Afinitor/Aromasin
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Magic mouthwash and Miracle mouthwash are kitchen sink formulations for mouth issues. Magic mouthwash generally is a combo of benedryl, maalox and lidocaine. Miracle mouthwash is an antifungal, steroid and antibiotic. There are bunches of formulations for both. I had a dentist who had me on a super mix of about 6 things when I was a kid and had all kinds of mouth sores from unknown sources. Turned out that they were caused by food allergies. I currently have bottles of both magic and miracle mouthwash. I'm loaded for bear, but haven't gotten any sores yet.
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I've been on the A/A combo since last August. My tumor markers (NOT thr CA-125, which is very unreliable for me, but the Circulating Tumor Assay, which is extremely reliable in my case) were at something like 185. Within a month, it had dropped to half that, then the following month halved again. Anything under 5 is considered normal. I've spent the last 4-5 months going up and down from 6 to 0 to 2 and this past month back up to 6. My onc waits until there are 2 months of increases before considering changing drugs.
A question for some of you gals...my onc is usually very receptive to my ideas and this forum (he often asks me to "see what the ladies on your internet site have to say" about various things), but when I asked him why, if this combo stops working, can't I try another AI with afinitor, he said nope. He said the studies all were done with aromasin. I've read here of some of you taking afinitor with femara or faslodex, etc...are you who are doing a different AI seeing improvement?
As to side effects, the mouth sores only lasted a few weeks for me. Haven't had them since. However, I have had high blood pressure and diabetes as a result of the afinitor, which I think is very unfair!
One last thing..I get my afinitor from Curascript. I had NO idea (nobody told me) that I could get 3 months' supply at once. Here I've been ordering every 28 days and stressing about remembering, and then i find that my insurance will cover 90 days for mail-order prescriptions! So you might want to ask about that.
Lulubee, it was nice to hear from you. After reading all these posts, I was beginning to wonder if there were any "old hats" here...everyone is new to it! Nice to know that it has been working for a longer time for some of us. I just hope all you newbies get a long run of it.
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I use ACT Sensitive mouthwash; it has no alcohol. I buy it at Target and CVS.
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I was supposed to start on the aromasin today. Last night I had the worst sore throat, and was blaming it on the afinitor, but when I got up this morning, I knew it was not that. My granddaughter (who I keep) had croup last week with a bad cough and sore throat. So I called the oncologist this morning, and they told me to hold off on both until Monday, and to call them back then. So I guess I'll be starting next week. Praying for "pcrandall" results!
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Granna, feel better soon!
Now, this is the weirdest SE I've ever had. Since I'm on the A/A combo my airborne allergies (pollen) is BETTER! Through the spring and summer (usually the most difficult time) I've had hardly any sniffling, sneezing, asthma, etc. No complaints!
Leah
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That does seem odd, Leah! But at least its one positive side effect. Hope thatt continues. Allergies can be so miserable.
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DAY 4 on A/A and no side effects yet.... however been swishing with boire'ne oral rinse 4 x a day and began taking a pro-biotic....
got aletter from insurance good for one year for scripts however it was for the 5mg..and I will beon 10 after 2 weeks....
praying this stuff works and had minimual side effects for me ..... fingers crossed
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I was stage IV from the get-go. Mets in bones, liver, and my right eye-of all places! Femara was my first treatment and I had no SEs to speak of. Onc called me "stable" but my TM and scans were not improving. I've been on A/A for 2 months now. A few mouth sores in the beginning. But luckily they subsided. My biggest problem now is fatigue with a billboard-sized F. I had my monthly Zometa infusion 2 weeks ago. It usually has me down for a day or two. But this time I've been pretty much in bed for the past 2 weeks. Today I was up for about 2 hours -then felt I hit the wall. Back in bed again. I'm a little anemic-but not critical to warrant a transfusion. All other blood tests within tolerable ranges. Anyone else have major fatigue issues on A/A? ANy suggestions?
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I say take a nap! I am also on A/A and am tired am also taking rads right now so don't know what it really from. So I take a nap. Leg hurts to much to work so naps are my favorite thing right now. Use to be it was food. Now that isn't so good either. Enjoy a nap and good luck.
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Thanks, raro, for the info on a 3-month supply of Affinitor from Curascript. I am reordering tomorrow, and I will call my insurance company today to see if they will approve a 3-month supply for me.
