Afinitor/Aromasin
Comments
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Gail, so sorry that A/A didn't work for you. Hopefully, the new drug will. Have you checked on its side effects, other than the skin and nail problems? I have bad skin problems with A/A, but the nails aren't too bad. I am suspicious that the combo isn't doing much for me, because my TM's are rising. I so don't want to do chemo, though.0 -
Gail,
I also am so sorry that A/A didn't work for you. I was so hopeful that your experience would be similar to mine, with a tumor spike in the first 8 weeks and then a huge drop in markers, scans showing regression, etc. I'm almost sure that your next drug is Xeloda, and I know many here who say that it is easier to tolerate than A/A. In fact, there have been times while I was dealing with the SEs of A/A when I was actually looking forward to moving onto Xeloda. Also, lots of woman who had no luck with A/A/ have had a good, long run with Xeloda. I wish you fantastic luck with your next treatment.
Love and hugs, Ingrid0 -
Sandy, thanks for your post on changing the AI but keeping the afinitor, I discussed this with her when she rang me and she wants me go have another CT in a couple of weeks as markers are now 200 from 34 and lung congestion is still there and we will discuss then. Mary, she said some chemo tablet I have never heard of, or it could be I didn't understand her accent so I can't even look it up. Inky, I am feeling perhaps I could of had a flare also, but she doesn't seem open yo this suggestion. I had Zommeta yesterday and feeling like crap Today, I have been in bed all day with sore ribs, breathlessness and fatigue. It really knocks me around for a few days, so much for some flu type side effects. Feeling like shite and just want my bloody life back! I hope you girls can get a grip on the treatment and feel much better, it really is crap when you have these down days, but I know from experience it gets better. Love Gail0 -
Hi Everyone! I just started the A/A combo yesterday. I'm hoping for good results. I have been on Xeloda for the past 3 months and felt great- then my pain returned and TMs started rising. Had a CT scan yesterday which showed that my cancer has a "mixed response" which means some of the cancer cells respond to chemo and some only respond to hormone therapy. Basically, the Xeloda WAS indeed working- as it shrunk a large lesion in my liver completely just in those 3 months- However, while it was shrinking, a new lesion grew nearby and Xeloda didn't touch it.
My MO says this makes treatment decisions difficult. She doesn't know whether we should switch every few months between chemo and hormone therapy to keep all of the cancer cells knocked down as best we can, OR she mentioned possibly trying Xeloda, Afinitor, and Aromasin all together. Of course she is worried about that combo being too toxic for my body, so she is going to talk to some other oncs before she makes the decision. Has anyone ever heard of someone being on this triad combination?0 -
one step atatime,
I am on the combination and I think I think it is too toxic for me. My onc agrees it a harsh combo. But I have been on non stop chemo since Feb2012 and my body is beat up. I take affinitor, Xeloda, tykerb , Herceptin and Zometa. I have been on this combo since May. But I think it has stopped working as TMs are rising. My scans are in Jan. it worked for a few months although we do not know which part of it worked. My onc always favors affinitor since it is targeted drug.0 -
Having a bad couple of days. Energy is in the minus range. Pain is in the high positive range. Don't know if it is the meds and wonder if I would feel better if I took a break from them for a bit. PET scan 5 weeks ago showed improvement in a few bone mets and a few nodes, no improvement in a couple areas, no new areas. So the conclusion of course is that this is working. But new chest wall mass found Tuesday, have ultrasound on Dec 16. Not feeling very optimistic. I know Xeloda is potential option, but have had so much trouble with my hands from CIPN, now the Afinitor is making my nails so thin and fragile I have to keep bandaids on most of them because they are ripped into the nailbed and snag on everything and cause more pain. Letrozole causing so much pain in entire body, bones, joints, cannot seem to get past it. I KNOW that exercise can help, but don't have enough energy to even get a glass of water sometimes.
Then again, maybe the fatigue is just catching up with me as I hosted Thanksgiving dinner, had lots of family in, supervised them doing some home improvement projects, then went to my painting class all day Wednesday. Lots of good things going on, just feeling like crap in general. Is this as good as it gets? If so, I am OK with it, just have to make some adjustments to my expectations.
Have caught up with reading all the posts - I know each of you are dealing with SEs, uncertainties, changing tumor markers and scans, and we are just trying to keep our anxiety manageable and live each day to its fullest as best we can. Sending you all wishes for moments of peace and gratitude and joy today.
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The more precisely the position is determined, the less precisely the momentum is known in this instant, and vice versa.
