Afinitor/Aromasin
Comments
-
Hi Kim, I hope you are doing well. I'm still hanging in there. I have another PET on Friday. I'm sure praying for a good Christmas present there and not a disappointment. Merry Christmas to everyone. Best wishes to al
0 -
Kandy
Doing ok....starting Afinitor again this time 5 mg down from 10mg :-( I think they want my body to get used to Afinitor and then adjust up on Afinitor. That lung infection really scared me! I will visit lung doctor every 6 weeks to make sure all is good!
Happy holidays to you!!!
0 -
Hi ladies, I started A/A almost two weeks ago after having to give up on Ibrance after only 6 cycles (which was so upsetting as I felt PERFECT, no SE at all, and had such high hopes for it). I haven't finished reading this thread but haven't seen any mention of leg pain. I'm having trouble with my thighs when I get up. I feel like I don't want to put my full weight on them for fear they'll collapse and I'm hobbling like I'm 90. I've been on Tamoxafin, Arimidex, Femara, Faslodex... all with almost no SE at all other than joint/foot pain and hot flashes. So this is the worst of them for me and I figure it's the Aromasin. Anyone else?
I wanted to mention that for the mouthwash... the directions say swish around 4 times a day but another piece of literature I had said to swish for at least two minutes. Maybe that will make a difference for someone.
0 -
Hi Jill
I was also on IBRANCE for a few months and did not work at all for me...my bone mets showed up again on my pet scan...so my doctor took me off IBRANCE and then started on Afinitor. I never had mouth sores but I used the mouth wash everyday and made sure AFTER I used it NOT to drink water right after using the mouth wash. I know Kandy on here had issues with mouth sores and a few others. It is very important to use the mouth wash and when taking the Afinitor pill I squirt whipping cream over it then swallow with water.
For me I had a bad lung infection started with a a dry cough a few weeks before ithit me in a day with a fever...horrible so please watch out for dry cough.
Afinitor for me took my tumor markers down within 6 weeks before I got sick. I am back in the Afinitor at 5 mg not 10 mg doctor wants to go slow and then up the meds as my body accepts the Afinitor
Hope you have a great holiday and please reach out anytime if you have questions we are all here for You!
0 -
Welcome Jillts to this thread. I hope besides the muscle weakness you are doing okay. I do have a lot of trouble with my legs but I had a major pelvis reconstruction so who knows if it's any worse on this med. But I do think any of the anti hormonal drugs can have that effect. When I was on arimedex that was horrible. Consult with your oncologist just to make sure he thinks it's coming from the drugs. Best wishes to you.
0 -
Help with Rx.
I tried Afinitor in 2015 and on the second day developed what were described as mouth craters and taken off the treatment. After trying and failing several chemo's a Genomic study recommended Afinitor. So far, on day seven there is no sign of mouth sores. I believe the lower dose and the Dexamethasone Rinse (alcohol free) have made the difference.
My question for those who are using the rinse is wher do you get your prescription filled? The first prescription was made at a compound Pharmacy and we were told cost 5 times what a pre made prescription would cost. Supposedly there are several drug companies who manufacture it but either the drug store didn't look for it or had no luck. Where do you have your prescription for the rinse filled? With the holidays coming, I feel some urgency to find it before I need it in a week.
Any help you can offer would be appreciated.
Thanks and Happy Holidays to all.
Crone
0 -
Not sure where you live at, are you in the U.S.? I get mine from our local CVS. Most of the time they have to order it, but it comes. I would think any big pharmacy could easily get it.
0 -
Hi Key2 and Kandy, thank you for the welcome and advice.
Key2, how long have you been back on at the lower dose and have you had any scans yet or just blood work? That is great news about your TMs and gives me hope. Prayers that you can tolerate it without getting sick again and that the numbers stay down.
Kandy, gosh a pelvis reconstruction? That sounds pretty serious, I hope you are doing ok. And yeah, I guess it's just the price we pay for these AIs and I've been lucky so far with no major SE. Hoping this will go away but I will be mentioning it to my dr in two weeks.
Crone, like Kandy I get my mouthwash from CVS. They had to order it for me but I had it the next day. Can you have your dr call it in to wherever you get your normal Rx filled? This shouldn't be a major ordeal from a specialty pharmacy as far as I know, but of course it depends on your plan and where you live. Good luck!
0 -
Hope you all are doing well. I really feel like I have more energy this month, maybe I am adjusting to meds....CVS compounded my mouthwash....It's NASTY....But worked
0 -
I don't find the mouthwash to be nasty, maybe like a mild cough syrup. Is that what yours is like, keetmom?
0 -
Interesting, I love the dexamethasone mouth wash. Is that what they gave you. Mine comes premixed so I don't know if that makes a difference. But honestly as long as it works, I would do it. Wishing everyone the best.