Redroan, you are right about naps!
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Anyone having any problems with finger tip pain or numbness??? I had CIPN from chemo that has taken over 2 years to get from painful to just odd feeling, and this feels suspiciously like the beginning of the CIPN.
Am having a tough day - on the beach with family, feeling like garbage with nausea & fatigue. Trying to be upbeat, having a difficult time with my mom telling me she wants to get a little meat onto my bones, and the food she pushes on me just makes me all the more queasy. Have not had this much nausea for a long time, probably since just beginning the afinitor about 6 months ago, and the fatigue is worse today (but that might be from overdoing yesterday). Also dealing with LE that is pretty miserable as I can't spend time playing on the beach without bandages or sleeve (I do sneak a walk in each morning before the sun gets hot, just me in shorts & t-shirt, then come back and do MLD for an hour, then back into bandages).
Babs, I think Redroan's suggestion of nap is probably the best for fatigue. I know I am becoming more anemic with each MO visit, and am unwilling to do transfusion, so I wonder what is next? My mom thinks I just need to eat meat or take iron tablets - I tell her that won't help the bone marrow manufacture any more cells - it already has the materials, it just isn't working! Seeing the MO on Tuesday when I get back from vacation, maybe things will be better after a nap today!0 -
Called insurance company this morning; I can only order a 28-day supply of Afinitor at a time. Oh, well.
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just got news my insurance company will pay for Afinator withonly a 20.00 co pay, the aromasin is generic brand so i pay 5.00 and they will also pay for Mygard for mouth sores 35.00 deductable for 6 bottles ..
whew Now if I can only tolerate it and continue working so I have insurance
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Well I have been on a/a treatment almost a month. I am so happy I am on this drug. It seems like all the pain went away. Don't get me wrong I have a few mouth sours and a rash all over my body but I could live with that. It's better than back pain. I am so grateful for this medicine. I really do think its a great drug. Know I pray it's doing its job and my markers are going down.
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Update: today is a much better day. Post from yesterday just a little speed bump. The nap plus sleeping in this am made a world of difference. Nausea much better, less fatigue and better mental attitude. Rest is so important !
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Hi,
I have been on A/A since December (2012) and had to reduce the dose from 10 mg to 5 mg in April 2013 due to S/E. I too have had huge fatigue. When I started on it in December, I was EXHAUSTED. I stayed off of it for about a month (mid-March to mid-April) before reducing the dose to 5 mg in April. When I started on the 5 mg dose, I was EXHAUSTED again but eventually the fatigue improved. My fatigue did not improve on the 10 mg dose, but did on 5 mg, but for the first week or so each time I felt so tired. I also still work full time but don't feel that contributes to my overwhelming exhaustion.
Hope this helps.
Liz
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Hi,
I take my A/A every morning after I eat breakfast. I just can't be consistent with the time I take it at night. I've never coated the pill with anything. I just drink it with a half glass of OJ and a cup of coffee after I eat cereal and milk, or whatever I have for breakfast. I can't imagine taking it on an empty stomach. I have nausea as it is, and I think taking Aromasin on an empty stomach would put me over the edge. Hope this helps.
Liz
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well 7 days on A/A 5 mg... no side effects yet, a little headache but not much .. will be uping the dose to 10 in another week ....
fingers crossed that it work s ... only the second treat i have been on but femara did great for almost 2 years ..
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Hi,
Does anyone know if the diabetes that starts while on A/A go away or improve when you switch to something else (stop A/A)? If you know of that, or know anyone who had that experience, can you please post?
Thanks!Liz
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Thanks Liz. I go to my monthly onc appt on Monday. I'll ask about reducing to 5 mg to see if my fatigue improves.
Babs0 -
Hi, I am due to start Aromasin/affinitor in a few weeks and someone said it causes hair loss, is this true? I am bald now after finishing abraxane and was so excited thinking my hair ill grow back. Any advice greatly received. Love Gail
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Linda-n3, is CIPN neuropathy? Just curious. I am starting A/A next week, and was excited when I found out I wasn't going to receive infused chemotherapy, because I thought I probably wouldn't lose my hair. Now Gail's question has me wondering......hope whoever told her that was wrong!!