--Heisenberg, uncertainty paper, 1927OK, this applies to quantum physics. But I just love the "Uncertainty Principle" as it applies to our situation. We can know at any moment in time just what the tumor markers are or what the PET or CT scans show, but we cannot know how fast or when those cancer cells will be moving. And if we know how fast they are moving, such as when there is a biopsy that shows fast or slow growing, we cannot predict just where it will show up. So I am presenting to you the "BC Uncertainty Principle" as stated by Linda-n3!
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Linda, I think the "BC Uncertainty Principle" explains a lot. It should be presented to the people who think our BC metastasized because we did something wrong--maybe weren't positive enough. Whether or not a person gets the disease, whether it spreads, and whether a particular treatment works are all uncertain.0 -
Well, Afinitor/Aromasin has failed me, so it's on to Xeloda. It seemed to be really helping my bone mets, but I could tell that my lung mets were exploding. I think my onc was a little surprised. Sure wish I could do Doxil, but there's another shortage. Good luck to you all!0 -
Well, looks like my faslodex/arimidex combo is failing, so I'll be starting affinitor/aromasin next week. I've been looking over this thread and this weekend hope to gleen a lot of useful information. It seems like people either do really well with it, or do horribly. It makes me a little nervous, but hopeful. Does that make sense??? Kelly0 -
Kelly, yes, you make sense! Any time we have to change from one drug to another brings a lot of anxiety: will we have SEs or not? If so, how bad will they be or will we be able to handle them? Will it work or not????? And if so, for how long???
For all of you on Afinitor, have you had problems with nails thinning, splitting, & lifting? And has ANYTHING helped???? I am at my wits end today as I wear bandaids on the tips of most of my fingers to keep the nails from catching on something else, and typing with bandaids is frustrating, to put it mildly. Also problems with anything needing to get hands wet or soiled. And adding this to the already problematic LE and dealing with gloves & sleeves, which hinder and annoy on their own, now catch on my nails ..... ARRRGGGHHHH!!!!!!!!!!!!!!!!!! Some days I am ready to chop my arms off and get a hook, it would take less care (I am NOT serious about this, just FRUSTRATED). Thanks for any suggestions.
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Hi Linda,
I'm so sorry that you are suffering so much with nail problems. That is definitely one of my SEs too, but I haven't had to resort to band-aids yet. Do you take supplements for your nails? I take Biotin, Vitamin B-12, and something called Biosil; my nurse practitioner is especially enthusiastic about the Biotin. I also keep my nails very short and lacquer them every day with a variety of nail strengthening polishes. Finally, I've found that Oil of Oregano is helpful on my toenails, which tend not only to tear, but also become infected. The Oil of Oregano has anti-fungal, anti-bacterial, anesthetic, and anti-inflammatory benefits.
I wish you the best of luck! Btw, I live by the BC Uncertainty Principle!
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My nails are sore and getting shorter and shorter and all of my moons have disappeared and they are pink and one tore below the nail line which is sore, but not catching, that would be awful. On 4 antibiotics a day for toenail that fell off which makes me feel sick. Now been in bed since Thursday since Zometa and managed to decorate Christmas tree yesterday but had no energy to do garlands above the windows so the lounge is full of lights and decorations and I can't be bothered looking at it and this is something I normally love to do. I always have such optimism and hope but it's taking a battering at the moment like many of us. Let's hope we have a break and Christmas is wonderful. Love Gail0 -
onestepatatime and Calesmom, sorry we are all sounding negative when you are just starting the combo! I wish you great success and minimal side effects, just follow the advice to avoid mouth ulcers . I still have itchy skin and am looking forward to that side effect resolving! Linda, yes you could be fatigued from all that activity also. Good luck everyone, love Gail0 -
My nails are very thin too. I worry that I will hit one of them the wrong way and lose it. I just keep them very short, below the finger tip and put clear polish on for (hopefully) some strength.0 -
Just wanted to share something pretty upsetting. I was reading one of the threads not for stage 4, and found so much hostility for stage 4! Where does that come from? Really, I'm kind of angry about it. I posted that I thought someone's comment was hostile toward us (believe me, it was), and received more hostility, along with denials that that's what it was. Don't think I'll go back there, but, seriously, what's going on? Has anyone else noticed that we are pariahs? Do they think they're going to catch mets? One of the women seemed to think that our continuous treatment was somehow unfair. I'll trade her. She can take Afinitor, and the certainty of eventual progression, and I'll accept her fear of progression.0 -
Mary, not sure where you were reading, but I am pretty sure not all threads are like that. There are certainly a few who post on the various threads that seem to have an attitude, and sometimes they mean it that way, and sometimes it is simply the lack of facial expression and tone of voice that convey the words in a completely opposite way. I used to teach online, and it is very difficult for some students to understand how their words in and of themselves can be quite hurtful, or "flaming". Use of emoticons can help a little, but still it is easy to misunderstand or misinterpret the written word. I also know there are those who hide behind the anonymity of online postings to say things they would NEVER say in person - it is a sort of shield that allows them to send barbs and zingers that they would not use in a conversation. In any case, I am so sorry you have met with and felt hostility. You have the option of just not going there - hang out with people who love and understand you. And if you venture into one of those hostile territories, just come back here for some love and support. I know we often try to share some of our insights with others, but sometimes those insights are threatening to those not walking a stage IV path - they don't want to think about the reality of it, but fear it nevertheless. What the mind will do when not monitored!!!!