0 -
Hello Kandy, Jillts, Keetmom, Krone, Key2, I am glad we are continuing this thread. I began on Afinitor and Aromasine less than two weeks ago. Key2 and I have been back-and-forthing on a new thread on this subject in the IBC forum, but that is rather under-populated. My first few days on Afinitor had me vaguely nauseated, and very tired with a lingering headache and lots of pressure in the head and pounding heart (or perhaps it was all drawn-out emotional reaction to the bad news, not really sure) I seem to have snapped out of it, last night, ironically after a bad fall in the kitchen which seems to have screwed my head back on straight. I was given a solution with bicarbonate of soda and I am to dissolve four pills in the solution (they are anti-stomach-ulcer pills) and gargle with that four times a day for four days then start a new bottle. Does that sound like the magic mouthwash some of you are talking about ? I am doing it religiously and not so far plagued with mouth problems. Also because of reading this thread, I am taking the Afinitor coated in goat-milk-yogurt actually (fromage blanc which is thicker and creamier than yogurt). On the other hand, I know I have not given it much time, but I worry that the cancer is continuing to rapidly progress, so I raised the alarm, hoping to be seen right away, and have an appointment for Monday. That in itself is reassuring. Wishing everyone the best, and I hope that Christmas (tomorrow !) can offer some pleasure despite all the tribulations !
0 -
Welcome to this group Amarantha. I also had a horrible headache for the first 7 days I was on Afinitor. But then it stopped and hasn't returned. My mouthwash is dexamethasone, and it comes premixed by the company. Magic mouthwash has to be compounded at a pharmacy so I'm not sure what you are taking, maybe someone else will know. I hope you do well on this combo. Merry Christmas to everyone.
0 -
Amarantha
Glad to see you on here!!! There is more of us on this tread then the one I stared a few months ago!!
I agree with Kandy I am also using the same mouth wash and I know it really works so please when you go to your doctor on Monday ask her about this same mouth wash! It needs to be ordered from the pharmacy via your doctor.
I hope you all have a wonderful Holiday, Enjoyed with family and friends.
Big Hugs to you All
0 -
Amarantha
Thinking of you!! Hope your doing well.....
Warm Hugs
Kim
0 -
Thanks for the info on getting the Rx. for the mouthwash. I returned to the same CVS I had been the previous week and they had three bottles of it on he shelf - so problem solved.
Is anyone on Afinitor without Exmestane or aother aromatase inhibitor.? The question seems to be if the aroma taste serves any purpose if it has failed.
Hope you all had a wonderful holiday and that 2017 will bring the cure we all hope for.
0 -
The mouthwash they give me has, benedryl, milk of magnesia, ladicane and 1 other thing....
0 -
Nevermind.
0 -
I've only been on it 3 months. I think that most of us posting are relatively new on his combo. I do think there others out there that have been on it longer but maybe they don't have questions anymore. But my thought is, in the land of cancerland you just need to live day by day. It really doesn't matter how well or how long others have been on it, cause what's really important to you is how well your friend does on it. She may do extremely well for years or it may not work for very long. Everyone's cancer is so different. I do wish your friend the best.
0 -
Hi girlfriends, it is wonderful to have people to talk to about this. I have been on Afinitor/Aromasine for all of three weeks now. I have canker soars in both cheeks now, and am having a hard time eating, even talking. My husband and I were sharing a croissant and coffee in a café and I started to cry because nothing has any taste. I have rashes in the crook of both arms (the un-elbow), vaginal pain, and my nose is covered with pimples. I saw my oncologist today, she gave me some loratadine to use if the rashes get worse and a vaginal cream, and said if the canker sores don't get better soon, to call and they will take me off Afinitor the time for it all to heal, and then put me on a lower dose for a while. I also saw my regular doctor who thought some sexual pleasure (instead of pain and fear of pain) might return with the help of an anti-depressant. Hmmm. I do not think I will take it, but on the other hand if it could improve the quality of life ... maybe ? Meanwhile she said it is too early to tell if it is working but it possibly we see a retreat of the red area on both breasts, or at least it has not spread any further, and the skin seems a bit more supple. She also agreed that I need to cancel my trip to the United States (I was scheduled to leave on the 16th of January, and to sing a concert in California, which I have been preparing for months) but that as soon as all these symptoms are stabilized I could reschedule it, no problem to go away) luckily I bought cancellation insurance with the ticket so hopefully that won't be a problem, and we can reschedule the concert for later on. Canceling it is sad, but it is much better to have a firm reason and a clear answer than to wonder "should I ? shouldn't I ? should I ? shouldn't I ?" around and around like a headless chicken.
Keetmom, thank you for the ingredients of your mouth wash - -benedryl, milk of magnesia, ladicane - that one other thing must have been baking soda, no ? Very interesting.
Kandy, and Kim, I looked up dexamethasone, it is a corticosteroid anti-inflammatory. I just saw your answer now, so not in time to talk to the oncologist about it. Interesting that she would rather take me off Afinitor for a while than prescribe a thing like that. Perhaps it is not approved in France for such use. For now I will keep going with the baking-soda mouthwash with anti-stomach-ulcer-pills in it combo they gave me, try to do it a little more assiduously and see if things calm down.
Hugs to all, courage to all of us ! Breaaaaaathing ...
