Oct 8, 2014 05:26PM yogamama wrote:
Just Pm'd you. Likely to start this in a few weeks!
Share your research articles, interpretations and experiences here. Let us know how these studies affect you and your decisions.
Posted on: Jul 16, 2014 07:55PM
I started this clinical trial in May 2014 and would like to connect with anyone else who is on it. It's a Phase III trial for high risk hormone-positive, HER2- patients to see if adding one year of everolimus to hormone therapy improves disease-free survival. Anyone?
Posts 1 - 30 (132 total)
Oct 8, 2014 05:26PM yogamama wrote:
Just Pm'd you. Likely to start this in a few weeks!
Oct 9, 2014 10:28AM Bec65 wrote:
Finally I have a buddy! A PM is heading your way.....
Oct 29, 2014 12:22AM Bec65 wrote:
Hi~ It's crazy how the same drugs affect us each differently. My doctor and I both think I got the drug mostly because of how my lab work looks. My cholesterol has gone up significantly, and my WBC has gone down, but I feel great. The only SEs I could even mention would be an increase in mouth sores from what I've had all my life, and a pretty frequent "shedding" of the skin on the roof of my mouth. Actually, these things that I'm experiencing in my mouth also make my MO think I got the drug.
I have my next follow up on Monday and hope to feel more definitively that I'm on the drug (not placebo). What have you been experiencing?
Nov 19, 2014 08:35PM MADean wrote:
I was pretty sure in a couple of days that I got the drug. I started in Aug. coupled with Letazole. end of Oct spent the weekend in hospital with peumonitis. Have been off the drug 3 weeks and still the fatigue is horrible. Steriods in hospital helped with mouth sores. Thyroid levels are low, cholesterol levels are high and glucose levels are high. So today we came to the decision to stop the study. Hoping to feel better soon. I also was at Gilda'sClub today and one of the staff said she knew lots of people who had had lots of trouble with Everolimus. So odd how it can make some so sick and others not so much. Hope you feel better soon
Aug 16, 2015 05:04PM live_deliciously wrote:
hi. I have been asked to join this phase 3 trial. Are you still on it or finished?
Aug 17, 2015 09:15AM Bec65 wrote:
Hi there! I finished at the end of May. My MO and I still think I did receive the actual drug based on my lab results over the year and some other SEs. My labs are back to normal, but I still have some mouth issues. Honestly, I have far more troubling SEs from Femara than from the trial drug. If they'd let me keep taking the trial drug, I would -- anything to improve the odds! I noticed how early you are in your treatment.....how are you feeling?
Aug 17, 2015 06:52PM live_deliciously wrote:
im doing fine thanks for checking. Almost done with rads. Two more days. Then start tomoxifen on the 24th. I meet with the nurse to start the procedure for the trial tomorrow and she said i would start taking the trial pills either placebo or the real thing about a week later. I read some nasty things about Affinitor. Hope if I get the drug I don't experience them. I did really well on chemo and rads as far as minimal side effects. I heard the results wont be available for three years? Thanks for letting me know your experience.
Aug 18, 2015 10:53AM Bec65 wrote:
When I went in for my very first MO appointment after starting the trial, I was absolutely sure I was getting the placebo because I felt fine. When my MO walked into the exam room, she said, "I think you're getting the drug!" I started crying, I was so happy. I hope if you do it that the SEs are minimal. It will be hard to sort out what the cause is since you'll be starting Tamoxifen at the same tim, but hopefully all will be minimal. Good luck, and pm me or post anytime!
Aug 18, 2015 11:27AM live_deliciously wrote:
hi. I just met with the trial coordinator and I will start tomoxifen on Monday and then have to wait til end of Sept to start the study. I guess there is a 21 day waiting period after radiation. So hopefully I'll be able to sort out any side effects of tomoxifen first. Thanks for your encouragement and I will keep you posted
Aug 19, 2015 11:17AM Bec65 wrote:
Sounds great...good luck, and I'll look forward to hearing how you're doing :)
Nov 2, 2015 10:11AM melb44 wrote:
I was just asked to be part of this trial too. I start radiation today and started Tamoxifen last week. How were everyone's side effects?
Nov 2, 2015 07:13PM live_deliciously wrote:
hi melb44. I have been in the trial since Sept. 29. I knew right away I got the drug within 3 hours of the first pill. In the first week I had a huge headache (like when I got the first chemo injection), nausea, and a rash on my face and chest. Things are better once I learned to manage timing with food and water intake. They don't let you have much for breakfast with the pill. I learned to take it with a large glass of water and then a banana and a coffee. then 2 hours later I can eat something more. If I don't eat at the 2 hour mark after taking the pill then at the 3 hour mark like clock work I get nausea. Just like chemo I need to have lots of fluid intake . I had constipation with tomoxifen and now with the trial pill it has made me regular so they countered ea other. Otherwise no other side effects so far. I have my first Dr ck and blood work next week so will know more then. Keep us posted.
