Afinitor/Aromasin
Comments
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This combo seems really hard. I've been interested in seeing how all of you are doing, and while some of you are having good results, the side effects are quite daunting.
chocolatesa- i've been on Faslodex for 20 months, and the side effects are minimal. I think you'll like the drug. It's been working for me all this time, and (cross fingers) I have a CT scan tomorrow that will tell me if it's still working for me. It's easy enough that I could stay on it indefinitely.
I think the next thing my onc will put me on, when the Fas fails, is A/A, so this thread has been very instructive. Thank you all for your input.
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Hi sandilee,
thanks for the encouragment.:)
i wish you continued success! my heart goes out to all on this journey. i'm grateful for the kind folk here--it feels good to commune and support each other.
i'm doing my best to go with the flow...
i may have to return to Afinitor, depending... am preparing myself with an open mind and heart for what may be
sending love to all...all the best
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thinking of sue with her toes in the sand, and an umbrella in her drink:)
i'd love a vacation in a warm place, about now.
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I have my Rx filled, sitting, waiting on me. I know you are not supposed to cut pills, but also have been told that it's ok to dissolve them in water, so I wonder why it would be wrong to cut them and dissolve them. I have the 10 mg tabs, want to start at low dose and work up if I tolerate the lower dose, but will see the MO on Tuesday and maybe it is better to start at the higher dose and titrate down if SEs occur. How soon do the SEs kick in if they are going to occur? Anyone NOT have SEs???? Or at least MILD SEs? Anyone having GOOD quality of life on A/A??? I can use a little encouragement - am really trying to get my courage up, reduce my anxiety. Part of me says I could be lucky, minimal SEs and it might even work, other part of me says if SEs are terrible and it doesn't work, I don't want to waste much of my time left getting over the SEs. And, yes, I know we won't know unless I try it .... Feels like there are no good choices some days.
Thanks for any advice and encouragement you can give me.0 -
I have GOOD quality of life and minimal SEs! I started at 2.5, then 5, then 7.5 and finally 10 (over about two weeks). I am a bit tired and have some wacky aches that come and go. No mouth sores but a bit of a sore throat. Diarrhea once in awhile. I do not put the pills in anything. Great luck!
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Hi Linda
yes, effectiveness of treatment of any kind, truly depends on the individual; you're right in that you wont know until you try it. I would recommend a nutritionist or naturopathic oncologist to help with the nutrition aspect--i think it's important to try to keep your body as healthy as possible with healthy foods and supplements(check with doc about contraindications). I know that grapefruit, alfalfa sprouts, St. John's Wort and Milk Thistle are some of the things on the list of no-no's when on Afinitor. But when taking it Afinitor myself, I avoided herbal supplements of all kinds because there havent really been any extensive tests regarding use of herbs with Afinitor.
Numbers will change in your labs(mine were being checked weekly)-- keeping an eye on the numbers, you'll feel empowered by working on getting those numbers within normal range(if they get too high or low from Afinitor). It's a balancing act(but then again so is life), but that was my experience. It definitely made me more conscious of eating healthy... so that's a plus:) Also, stay well hydrated especially during treatment.. helps flush out the toxins. WHile on the drug, my naturopathic oncologist stressed food as my friend and healer. I agree. He also recommended fresh organics-like parsley, lemon, garlic, onion(raw on all is best--maybe eat the parsley after the onion and garlic to tone down the bad breath lol)--great cleansers for liver support.
I'm very thankful for Afinitor--it helped get my CA 27 29 down about 80 points within the first 6 weeks of taking it. I was 58 the last time my tm was checked. woot!
Wishing you the best on your treatment!
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wow adey, great to hear!:) sounds like your onc got you slowly adjusted to it? was that the plan?
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ps @ adey
i have a bright pink wig like the ones in your pic.
thought it would be fun--as a bonus, the hubby finds me very attractive in it. lol
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i'm off to do my chores which doubles as my exercise:)
take care, everyone
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I have been on 10 mg since November 2011 and have good quality of life. I have had mouth sores sporadically but use Kanka as soon as they appear. It helps numb them and make it easier to eat. I see my oncologist and have bloodwork monthly so she can monitor my blood counts. I have only had to stop taking it once for a week because of extremely low blood count. I don't put the pills in anything but rinse my mouth after meals with Biotene mouthwash. I hope you have good luck on this drug also.
