Afinitor/Aromasin
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I always learn a lot on these forums! I started Afinitor/Aromasin 2 weeks ago and one week later I had classic symptoms of UTI. I thought it was just a coincidence - till I read Proudtospin's similar experience. I wonder if these drugs make us prone to UTI (along with other infections)?
My mouth sores are so severe, I can't talk, eat or sleep! The doctor has stopped my drugs for now. Trying magic mouth wash, antiseptic mouth wash, antibiotics, etc. Does anyone know how long does it take for these mouth sores to heal? What worked for you? Any tip would be appreciated!
Thanks a lot ladies!
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Hi, S3K5! What you need (imho) is a prescription for dexamethasone liquid to use as a mouth wash. At the San Antonio Breast Cancer Symposium in December 2016 they reported on a trial of it. Educate your onc. This should be standard of care now. Swish and spit four times a day, and it just about eliminates the problem of mouth sores on Afinitor. It is a steriod, so anti-inflammatory. Stomatitis (mouth sores) are caused by inflammation. The antiseptic mouth wash is probably too harsh. Try instead 8 oz water with 1/4 teaspoon baking soda and 1/8 teaspoon salt to aid healing. Magic mouthwash is good for some pain relief. You can use a cotton swab to get it right on the sores. P.S. Try to get a dexa brand without alcohol in it.
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s3.. i have the mouth wash from doc and it does help to prevent those nasty sores. I have recently been taking the pill with milk, i drink small juice glass of milk afterwards. My docs office told me to gargle with salt water. Combination of all seems to be keeping them away for now.
Good luck on finding your combo
Well today is appt time with gastro doc and thurs is followup with onco, yummy
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ShetlandPony and Proudtospin, thank you for your input.
I have called my oncologist's office yesterday and today, to talk to the nurse about this dexamethasone mouth wash. But every time, the lady at the front desk takes my message and tell me that they will pass on the message to the nurse or Physician's assistant. The PA called the pharmacist with a prescription for 'magic mouth wash' (which I already have). In the meantime, my mouth sores are not getting any better! Will try again tomorrow!
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sk..I used vasaline on my lips when i thought i was getting a sore. I would think rinsing with salt water woild be safe and consider it realy helpful. Sorry for your problems and hope you get a system soon
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S3K5, how frustrating trying to get through to the doctor or nurse. This is unacceptable. Did you tell the brick wall phone person that you are in a lot of pain and are having trouble eating? And that you need to hear back today? Be polite but insistent. How about asking your primary care physician for a prescription? Refer them to the article below. Or ask your PCP to phone your oncologist, since as another physician, he/she will probably be able to get past the receptionist. Or just show up at the office and say you will wait until the nurse or doctor can help you. (That is a sit-in!)
(By the way, the rinse is just the same liquid dexa that some patients are given to swallow for other conditions.)
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Here is a reference for your doctor's enlightenment, from the ASCO Post (American Society of Clinical Oncology):
"Dexamethasone mouth rinse should be given prophylactically to prevent stomatitis associated with everolimus (Afinitor)/exemestane in metastatic breast cancer, according to Hope S. Rugo, MD, principal investigator of the SWISH trial and Director of Breast Oncology and Clinical Trials Education at the University of California Helen Diller Family Comprehensive Cancer Center, San Francisco. "This should be considered a new standard of oral care in this setting," Dr. Rugo said at the 2016 Palliative Care in Oncology Symposium.
The SWISH trial sought to evaluate an alcohol-free, steroid mouthwash to prevent grade ≥ 2 stomatitis in patients with HER2-positive advanced breast cancer receiving everolimus/exemestane.1 The comparator was historical data from the BOLERO-2 trial.2
At the 2016 Multinational Association of Supportive Care in Cancer/International Society of Oral Oncology International Symposium on Supportive Care in Cancer in Adelaide, Australia, Dr. Rugo presented the main results of the SWISH trial..."0 -
Hi ShetlandPony, thanks for the link to the article. I'll print it and hand over the hard copy to my doctor's assistant today. I see my onco next week.
Just an update - Yesterday, the nurse called me to say that the messages she was getting from the front desk were 'the patient needs mouthwash for mouthsores'. She didnot know why I was calling and leaving messages for her to call me back! When she finally did call me, I explained to her about the dexamethasone mouth wash, quoted the SWISH trial and finally she has called in the prescription for this! Hopefully, this will help (better later than never, I guess!)
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s3......sounds like you will finally be able to get some relief, hoping for you
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S3K5, thank goodness. I think the dexa will really help get those sores healed. You can use the salt & baking soda and the Magic Mouthwash in between the 4x per day dexa rinse.
I really hate telling my question to a receptionist and hoping that person understands it and can relay it correctly to a nurse or doctor. I sometimes email brief questions to my onc or nurse, and am careful not to abuse the privilege. You might ask your PA or Onc if you can occasionally email them.
Proudtospin, about the vaseline, yes it does seem that dry lips or mouth tend to "catch" and get irritated.
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Bump.
