Afinitor/Aromasin
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Have a question about mouth/tongue sores. I have had burning tip of tongue, much like drinking too hot coffee, not horrible, and no lesions that I can see. Over past week have had soreness to side of tongue, noted a little area that was very tiny, thought it was my imagination or hypochondria, but it has a little gray center that has gotten larger, was initially about the size of 2 pinheads together, now about 3 mm, still sort of gray color with surrounding minimal redness. It is just not a very obvious ulcer, but it is definitely there. Those of you have had mouth sores, does this sound like what you have experienced? I rinse several times a day and am constantly sipping on water and swishing it around in my mouth. Should I be doing something else in addition? I will tend to wait until Monday to see if it gets better unless anyone has had it progress rapidly and needed care more urgently. Thanks.
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Stella, I have laser treatment for my painful mouth ulcers. The Onc nurse does the treatment every weekday. It's painfree & reduced the ulcers to nearly nothing. One of them has just come back after 2 weeks though. Used the child's toothbrush & toothpaste, frequent mouth wash with a prescription wash including anaesthetic, frequent bicarb/salt swishes and suitable foods & drinks that you can find in the list on this site. I've just read about using honey for the ulcers so I'll try that too.
If these ulcers continue I'll be taken off the A/A treatment that's working so well for my bone mets. Here in Belgium Affinator is only given within the criteria of a clinical trial here for metastatic BC. This is my last 'soft' treatment option before chemo so the ulcer problem is a deal breaker for me.
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I found taking the pill in marshmallow was sticky and too large to swallow...so I tried a part of a fruit roll up , and it's much easier, less sticky, and smaller to swallow.
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What exactly is the laser, what type, what is the name so I can look for it here. Thanks.
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I got empty gelatine capsules and put the pill in that. I also found the marshmallow too difficult to swallow.
Leah
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Bird, I'll call the onc nurse tomorrow & ask her for a more precise name then I'll post it here for you.
By the way, after reading an article in the Indian press this morning I put fresh aloe vera from the plant onto my ulcers & bingo! No pain immediately & that was 3 hours ago. I'm still pain-free. I always have an aloe vera plant in the house for skin problems but now I'll be using it for ulcers too.
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So spoke to my onc. We are switching after my petscan to afinitor/aromasin. He is convinced femara and faslodex stopped working. I am so scared to switch. I don't like change but with this disease I guess you have to get use to change. I am so nervous after reading all the posts. I am sorry to ask stupid questions. Does anyone still work with this drug? Does anyone travel? Does anyone have energy to play with smaller kids? I know these questions are stupid but what kind of quality of life can one have with this combo??? It seems so harsh...
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Stelleratovsky,
While the posts you have read do outline some of the Possible side effects of this combo, your experience will be unique to your body. For example, I was on Femara for 6 years and mostly had bone pain and fatigue as side effects. I was subsequently on other hormone blockers, then various chemos, and now on the Aromas in/Affinitor combo for about one month. What I am finding is that my side effects on this regime closely resemble the side effects I had with other hormone blockers alone. As far as the Affinitor side effects go, so far only some minor mouth sores.
My point is, now and as you move forward through different treatments, you have to remember that side effects vary with the individual. Try not to let the experiences of others frighten you as you enter into a new treatment. You will only know what your response will be once you have started it. It is good to learn about potential side effects so you can recognize them early and seek treatment for them. It is good to monitor the boards to get tips and support. However, sometimes what you might read here might just be a bit too overwhelming. If so, take a break from the thread for a bit to help ease your anxiety. You can always come back!
I have not worked since my initial diagnosis, for a number of reasons not all related to my disease. So, I am not working now. Could I work? Perhaps if some of the other stressors in my life were eliminated. It's all a balancing act and each of us has a unique set if familial, health and other circumstances to contend with. Try not to compare yourself to anyone else. Just because I don't work doesn't mean you will not be able to. Take it one day at a time.
Good luck!