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Back from Florida. Most difficult part was the fatigue I experienced all the time. Walking across the parking lot from the restaurant I would have to lay down in our bed to rest a few minutes. Missed some group sightseeing as I knew I was just lacking stamina to participate, but husband got to participate. Did so enjoy laying in a chaise loung chair and listening to the Gulf all covered up from the sun. I even cut my Afinitor pills in half and a lower dose did not help. I was almost ready to ask for a wheelchair at the airport. Now that I am home I feel better. Guess a slow paced life is what I need on this med.
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Hi Sue!
Good to hear from you! I'm so sorry about your fatigue--I understand!
But the chaise lounge and listening to the water sounds divine--i just love the ocean!
Wishing you the best--comfort and joy!
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sue george here.
I've just joined. I started afinitor two hours ago. I was so pleased to read so many posts! The waiting game is upon me. I feel that I am not ready for any side effects. Tomorrow I'll get a few things. I'm missing a memorial service due to my anxiousness this week. sue1993-3/27 axiallary (sp?) lymph nodes involved
Lumpectomy, 33 rads, 5 1/2 years of tamoxifen.1999- 2nd breast tumor, another primary. bi-lateral masectomy and latissamis dorsi reconstruction, arimidex
2002- stage IV, right ptyergoid musculature and tumor base of skull rads to both areas
2010-lymph nodes mets in media-sterno area. 15 rads
2012-liver mets-faslodex; xeloda and taxotere; gemzar and the start of A of A/A today.
Later, sue
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I am doing well on A/A. Hope you do too.
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Wishing everyone the best on their treatment!
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Starting Afinitor 2.5 mg today for 1 week, then boosting to 5 mg for 2 weeks, then to 10 .... Taking a deep breath, doing my yoga & meditation breathing .... taking it at night as the pharmacist said that if it causes nausea it may be possible to sleep through that part. Am optimistic I will be fortunate and have minimal SEs .... so today am having a "fun day" doing just things I want to do.
Wishing you all the best. Will check in with you regularly.
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Hope you have the funnest day possible. I think it is smart how you are not having to start with 10 mg. I wish I had been given that opportunity. Please remember to drink lots of water. I always have to get up during the night to go to the bathroom. I never turn on the light because my husband is sleeping. I just have a glass of water ready by the sink so I get water during the night and then my bottle of biotene and rinse my mouth out. Also brush my teeth as soon as I get up and rinse with biotene before I even have breakfast. I need to get back into meditation and yoga. You will do great as you sound so optimistic.
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I have been on Afinitor/Aromisin along with various combinations for about 18 months. Right now I am taking 7.5 because I am on TDM1 also. I know that Afinitor was approved for Her2 negative, but my onc felt that this was a good drug for me since I have very high ER/PR, despite my being Her2+. Luckily my insurance paid for the Afinitor.
The afinitor has helped to keep me stable. My main issue is the Big D, but it is mostly manageable compared to other drugs I've been on. I always take it at night before bed and have never had the nausea that some women have mentioned. Also, have never had an issue with fatigue or with mouth sores. I think the nightly meditation has helped. I work full time and other than some occasional big D issues, this drug is not so bad. I do find that taking Pepcid does help. I've gotten the prescription strength from my onc and it really does help the gastro issues.
Prayers and healing energy to all of us. I hope this drug works for a very long time for all.
Monica
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I have been on A/A for almost 8 weeks now and have had relatively few SEs...a few mouth sores and a slight sore throat. But I have a rash on my chest that just won't quit. I always have a bit of an itchy rash after I get my port flushed but now the rash is worse and never goes away. I think it is definitely related to A/A. I put hydrocortisone cream on it morning, noon and night but this doesn't help much. Anyone else experiencing this and do you have an solutions?
