Afinitor/Aromasin
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Mary,
Sorry you could not handle the Affinitor. Just saw my onc today giving him my list of SE's on 10mg. I did ok with 5mg, but 10 mg gives me sores all over, mouth sores & digestive issues. He's allowing me to take 5mg in morning & 5 at night to see if SE's lessen a bit. I hate the acne--I always had a clear face, but not anymore.
Aangell: I worry about the diabetes because it can be a SE of Affinitor. I heard that if you go off of drug, you will no longer have diabetes. Maybe I'll get something at the pharmacy to double check my blood sugar levels.
Terri
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Hi ladies. I start Aromisin today and Afinitor at the end of the week (if it arrives on time).
Just finished 8 months of Taxol+Avastin (clinical trial) and my two liver tumors were reduced form +3cm each to below 1cm. But Jan scan showed progression.
My onc sent the tissue from the mastectomy for genetic sequencing at FoundationOne and my tumor is driven by a mutation of PIK3CA which is part of the mTor pathway. That's what Afinitor works on, so this should be a good targeted therapy for me.
Here's to good results with low SEs for all of us!
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romansmn,
You could get it at cvs specialty pharmacy they have chemo dept. I could pm you the number later tonight when I get home from work. They are great they ship it out once a month too u.
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Getting scalp rash. It's a bit sore. Anything help for this?
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No acne or scalp sores yet. My MO just lowered my dose to 7 1/2 mg / day. I hope that will help with the mouth sores. I've been on 10 mg since Nov.30 with one 2 week break and a 10 day break because of mouth sores. I have a compounded prescription for steroid water mouth 4/daily and a new prescription for tetracycline mouth wash 4/daily. I have one sore right now but not too bad.
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NewGardener may have posted this article on mouth sore already. I may have just missed it, but I'll post again. I saw it on the other Afinitor thread.
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Anyone have low blood counts with extreme fatigue on this combo. Not sure if it's the rads or AA combo causing the low counts. May need to stop rads if they drop any lower.
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Romansma: I think it's the rads. I got very fatigued last Oct on Rads while doing A/A. My counts only show lymph .2 lower--not a concern.
Terri
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my white count and red count went low, and I had extreme fatigue (still do).
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I thought things were going pretty good. My anemia is holding in at 8.8 and my mouth sores are gone. The diarrhea seems to be hit or miss and not horrible. But I am noticing it's harder to sleep, I ache and I am tired. I know I am anemic and that has caused some mild Heart failure (diuretics BP meds help), but today I just ache everywhere. I did some gardening and bending and stooping.. and just feel like I ran a marathon. Geez I bet this is the aromasin. I had a miserable time with bone and joints on arimidex. Sleep was an issue too. Any one else experiencing this (that isn't caused by radiation which wiped me out)? I had to take a pain pill right after dinner my hips hurt so much. ugh..
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Rosevalley, I've been on A/A for 2 months now and I definitely am having more body aches than when I was on arimidex. I feel like I have arthritis! especially if I stay in one position for too long. Moving around helps. Also having some insomnia, though I've always had it on and off anyways. My mind goes into overdrive when I lay down and I find myself worrying about my daughter and husband, how they would function without me....things I haven't done yet. Letters to my daughter....Insomnia is pretty miserable. Benadryl helps as long as I take it early, otherwise it makes me groggy in the morning. The things we go through..... Hopefully we'll get a good nights sleep tonight and feel fresh in the morning to live another day!! Take care!! Kelly
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I've only been on Aromasin for a month (we're adding Afinitor next week) - I am in excruciating pain if I do anything - I mean anything! Yesterday I had a friend drive me to the grocery store, we went for lunch and came home - so help me I was crying at three o'clock this morning the pain in my hips, lower back and knees was so bad - I had a horrible time on Arimidex as well and my bp is sky high even with my meds doubled so today I am seeing my PCP and getting pain meds or else - I cannot go on this way..
