Afinitor/Aromasin
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inky, that is great news for you! Where were the mets when initially diagnosed with stage IV bc? I'm thinking the cancer had not gone to any of your organs?0 -
I was originally diagnosed with a solitary met to the sternum. But it took forever for me to be properly diagnosed, since at first the doctors were sure that I had liver mets--it took several scans and biopsies for them to determine that I had two different types of benign lesions in that organ but nothing malignant. So I've been incredibly lucky so far in that there's been no organ involvement yet--just bone (now apparently healed) and lymph nodes. I never thought I'd come this close to NED, and before my scans last month I was fearing the worst. Right now I'm feeling incredibly grateful for all the doctors, nurses, and other healthcare professionals who have helped me over the past two and a half years. And for all its pain-in-the-ass SEs, I'm also incredibly grateful for the A/A combo.
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Your last line says it all, Inky. So true.
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Hi Everyone, this is my first post. I have been reading and gleaning information from this site since my initial diagnosis 6 years ago with Stage III A breast cancer. This past October after almost one year of not being able to walk properly, I was diagnosed with Stage 4 mets to bones (spine and pelvis primarily) and then at the next scan mets to liver. I started on Faslodex & Xgeva and then switched three months ago to the A/A combo. I just received my scan results today and all liver mets have reduced in size about 25%. Bones are stable and healing after radiation. So there is good news that this combo can work well! And I am eternally grateful to be stable and reducing and able to tolerate this drug. I am switching back to 5 mg daily after developing hand and foot etc.
What really threw me off kilter today was the overall survival stat for Afinitor at approximately three years, which I had read but not really processed. I really thought that the outlook would be brighter if the drug worked well. Do you think that this reflects OS for mets to liver and bone? I know that there is never an expiry date for anyone but I am really upset today instead of celebrating ;(
I appreciate you lending an ear.
Toronto_012
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First of all Toronto, please be happy. Look how well things are working with this medicine! And I'm sure your next scans will be even better, you'll see. So celebrate this day
I'm not sure about your question about 'survival rate' with Afinitor - and someone please correct me if I'm wrong - but the average time that it WORKS is what they put in the literature, not your survival rate. And fyi, the average time Afinitor works is actually 20 months as I was just skimming the literature today. I'm not sure where the 3 yrs came from...but when Afinitor stops working, you go on to something else. I hope I helped (and I hope I'm correct!)
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Anyone have rising tumor markers on Afinitor? I know they can rise initially on chemo, maybe the same on Afinitor. Went from 27 to 40 in the last month or so. Not Earth shattering....I guess we will see next month if it's a trend.
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romansma, tumor death can cause them to spike then go down. I have been on AA for 14 days and my tumor makers went from 2410 to 2420? Mine are all over the place?
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Funny my MO doesn't believe in markers. He runs a CBC and a metabolic panel and that's it. My hemoglobin has improved and that's all he goes on. Frankly I wonder about the afinitor and the edema it causes and whether it has any heart effects. My heart rate has just been all over the map hovering at 140 most of the evening, with that fluttering and quivering people describe with Atrial fibrillation. I'm sure that's what it is. Feels weird. As long it stays under 150 things should be good. Usually things like this stop, not tonight, not yet anyway. Lots of conflicts with teens.. stress find us no matter where we are! I will skip afinitor tonight.
Wish you all success with AA and SE.
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Rosevalley - I am worried about your heart rate - resting heart rate should be around 70-something - of course it can go up when panicked but 140 is too high especially sustained over a number of hours - I have had Atrial Fibrillation for most of my life and when it flips out - which it has only done twice my heart rate rises above 90 - get thee to a doctor or to emerg - it won't hurt to get it checked out, it could be the Aromasin doing it.
Sending a hug, S.
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Sandy- The severe anemia I had December through March damaged my hear making it work harder and making the muscle weaker. It was not at all unusual to have my resting heart rate in the 110- 120s. With any activity it would soar up to 130-140. Now that my hemoglobin is more normal 10.8 giving oxygen to the muscle, my heart rate sits around 95-100 resting. I checked it this am and it was 110. I have no sensation of the fluttering and quivering butterfly feelings of yesterday. I'm just one of those lucky folks who go in and out of this; Afib is common. Considering everything I have been through I'm lucky it beats. I'll ask the MO if AA has anything to do with it. Doubt he'll have an answer, not one he would share anyway.
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Ah yes, when I last had the heartbeat of 177 it was severe anemia time for me too but I still wish you'd get it checked (so I'll feel better!!) I hate that fluttery feeling but I've had it for 60 odd years so I am quite used to it now (I should be). The MO of course will tell you that A/A has nothing to do with it but my cardio was the one who knew and this time around my PCP is more than aware of the se's from all cancer meds and that's why she is a treasure! Hope you have a more restful evening than last. Hugs, S.