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Stella, I echo DragonGirl's comments. For me, this has been a relatively easy drug (actually on femara/afinitor), not sure it is working, but know it takes a few months to know for sure. I also am not able to work but that was also prior to this combo, and I actually feel like I COULD work if there was an opportunity to work 3-4 hours, take 2 hour nap, work another 3-4 hours.... that's just not how our culture is set up .... I think I need to move to Spain, LOL! Again, each of us reacts differently to each of these drugs, but knowing potential SEs doesn't mean you will get them, but you can recognize them earlier and not let them get out of hand. Best wishes to you.
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Dragongirl and Linda thank u it just too much to handle when a med stops working and they have u go on something else. It I'd scary. I know my doctor told me in te beginning when one stops working we go to another. But I actually thought it would work. I guess I hoped. It is scary know because one drug down it's not like there are so many. I am 41 years old with two sons one 7 and other 16. I hope to be around a bit to see them grow. I just think this really sucks. I can't stop crying . I feel like the first time the doctor was breaking the news to me. I am so tired of all the negative I hope to get a bit if positive. I also have diebetes so it us vert scary.
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Stella I understand how it feels when a drug does not work and you have to switch. I've gotten used to that as I've been doing this since 2001. The Femara/herceptin combo worked best for me as I got four years with NED. Since then I have been on various drugs, but the good news is that I have a full time job and have never taken a leave of absence. My job requires travel which I am able to do. Right now I am on Afinitor/Aromisin with TDMI since I am Her2nu+ also. I have been on Afinitor/Armosin with other drugs also for about 18 months. The side effects are not terrible. The worst that I've gotten is some big D which has been manageable. I have never had an issue with the mouth sores. Everyone is different and some people have very little side effects. I have noticed that even the big D issues have gotten better in time. I really can't say that I have a lack of energy. Of course I do other complementary things to support my energy as my onc is very mucy into complementary treatments. Also you mention you are diabetic.
Are you taking Metformin? This is now in trials for breast cancer and is suppossed to be very effective.
Prayers and best to you. Hoping this combo works for you and is easy.
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Pearllady, thank u so much for explaining things. I would go crazy without the boards. All the women are so caring and helpful. I an on glyburide/metform and januva for diabetes.
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Stella best to you. I hope this combo works for you for a very long time. Also the Metformin is suppossed to be very effectice against breast cancer. Yes, the boards are great. All of the women are so wonderful and I've learned so much from them.
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I've been on A/A since January and love it. Other than a few Sores that come and go, I've had no problems. I work full time and feel great. Hoping to have a very long run on this combo!
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BaseballFan I'm so glad to hear that the A/A is working for you and not terrible side effects. I find this drug much easier than some others I've been on.
I noticed that you were on Faslodex. Are you still on that and did it work for you? I have not had Faslodex yet and my onc said that he didn't want to use up all my options. Just curious as I don't know any women taking Faslodex. I'm sure that I will get it at some point.
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Pearlady, I am currenly on faslodex. It stopped working for me. It is a pretty easy drug with exception of pain in the area of injection. My onc started me on it because it did not have major side effects. I actually liked faslodex i am sorry to get off it.. I really hoped it worked for me. Well new beginning with a/a combo. I really hope this will be my magic potion....
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Stella thanks for the information. I hope that the A/A works for you for a long time as relatively speaking, it's not that difficult a drug combo. For me one of the best things is no hair loss.
I was just curious about the Faslodex since I've not yet had it, but know that I will at some point. Just curious, how long did it work for you?
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Pearlady how many hormonal drugs were u on? I am curious because I had tamoxfin for 3 years and femera/faslodex for one year. I hope there are other options if god fobit it doesn't. Getting really scared.... Think positive stella think positive. I have to tell myself...
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Stella I was on tamoxifin for three years after my initial diagnosis in 2007 and then Arimidex after my bone mets were diagnosed in 2001. I was on Arimidex for two years before progression and then Femara for almost five years. That was the best for me. I have been on Aromisin since 2009. I am Her2nu+ also, so I have had those drugs also along with the hormonal drugs. I was surprised when he told me to start on Tamoxifin again in 2010. Believe it or not, my markers did come down when starting it again.
