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Clinical Trial

Lulu7582's picture
Lulu7582
Posts: 112
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: 214
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: 112
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: 214
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: 56
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: 112
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: 19
Joined: Jul 2018

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

Lulu7582's picture
Lulu7582
Posts: 112
Joined: Jun 2018
pinky104
Posts: 574
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: 112
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: 264
Joined: Oct 2017

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

SF73
Posts: 264
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: 50
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!

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

DM_K did the doc find a trial for you??? Check out and see if the trial I am entering is at your facility?? Will be interested to hear what your doctor's decide. xo

DM_K's picture
DM_K
Posts: 50
Joined: Mar 2018

Hi Lulu.  I'm still waiting to know for certain which clinical trial I will be going in.  Apparently my doc is having radiology check and recheck film because I need a lesion 1 cm bigger for the study he wants me to go into.  During the waiting, the last 2 weeks to be more specific, I had 2 paracentesis done with 2 liters of fluid (first time it was a creamy color, second time light green) being removed each time, fortunately after the last tap it's not filling back up at the same rate as after the first one.  My pain has increased and now I'm seeing a pain doc, he increased my narco and then he will reevaluate my pain level in a week.

Last Tuesday I saw my PCP who I haven't seen in a year, I needed to catch her up with everything.  She ordered a TSH, I think because my skin is very dry, and lo and behold the result was almost 3 times higher than the high normal range.  Between the fluid in the abdomen, the edema on my upper thighs, and the hypothyroidism no wonder I am packing on the weight.

Today I had another CT scan of my abdomen, pelvis, and chest.  Doc also wanted my brain scanned as well because I saw waves in my peripheral vision 3 times. 

Sorry to hear your clinical trial was put on hold, the waiting is the worst part.

 

SF73
Posts: 264
Joined: Oct 2017

Wishing you all the best DmK. Such a good idea to see your PCP. Sometimes we focus on cancer alone and neglect all other health issues. It may be possible to help our bodies fight with cancer better if we address those other unrelated health issues. With health no two issues are unrelated anyways. 

DM_K's picture
DM_K
Posts: 50
Joined: Mar 2018

So true SF.  Hopefully the elevated TSH is just related to hypothyroidism and not metastic thyroid cancer.  I did tell my gyn onc about a month ago that my neck hurt so bad when I had a deep belly laugh that I had to stop laughing.  My gyn onc replied, thinking he was funny, "well don't laugh."  We'll see what happens.

Kaleena's picture
Kaleena
Posts: 1961
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: 2585
Joined: Mar 2013

You are in my prayers, Lulu.  

zsazsa1
Posts: 322
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: 195
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: 264
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: 293
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: 212
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. 

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

I have book marked OncLive ...thanks for the information. Yes it is exciting to see the advances in treatment.

The trial I am joining is an experimental oral immunotherapy drug with the Taxol. I had a complete response last time when I was on Taxol and Carbo so hoping it will be successful this time with the new oral immunotherapy drug. Starting next week if my labs are ok this week. The schedule will be oral drug for 28 days and low dose taxol day 1, day 8 and day 15, then repeat. So time will tell. 

INCB 01158-203 A Phase 1/2 Study to Evaluate the Safety, Tolerability, and Efficacy of INCB001158 in Combination with Chemotherapy, in Subjects with Advanced or Metastatic Solid Tumors

This is the trial. 

LisaPizza's picture
LisaPizza
Posts: 214
Joined: Feb 2018

Exciting :) if that's the right word, lol, hope you know what I mean 

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

Yes I know what you mean. Really hoping this immunotherapy oral drug kills the little beasts and stops them in their tracks. I know the taxol did it's job last time but  praying the side effects are going to be doable.... next week we will see how it goes.

Looks like long days this month (8 hours in the infusion center) because they will be drawing bloods to figure out the pharmacokinetics etc. etc. oh joy!! Lots of Spotify because I usually can't concentrate on reading ...but liked the idea of funny movies so will download some and see if I can watch them later on when the benadryl wears off. 

barnyardgal
Posts: 212
Joined: Oct 2017

Great. Hope all goes well and you kick this beast quickly!

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

Entering the trial has been delayed because my hemoglobin is 7.2 (side effect of the lovely everolimus). Doc wants me to be above 9 before entering the trial so just had a blood transfusion yesterday. Today I am feeling so much better. Didn't realize how crappy I was feeling prior to the transfusion. I suppose we just get used to the feeling and it becomes the norm. Anyway it has perked me up and feeling much better. Tentatively will start the trial at the end of next week. Say some prayers for me. Really hope this kicks my cancer in the butt!! 

Have a great weekend everyone! xo

ConnieSW's picture
ConnieSW
Posts: 1442
Joined: Jun 2012

I will keep yo in my thoughts. Good luck. 

SF73
Posts: 264
Joined: Oct 2017

I will be thinking of you Lulu. Wishing you a mention in the newspaper worthy success!

EZLiving66's picture
EZLiving66
Posts: 1345
Joined: Oct 2015

I've got my fingers crossed this works for you!! So many new and exciting treatments are coming out lately. Please keep us updated on how this works!!