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I am sorry but I have not read of anyone with this type rash. Have you checked with your doctor's office? I think hydrocortisone is a steroid and maybe this rash does not respond to a steroid? Let us know if you are able to find a solution.
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I have tiny bumps on my arms, shoulders, back of legs and those bumps itch! I would love to hear a solution for the rash!
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Linda n-3 I think you will do well wiith this. I also take before bed and have never had any naseau or headache issues as some women have reported. I typically eat yogurt before I take the TDM1 and really thnk that helps. I really have very few side effects other than some constipation issues late in the day which can be somewhat annoying, but much better than big D issues I've had on other drugs. My energy is pretty good with this drug, but I am only on 7.5 since I am also taking TDM1.
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Anyone with rising liver enzymes? My GP had me have blood work as I take cholesteral medication. Called and told me to discontinue because of my liver enzymes. Said I needed to give my liver one less medication to deal with. My last blood work with my oncologist was on March 6, and my liver readings were normal.
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Karen14
So sorry you are having so many issues that require hospital stays. But better safe than
sorry. I've been on A/A since Dec, 2012. Had mouth sores that caused severe abcess and
lost 2 teeth. I take it with other meds/vitamins. I hope you're doing better and all goes well.
I have a dream to go to Ireland - it's on my bucket list!
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I did well on 2.5 mg, started 5 mg last night. I am taking your advice to keep meticulous oral hygiene, taking it at night. Saw MO this week and although nodules have not decreased, at least they have not increased in size and no new ones have popped up. I have MRI and zometa next week, then see BS the week after, so I pleaded with the MO to give me a 4-week break from appointments, which she did, so it will be 6 weeks until I see her again.
For those with rash, yes, it can be a SE. I did a LOT of reading and research before beginning this drug (I used to teach pharmacology, but there are TONS of new drugs that didn't even exist when I was teaching!), scared myself a little, but also realized that it has the potential to be really effective, and most SEs can be managed, I tell myself over and over. But all SEs should be reported to your doc!
And yes, it is hard on the liver. But I would check with MO before discontinuing this med, Suecolo2. There may be other options or adjustments, or you may need a different drug. Best wishes.
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LisaAB,
I sure am glad you got rid of that onc - what a dope! I've had the dry mouth and sores, use Biotene after
meals. Also had high markers at 85, 2 months later they were at 5, and last week they were negative! I was
very excited, then we did the 2nd bone biopsy and found out the cancer in bone marrow has not changed, still a
lot of cancer.
Has anyone had this happen?? My onc wants to put me on another chemo, but I feel this type of treatment
is for favorable for a good life style. Any info on this kind of info would be greatly appreaciated.
My onc and I work as a team, and he will keep me on this is it's really what I want. It's maintenance on any
chemo at this point, not looking for a cure anymore - just a good long life! Thanks ahead of time for any
info you grils can add.
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By the way Pearlady1, what is TDM1? And did you ever take 10 mg of afinitor and have to decrease the dose? I am supposed to go from 5 mg to 10 mg in 2 weeks, but MO thought maybe 7.5 in between as a step might be a good idea, but I get charged a full month's copay for EACH Rx, and she has been writing them for a week at a time, and this is a top tier drug so I get charged a lot for each one. Am still a little nervous about just doubling from 5 to 10 mg, so may be worth asking her to go to the intermediate dose for a couple of weeks rather than go higher and risk SEs and then have to discontinue until they resolve....
OK, back to the present .... beautiful day .... surrounding myself with beauty and great music and love ....
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Linda, I am not discontinuing Afinitor/Aromosin. I was told to discontinue my Cholesteral medication by my GP. I go in for a PET scan in two weeks (this will be 3 months since I started Afinitor) so will be anxious to see how it has helped.
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Liz,
CONGRATULATIONS ON YOU MARRIAGE! It will be a lovely memory to reflect on during this time and also on
your good news!
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I've not had the rash either, but did have a breakout of pimples on my upper back, they itch, I pick and
it starts all over again. Derm gave me an cream that seems to be working.
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