Afinitor/Aromasin
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P.S. I informed my immediate family right off about the progression of the cancer and this new drug regime. I hated to worry them and of course, it did. But now that I am doing so well, they are very relieved. After my new lower TM, I sent a general e-news to friends and extended family. It is so hard to add this burden on them, but I also want to be encouraged by their well wishes and to remind me that there is a whole bunch of people out there who cherish me and are praying for my continued health. Anyone else with the dilema of when and what to tell?
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Hi c-j-k,
It looks like I've joined your club--I just started on A/A this Tuesday after a year and nine months on arimidex with faslodex added a year and 4 months ago. Like you, I was put on A/A because my tumor markers were on the rise and there was apparent progression to a few lymph nodes--I was originally diagnosed with a solitary met on the sternum (which hs actually regressed recently, but that's another story). Also like you, I'm at a quandary about who to tell. I blurted out the truth when I was with my sister-in-law and mother-in-law this weekend, but I haven't told my own family, in part because my oldest brother was recently diagnosed with a glioma and I don't want to be more of a downer. Since my onc seems very upbeat about my new treatment, I'd like to wait at least a bit to see if I have some good news to report before I update my family.
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Getting ready to start afinitor on Wednesday and I'm nervous! Any recommendations?
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Do you girls in the states need need to pay for affinator? I recently heard on the news that it was 4,300 dollars for 30 days. I've been on it for 3 months with multiple problems including rising tumour markers. And I'm thinking I'm glad it wasn't costing me to be this miserable. I'm definitely very sensitive to all medications so I don't want people thinking it won't work for them. In fact, I've yet to find a drug that works. But I think I'm through with this one. Scans at the end of July so I guess I'll find out. Best of luck to all of you.
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Karen, so sorry this drug is not working for you. Yes, it is a VERY expensive drug, and it depends on the insurance that one has as to whether and how much is paid. I pay for it as a "tier 3" drug, which means the highest copay they can require, which is about $100 a month, quite a bargain compared to the stated market price.
Granna1948, each of us is different with regards to SEs. I was thinking I was the queen of SEs, had trouble with every medicine I have taken until afinitor!!!! I have had just a few mouth and tongue sores, easily managed, appetite is down, nothing tastes good, and it is slowly working on my bone marrow so my white cell count is down and I am anemic, and I have a little rash that comes and goes but doesn't itch. All-in-all, not difficult at all, and believe me, if it was, I would be screaming for a change as I am all about quality of life now, and if the cancer slows a bit in the process, that is ok, too, but not the main purpose of my life.
Granna, I also worked up from 2.5 mg for 2 weeks, then 5 mg for 2 weeks, then on to the 10 mg dose. Several others here have done the same thing, and dose can be adjusted if needed. I use regular rinses of sodium bicarb and drink 2-3 liters of water a day in addition to any other beverage. I had been doing great with exercise, walking 2-3 miles a day until I got LE 2 months ago. Best wishes to you as you begin the new meds.0 -
Linda-n3, thanks so much for the information! I will keep a positive attitude!
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The Afinitor website has a co-pay card which my specialty pharmacy accepted to lower the copay to $25 from my regular tier3 copay of $60. It also lowers the copay for exemestane. Copays can really add up.
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This wednsday it's two weeks. I am doing well so far on a/a combo. I have a few tongue pimples and one pimple on the side of the mouth otherwise I feel so much better on this combo than femera and faslodex. I don't have so much bone pain anymore. Thank you god.... It was really bad at one point I thought I was dying. I just hope this combo is doing its job. My markers went up from 237 to 900 with faslodex hopefully it will god down...
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So my mom has been on A/A combo for 2 months now. My mom gets xgeva injections sometimes. She first started with 5 mg Afinitor and 25 mg Aromasin. A month later, the doc increased Afinitor to 7.5 mg and kept 25 mg for Aromasin. Today, we got a new lab report. My mom's tumor markers went up within one month from 57 to 100. Doc said to stop Afinitor and Xgeva until we get a new PET scan. She said we have tried most drugs already so drug options are very limited at this time.