Nov 4, 2015 10:12PM Bec65 wrote:
Hi melb44! I think I got the drug too, but my side effects (if they were from the trial drug) weren't nearly as dramatic as live-deliciously's. I was in the trial from May 2014 through May 2015. The SEs that I felt were all in my mouth. The skin on the roof of my mouth would shed a couple times a week, and I got little canker sores every now and then, especially at the beginning of the trial. The canker sores were especially interesting because I have gotten bad canker sores all my life, but they stopped during chemo, then I got little barely-annoying ones during the trial. My MO thinks I got the trial based on my mouth issues and my lab work. My total cholesterol increased dramatically (and it hasn't come back down yet but my ratio is good), and my WBC dropped. It wasn't until the lab work I had right after the trial ended that I had any liver numbers go outside the normal range, but they're back to normal now. I agree with live_deliciously -- I had to figure out a new morning food routine to get that full glass of water in with the pill and no fat for a couple hours. I ended up taking the pill with the glass of water, having coffee with nonfat milk, fruit an hour later, then my usual PB&J toast about two hours after the trial drug.
As for the mental aspect -- I'm so glad I did it and I'd still take it if they'd let me! The regular lab work was a bit of a roller coaster (anxiety-relief-anxiety-relief), but I have to know I'm doing everything possible to prevent a recurrence. I'm on Femara now and will gladly take that the rest of my life.
Post again or PM us if you're wondering about anything else.
Feb 9, 2016 11:35AM live_deliciously wrote:
here's an update for my trial drug experience. See earlier posts for beginning symptoms. After the first cycle my total cholesterol went up 50 points. Onc said it could be good cholesterol hdl. So we just continued as normal. At 2nd 6 week cycle had blood work again and total cholesterol went up another 65 points. Went to my MD and it was my bad cholesterol ldl that was going up. So in 12/weeks my total cholesterol went up 115 points. They put me on a statin and I'll have it checked again mid march at the 3rd cycle which is 12 weeks this time. Only other side effect I forgot to mention is I did have altered taste early on and still do.. Most things taste much saltier than normal and chocolate and alcohol isn't as appealing, which is good. But my general sweet tooth is still enhanced. Still managing my breakfast to not get nauseated after taking the pill.
So far the drug has been very doable.
Feb 9, 2016 12:41PM wrmbrownie wrote:
Glad you've gotten your side effects under control Live_deliciously.
My third cycle will start this week. Nothing is different so I'm sure I'm taking a placebo. I'm being very careful with it and am hoping this trial will help others in the long run!
Feb 9, 2016 04:23PM ssgranados wrote:
Thanks for informing me of this thread live_deliciously! I'm starting radiation in a couple of days and then supposed to start the trial of Everolimus. I'll continue to read comments on here and follow.
Feb 23, 2016 01:56PM ssgranados wrote:
I haven't seen any recent posts on this trial drug. How is everyone doing who is taking it? I am set to start in April and would like some updates if possible please.
Feb 24, 2016 09:55AM - edited Feb 24, 2016 07:44PM by Bec65
Ssgranados, I finished last spring. I think I got the drug and had a fairly easy time on it, just mouth problems and elevated cholesterol. I'm on to my new normal now -- living life after surgery-induced menopause and taking Femara -- and am doing relatively well! Have you started? Notice anything?
Feb 26, 2016 06:49AM ssgranados wrote:
Hi Bec65! I haven't started it yet, but just reading the material they gave me on this information doesn't sound promising. There are a ton of side effects, and it seems that it didn't work well on Stage 4 patients, so they decided to give it to Stage 3? You took the everolimus for a year and now you're off and you feel okay?
Feb 26, 2016 10:33AM Bec65 wrote:
I feel relatively great! I think menopause and letrozole are giving me the most grief these days, but all side effects are entirely tolerable. I hate the weight gain, but that was going to happen anyway with menopause. I was in a BC support group meeting last week, and there was a woman there who had progressed to stage IV and was taking afinitor with good results so far. Honestly, I'd keep taking now if they'd let me. I'm so scared about recurrence, I'll do just about anything. I know live-deliciously is having a rough time with cholesterol, but I did okay. I'm getting my labs done next week and am curious to see if my cholesterol is going down. Mine was crazy low to begin with, so "going up" for me meant just over 200. I think it's important to remember that they have to tell you ALL the SEs that can happen. Also, you're constantly monitored so that if something does get too far our of whack, it can be addressed quickly.
