts: 266
Joined: Feb 2018

My heart was in my throat reading about this adventure!  Wow!  So thankful you got good care.  Praying!

EZLiving66's picture
EZLiving66
Posts: 1320
Joined: Oct 2015

Wow, kiddo! You could have died but I'm so glad you didn't. We just never know how different medications are going to react in our bodies, do we? That sure was scary but at least I knew since you wrote it, you didn't die!! I sure hope this trial works for you!!

Love,

Eldri

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2544
Joined: Mar 2013

Jan, thank God you are doing better!!!  and thank YOU for coming and sharing what has happened.  I hope you are over the hump on all this other stuff and look forward to hearing about your scan.  

cmb's picture
cmb
Posts: 344
Joined: Jan 2018

Hypothyroidism runs in my family. Although I haven't progressed to the point of needing thyroid medication, I do get my thyroid level checked regularly. But I've always considered thyroid medication to be rather benign. I've even had to give it to a couple of my cats over the years. So I hope that your thyroid gets back to normal quickly with medication.

But your experience is very scary reminder that shows how cancer treatments can interfere with other bodily functions that aren't typically on the radar as treatment side effects.

Feelingalone74
Posts: 137
Joined: Jun 2019

What a scary experience! Sorry u went though that. Thinking of u Jan and hoping your doing better!

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