Afinitor/Aromasin
Comments
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Romansma,
Remember to encase your Affintior in small marshmallows or something b/4 swallowing---the mouth sores really hurt. Hope it works for you. I just had my PET scans to find out it it's working for me---won't know until Wed.
Terri
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Welcome, Hope. I hope Afinitor works for you. I'm waiting for tumor marker results, but, at least so far, I've done pretty well on Afinitor. My only significant side effect has been skin problems--bad itchy rash and now, acne
. I've always buried the pill in a dollop of marshmallow cream, and had almost no mouth sores. Doctors laugh about that, but it seems to work. Formygirls, I hope you get your lung problems sorted out and get on an effective drug regimen. We have to change pretty often, it seems.0 -
Not a huge fan of marshmallow cream, but if it works, I'm all in! Certainly not looking forward to acne, but I could have way worse problems, so not too worried there. I'm a huge fan of food so some of the reports of altered taste buds are not too encouraging.
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Hope, you just bury the pill in a little bit of marshmallow cream and swallow it. You won't taste it very much--just a little sweet taste. My taste hasn't altered, but I know that's a common se. Unfortunately, I've gained weight on A/A.
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That's interesting Mary.....I read weight loss as a SE. Gotta love it......no boobs, acne, and weight gain. Will make me feel like a pudgy prepubescent girl again....wooooohooooooo!
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Yes earlier this year I was 5kg lighter and hate it,because it's enough to give me a pudgy fat face on top of everything else.
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Oh, gosh, Australia, me too! I don't even know why I care about weight so much with everything else that's going on, but I do! I still want to look good, but the acne and extra pounds are making it pretty tough.
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Mary, l am on my own with my 21 year old son, and last night he told me I have chin hairs and need to pluck them. I said I. Know I have been meaning to do it, but no one looks at me anymore. And he said "of course they do mum, what do you mean? With that I started crying (which I never do) and l said " l just feel so ugly" and we sat there with his arms around me while l cried. I felt sad afterwards I had put him though that, but sm back to the happy face back on today, but it is hard accepting not only a terminal illness,but we have to be bald and ugly as well. Love Gail
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Aw, sweet boy. Virtual hugs Gail. I told my DH the other day he had a Frankenwife. (c:
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Sometime back on a TV show a doctor said when a lady starts getting chinhairs and/or mustache shaving is the best method for removal. Less chance for rash, etc. Sounds weird, but that is what I do.
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I had mouth sores really bad at first. I put the Afinitor pill in a heaping teaspoon of Cool whip and eat another heaping teaspoon followed by a cup of water. Mouth now doing fine. Been on the A/A combo since September. Not sure if what I am experiencing is a chemobrain or being 73.
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I haven't started taking these yet, but will later this week. I have a question, though. If so many people are getting mouth ulcers, and coating the pill helps, why hasn't the manufacturer done something about this? It seems that they could coat the pill to take care of this side effect. The fact that they haven't leads me to believe that they don't think coating it is effective in eliminating that SE.....OR they think it makes the med less effective. I haven't done the research, so I may be off base, but it's a question that is lingering for me.
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I've wondered the same thing about coating the Afinitor. I think that coating it wouldn't make it less effective because it doesn't matter if you take it with food or not. Some people order empty capsules to put the Afinitor in, and I guess that works, too. Also, coating it doesn't eliminate the other SE's, so it must still be getting absorbed.
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I thought the same thing about the pills being coated. You would think with such an expensive drug, they could at least prevent one bad side effect. My onc said if you don't like marshmallows, put the pill in a slice of banana. Whatever works.
Terri
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I went off Afinitor a few months ago, only ONE DAY after opening a new box, so I have 29 pills sitting around doing nothing. The pharmacist told me that even though they're in a blister pack they can't be used and she has to destroy them if I give them back to her (Ministry of Health regulations). If anyone can think of a good home for them, send me a PM.
My insurance covered it 100% so I'm not losing any money. I just hate the idea of such an expensive drug being wasted.
Leah
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I wondered what would happen to the leftover pills when we go off Afinitor. I hope it's at the end of a month for me, because I have a very large copay. This month it was $2,850. It will go down next month, and then starting in March, will be 5%, which is still about $450. Could you give the pills to the MO?
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Just had my PET scan results today and my onc is increasing dosage on Affinitor to 10mg. Hope I don't get worse SE. A new radiologist read the scan and was not consistant with interpretation as my normal radiologist. I seem to have a lot of scattered bone mets in spine not mentioned on other scans because they are not active and my new bone met has regressed some on this PET scan.
My onc will keep me on this as long as it works and will exhaust all the AI's & tablet forms b/4 putting me back on chemo. Glad I'm being watched closely.
Terri
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I'm still on 5mg, but expecting it to be increased to 10.
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Just got my scrip today....10 mg.
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Hi Ladies, I think the reason that Afinitor is not coated is that the problem with mouth sores is understood by the biomed folk as a systemic problem rather than an oral local one caused by contact with the drug itself. Often there are a few early break-outs (if you get this side effect and not everyone does) and then it calms down and disappears entirely once your body adjusts - marshmallow coating or not. Sometimes a few breakouts can occur down the road but for many its just a the first few months or even weeks. Because its an oral drug you should always take it with lots of water to prevent any local effect that might happen with contact. You certainly should do what you think is best re how you take this drug but do not lose sleep re benefits of coatings or not. I buy the science on this one - how could we tell just by report if someone was never going to have the problem or if the problem disappeared on its own - how would we ever know if it was the marshmallow cream or not? I've never used anything on the pill myself - had a one bad mouth sore outbreak right on schedule and nothing since.