Presently I am on Tamoxifin/Aromisin/Afinitor as well as TDMI which is for the Her2nu. My TMs have come down since being on TDM1. My onc doesn't want to start me on Faslodex unless I really need it. Like you I am getting nervous that I am running out of options for hormonal drugs. My ER/PR is very high. In 2010 I went for a bone biopsy. Since my original diagnosis was in 1997, he said that the hormonal expression could change so wanted me be to tested again. Luckily it was still very high. At that time he was considering giving me Faslodex, but then decided to hold that out until I really need it. The whole situation is so complicated. The onc nurse did tell me that some women get Zolodex also as a hormonal which is typically used for prostate cancer. I am not familiar with that so have to read up on that.
Have you had Arimidex? I did get two years from that and it probably would have been more if I was on the Her2nu drugs at the same time. Very complicated I know.
I have also read that there have been studies done on women where Tamoxifn has stopped working. Apparently they give the women estrogen. It seems then that the Tamoxifen can be given again. I really need to talk to my onc about that one.
I love these discussion boards as I learn so much from other women. I can then take these questions back to my onc. My onc is wonderful, but I do believe that as a patient, you have to take the initiative many times.
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Pearlady, I was originally diagnosed in 2009 as stage 3b, after surgery I did petscan and it was clean nothing so they still had me do chemotherapy and radiation than they put me on tamoxfin which I was Ned for almost 3 years. Last may I discovered I had bone meta due to slot if pain. They started me on my f/f combo and I was on it for a year. I did have progression in November of lady year but than all of a sudden the Meds started working all blood work was getting good until know again. I am waiting to do petscan before te change but I know it will be changed within 2 weeks. He already told me. Oh I never had armidex is that hormonal. I was not on alot of hormonal only 3 but that's alot for some. I hope I still have lots of choices before chemotherapy again.
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Stella yes, Arimidex is hormonal. It's similar to Femara but works differently. Similar side effects. I feel the same as you do, I want to exhaust all of my options before any chemo. So far I have been doing that since my bone met diagnosis in August of 2001. I am also going to speak to my onc about Metformin. You mentioned that you were taking it. Do you have any issues with the big D?
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My diebeties is ok I will have to regulate it better with a/a because the a/a spikes it up. So many rules so stressed out. I don't eat or drink anything with sugar once in a while I will cheat a bit but I try not to. I have to cut on fruits it's natural sugar but still never the less still sugar. I live fruits I could live on that alone.
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Pearlady1, I was on faslodex for 4 months but it didn't kick in and ther was progression so onc stopped it. Darn...loved that drug.
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I have been on this combo for almost a year now and do fairly well on it. If I still had my job, I could probably work with this combo but I would be crashing and burning when I get home! I do watch my 3 grandchildren ages, 6, 5 & 3 months everyday and don't usually have any issues. I am very active with the kids doing arts & crafts, taking walks, going to the playground, etc. I hate to see kids in front of a tv watching cartoons or playing video games all day so we do lots of things to have fun. I am usually pretty run down on the weekends and then I ramp up to start all over the next week again.
I don't normally have much trouble with the mouth sores. I use the gelatin capsules to cover the pill so I usually can avoid the mouthsores. I do occassionally get that funny feeling spot on the edge of my tongue. I use a baking soda/salt water rinse when I have that happen and it clears up.
Normally we all post the bad side effects we have on a drug and if we are doing ok, we move along merrily on our way. So not seeing people praising that they are having an easy time does not mean that it is not possible. I hope you have an easy time with this tx as it does make living with this disease alot easier!
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Thank u all for great advise and the most important thing this cocktail works. I have all my fingers and toes crossed.
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Baseball fan, thanks for the information on Faslodex. I've heard that it is a very slow drug to start working, but not sure if four months is typical. Sorry that it didn't work for you as I've heard it is an easy drug to take. Knowing my onc, once he puts me on the Faslodex, he will do so with other drugs. I can't worry about that now. Aren't we suppossed to take each day????
Hope you are doing well now with whatever combo you are on. Best to you.
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Hi, everyone! It's been a few weeks since I was on here. I spent the last 2 weeks in the hospital ICU with severe pneumonia. Never want to go through that again! I don't know if the A/A helped bring it on (I know that pneumonitis and all that are possible side effects) but I'd like to point out to anyone with questions, that if you have a hard time breathing, go to the ER!
