Hormone Therapy with/without Afinitor (everolimus) SWOG-S1207
Comments
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I had the on-body injector. It sounded like a bomb ticking when it went off and it had a flashing light. I called it my robot. The next day, the kids would say, "Mommy, where's your robot?"
I was so happy when my lashes grew back, I didn't feel like an alien anymore.
Did anyone experience thrush on Afinitor? Yuck. I never had it during chemo.
I ran 7 miles yesterday and every mile hurt my joints. Even though I was feeling really pumped yesterday for making it through, today it just feels a never-ending cycle of treatment and side effects. Also coming up is my full skin exam, since I'm at a high risk for melanoma with BRCA2 and other forms of skin cancer with Afinitor.
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Hi everyone. i had my MO visit today with blood work. I am in the last inning of this clinical trial.
6 more weeks then i made it to 54 weeks. I still feel great overall. I only saw a few of my blood test results. Those all were in acceptable range. Sometimes it takes a while for them to post all of the results so will let you know if any areas of concern. One thing i found is I was told to fast for the blood test and have done so religiously. I had a very difficult time giving any blood today. Like at most one inch in the vial after going Into my arm and my hand. now they tell me after this being my last blood draw that it's OK to drink water b4 the draw to help hydrate me. just wanted to share that. Pls ck with ur doc first of course but to me fasting means nothing. Guess I misinterpreted. I am getting excited to have a normal breakfast again and also i get my exchange surgery on Dec 1. That surgery was delayed because of the trial pill. Grateful to all who posted here and helped me through this. Love u guys !0 -
Good report, live_deliciously! You made it through the year, and life is moving forward....woo hoo!
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hugs sisters! congrats,live, you are in the home stretch. I'm delaying surgery too. Entering my 5th month and rolling alone. Crazy tired, but doing fine. Xo
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did anyone experience extreme fatigue? It borders on being disabling.
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mostly no fatigue. Sleepy tired a lot but it's from the drugs. just had my first cold since I had surgery back in Jan 2015 but it's because we were on vacation and I didn't eat my veg , green tea, or pom juice every day like I normally do plus I hurt my knee running so my immune system was down. Just asking if you are able to eat healthy stuff ok and if that made a difference. It really does for me. Take care. I finish the drug Oct 11 , coming right up. Hugs......
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I don't remember having fatigue problems. I started back at work 4 months into the trial, and that went well. Live_deliciously -- I'm just getting over the first cold I've had since I was diagnosed three years ago! Maybe there's something to the idea that we are taking better care of ourselves now. I am much less stressed about things, have somehow gotten past the anxiety that plagued me before, I eat better, and I drink much less wine. Hmmmmmmmm......
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I'm back at work full time since before I started the trial. Still on an almost sugar free diet. Quit alcohol completely 14 months ago. Regular exercise. Just going to keep praying for improvement. The turning point was hysterectomy or the drugs that followed. Thanks ladies.Xo
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hi everyone. Well i graduated yesterday! I'm officially done with the trial. All is well. I will be monitored every 12 weeks for a year then every 6 months for 5 years. I am having recon surgery Dec 1. Was told to go off tomoxifen 2 weeks before and after. When i told her I didn't want to she reminded me tomoxifen is a risk reduction not a cure. Take care ladies. Thanks for all the support. Hugs.......
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Hi live - congrats on finishing the trial! Why no tamox before and after surgery?
I'm still plugging along. Getting mouth blisters on and off and the roof of my mouth felt like somebody had run sandpaper over it the other day, but my WBC has rebounded into the normal range and blood work looks good.
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cajunqueen. That's good to hear you are coping well. . I hope the mouth sores subside. I never had any. Just the corners of my mouth cracked a lot and was hard to heal . I understand taking tomoxifen puts us at risk for blood clots so they want us off it for 2 weeks before and 2 after surgery. I had heard that from others now I was told first hand by Onc
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checking in. I'm doing well. I definitely noticed some changes after being off the trial drug. My nails are finally growing in normal and getting some strength to them. My sense of smell and taste are normal again. The swelling in my feet and ankles are mostly gone. I had recon surgery Dec 1 and getting most of my strength back. I'm feeling fairly normal again.