Having a cup of tea right now, hoping you will join me. Then it is off do LE exercises.
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Hi, Linda. I go to a lot of non stage 4 threads, and most of them are fine. I had wondered, though, why some of the stage 4 threads are for only stage 4. Now I understand. It's too bad that there are feelings of separation between non stage 4 and stage 4 among some of the women. We're all pretty much in the same boat. Some of us are just farther down the river! Anyway, thanks for the kind words. I think some of the women just have a lot of anger. I'm too tired to get that worked up!
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I have been on Afinitor and examestane for a year. Initially I had bad mouth sores. My local pharmacist suggested a probiotic and Biotin mouthwash. After 2 or 3 days on the probiotic, the mouth sores cleared up and I haven't had any since. The pharmacist said the drugs kill the good bacteria (like when you're on a strong antibiotic and get a yeast infection or thrush).0 -
I have a suggestion for fingernails, but it may be unconventional for some. I wasn't even going to mention it, but it may help someone...
Since I'm a total girly-girl, I have always had manicures (most times I do myself) and was going nuts at how bad my nails were on this med. One day at Ulta, I saw a package of fake fingernails - like Lee press-on nails from 30 years ago? These new ones really do work! I tried the stick-on ones first and trimmed them down low. I had them on for 5 days and my own nails actually grew! I now use the kind with the glue as they don't budge for the full 7 days (you're not supposed to keep them on any longer). Actually, I don't think I'll ever stop using them now that I got the hang of them and it's so easy! Best of all, only $7.99!! Just trim the fake nails down low, and they are then quite comfortable. They sell some crazy colors/designs, but I just go for the basic french nails. They even sell them in the grocery store. Hope this helps some of you, no more torn nails
Now if I could just make the fatigue/mouth sores/indigestion/etc etc go away!
Laura0 -
Thanks njhopeful for the nail tip.
Terri0 -
Benjinate, I sort of thought about using fake nails, but I am NOT a girly-girl, and nail polish has me baffled - I have been using a "maximum strength" nail hardener by Sally Hansen, not sure how I even picked it out as there were about a dozen different types of liquids to help the nails. I trim them very short, thought maybe this stuff would sort of coat the snaggy tears, but it hasn't. I have bandaids over 4-7 fingers at any one time, hating it that I have to fumble so much when typing, turning pages, fixing meals .... and the glove for my LE dominant hand adds to the aggravation. And of course, the nails snag on the glove, pain for fingers, raggedy shaggy looking gloves - they just don't seem to play well together! The fake nails sound interesting, but intimidating - are there instructions with the nails? Do you have to get extra stuff to stick them on or do they have a self-stick surface? Do you trim them with nail clippers or scissors? Is there a YouTube video??? Believe it or not, my youngest sister was a Mary Kay lady, but I was her one main failure!
I think the afinitor may not be working for me - the NP found a "new" nodule on my chest wall last week at my 3-month follow up, and I think the "old" nodule that we have been following "clinically" seems to have increased in size significantly. I don't typically check very closely, and had a good PET scan just over a month ago, so was focusing on other things. Now back to the being in limbo feeling again, wondering if the nails will grow back out if I have to go off the afinitor, and how long that will take, but in the meantime I could sure enjoy some "normal" looking nails! And I hope I am wrong about this not working - it has been pretty easy overall for me, despite my grumbling about things that are somewhat irrelevant in the bigger scheme of things. Have ultrasound Tuesday, suspect the radiology folks will take the usual cowardly approach and suggest biopsy, and see the MO on Thursday, so will discuss any changes in treatment plan then. *sigh*
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Oh Linda, I really do hope you are wrong. Just when we get comfortable with a med, things change...and the comment about the biopsy just blew me away. I only ever had 1 biopsy at initial diagnoses! If the PET/CT shows change, then there is a change. You adjust accordingly and move on. You can tell your onc I said that
Pertaining to the nails, I did watch a U-tube video with a girl who looked about 15 and cracked her gum the whole time, but the girl knew her fake nails! And you use nail clippers to trim them - everything else comes in the package. If there are any teenagers/young women in your family, get them to help you. I don't have any, stumbled through on my own, but by the time I was applying my 3rd set I was good to go.