I waited several days, thinking it was just a cold. But with a cold you don't start gasping for breath after 10 steps. I could feel and hear all the gunk in my chest, but couldn't cough it up. When I went to the ER, it took several days for the antibiotics to work (they had me on 3 at once). My lungs felt like they were burning. The dr. wanted to put me on a ventillator, but fortunately I started improving at that point. They did have to do a bronchoscopy (ick!!) to flush out the gunk in my lungs, though.
In spite of it all, I'm glad the A/A is still working. I was off the Afinitor for 2 weeks, which made me very nervous, but I don't feel that the cancer is starting up again. I usually start feeling more back pain when it does. Now that I re-started the Afinitor, I've got a bit of a rash on my neck and chest. I was just wondering if it was some reaction to one of my meds and then read the last few pages here and remembered...oh, yeah, it's the Afinitor, duh!
One thing I learned in the hospital is that doctors know basically NOTHING about Afinitor. The pharmacy didn't have it, and the pulmonologist asked ME for information. Even if I needed to take it, I would have had to bring it from home. The doctors were otherwise very knowledgeable and all that, but it's something to keep in mind.
And as a funny side note: I mentioned to one of my middle schoolers that I teach (Yes, Stella, I've been working all this time on A/A with no problems) that the meds I take make my nails brittle. She suggested nail polish. I hadn't worn nail polish since I was in middle school myself (I bite my nails and think it would look stupid to paint nail stubs - ick!) But being a middle schooler, she brought in some nail polish the next day, and for a treat after her classwork, she did my nails...with silver polish.
Well, the very next day I end up at the ER, where they tell me that the stupid polish interferes with their ability to determine my oxygen saturation (the little pinchy thing they put on your finger)! I don't wear the stuff for 30 years and when I do, it interferes with my treatment! I thought that was so funny.
One good thing, though, is that since the pneumonia technically is unrelated to the cancer, I qualify for short-term disability. (I bought the policy in the fall and it won't cover cancer until this coming fall) So even though I was without pay for 2 weeks, and will be for 2 more, I can at least get enough to survive on. A true blessing in disguise!
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Raro I'm so glad that you are feeling better from the pneumonia. That is very scary. I hope that you take some time off from work before going back. I'm not sure that the Afinitor would bring it on, but I can't imagine that the Afinitor helps your immune system.
I am not pleased with the fact that I can't get a flu shot with the Afinitor. I was so nervous this past year about not getting one. Everyone in my office seemed to get the flu and I just wanted to stay away from everyone. That's why when on the Afinitor we have to keep up our immune systems as best we can. Thanks for sharing about the pneumonia. Again, so glad that you are better.
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Raro, I'm so sorry to hear you were so sick but I'm glad you're doing better now. It's funny about the nail polish - when I had my port put in the nurse in the outpatient surgery dept said something about it interfering with the oxygen saturation thingy. I hadn't been told but said if she brought polish remover I'd take it off. She didn't, so I didn't. Apparently in procedures/surgeries that require general anesthesia they're more strict since the anesthesiologist uses the color of your nails as part of his assessment of your condition during surgery.
Pearlady, I didn't realize we couldn't get a flu shot on the A/A. Uh oh.
Leah
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Raro, glad you are better, so sorry you were so sick! Ugh!
I don't think most pharmacists even know that much about afinitor. I actually got a call from the "specialty pharmacy" pharmacist when I started the drug, and we had a rather lengthy conversation about it, including the fact that most pharmacies do not even carry it - apparently it is several thousand dollars for a 4-week supply, so they have to order it special for anyone on it. I guess it isn't all that common for patients to be on this drug, and quite honestly, I had never heard of it until I became stage IV.
I realized that those sores on my tongue disappeared and mouth feels fine. They only were minor and were sort of off and on for about 6 weeks. Now I just have a little rash. No Big D - in fact, quite the opposite, not sure if it is because of pain meds, which I have been taking at least once a day and sometimes twice since LE started. Geez, I never realized how that can cause some pain, but I guess it makes sense when I start thinking about the anatomy & physiology of lymphedema and inflammation.
Starting 3rd month on afinitor, still don't notice any decrease in size of nodules, but hoping it kicks in soon .... I don't have to see MO until July 3 for labs, re-evaluation, and zometa infusion. Finally a little break from most appointments!!!0