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I'm so glad things are getting back to 'normal' for you live_deliciously!
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hiya, ladies! oh my gosh, it's been so long. i'm rockin' on with the trial, end date next month! I had a second clean PET scan, so I will praise the Lord for any and all good news I can get. Hope you ladies are feeling well. Xo!
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Rock it Cajun queen! I'm doing great too. I am just flying back (actually on the plane) from a 2 week vacation with my son. We went to Morocco and it was a trip of a lifetime. Just living life to the fullest. Keep us posted so we can celebrate the end of the trial for you too.
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Morocco is on my bucket list. I have been fascinated by Marrakesh ever since I watched Alfred Hitchcock's "The Man Who Knew Too Much" as a child.
Aaaaaaand.... I am done! I took my last dose on Friday! Anxiety is mounting a little bit as I am now done to just Arimidex and Prolia, but I will trust God to carry me through.
Hope all you ladies are doing well! Xo.
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well it's official that you joined our little club of completing the trial. Congrats. I know I feel like i lost some protection not being on the drug any longer. My nails and tastebuds are back to normal now . Keep in touch
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Me too! I said to my MO that since things seemed to be okay (clean PET, tumor markers fine, no weird pain), why can't I just keep taking it? Why fix it if it ain't broken? He said something about the side effects and weighing that against the unknown benefit, but I really just want to keep taking it. My breast cancer was so aggressive that any SE or secondary cancers pale in comparison to the likelihood of recurrence. I will be interested to see if my nails rebound. My taste buds still seem a little dull but the nauseous feeling that I had pretty much all day is GONE! Best wishes to you.
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Took my last dose of everolimus (MO was pretty sure I was not on placebo) 2 days ago. After 54 weeks on it, it's both exhilarating and scarey to be off. I'm looking forward to (hopefully) getting some energy back and growing fingernails that don't snap off, but I also feel like I've lost one of the tools in my fighting cancer bag. 😒
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hi papasaka. Welcome to our little group. How did you do on the trial? It took a while but my taste buds and nails are back to normal. I can totally relate about losing protection. We were never given any guarantees but somehow with this disease anything that offers a glimmer of hope feels like a shield. I'm hearing about the ibrance trial similar to this everolimus trial and was thinking maybe i would have rather been involved in that trial. I'm not sure why I guess it seems like more gals are on ibrance for longer. Seems it works better.
Has anyone heard any feedback or update about this afinitor swog trial?
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I'd have rather been on the Ibrance trial too, but never heard about it. When I asked my MO in Feb of last year if there were any clinical trials I could get involved in he said, "no." I knew that was bulls***, so I found the SWOG trial on my own. It was in a city 3 hours away, but oh well. I'm still glad to have done something extra.
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No updates on the trial yet. Some centers are still enrolling participants. It seems it will be some time before we hear anything. I would still prefer to keep taking it, but since that isn't an option, I'm trying to move forward.
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Were the PALOMA trials open to earlier stage BC patients?
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My MO has put me in for this clinical trial recently
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good deal. Keep us posted and let me know if you need anything. I am almost done with quarterly monitoring from the MO then will be kicked to every 6 month check ups.
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I hope it's going well DodgersGirl! So long that we have to wait for any results from this trial...
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canjunqueen15-- I am under going rads right now. Not on AI yet. I think I have to be 3 weeks after rads before I would be eligible for this trial
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Dodgers, that sounds about right. I had my hysterectomy about a month after finishing radiation, then started the AI and trial a week or two afterwards.
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I was on this trial and unfortunately was just diagnosed with a liver met. We were sure I was getting the drug, we had to go half strength due to mouth ulcerations that made eating difficult. I had wanted to go on the palbo trial but had just timed out.
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Hi AlI
I just started this trial 3 weeks ago. So far the only thing that's amiss are my blood sugar levels (very high)and itchy eyes. Bur no mouth sores or fatigue. Going to get diabetes meds adjusted so they don't make me quit.
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