Mar 2, 2016 04:09PM live_deliciously wrote:
hi ladies. I've been travelling a lot and have a lot coming up til first of April. Just living life to its fullest......I'm still doing well on affinitor. I'd do it all over again at this point . everything that has been an se for me is totally manageable and like Bec said if it helps prevent reoccurrence then all the better, plus I hope I'm helping others after me too. I go for blood work and check up on Mar 21. so will report what I know them. It's been taking a while to get my total results after ea appt. I feel great mostly. Just gaining weight too and my joints are sore. Likely from tomoxifen tho
Mar 30, 2016 05:00AM live_deliciously wrote:
posting update. I haven't seen all my numbers from my blood work up last week just yet but did see the Onc panel and everything looks great. In fact the Onc said my numbers are beautiful! My cholesterol is down to 221. Yay! So crestor is doing its job. Thinking of reducing my dose to half tho as I'm having pretty good joint pain in my ankles and legs. Then some leg cramps. My hand locked up on me after heavy use. Think it's all creator but who knows if it's a combination. Anyway all manageable and still hopeful I'll be able to finish the full 54 weeks of trial pill.
Mar 30, 2016 09:50AM Bec65 wrote:
Apr 29, 2016 08:41PM Rseman wrote:
It looks like a I am going to be starting the everolimus/exemestane combo after Xeloda has stopped working for me and I was just looking for any advice or heads up about what to expect. I've been on exemestane before and it never worked for me. Femara had been successful but the joint pain was unbearable and it eventually stopped working anyway.
Any input is so much appreciated. I'm not sure if there is even another thread I should be looking to.
Thanks so much,
May 1, 2016 08:56AM live_deliciously wrote:
hi rseman. I'm on the trial drug Everolimus with tomoxifen so don't have any experience with the examastene. If you go back up this thread a bit you will see that I've documented my symptoms etc for those considering or starting this combination. Feel free to PM me anytime. I'm still taking the drug with really no issues other than timing to take it with the right diet they approve to prevent nausea. Then I've had issues with high cholesterol while on the drug so I'm on crestor to control that. I've heard it's a strong combination and they need to watch us closely. So far so good for me. I go off it in Sept.
May 11, 2016 12:14AM Bec65 wrote:
Hi Rseman....sorry for my delay. I don't know about exemestane and everolimus myself, but I have a friend who is doing that combo with good results. She said she had a lot of itching for the first few months and mouth sores, but everything has calmed down and she showing no progression. I'm sure there's a board somewhere here that's a better fit for you since that's a drug combo that's being used so much now. Good luck with it!
Jun 10, 2016 01:17PM cajunqueen15 wrote:
hi ladies! I'm in the trial and almost positive I'm getting the everolimus (mouth sores, low counts, etc.). I ended up in the ER the weekend I started it but once I started taking my Arimidex and the study drugs about 12 hours apart, I haven't had another crazy reaction.
SE's - mouth sores (2), ANC dropped from 1.5 to 1.0, WBC down to 2.6. 4 rounds of antibiotics since my hysterectomy. Loss of taste. I have creaky bones and sometimes numb hands, but that could be from the Arimidex. I am CRAZY tired, having had every treatment in the book. But mentally, I feel great! I have a young brain in an old lady's body.
I plan to continue with the trial, for what it's worth. Glad I found this thread. Happy Friday!
Jun 10, 2016 09:12PM live_deliciously wrote:
welcome to our quaint little group cajun Queen. I don't take my pills together either. I take Affinitor in the morning with a light breakfast, usually fruit or cereal and then take tomoxifen at night before bed. I too am sleepy tired which I think is the tomoxifen. I started tomoxifen about 30 days before affinitor so I kinda got an idea what side effects are caused by each drug. I see my onc this Tuesday for my check up and blood work. I will have one 12 week cycle and one 6 week cycle left. Then I'll be finished with the trial drug. So far I haven't had any major issues and not expecting any. At the end of the trial I finally get my exchange surgery scheduled for Dec Yahoo. I get rid of the rocks.
Has anyone received any updates on the trial like how many participants they have now or anything else. I couldn't find any updates
I just can't believe how fast time is flying by. It will be two years in December that I was diagnosed.
Jun 10, 2016 11:59PM cajunqueen15 wrote:
Weird random question: does anyone have peeling lips so dry that no amount of water of moisturizer helps? Or is that he sudden and drastic loss of estrogen?
Also, the info says to avoid contact with body fluids while on the drug, but my doctor didn't say no sex.
As far as the numbers, I haven't heard a thing. It looks like they will stop enrolling in 4 years so those starting now should be able to finish the year even if they don't get enough participants.