Any of you had a similar experience. Are you taking something else after Afinitor/Aromasin combo didn't work?
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I have a question regarding a/a. I have rash all over and I am constantly itching does anyone else have that?? And if yes what do u use??
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Try cetirizine or any compatible anti-histamine. Calmed the rash right down for me. Hope it will for you, too.
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Thank you angelfalls, going Duane reade to buy it. I can't take the itching anymore. I feel like things are crawling on me.....
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When they said rash was a possible se I was fully prepared to break out. I'm very pron to hives. But to my surprise I have had very little problem. Just a few pimple like eruptions. Onc gave me clindamycin gel to put on the outbreak.
Just a thought about cost; I read an article about the 10 most expensive drugs. Interestingly Avastin was one, coming in at between $2000 -$3000 each infusion. I just got a box of 28 pills of the 10mg Afinitor and my insurance company paid $8383. Compairatively, that's more expensive than Avastin. It's unreal. I have a yearly deductible of $4000, then my insurance cover 100%. Just one refill in January is going to put me over!
Hugs from Alice0 -
When I asked how much the drug would cost without insurance, they said $16,000. It is just absurd to think someone could charge that much for a drug. No matter how much they put into research to discover it, this is markup smells of just plain greed.
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I was diagnosed with mets to my spine 21 months ago. Initially, I received radiation and was put on Xgeva and Femara which worked until a month ago when new sites were found again on my spine. I started Aromasin and Afinitor but had difficulty with 10mg; mouth ulcers and rashes. I'm now on 5mg and while I don't have mouth ulcers, I feel like crap! It's like having perpetual flu and the rash is back. Most food is very unappealing. I try to eat mostly a plant based diet and no sugar, but now nothing tastes very good. I have stopped doing so many things I love because it takes too much effort. I guess I'm just whining. I don't know how long I can do this. For those who have been on this combo for a while, does it get any better? And..... the cost is ridiculous!
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Hi chefmichel - I just came off affinator due to numerous side effects. One of them being thrush. Just like you I had a very sore throat and bad reflux. If the back of your throat is silky white white it's probably thrush ...very painful. I'm on nystatin liquid now to gargle and swallow. Ugh... but it's getting better fast.
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I am on letrozole (instead of aromasin) and afinitor. My bone marrow seems to be slowly ceasing production - white count is down and dropped my hemoglobin 2 grams from baseline, get short of breath very easily. Was told to exercise to keep letrozole SEs minimal, so I am trying, and since the shortnes of breath and fatigue is getting worse, I don't exercise as much and the SEs from the letrozole are worse - more joint aches & pains.
My scalp is itching like crazy, hair coming out as much in a day as in a week previously. Not going bald, but I always had very thick hair, and now most of it is in my hairbrush. I also have that migratory rash, popping up here and there, only mild itching, so I wonder if the scalp itching is related. I wonder if there is some kind of cortisone-based shampoo or if it would be reasonable to just try a little on a little patch of scalp ...
Have been on it for 6 months. My pharmacist actually found a $25 copay coupon from the company, but couldn't use it this month because I had to refill a week early because I am traveling and would run out of it several days before I get home. Yes, it is expensive, but the company does provide some reduction in cost, which makes me wonder why the price is so high to start with. Kind of like college tuition - does anyone REALLY ever pay the stated ticket price?????0 -
I have been taking the Afinitor/ Aromasin combination since March, 2012, which was before the FDA approved them for the use of stage IV breast cancer. My tumor markers were at nearly 2400. In June, 2013, my markers were 26. My PET scan in April, 2013, showed complete remission. Wow! These drugs have great potential. I have had nearly every side effect, but none were serious. Fatigue is the most persistent one. I continue to enjoy my family, teach middle school, exercise daily, travel in the summer, and be thankful for each day of health. Take care, and live one day at a time.