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I have seen lots of cardiologists and they don't do much. I even went years ago with my heart banging around to urgent care. I had 2 EKGs done , one said can't rule out "anterior MI" and the other said "left axis shift" like always. So they sent me to the ER and their EKG said Left Fasicular block. I had very slightly elevated CKmb and after fluids and O2 I felt pretty good. So they sent me home after 4 hours with the EKG to give to my cardiologist. On the top of the EKG was written "no signs of extending MI." I didn't have an MI and my EKG is clear of the Fasicular block, except for the left axis shift. They would have known that, had they done a second EKG like urgent care did. You know I had absolutely zero pain. So fat lot of good going to the ER did me. I kind of feel that interventions frequently make me feel worse not better. I have no interest in ever going to the ER. I'm cured of that route. I have a fine guardian angel! All the close calls I have had and I always skate right through. Luckily today I seem to be pretty good, but I didn't take the afinitor last night either.
So you have had Afib and they were never able to convert you out of it? Most MO's never fess up that the SE are from the drugs. Maybe it's not to "plant ideas" into your head so that you get a side effect you didn't have until they mentioned it. My PCP just gives me grief. I only go in when I have to, you are lucky you like your PCP. I'm only lucky when I stay OUT of doctors offices. Don't go looking for trouble it will find you.
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You are totally right, I feel much better today and thanks for the 20 months information.I think I may have had an anxiety build up.
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I have been on A/A siince august of last year... the AA made me a type 1 diabetic, i had minimum small mouth sores...however without trying I have lost 69 lbs, which was good BUT my taste buds are shot I hate the taste of food .. My energy was zapped , only to find out i had a stomach bleed, but until 3 months ago no issues at all............4weeks ago a cat scan showed what looked like scar tiisu in one of my lungs so after a bronchosomy they decided it was most likely from the affinator. so in 2 weeks I will begin fasodex shots ! praying things will improve
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Where do you get your meds?
Just came from MO and have a question or two. Recent scan showed current liver tumors increased in size plus new tumors in liver. Lymph nodes which had gotten smaller are now larger and there is a new bone met so we will add Afinitor to the mix. Question is Dr said it will be mailed to me from a specialty pharmacy. So what's wrong with CVS or Walgreens. Where do you get your med?
I also read about people wrapping the pill in marshmallow cream - is that to keep it from touching the inside of mouth and throat?
These may not be very important questions but the chemo nurse ( who gave me my Xgeva inj.) was not familiar with the drug.
Thanks
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Regular pharmacys don't carry Afinitor, so it comes thru the mail from a specialty pharmacy. The drug costs about $10k for a 28 day supply, so maybe that's the reason for the specialty pharmacy.
Yes, the theory in burying the pill in marshmallow cream is to not let it have contact with your mouth. There is no proof that this works. I put mine in a spoonful of yogurt. I also take probiotics as an added precaution.
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Hi Crone, I am so sorry to hear about your progression.
I have taken both the 5 and 10 mg capsules of affinitor and I just down them with a lot of water and gargle after. At first my tongue would sting where the pill landed on it so I try and place it on opposite sides. I have not had any mouth sores yet.
Today is my first day back on the 5 mg dose and I notice that my veins are kind of popping out more and look more blue,and I have a bad migraine. All par for the course I guess. As long as it keeps on working it will be worth it. I hope you have no problems and the drug works well for you for a long time!
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Wow my pharmacy charges 12,200 for a carton. Thank goodness I don't pay that. I put the pills in applesauce or yogurt. Drink 7 oz water. I could never down marshmallow fluff..yuck.
Sorry about the progression and difficulties.
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I had my appoint with my MO yesterday. No more Afinitor for me! I've had such bad stomach pain and abdominal cramping in the last 6 weeks. Since I have mets in my stomach and abdomen, I thought the pain was due to the mets. My MO said It could be from the Afinitor. Some of his other patients have had stomach problems with it. Besides being excruciatingly fatigued, I feel lightheaded. On the up side I've lost about 25 lbs.
As far as the Afinitor working for me, my TM's have gone up and CT showed some progression. It's hard to know if I wouldn't be worse if I had not taken Afinitor.
We got a second opinion at NIH last week. The team we talked to said there is hardly a wrong choice since they really don't know what will work with each patient, but that hormonal inhibitors seemed to work better than chemo for ILC. They all thought that Faslodex would be a reasonable next step. My MO talked to one of them on the phone, so I start on Faslodex next week and continue on Aromasin.
I'm getting a CT and TM's next week just so we have a starting point. I'll let you know the results.
I'm so happy for all of you who are getting help from the A/A combo, some without many side effects. It has been my first treatment since dx with mets.
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Sorry to hear about your progression, Danishgirl. I think you will find Faslodex much easier to handle. I hope it works for you for a loooooooong time!
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Good Morning, I was just wondering how everyone who is taking the A/A combo is feeling?
If you have been on the drugs for a few months are symptoms and side effects slowly improving?
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I'm a few months in now. Had a small mouth sore this week, but nothing awful. Skin and nail issues seem to be calming down. My biggest, ongoing, issue is major fatigue and weakness. That is not letting up.