Love,

Eldri

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

Ok so I am day 5 right now and feeling pretty good. No appetite but nausea is ok. Ended up taking some antiemetics for the first few days but I was already nauseated before we even started the trial. I think the combination of low Hemoblobin and the cancer having free reign as the previous drugs wore off didn't help. 

Bone pain tolerable and have cut back on the NSAIDS I was eating....now down to only 1 in the am so that's an improvement!!! Went for a short walk , not my usual walk but hey it's a start!! Anyway feeling optimisitic and praying that each week the little beasts are getting attacked and killed!! 

L xo

zsazsa1
Posts: 322
Joined: Oct 2018

Lulu, that's great that you're feeling a bit better.  Glad you were able to get outside.  Hoping it's beautiful spring weather where you are.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1534
Joined: Jun 2015

Lulu, glad to hear you were able to walk a bit today. That and loads of rest will help you so much!

 

Love and Hugs,

Cindi

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

Lulu, I'm glad you were able to get outside. There's nothing that quite replaces time outside for feeding the soul. I was just reading some research that talked about the value of time outdoors for physical and mental health, something we pretty much knew already!

barnyardgal
Posts: 212
Joined: Oct 2017

I'm glad you're feeling better and the trial is going well.

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

Your comments lift my spirit!! Thank you!! So very thankful for all of you.

Just back from my doc appt ..... all is well. The unions here are having a strike day and I needed labs drawn today but thank goodness for a few folk who decided to work anyway. I thanked them for coming to work and not effecting patient care. I believe in unions but glad someone was there to draw the labs they need before Friday's infusion. 

It is blue skies and sunshine outside so getting ready to go for another walk and yes it does feed the soul to be in the sunshine.  xoxo

PS for all you English majors I apologize if I used the wrong effect vs affect..... not my strong point!! LOL 

Universe
Posts: 7
Joined: Apr 2019

Wishing you best Lulu. May this trial work wonders.

BluebirdOne's picture
BluebirdOne
Posts: 195
Joined: Jul 2018

We are rooting for the best outcome!  Wish I could go outside, it is snowing like crazy and they are talking blizzard warnings. 

xxoo

Denise 

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

Oh my yes I have been hearing about the blizzard you guys are dealing with. It is pretty when it snows but a pain when you have to work and carry on life in it. We lived 6 years in South Dakota....definitely had my taste of living in the snow. Stay safe and warm. xoxo

DM_K's picture
DM_K
Posts: 50
Joined: Mar 2018

Lulu so glad to read you are moving right along with your treatment, we never know what will work for good!

DM_K's picture
DM_K
Posts: 50
Joined: Mar 2018

I lost out on getting into a clinical trial that my doc really wanted me to get into.  They couldn't find a tumor 1 cm bigger than what was required for the study.  After waiting nearly 2 months and having a few CT scans trying to find a tumor that would meet criteria, I've had 5 paracentesis with an average of 2.5 liters of cancer cell fluid removed.  Ascities is the worst as far as I am concerned.  Today I started on Doxil and Avastin, which my doc had to battle my insurance company for the Avastin.  After my treatments I then went and had my 5th paracentesis where 2 liters were removed and I haven't felt this great in months.  I know it will take a couple of days for the side effects to hit me but after feeling this good I'm ready for it. 

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

Yes DM_K I do hope the treatment doesn the trick and stops the ascites for you. All the best. 

I am doing ok although my neuropathy has just got worse with pain at night so they are dropping the dose of Taxol.....yay! Much more in line with what I think is low dose......70mgs vs the 135mgs.  Friday I get the lower dose so we will see how things go. xo

SF73
Posts: 264
Joined: Oct 2017

Best of luck on Friday, Lulu. Are you icing your hands and feet during chemo treatment? Not walking too much on the day of the chemo also helped me.

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

My hands are fine and actually the feet aren't too bad but thought I would mention the weirdness I get at night and they decided to drop the dose of Taxol which is fine with me. I do have icing booties but it is such a pain so will see how the lower dose goes. Thanks for the advice. xoxo

BluebirdOne's picture
BluebirdOne
Posts: 195
Joined: Jul 2018

I hope that the new meds and treatment will do the trick. I am thinking of you.

 

I hope that the new meds and treatment will help you. I am thinking of you.

Denise

 

 

 

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

Long day yesterday....due to all the clinical trial requirements but it is what it is. So far all my blood tests are staying normal. Completed first cycle and they did reduce the Taxol to 117mg/m2 which hopefully will also reduce the side effects of nausea etc. Neuropathy is fine now...weird how that last week had a couple night where they ached. Tried to ice the toes this time and nearly froze my feet off...have to figure this out better...maybe 20 mins on then 20 mins of to make if more comfortable. 

Anyway feeling good today but on the steroids. So getting lots done...washing clothes, cleaning house and cooking stuff for Easter dinner tomorrow. Have a wonderful holiday weekend everyone. xo

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2585
Joined: Mar 2013

Lulu and DM_K, you are in my prayers.

DM_K, I hope they can find something for you.  Here is the clinical trials site as well:

https://clinicaltrials.gov/ct2/results?cond=Uterine+Cancer&term=&cntry=&state=&city=&dist=

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