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I'm so sorry 208Sandy! That sounds absolutely miserable!! I don't know for sure how true this is but I was told by someone that the estrogen blockers affect our joints so much because estrogen works as a lubricator to our muscle and joints. It sounds like you definitely need pain meds and I can't imagine anyone denying them to you. Hope you feel better soon! Kelly
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Sandy- arimidex did that to me, just misery. I have some arthritis anyway. I used to be able to take Celebrex, but it started to give me mouth ulcers. You might try that. Celebrex did wonders for joint pain. I loved it and wish I could tolerate it. I hope your PCP gives you pain meds. Your Oncologist wouldn't give you pain meds?
Kelly- yes insomnia has been a problem ever since I got dumped into chemo- induced menopause in 2007. It is easier to sleep with out these hormonals for sure. Yes moving around and not staying in one position works for a while, but by the end of the day.. yikes. OWIE!! The things we do for our kids. Here is wishing us pain tolerable days and at least 6 hours of sleep!
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Got the pain meds, changed my bp meds everything's good (for now).
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Hey! I've been taking AA combo for about a month. I also started rads to upper spine a little over 2 weeks ago. This past weekend, my throat was sore I couldn't eat or drink and it remains that way now. My Rad Onc and I attributed this to the rads. However, I spoke to my Onc today and she thinks the problem is both the rads and the Afinitor and has taken me off the Afinitor for now.
So, here's my question. Have any of you had the ulcers in your throat? I don't have anyt in my mouth and figured I would if it was the Afinitor. My throat is raw and it feels like there is something in it making it hard to even swallow my own saliva.
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My ulcers were in my mouth, and I think they went down one side of my throat. It even felt like they went into my ear canal on that side, but I don't know if that's possible! I had to go off Afinitor for good because the SE's were so bad. I also got pneumonia and had to be admitted to the hospital. I couldn't talk or eat without a lot of pain.
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Thanks Mary. Nothing in my mouth, but yes, it feels like they go into my ears too. First day off Afinitor and I have a teeny bit of improvement. Mary, did the ulcers going down your throat feel like there was something stuck in your throat? I know I'm asking a lot of questions but just trying to determine if my severe sore throat is just radiation or a both rads and Afinitor.
Anyone using honey to help with healing?
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I don't remember that I felt like something was stuck in my throat. I didn't use honey--didn't know it would help. I brushed often, very carefully, and it actually made my mouth feel a little better. I rinsed with warm water and baking soda, which provided a little relief. Magic mouthwash numbed the area and helped a lot. In the hospital, they put me on an anti fungal drug, in case it was thrush. The sores lasted about 2 weeks.
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I occasionally get sores in my throat; I have been on A/A since August. It seems when I feel more run down is when I get mouth/throat sores. Although the throat ones don't hurt much, they definitely make swallowing more difficult, and my ears ache too (along with lymph nodes in the neck which is always a little freaky). Also, I have either dry-heaved or thrown up trying to get food and/or meds down. Small bites, lots of (cold) liquid! And I happily found ice cream to be veryvery soothing to my mouth and throat...
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I'm still on 7.5 mg of Afinitor after two courses of 10 mg. that gave me mouth sores. I have one small mouth sore, but nothing else except fatigue. Even that is getting better.
Benjnate, Afinitor must be working for you. Have you had scans lately? I think I'll get a CT scan sometime the middle of March. I'm really looking forward to getting results.
Romansma, I have been off Afinitor twice for about 2 weeks each until my mouth sores healed. It seems that each time I went back on was a little easier. I haven't experienced what you are going through. I feel so bad for you. Are you going to a different med or just taking a break from advantix?
Our 40th wedding anniversary is this weekend. We are going up to St Augustine, FL for a couple days.