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Rosie, just read your post. I was wondering if your onc suggested putting you on a different hormone blocker before you were put you on an oral chemo + aromatase inhibitor. After I became resistant to Tamoxofin, I started Faslodex, a once a month intramuscle injection. I tolerate it really well, except for discomfort at the site of injection. You can check it out on the Faslodex subject thread. I am still on Faslodex plus A & A. It is working - the boost A/A gives Faslodex has really stopped any cancer progression.
I ask because it is usual to do more hormone treatment before going to the oral chemo route. Best wishes and a happy life.
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A lot of activity on the board; lots of concerns, questions and tips which will help all of us know we are not alone.
I went in yesterday for my Faslodex injection which always puts me in low gear for the day. It shouldn't - the castor oil medium the drug comes in - provides a steady supply for a month but I always feel like I've just had my energy stripped. The A/A combination has already lowered my energy so I really enjoy an ice pack alternating with a heated pad in a comfortable chair for the day. Watched a silly movie which made me laugh so had a good day!
My numbers are really good with the triple meds of Faslodex + A/A. I have a large (2" diameter) rash on my arm/inside elbow where I get my blood draws but the tech had no problem getting the samples she needed. I was hoping rashes were one side effect I wouldn't get, but I had the one on my arm, a raised bump on my face and also scalp. The bumps went away in a few days, but this rash has been here for two weeks. I have put a non-steroidal oinment on it and also take Benadryl at night, but it is persistent. I hope this flare up is the last of it!
I also had my dental cleaning this week and told the hygienist my gums might be tender because of the Afinitor. She was able to do her usual cleaning without any problems and said the Biotene mouth wash I use has helped because the ingredient in it helps keep bacteria from forming. I started using it because of dry mouth and I want to suggest using this over the counter mouth wash to prevent mouth sores.
I was interested in the CuraScript thread; I can get mine through the specialty pharmacy at my cancer center, but only a 28 day supply (of course - 28 days equals a month, right?!!) but would really like to get a 3 month supply and not have the worry of running out. This last month, it came on the day after I took my last dose and I don't like cutting it that close. When I called to complain they said they will send it out earlier this month. From what I can understand, sometimes CuraScript covers 3 months and other times it doesn't. I will switch to CuraScript if I can get it for 3 months.
Wishing you all a wonderful week and many blessings. I am thankful for the little (and big things!) in life. I appreciate life so much more and get a grin out of all the amazing things/events around me.
XOXOXO
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Hi Ladies
I start A/A as soon as it is approved by insurance and then gets here. I am not going to lie. I am scared silly after reading this thread. I am also excited because there seems to be pretty much success with this combo.
Thank you for all of your honest comments and suggestions.
I have three spots on my lungs:(:.
Nancy0 -
My ONC did not switch me to another al ..originally she said the afinator would be added to the famara but then when I saw her she just had me start on the A/A... you know after you get home your brain works and you think of things to ask .... I see the nurse practioner tuesday and will ask her my questions and I see the onc on the 19th..but start the 10 mg afinator thursday of this week..
ONC had orginally said the A/A would be the big guns after we had exhausted all the als but I haveonly been on femara and had almost 2 years NED >>>. progression to my arm,hip sternum and spine but nothing hugs ? so I DONT KNOW
so far after 11 days I am exhausted (but that is like always) lol and really dry mouth and mild headaches. but thats it , hoping the 10 mg dose doesn't do anything else..
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Nbare1952, I was petrified too after reading this thread. I had just about made up my mind to not look at it any more. I have been on Afinitor for about 2 weeks, and the. Aromasin for one week, and have done great! I just decided to get my attitude straight and my mojo on, and so far so good. Good luck!
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Thanks Granna. I usually do not pay too much attention to the possible side effects. I do not know what made me read this thread. I am glad to have all the tips and knowledge so I cannot say I am sorry. Like you I am trying to get a better mindset.
I hope things continue to go well for you and all of us!
Although I am so happy to have this thread and all of the valuable information I am so hoping to be one of the lucky ones. I wish only the best for all of us. Thank you to all who have posted the good the bad and the ugly. I admire you all so much.
A special thanks to Chickadee. Thanks to you I will be especially careful about breathing issues.0 -
Hi Would someone please tell me what size capsules I need to put the pill in. Thanks
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Liz, I asked my onc about the diabetes, since I have it now. He said the drug is too new to know if the diabetes would end when the A/A treatment ends.Fortunately, the diabetes isn't too severe, but it's still a real pain to deal with. But I read that only something like 11% of patients develop it.
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