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Clinical Trial

Lulu7582's picture
Lulu7582
Posts: 52
Joined: Jun 2018

Hi all,

Ok spent the morning talking to doc about the recommendations from the tumor board regarding the next treatment plan and it is a clinical trial. It is a Phase 2 trial with an oral immunotherapy drug and taxol. The oral drug I take twice a day and the taxol is every week for 3 weeks then a week off. So good news I might not lose my hair! Yay! I know that's the least of my worries but hey I like having hair on my head. LOL!! 

I talked to the research coordinator and signed the consent so now we just have to wait for the everolimus to get out of my system. Hoping and praying this combination kicks the little beasts and kills them off. But I still have mixed emotions about a trial but we will see how it goes. 

Anyway will keep you posted on how things go. At least the data and information from this trial will hopefully help future ladies with endometrial metatastic cancer and give us more cutting edge treatment options. 

Lulu xo

LisaPizza's picture
LisaPizza
Posts: 159
Joined: Feb 2018

Congratulations on the hair news :) I hope the trial is a very positive experience and look forward to hearing how it goes!

Lulu7582's picture
Lulu7582
Posts: 52
Joined: Jun 2018

Yes it might thin but hey it is one less thing to deal with. When we are bald ...it makes everything so public!!! So yes will keep you posted.... better get my bowel protocol ready...lol!!! Sorry ladies I know TMI but constipation was a BIG problem when I had chemo last time. The everolimus was opposite!! Oh the joys we deal with!! xoxo

LisaPizza's picture
LisaPizza
Posts: 159
Joined: Feb 2018

It was for me too. I always wondered how much was due to the chemo, and how much due to all the other meds. 

Denise66
Posts: 44
Joined: Aug 2018

Congras  on the trail.  I know it's going to work for you!  You are going to take the medication and feel better everyday.  Especially, with a full head of hair! 

I'm very happy for you!  Please keep us posted.

Denise

Lulu7582's picture
Lulu7582
Posts: 52
Joined: Jun 2018

Blazing trails for all other ladies who will come after me and hopefully we will have more research so that we can kill these beasts forever and have a cure!! xo

Little Annie
Posts: 12
Joined: Jul 2018

Could you please tell us the name of this trial you signed up for?   thanks   Is it on clinicaltrials.gov?

pinky104
Posts: 568
Joined: Feb 2013

I really hate to burst your bubble, but be sure to have a wig or a hat ready.  I started losing my hair at day 10 (or maybe it was 12) after my very first chemo with Taxol.  It was back in 2010.  

Lulu7582's picture
Lulu7582
Posts: 52
Joined: Jun 2018

Thanks Pinky...yes I have a wig and lots of headscarves from the first chemo session with Taxol / Carbo. But this time it is given weekly in much smaller doses unlike my previous experience where I was given a big dose every 3 weeks. Looking at the Phase 1 side effects none of the participants who were on this small dose every 3 weeks then 1 week off lost their hair so I am encouraged by that however we will see how it goes. xo

SF73
Posts: 207
Joined: Oct 2017

This sounds very promising. Good luck, Lulu! By the way, I love your profile picture!

SF73
Posts: 207
Joined: Oct 2017

This sounds very promising. Good luck, Lulu! By the way, I love your profile picture!

DM_K's picture
DM_K
Posts: 29
Joined: Mar 2018

I will be following right with you Lulu.  I will know my treatment plan for clinical trials (if I qualify) on Thursday and will update as soon as I know.

Happy to hear about the hair!

Kaleena's picture
Kaleena
Posts: 1875
Joined: Nov 2009

Hi LuLu

Yes, we celebrate the small stuff!   And keeping your hair would be one of those things.   I was unable to take Taxol so they gave me Gemzar and Carboplatin.  I didn't lose my hair either!  Although I did nlose my leg hairs.  At least I didn't have to shave my legs.  

But like Pinky said, I originally was to take Taxol and I had already bought a wig.  But that was back in 2005.   Things have really changed.   My husband has pancreatic cancer (2016) and they gave him the full treatment.  His hair only thinned out.  It looked like he had a short hair cut.   

Let us know how it goes on Thursday.  My best to you....

Kathy

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2416
Joined: Mar 2013

You are in my prayers, Lulu.  

zsazsa1
Posts: 132
Joined: Oct 2018

Lulu, take a look at this news report from OncLive updates:

https://www.onclive.com/conference-coverage/sgo-2019/lenvatinib-combo-yields-favorable-responses-in-ovarian-endometrial-cancers/

Lenvatinib plus weekly Taxol in platinum-resistant endometrial cancer, showed 65% overall response rate.  And there are lots of other reports on OncLive about agents showing efficacy against recurrent ovarian cancer, which may have relevance in some forms of endometrial cancer, too.  You can sign up for these updates.  This is how I found out about Herceptin, and knew to lobby for getting it.  If I hadn't been receiving these OncLive updates in my email, I wouldn't have known to ask.

Advances in treatment ARE being made.  I'm hoping that the one you are going to be getting via the clinical trial is successful - the Lenvatinib +Taxol combo had nearly a 2/3 response rate!  That's really good!  Perhaps you will be getting that, or one that is even better!

BluebirdOne's picture
BluebirdOne
Posts: 77
Joined: Jul 2018

All of the big research centers plus many of the NCI designated cancer centers, OncLive, etc. have twitter feeds where they announce all kinds of information, some trials, highlight doctors or program goals or personal stories of survival.  The big ones get a lot of coverage like Breast, Ovarian, Lung and Colon, but I have found a wealth of information from following these centers. Some of the more interesting ones are Foundation for Women's Cancer, OncLive, The Society of Gynecologic Oncology, (SGO), GYN Cancer, plus Mayo, MDA, MSK, Stanford.  

 

Denise

SF73
Posts: 207
Joined: Oct 2017

This is such a big deal! Thank you so much for sharing it with us, zsazsa! 

I was going to share a mouse model study that shows a new drug wipes out ovarian cancer stem cells.. But we know what percent of mouse model findings translate to humans. what you shared is tested on actual patients and the response rates are amazing!

This is going to put a smile on my face for the rest of the day :)

 

evolo58
Posts: 264
Joined: Dec 2017

20-percent odds that I see with single chemo treatments (Carbo alone, as opposed to Taxol/Carbo) 65% beats 20 or 40 percent (with two combined treatments) any day!

Other tiny bits of encouragement:

According to one specialist, she would cite the five-year survival percentage of Stage 3C cancer now as around 42%, as opposed to 37% not too long ago. Granted, it's not even 50%, but every percentage point is encouraging!

According to THIS site, late 4B suvival rate increased by three points recently. It's up to 18% now. Still ... pretty paltry. But if you think that's awful, do NOT look at five-year survival rates around 2009 on many sites. I did. It's darn depressing.

It's still frustrating, and we've lost some really wonderful people over the last year. We have so, so far to go. But I'd like to hope that newer treatments are having SOME sort of effect, providing insurance companies don't keep denying them.

barnyardgal
Posts: 130
Joined: Oct 2017

It is great to see the survival rates go up. When I first was diagnosed I was seeing 58% for 3a on the web. My doctor said it was 70-75% and I just looked on this site and see they're now listed as 70% here as well. We do have a long way to go, but it's hard to believe just a few years ago they said you were done after a hysterectomy and maybe radiation. Now the chemo and other drugs are really making a difference. 

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