Hormone Therapy with/without Afinitor (everolimus) SWOG-S1207
Comments
-
cindysmom, I meet with MO Monday to talk about this trial. Can you tell me what the trial pays for in regards to tests and doctor visits?
0 -
KPW3– so sorry you had progression. I hope you respond well to your next treatment.
0 -
DodgersGirl-As far as I know it only pays for the drug everything else is considered normal care and they bill it to your insurance. Your responsible for anything they don't cover (insurance).
0 -
cindysmom, did you talk with your insurance before going on the study? If you did, wondering what kind of info did they ask you for?
Do you know if there are any CTs or scans done over the year for the clinical trial?
Sorry for all the questions.... just trying to wrap my head around all of this.
Thank you!!
0 -
DodgersGirl, I didn't check with my insurance before hand....the study coordinator might have. I didn't have to have any additional scans, there were regular labs done, which I think my insurance covered-my cholesterol went up quite a bit, but did return to normal after the end of the trial (54 weeks is what I remember). I felt much better when the study was over...I had quite a bit of fatigue with the drug, but didn't realize how much until I was off the med. I think you cover any expenses like travel....
0 -
KWP3– thank you for sharing your experien
0 -
DodgersGirl: I didn't check with my insurance company either, I know there are lots of labs and I'm scheduled for a PET scan in February. The only real problem I have is my blood sugar levels. Sometimes extra tired, sometimes kinda feel blah.
0 -
cindysmom— will keep you in my prayers for good PET results in February. Hope the blood sugar spikes go down after the trial.
0 -
cindysmom- had meeting with clinical trial nurse this week. Asked about glucose rises due to Everolimus. She said it is a know side effect and that they have a range you A1C needs to fall in so that you can continue with the trial. I don’t have the time can’t numbers but thought she said A1C had to be below 7.x.
I have the paperwork to review. I think I will do this trial even though a year of chemo pills doesn’t sound fun.
0 -
DogersGirl: Your right a1c needs to be 7 or less, which it normally is but it just goes high with that medicine. I added a new drug to the rest of my meds hoping to get it down. I had to stop the Afintor until its under control again, I want to stay on this trial since I'm pretty sure I actually got the real drug. Outside of blood sugar levels I'm not having any other side effects. It sure beat IV chemo. Good luck if you decide to go for it, I hope all you se are minimal.
0 -
cindysmom— hope you get to continue with the trial.
I think I will sign up later this month. I have an appt with a surgeon next week. Need to see if clinical trial is a problem with a pending surgery
0 -
Hi ladies! I’m so glad to find this thread and to see that it’s still somewhat active! I started on the Everolimus trial in early December. I knew right away I had the drug because the SEs were unreal. I got horrible mouth sores (my MO saw them and said “well, so much for the placebo!”) that were so bad we stopped the drug for about two weeks over Christmas. When I started back up I used the mouth wash which helped but the fatigue was debilitating. I also lost almost 10 pounds in a month because I have found the drug to be an appetite suppressant as well. Anyway I ended up having a breakdown in my oncologists office because I basically couldn’t function I was so tired and they gave me a weeklong break from the drug and then dropped me down to a half dose (5 mg). So far the reduced dose has been much more manageable.
I’m so glad to connect with others on this drug and it was SO helpful to read the experiences of those who are already done
0 -
SkiChick86– glad to see there are others on this trial. I will have a blood test to make sure my sugars are low enough to start the trial. So if all goes well, I should start this spring. I see the research nurse in a couple of weeks to sign the paperwork. I am concerned about the mouth sores. Was pleased to see you were able to continue on the trial with a lesser dose. That’s encouraging to me
0 -
Dodgers - they were happy to lower the dose which made a HUGE difference. And not everyone gets the mouth sores! My oncologist said she’s prescribed the drug to stage IV patients who she knows are getting the actual drug (not part of a trial) and they haven’t had any side effects.
0 -
SkiChick86–thanks for the update. I talked to the research nurse this week. Will take a blood test after surgery to make sure I qualify and will then sign up for the trial.
0 -
hi everyone. Glad to see this thread has helped others. Im not on here quite as often as I used to be as I'm trying to lead my normal. But I still immensely care about all others in this same trial and will continue to pop in to give an update. Right after I got released to 6 month visits from 3 month visits with my onc I had my annual pelvic ultra sound to check my uterus to make sure its not thickening. This year it changed significantly as my lining went from 3mm to 12 mm. They flag anything over 10mm as suspect. I've been wintering away in the warm weather and head back to the states end of march. First of April I go to the gyno to see what they want to do about it. They are sure its from the tamoxifen. I was told there is a 1% chance of tomixifen causing uterus cancer. It may mean taking out the girly parts and switching to an ai. Will post back what they find.
Otherwise all else is fine. Full recovery from the the trial drug and it will be 4 years since diagnosis the end of this year. Time is flying by. Love to all.
0 -
hi live - I had all my lady parts removed, shoot me a message if you have any questions! X
0 -
Signed the paperwork today for this study. Should know in the next week if my blood work was good enough to be accepted.
0 -
Blood work ok to start the clinical trial. Pick up the meds on Wednesday
0 -
started the trial this morning. Everolimus or placebo? Which will it be??
0 -
Dodgers Girl: You'll know soon! Good Luck and easy side effects.
0 -
cindysmom— thanks!!
0 -
Been taking my trial meds now for 3 weeks and have a few mouth sores developing. So far, they are tolerable.
Developed a bit of a dry cough 10 days ago or so. Have some leg cramps and back pain but nothing really awful.
Three weeks down and 51 more to go.
0 -
You got this, Dodgers!!!
0 -
cajunqueen15– thanks. I think I will be ok if the rest of the trial continues as what I have so far. Very doable after a month on the trial
0 -
hi everyone I haven't posted here for a while. I wanted to give an update that I had my check for my thickened uterus lining. I had a biopsy done and it all came back negative the doctor suggested several things for me for weight loss,preventing return of cancer Etc. He suggested intermittent fasting and time restricted diet and told me to look it up online. he was a gynecologist and I ran what he said by my oncologist and learned that she had just gone on the same program that's called fat for fuel by dr. McCullough. she said it would be safe for me to be on as well. So i did it and I've been on it for about 3 weeks now and it has really made a huge difference for me.
0 -
live_deliciously— woot woot on clear biopsy!!!
0 -
just had my first blood work since starting SWOG Trial. I haven’t seen the full report yet as it isn’t on my patient portal yet. MOs office called yesterday to tell me my cholesterol numbers went down slightly and blood sugar was elevated. (I started taking a cholesterol lowering non prescription med just before starting this trial so thinking that is why my numbers were slightly lower).
I had have 2 mouth sores and many occasions of my mouth feeling sore but no sores appearing. Don’t know if that is because I am using a prescribed mouthwash or because I am on the placebo???
My throat has been sore for weeks. No fever just spots like the Everolimus is causing them where the mouth wash doesn’t reach? MO prescribed something to swallow to help with sore throat.
I am feeling tired but not sure it’s Everolimus related.
Sinuses are dry like when on chemo. Dry cough, too.
Overall, I don’t see an issue with making it thru this trial if these are the side effects to live through
0 -
have 2 active mouth sores right now. Using the special mouthwash and Orajel
Otherwise, symptoms remain stable—. Dry sinuses, occasional night sweats, mouth sores, fatigue.
0 -
Dodgers girl. Sounds like you are well on your way to the end of the trial. Best of luck.
0