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Pcrandall, that is awesome news! So happy for you! I just started on my afinitor on Thursday, and so far so good. I'm waiting to get my aromasin. Hope we all get your wonderful results.
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Linda, when I was on letrozole I also had joint aches and stiffness. I would get out of a chair and feel like I was the Tin Man calling, "Oil can! Oil can!" I started taking yoga and was amazed at how much it helped. See if you can find a class for beginners, and make sure the instructor knows about the LE (no poses that put weight on the arm).
Pcrandall, such wonderful news that Afinitor/Aromasin has worked so well for you! Thank you for letting us know, it gives so much hope.
Leah
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Pcrandall, many thanks for posting your awesome results! News like yours gives so many members and readers such a boost.
Leah, thank you for sharing your experience with yoga too. The section on Exercise During and After Treatment from the main Breastcancer.org site has more info about exercise programs around surgery, radiation, chemo or targeted therapies, and hormonal therapy.
• The Mods
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I have had really good results with A + A (but Anastrozole) plus Faslodex. I have experienced some fatigue (in unexpected ways!) but have not had the mouth sores. My markers are way down and after my PET scan in September, I want to stop the Faslodex and see if I can do as well without it. I hope the A + A combination works for many years without the severe SE.
I've stopped using Vagifem because of the new study linking it to estrogen+ BC. There are two schools of thoughts and equal number of oncs recommending it and women using Vagifem to those totally opposed to using it. I really like it - I've been reassured over the years by my onc that the estrogen only stays locally - but now I will try Replez which has received good reviews on BC.org message boards.
I hope those who are experiencing the severe mouth sores are able to find relief and will stay on this drug that works.
Sending positive loving thoughts for a life well lived!
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I'm on my 6th day of Afinitor, and so far so good - except a short while ago, I seem to be smelling something weird. I can't really explain it, but it is annoying. Anyone else have something like this?
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I have been on a/a for three weeks so far so good. A few mouth sours and a rash but I could deal with it as long as it works.
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I will be starting Afinator Thursday......waiting for it to arrive... and tonight starting aromasin
all words of advice are welcomed !
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I think all of you new users of Afinitor with Aromasin will be very pleased with the results. Please post your tumor marker results as they become available; some dramatic drops are possible. I am interested in what all of you experience.
If you are receiving your Afinitor from CuraScript mail-order pharmacy, allow several days from the day you call to refill to delivery. I call a full week before I need my pills. Also, I have my meds sent to my doctor's office where I can pick them up at my convenience; no one has to stay home on delivery day to sign for the Afinitor. If my insurance didn't require I use CuraScript, I would prefer my local pharmacy where I get all my other prescriptions.
Take care everyone.
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This is so exciting. I should get my aromasin today or tomorrow, and already have my afinitor. I pray we all get the great results you're having. Thanks for the encouragement!
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I've been on A/A for two and a half weeks now and so far my mouth issues have been minimal (a little sensitivity on the back roof of my mouth and my tongue has lost some of its gourmet sensitivity). I am, however, feeling a bit of nausea today. How many others have experienced nausea on this combo? I'm hoping it's just a passing thing.
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can someone please tell me what the "MAGIC MOUTHWASH IS ?""" starting AFINATOR tonight ... and scared of the side effects... I was on Femara for almost 2 years and ned for 18 months.. had some bone pain and fatigue .. but a great quality of life.
i still work full time as a custodian at local school and love my job and I keepthe insurance so afraid the side effects wrecking that.. need inspiration
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Rosie,
I have been on A/A for 10 months. I am lucky, never got any mouth sores. At the beginning, my mouth felt different, so I started on Biotene mouthwash (found at any drug store). I do experience fatigue, but continue to work four days a week. Occasional problem with GI issues. But on the whole it has been a good drug choice for me. I take at night.
My Doctor does not believe in tumor markers. I get a chest cat scan every 3 months. Last visit i was feeling well, so next chest ct is 6 months away. I hope this drug continues to keep the pleural effusions at bay
Good luck, I am sure you will do well.
Hope
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