I have LE too, but I don't wear the sleeve anymore. But that issue consumed my life more than MBC for awhile with all of the appts, PT, etc. My right arm will always be a little larger than my left and that's that. I hope your arm settles down eventually - it took about a year for me. Have a good day sweetie, and stop thinking about your nodule and just try to enjoy the day.
Laura0 -
I Just got these afinitor pills in mail. I havnt read SE. Dont want to know. When is best time to take it. In am with tamox? Food? What does it do anyways
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I Read the info on here. Anotherpill for my box
l
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Hi All,
I am new to writing on this site but follow it occasionally. I have stage 4 ER, PR positive breast cancer for a year now, mostly stable, but with skin mets, metastatic pleural effusion and hilar lymph node involvement, with other cramp,as well. I am on the a/a combo now for 2 month and I feel well. Have not had a pet scan yet cause my skin lesions stabilized. I want to recommend linde skin care lip and cuticle balm for the nails. I go through a lot but I apply it to my nails and hands and so far so good. Also , probiotics daily that add up to 15 million organisms which I think has prevented me from ever getting a mouth sore. Good luck everyone as we hope a/a can work for a long time for a lot of people. What's the longest anyone has been on a/a, and has anyone taken afinitor with any other AI or with faslodex. How long has anyone ever been on Xeloda?0 -
I took the afinitor yest. no issues
I have 14 day supply. my insurance changes on jan 1. my insurance initially denied the afinitor for me. I think they wish I would just die allready.
would it make me feel bad or be really bad if I miss like 5 days? This is a marathon, not a sprint?
So this Afinitor is a chemo pill? I need to go back and read about it. of course I can't remember anything now
thanks for tip on lip balm and nail care.0 -
Hi, I had a Zometa infusion a couple of weeks ago and ended up really crook and stayed in bed for the most part of a week.
Had a girlfriend to stay for a few days and luckily I had picked up by then but had a extremely sore ribs and breathlessness . Not sure if it was from the Zometa or coming off the infinitor, but a very difficult time. I had a ct this morning followed by my onc appt. and there was no progression as she thought, but my lung was worse from the afinitor so am going on a steroid and she has made an appointment with a lung specialist to see me in the next week. I told her I was not happy about the Zometa with the effect it had on me and am going on a 2 week cruise with my son to New Zealand 2/2 and want to be drug free. I was happy to hear that as I had been on it for 12 months she was going to change it to 3 monthly anyway and I am not going to be on anything until my lung clears , so I will be able to have a nice holiday. So another one where lungs have been damaged by afinitor in just 3 months which serves as a warning to be very wary and to question it with your onc before it gets too bad. I had a pleural effusion in the effected lung, so it perhaps if it wasn't compromised in the first place it would not have happened, as the other is ok. Love Gail.0 -
Fran, I take my Afinitor with letrozole (not aromasin, but another AI) in the evenings after dinner, with a full glass of water. Then brush my teeth and use mouthwash without alcohol in it. The main thing is to take it the same time every day, and be consistent as to taking it with or without eating first, according to my pharmacist. I have been on it since February, and the worst things I had were a few mouth sores early on, but they disappeared and have not returned. The nail thinning started about 2 months ago. I have not had diarrhea, and if you read the fine print in the handout, it CAN cause constipation, which I have had but maybe due to other meds as well. My MO did take me off of it for a week when I developed a cough over the summer, which I hadn't really paid much attention to, but she asked about it, and did a chest CT, which was OK, so I started it again.
Afinitor may be considered a "targeted chemo" because it hits mostly only tumor cell processes, leaving normal cells alone for the most part. It targets the mTOR pathway that tumor cells need to proliferate, and I am not sure, but I think normal cells don't have the mTOR. I used to know all this stuff, but quit reading about it when I quit teaching last year, and my brain has turned to mush. Eventually the tumor cells find a way around the mTOR pathway, which is why afinitor quits working after a while. Median length of time for it to work is about 4 months, and I have had 10, so I guess it is not surprising that it isn't working well for me right now.
Laura, thanks for the support. I saw the NP at the time of the ultrasound, and we agreed a biopsy isn't needed unless my MO wants to check for any changes in receptor status. We all know that sometimes tumors lose the ER+ or become Her2+, so I don't know what she will want. Will find out on Thursday. Meanwhile, I am trying to catch up on BCO and get my Christmas decorations up. The sun is so bright today, shining in my sunroom, my cat sleeping in the sun, and I am nearly ready to doze off with her!
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so do people typically stay on this afinitor a short time? how do you know its stopped working? increased TM or more crap on the scans?
I was so sleepy today. had to drink strong coffee midday. I think I am just going to restart after holidays. got some partying to do and don't want to be tired. its a marathon not a sprint
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