Hugs to all of you, especially if your in pain. MaryAnne
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Just taking a break to allow some healing and to finish my rads. I'm still not back to rads. Woke up this morning hardly able to swallow still. I'm so frustrated. I haven't eaten much for 7 days now. I've lost 7 lbs ( not terrible). Makes me want to run away and let the cancer take it's natural course!
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Romansma, I felt just like you. I just wasn't going to go back on Afinitor, and I was glad that my MO said I shouldn't. Life wasn't worth living with that much pain and sickness. I'm feeling better now than I have since the end of October, when I started Afinitor. I just got the results of my PET scan. Everything is the same as it was at the end of October, which seems like a good thing to me. The only active areas are a mass and malignant fluid in the peritoneum. My bones are doing well. I'm only on Exemestane now, but the next step is chemo, I think when I have a progression,
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I have been on a/a treatment since July of 2013. I have lost 65 pounds. Is that normal? I don't know how I loose the weight I eat a lot as always of everything. Has anyone else lost weight a/a??? I eat 3 meals a day plus snacks in between. I may have smaller portion but not by much.
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I guess I am puzzled a little. My oncologist told me that because I have such a hard time with SE and they have literally caused me to go AMA off treatment, that he would prescribe afinitor 10mg every other day. So far so good, I have lost 8 pounds, had some mouth sores, diarrhea, fatigue and some joint pain. My counts dropped a bit and I am getting 2 units today. Otherwise.. hobbling along like everyone else.
Why if folks are miserable are the doses not cut back? What have you got to lose if you took it every other day? You have the aromasin daily. I don't understand why a reduced dose of afinitor wouldn't be better then none. The amount of weight loss is amazing. I can stand to lose but what are the normal weight folks doing.. shoot they would disappear. I feel for you all.
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I am starting Afinitor on Monday (been on Aromasin for a month) my onc is starting me out on 5 mgs as I am the se queen - also she has had other patients that started out at 10 and they've had to go off treatment because it is just too hard on them - she said this time she's approaching it another way - i.e. 5 mgs then 7.5 then 10 if tolerable - glad she told me that I wasn't looking forward to having to bail out of treatment. BTW can someone tell me what time of day you're taking the pill - I wanted to take it at night two hours after eating but I'm afraid of insomnia - any thoughts?
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I have not had insomnia on Affinitor, but I switched to taking it in the morning because on 10mg I was getting acid reflex even with reflex medication. My onc is allowing me to split dosage 5mg in morning & 5mg at night. I still get mouth sores, but not as much. I'm also only on 10mg twice a week. My onc knows if I had to deal with bad SE every day, I would not take it.
Wishing weight loss was one of my SE, at least I'm not gaining.
Terri
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208 Sandy- I take the aromasin after dinner and the afinitor at bedtime. Sometimes I do lay there awake, or times I get to sleep. I hope this A&A combo works for you. Good luck with it.
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When I first started the A/A combo in Sept 2013 10 mg, I had bad mouth sores. Even had swelling one side lymph glands in throat. Went to ENT just to be sure it was not mets as that was the same spot my local mets began. Antibiotic and I was fine. Onc decreased dose to 7.5 in Dec. From the beginning I had taken the Afinitor with Cool Whip. Then I began taking an extra heaping spoonful of Cool Whip and have had no mouth sores since. Remember Mary Poppins' advice. "Just a spoonful of sugar helps the medicine go down".
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Warning NEGATIVE POST:
I am just going to vent.. not expecting any "fix," just bitching. My nose is broken out in zits... Rudolf has nothing on my honker. I am 55 and left zits back in highschool. I have zits on my scalp too. This sucks. My hands and feet are red and itch and tingle.. I am using hand cream. The aromasin makes me ache. I put the afinitor in yogurt and it frequently makes me gag. Can't ever remember having problems taking pills. Reflux is just barely contained with Prilosec. I am majorly tired. My painful mouth sore under my tongue is healing! Yay! But I have a new small one on the side of my tongue..boo. This too shall pass... and it can pass sooner rather than later! There now, I am done venting.
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