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That's very similar to what I'm experiencing..... had terrible rashes, itching, burning, headaches, all that at beginning and now things seem to be getting better. I did have an experience yesterday though....was in the sun too long and got a little sun burnt on face and neck and when I went to bed my face and neck were so hot I could have fried an egg on them! Hat and loads of SPF 60 today. I am also still taking something for nausea and gas. But hopefully, I can tolerate this one.
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After some recent progression to my bone mets after four years on Aromasin, my onc wants me to stop the Aromasin and switch to Arimedix (anastrozole) plus Afinitor. I know Afinitor was only studied and approved with Aromasin after failure on Arimedix (or Femara, I think). After reading all the side effects, plus learning that because I am now on a Medicare Advantage plan the copay would be around $2500/month, capping out at $9000 for a year under the catastrophic coverage provision, I have decided not to start the Afinitor right now. I did switch to the Arimedix. The copay amount is not a huge problem for me, luckily, but I just don't think I need to go right to the Afinitor after only "failing" Tamoxifen and Aromasin. There should be options other than a drug that costs over $120,000/year, especially if I would be taking it essentially off label. I would probably feel differently if the progression had been to my liver, for example. I will be seeing my onc in a couple weeks to talk about this. My plan would be Arimedix for three months, then scan to see what is going on.
Is anyone else taking Afinitor with Arimedix (anastrozole)? Is it working? Thanks!
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GrandhillMom - My onc has me taking afinitor every other day, which cuts the co-pay in half. It appears to be working. (My MO doesn't do markers or anything to really tell if it's working, he just checks blood counts to see if my anemia has improved. Frankly I have wondered if just the aromasin would do the trick. No way to tell in my case.) There have been other women who also take afinitor at staggered times because they can't tolerate it at 10mg a day. I take 10mg every other day. There are lots of women taking the afinitor with faslodex or arimidex.. mix and match. Good luck. If you can get away with just taking the arimidex and can tolerate the SE of arimidex, then it makes sense to just do that. Save the big expensive guns for later.
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hi Grandhillmom, have you discussed Faslodex with your MO, it could also be an option but is not cheap either. However, I found it to be easy to tolerate.
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Tomorrow is my first day to take Afinitor. Hoping ( with all fingers and toes crossed) for no side effects..Had to wait until a liver biopsy was done today and I had a meeting with the Nurse Educator to hear about all the side effects. After reading all the helpful information here, I could have instructed her.
We just sold our house and have to find a place to live, pack and move in the next six weeks so I have no time for not feeling well. So I will keep reading this thread for all the helpful information.. Thank you to all of you who have shared your experiences which helps all of us.
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crone I hope u have a smooth sailing with A/A treatment. It has been kind to me with exception with a couple of hiccups that was not so bad to handle. Lots of luck with the move.
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Hi ladies,
I have been on the A/A combo for a year now. It worked very well and got me to NED! My tumor markers are rising now and I am having another PET next week. If the cancer is growing, our (my onc and I) plan is to switch to Faslodex and Afinitor.
I had horrible mouth sores the first few months. So bad that I took Lortab a couple times at night. Over time, I found some things that helped. I bought empty gelatin caps to put the Afinitor in before I took it. Mugard is a wonderful, healing prescription mouthwash that literally helps heal the mouthsores! Unfortunately, it is VERY expensive and most insurances won't cover. The most helpful thing for me was to take a steroid (Prednisone) tablet when I could feel the sores starting. My onc said I could take one a day for no more than 5 days at a time. Then, I have to take at least a 5 day break from the steroids. ( My onc said otherwise the steroids can cause lots of other problems). I have gained some weight and tried to stop the steroids, but the mouth sores got bad again. So, now I just take them when I need them and try to limit to as few days as I can to get them to start healing. Also, a steroid rinse is somewhat helpful.
The A/A combo also gave me migraines. Sometimes 3 Advil will take the edge off. Also, Excedrine migraine works sometimes (it has caffeine so I save for the morning). Imitrex has been a miracle drug for me! I save it for the BAD migraines because I understand if you take it too frequently, it loses some effectiveness. But, it completely takes the pain migraine symptoms away!
At about the 9 month mark, I started to have very high resting heart rate and high blood pressure. Saw a cardiologist to be safe and am now on a half a beta blocker, which is helping. :0)
I work full time and have felt good overall on this treatment! I am a teacher so I'm on summer break right now! (yay!) I did have some issues with fatigue. Caffeine usually did the trick, but not always.I've had a long run on this treatment. Really hope I can stay on it longer, but think it may be time to join the "fanny pack" (Faslodex) girls. I'm thankful it worked as well as it did.
Sorry for the rambling... just wanted to share some things that helped me.
Julie
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On approx. month 9, my resting heart rate and blood pressure went very high on the A/A combo. My onc sent me to cardiologist. Cardio doc said the meds can do that. It isn't safe for it to be so high for long. I am taking a beta blocker now and it is better...it allowed me to stay on the meds longer so I am thankful!
Julie
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