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Hello ladies, sorry I've been away a bit, actually busy for once, singing for schools, introducing kids to the operatic voice, it was a wonderful respite from thinking about cancer, and so very much fun, felt so appreciated and almost famous. Now the contract is finished, the fun is over, and my mind has rediscovered worrying about cancer. The Afinitor makes me tire quickly, and the days when I had three performances in a row, and had to get up at six a.m. to get the voice warmed up and ready -- every single time, the exhaustion turned into a migraine. Each time I spent days recovering nursing a nauseated headache. Last show was Friday, today is Sunday, the fatigue headache and the nausea has finally abated. But everything still tastes horrible. I go between feeling awful because I ate, and feeling awful because I did NOT eat.
I have a PET scan next Thursday, first one since my diagnosis in December. I am sorry to report that I do not see any real improvement since I have been on Afinitor, and actually there is now much more of the left breast that seems to be taken up in a vague mass, so I am a bit anxious about what will be discovered.
Re : side effects, as many of you have reported, there are issues of dry skin. I have some bleeding bumpy sores on places on inner thigh and hands, applying vitamin e helps. No more mouth sores, however an irritated tongue, and as I said, everything tastes horrible. I have itchy bumps like a baby with diaper rash in the 'booty crack' so applied some diaper rash cream that has zinc and vitamin A from fish oil. Fun. Perpetual acne-like white-heads on nose, vitamin E cream seems to help with that too if I apply it twice a day. As for urinary tract infections many are suffering from, I have not suffered from that as far as I know, but I guzzle down about three litres of fizzy water per day, which surely helps.
Meanwhile the sun is out, our garden is full of flowers in bloom, our pear tree has snowed its blossoms away and has leaves, birds of all sorts are singing their hearts out, butterflies and bumblebees are out working hard, and all of that is like paradise. So here I am, in solidarity in your sufferings and with you in trying to keep focused on the joy amidst suffering.
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gee the feeling of tiredness is sure for me. Course the onco says that is not a side effect, yeah. I seem to have a plan that works for me,i drink a lot of milk with the affinitor and for now no issues. I do have headaches, sort of lo level but almost constant. Got an appt with nuero this week to check it out.
I was told scan would be after 3 months so no way to tell if stuff is working yet, on the pill about 2 months so far
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Gee whizickers, Proudtospin, your onco is either a charlatan or talks without thinking. Tiredness is one of most common side-effects. Maybe invite them to read the paper that comes with the Afintor box.
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Amarantha, you have hit on two things that I find very healing: The Arts, and Nature. I try to maximize my time with both. I would love to see you find a way to keep being involved with your singing, on a schedule that is not too tiring. It sounds like it would be so good for your frame of mind. Dancing does that for me -- taking class, practicing, performing, teaching. I also try to get outside in the garden or go for short hikes. Spring flowers!
Ha! Invite the onc to read the paper that comes with the Afinitor box! Well-put. My stamina is so much better on my current drugs than my previous ones, that I don't really consider myself tired, having forgotten what normal is.
I'm with you, proudtospin, waiting for that first three-month scan.
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anybody manage to get to NED with this combo?
I have been on this for a year. Just had my PET scan. Basically still about same size 2by 1.7 and 1.5 by 1.5. I have a pimply teenager face and occasional mouth sores and a stuffy nose. And each cold normally ended in a hospitalwith antibiotic drip.
I am thankful that this stupid cancer is not deteriorating. But really would like to kill those cells and get rid of themfor good.
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i guess i will be having conversation with onco next weekith multiple
I never really thought that at this point i could ever really acheive ned. Doc said this was forever or till it stopped working
Had conversation with a pal at gym, she and husband are huge travelors to great places. But while in new zealand she realized her husband was slower than past. He was diagnosed with multiple maloma ??spelling. Great person she is as she said she could still help me if i needed any. Wow, course i said i would help her. Seems he is going to be taking an oral chemo as well
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I agree about nature and art too! I spent this weekend working on my butterfly garden and going to see art galleries. It was so nice to think about beautiful things. I'm so impressed with all of your artistic abilities!
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Hi Ladies,
After about 10 days on Afinitor/aromasin combo, I had severe mouth sores, headache and bone pain. So the doctor stopped this combo immediately. I had a three week break, trying to recover from these nasty side effects!
Proudtospin and ShetlandPony, thank you for all your support - your advice really helped me get over the mouth sores!
Yangtan, I don't know how your onco monitors your response to therapy. Does he/she always rely on PET scan or do they order MRI too? Being stable is a good thing!
I was on Ibrance/Faslodex for 4-5 months and my PET scan (with contrast dye) showed a reduction in SUV in almost all my spots on the spine. So I guess I was on the right track! Now I am on KISQALI (newer drug by Novartis) along with Letrozole. I hope this works, since it is very similar to Ibrance.
Good luck to all of you on Afinitor! It will be interesting to see if anyone on this forum has achieved NED with any treatment.
S3K5.
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hi s3k5, hang in there. I found the post effective way for me is to drink lots of water before and after swallowing the afinitor pill. I also use baking soda mouth wash. I just have to live with a pimply face. I take over the counter antihistamine for my stuffy nose. My tumor is on my neck so it is relatively easier to monitor by feel.