0 -
amarantha, So sorry you are having such a hard time. It was at 3 weeks that my mouth broke out and it was miserable. Even water was painful. Please consider calling your dr and asking to be put on the 2 drugs they added for me. Both are steroids, but I haven't had any trouble since I started taking them. My Dr also had said he was taking me off until they healed and reducing the dose. I was the one that thought we hadn't gave it a fair chance yet and insisted on staying on the higher dose. That's when he said if I was going to try that then he was adding those meds. So far, so good. Now none of us know when that might change, but I have now been on it over 2 months like that with no issues. I hope this clears up for you soon. Best wishes
0 -
Thanks for that information Kandy, it gives me a leg to stand on when I talk to her.
The name of the drug they gave me to mix in the bicarbonate of soda rinse is Cytotec ...
I also have to add (just put it in signature because drug not listed in treatments here) is Decapeptyl to stop my ovaries, because I am not actually fully menopaused.
0 -
What can be done for the pimply nose ?
0 -
Amarantha, I'm hoping someone comes along soon that can help you. I had a couple cold sores right inside the nostril, is that what you have? I really didn't use anything on mine, they went away in a couple days. Hopefully someone else will have better advice. Wishing you the best.
0 -
Hi Kandy ? cold sores inside the nostril ? ouch !! no - luckily, just acne. Looking back over this thread - have not read all 61 pages, but at least 35 or so pages, particularly in the beginning -- I saw that other people had this problem with acne - new pimples are born every night on the (outside skin of the) nose. The oncologist said it was a known side effect of Afinitor, and said I should always cover the nose with sunscreen if I go out (as if we ever had sun here). Why ? doesn't the sun (if such celestial orb were ever to return) give much needed vitamin D, and help cure acne ? I do not recall reading that Afinitor makes the skin more vulnerable to the sun. In any case, sunscreens usually have moisturising goop, which make my poor pimply skin so much worse.
0 -
Amarantha, I have read that there is increased chance of acne. I haven't read anything that anyone said helped for that. I'm hoping someone else can be of more help. But the skin is uch more sensitive to the sun and exposure should be avoided. I have heard that you will burn very easily. Thankfully it is winter here and I don't have to worry about that either. I am a sun queen, so I'm not sure how that will work for me come spring. I lay out at a pool all day long in the summer or am at the beach. We will see how sensitive I am in a few months. I hope you find something that helps for you soon. Best wishes.
0 -
Ladies, I need help. The box of Afinitor has been on the counter for over a week. The Dexa mouthwash is there also.
I can't seem to be able to make myself take it.
Perhaps it's the side effects that I am likely to have? Perhaps the cost? Perhaps the "Danger, Will Robinson! Danger! Danger!" biohazard bag it comes in?
Anyone else have this problem before actually taking it? I am not normally this way. Well, except for radiation, and perhaps (now that I have put the thought into my own head) that's why... I have many long-term side effects from it and a notable decrease in quality of life.
I just hate this.
Speak to me, please. I need help.
JJ
0 -
JustJean, I'm so sorry you are having anxiety about taking that. I didn't have trouble starting it, so I don't know that I will be much help. I guess I looked at it, that I wasn't in the best situation anyway, so I didn't have anything to lose. Try to set it in your mind, that if you do have side effects, then you will take care of them when they arise, and if worse comes to worse, you will quit taking it. You will never know until you try. The dexamethasone has been awesome for me, since I got that, I haven't had any side effects. Do you mind me asking how much you had to pay and what insurance you have. I do hope you are able to move it from the counter and start taking it. Wishing you the best.
0 -
Courage JustJean ! If the side effects end up being too yucky you can stop, or reduce dosage. For many people Afinitor is perfectly tolerable. Quality of life issues are important though. If it saves your life it is only worth it if your life is enjoyable enough to save, right ? You probably won't know until you try. What would help you find the courage ? would piecing apart and naming the various fears help ? I've been on it less than a month, and had many side effects show up by the second week, but the worst of the side effects seems to be fading away (even the canker sores seem to be slowly piping down). The pimply nose decided to get better right after I contacted a dermatologist friend (how embarrassing is that ?) - the headache lasted a week in the beginning then went away for ever. The fatigue is surely the thing which has not changed. But I can lie down for a 20 minute nap (or less) and my energy returns again. For me the worst thing right now, is I do not believe it is working, I feel pain and increasing pressure in the left ex-breast, and it just doesn't feel right. If it would actually work, the fatigue would be a small price to pay. Please keep us posted JustJean. Did you take it yet ?
0 -
No, I have not started taking it yet. But just writing that post yesterday helped me out - you know how sometimes just writing things down help you figure things out?
I am very concerned about QOL issues. It seems that I am one of those people that if there are side effects on a medication, I'm going to get them. Ugh. I'm not looking forward to any of these, for sure.
My insurance left me with a $350/mo copay. On disability, that is just not possible to pay. Novartis has their copay card so now it's down to $25/mo. Another strain on a very reduced income.
I have a planned vacation coming up in a few weeks (24 days, but who's counting?), so my goal is to take my first dose the day that I get back. After discussing this with several people, it feels more like a reasonable decision and not an avoidance. That way if I get some of the worse side effects, it won't interfere with my vacation. Sometimes I get to be selfish!
Thanks for letting me vent.
JJ
0