Accept the oral steroid rinses when you start afinitor and treat any mouth sores promptly - don't watch and wait assuming you are protected - they can be vicious. Better to be prepared than get caught without the prescription if you need it.
Afinitor benefits are reduced if taken with a high fat foods. Thus its often recommended to have a couple hours after eating. Perhaps more important to keep blood levels stable is to take it at the same time and the same way each time. The manufacturer says you can take it with meals - you must just take it then with the same amount of fat every time so your levels slowly build but then stay at peak without any spikes.
Afintor seems to do a number on skin and membrane surfaces - mouth sores morph into acne and for some serious body itching and rashes -( particularly in hair follicles). Cortisone is our friend as are all manner of acne treatments. Affinitor is linked to triggering diabetes so be watchful of weight gain - some oncs are using Metformin as a compliment to control this response (Metformin also has its own anti cancer benefits which has been noted by many ladies on this and other forums as well). And yes losing ones taste sucks...that said I probably eat better now that salt tastes bitter. Miss the red wine though - they all have a cheap metalic taste.
Coughing is an afinitor flag - report it to your onc immediately - don't brush it off even if seems to be allergy like or if other family members have a cold - this side effect is considered very reversible if caught before it causes much damage. Its easy to identify on an xray. And make sure your blood work is done everytime you see your oncologist. Afintor can effect lots of organ functions & body chemistry. Its a new drug for us but has actually been around for sometime in other cancers - so lots of research on side effects. It just took breast cancer oncs a bit of time to catch-up on them. I would expect most are well up to speed now and have decent experience with side effect management.
Hope that helps add to the info pool for new A/A ladies
Best
Sophie
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I spoke to Onc about why the manufacturer hasn't addressed the mouth sore side effect with coating and she confirmed that there is no firm data on whether or not coating the pill works. She thinks it's systemic. Soooooooo....to coat or not to coat.......
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Sophiejean - thanks so much for your post! Experience always gives you a broader picture. I was going to head off to hospice since my bone mets are back with a vengeance and H&H has been as low as 5.5/17. It's been a long 7 years and I am tired. It's been transfusions every week, which made me feel better. My kids would have none of hospice. My 18 year old showed me a picture of the tattoo she was going to get..black and pink and I buckled. (She didn't do it because I freaked) Teenagers are vicious! So I am back on treatment with aromasin and affinitor 10mg, which I just got today.
I saw that timing was important and with or without food wasn't an issue. My BS can run just a smidge high so no doubt watch that. No live vaccines and watch for infections. (I am prone to mouth sores I get ulcers all over my mouth with Ibuprofen or NSAIDs not to mention stomach pain.) If this is an early problem and goes away, how long does it take for the body to adjust? I will be taking A/A and getting transfusions as well. In the handout it says afinitor can decrease blood counts, anyone had that effect? Do the counts drop slowly? Just curious. Also what time of the day have folks found taking it more tolerable?
Thanks in advance for your input. Cindi
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Cindi, my blood counts have stayed ok. In fact, my white count is up to normal for the first time in a really long time. I'm also prone to mouth sores, but have only had 3 (all at once) since starting A/A over 3 months ago. My big SE was itching, which Prednisone took care of. Good luck with this treatment.
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Oh. And I take my Afinitor at about 9:00 p.m.
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Mary, thanks for the reply. Do you take the aromasin and afinitor together or separate? Do you bother with coating it or do you just do the full glass of water like the insert suggests?
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I just went to pick up my Afinitor and the pharmacist says he can't get it. It was at a big CVS. Can anyone point me to a chain that can get this filled ASAP? Feeling antsy since I'm not on anything right now...wanted to get started on this combo.
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Insurance has not approved mine yet so I got samples for the week upcoming. Maybe ask your MO for some to tied you over. Also special drugs sometimes have to come from a specialty pharmacy, depending on your insurance. Good luck.
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I get mine from a CVS specialty pharmacy across from my hospital. If you called CVS they could probably tell you where to go. When I called to renew the second month, they mailed it to me.
Hope you get it soon.
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Thanks Danishgirl. I am going to start calling pharmacies this morning to see who can get it for me. Insurance also refused to pay for the Aromason. I was frustrated to tears last night. But, when I recovered I went through my medicine cabinet and found a bottle of Aromason from a year or two ago. I had tried it briefly and stopped taking them so I have a couple of weeks worth of those while we fight the insurance on that. I've known about my progression for a couple of weeks and it's very frustrating not to be able to start the new treatment
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I get mine through Rx to Go, which was arranged by my MO. They deliver it to my door, through Fedex. I checked with several local pharmacies, all big chains like Walgreen's. None of them handle Afinitor. I take the Aromasin right after dinner, because it's supposed to be taken with food. I take the Afinitor at about 9:00 p.m. With a full glass of water. I bury it in a little glob of marshmallow cream. I don't know if that helps, but I can't see that it would hurt. I've only had 3 little mouth sores that healed quickly. I also brush my teeth 3 times a day and rinse with a solution of half teaspoon of baking soda in a glass of water twice a day. The pharmacist from Rx to Go said to do that. Oh, and I use Biotine toothpaste, which has no sodium laurel sulfate. Regular toothpaste, and even herbal toothpaste were burning my mouth.
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