I am still looking for my handsome NED. Please come back to me.
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Oh, girlwithacurl, a butterfly garden and a rose garden are at the top of my list once I have gotten control of my house. Last year I had an art gallery membership, and I would go there after monthly appointments.
Yangtan, NED is so fickle. We know the stable boy can be just as good, but we still long for NED to come back.
My three-month scan is coming up soon. Will I stay on Afinitor? Stay tuned.
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shetland, butterfly garden sounds lovely. Best wishes for your 3 month scan. I guess mine is coming up soon as well, it will be first since starting on this nasty pill
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I'll have scans coming up too, but nothing scheduled yet.
Shetland, I've been obsessed with buying native plants to attract wildlife--I drive my family crazy wherever we go because I want to go to nurseries. And because I've lost my mind we adopted a rescue dog on Sunday. She keeps pooping in the house. But I figure it's a good distraction and helping someone else helps me too!
Off to therapy now (sometimes all this healing work is exhausting).
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this AA girl is also crazy. I want to start a herb garden. My family thinks I am mad as I hardly have energy to clean and tidy the house. But I really want something to distract myself and who knows the fragrance of the herbs might just attract NED. Anyway herbs are expensive here and they are suppose to be anti cancer and pro NED
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Yangtan, go for it! I'm finding gardening to be both soothing and distracting. I'm also working on a culinary and medicinal herb garden, though I have no idea what to do with the medicinal ones! It does feel really good to watch things grow.
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Wow, there are so many of us here who love plants and gardens. You are all reminding me of my passion for herbs, native plants, roses, and the rest. I need to figure out how to get back into this on a manageable scale. Yangtan, gardening is way more important than house cleaning, because gardening feeds the soul! Same for wandering plant nurseries, girlwithacurl. The house stuff I am working on is not routine cleaning or maintenance; it is the decluttering that will make home feel nurturing and beautiful. I'm really after the same thing indoors and out.
So I had my first PET/CT scan since switching to Afinitor + Faslodex three months ago. Overall, the results are good in that there is less metabolic activity with the liver lesions. I will stay on these drugs, hoping to see a reduction in the size of the lesions next time. There is something showing on a lung, which the radiologist says is likely inflammation. My onc and I think that may be due to Afinitor. But it is subclinical -- no symptoms -- so I am not going to worry about Afinitor pneumonitis. Does anyone else on this thread get PET scans, and have you had a similar finding?
Girl, I think I know what you mean about all this healing work. When people ask me if I work, I am tempted to tell them that my job is staying alive.
S3K5, best wishes with your new meds.
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it sure is work to stay alive
So i am i to spending some money.
Bought me a recliner the other week and today a nifty new car......the old one was 10 years old with 165000 miles and well i just wanted somethi g for me
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Proudtospin, I get the spending thing. When I was first diagnosed I was so depressed, I'd just stare at my closet and wonder what my family was going to do with all my clothes, and shopping seemed so pointless. But now, even though I shouldn't spend the money, shopping seems hopeful. Getting a new car means you are going to be around to drive for another 165k miles and beyond. My car is 13 years old! I really need a new one.
Shetland, I'm so glad you get to stay on these drugs and that the scans were positive! It's a relief to get through the scans without anything too scary showing up, especially since you are handling the drugs so well.
I just had my TMs done and they are still going down but just a bit this time. My first test after starting my new drugs was a drastic decline so I'm trying not to be disappointed by just a few points this time. This is my first success so I'm wondering how it looked for others when the markers started dropping. My onc feels that CEA is my best indicator.
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Girlwithacurl, congratulations on TMs continuing in the right direction.
Yes, I was disappointed with my scan at first, wanting a dramatic improvement. But today I have been reminding myself that lower SUV is really good; my onc said she was very happy about that. It helps to have my friends here saying, hey, good scan. And no new locations (assuming we are right that the lung thing is just inflammation), that is a good thing, too.
Proudtospin, congrats on your new recliner and car. You will enjoy them every day. I totally get the spending thing, too. With all we put up with and the future uncertain, we should do nice things for ourselves. So if Afinitor makes my skin really dry, by golly I am going to shop for some really lovely organic bath oil and have my own little spa night. And I'm swishing my dexa mouth rinse with a beautiful little exotic glass that a friend from Europe gave me. And I need a new dress for spring. And for winter! As you say, girlwithacurl, shopping seems hopeful. So does planting!
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Good news is so addicting--I feel like once you see progress in the right direction, you need it to keep coming, tenfold and then when the results are even just modest, it's not enough. I guess that's just one more lesson I need to learn in this new world of learning so many life lessons. I'm going to be ecstatic about modest progress!
My gardening is going well. I got reiki certified last week but instead of practicing on people I'm just sending energy to my plants. Shetland, I've also been obsessed with skin care. I found a really lovely face balm that's all natural and smells delicious so that makes me happy every night when I put it on. Also, with my new clean diet, I lost quite a bit of weight so I can go shopping in my own closet! I just tried on all my old dresses from my 20s that had been holding onto for no good reason.
I also got a new dog, because I might have gone a little off my rocker.
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