Afinitor/Aromasin
Comments
-
after being on A/A since middle of July I am now NED!!! YIPPY,however my side effects are not great, blood sugar through the roof on insulin , no real issues with mouth sores(but do stay away from spicy and hot foods) use MUGARD to swish if I feel anything weird going on . my sense of taste is awful... my joints hurt and I am exhausted all the time...HOWEVER I work full time as a Custodian at our local high school ! have 5 grandchildren , and many friends who keep me always positive.
I have even lost 16 lbs since July and thats a PLUS. its a hard ,but my Quality of life could really suck and ya know what , I AM DOING GREAT AND HOPE YOU ALL GET THERE TOO> I pray that this works for quite a few years!! I got 2 years of NED on Femara(generic !) so I am happy camper........................... STAY STRONG LADIES WE CAN AND WILL GET THROUGH THIS0 -
Thanks, Rosie, it's so good to hear that Afinitor is working for you. I've only had 3 pills so far. I'm starting to get itchy and have some acne. I have lotion for the itchy skin, but does anybody know what to do about the acne?0 -
Rosie, my sense of taste was awful, too, then I read on another forum about taking zinc supplements. I ran it by my onc who said it might work - and it does! It took a few weeks but gradually things started to taste good again. I'd say I'm 90% normal on taste now.
Leah0 -
So good to hear that Afinitor is working. I has not been easy for me. About 2 weeks after starting Afinitor, my bone pain became so bad that I could hardly walk with a cane. So tired that I slept over 12 hours at night and a nap during the day. After painful mouth sores which did not go away, my mo told me to stop it until the mouth sores clear up. I stopped Afinitor last Wed. I am feeling much better now just 4 days of no Afinitor; less pain, mouth sores healing, more energy. I will be going back to it but every other day 10 mg. I hope that the 2nd try goes better than the first. Anyone else with lower dosage?0 -
I'm on 5mg right now, but my MO plans to increase it at some point, I think in another. I've only had four pills. Last night I had quite a bit of itching and I have some acne this morning. So far, that's all. I am encouraged, though, that so many women have had good responses from Afinitor.0 -
does anyone know why Afinitor isn't considered to be chemotherapy? I'm just curious. I know it doesn't matter what you call it.0 -
pcrandall, thanks for the candy reminder!
Afinitor is considered targeted therapy because it targets a specific metabolic pathway that cancer cells need in order to grow, but normal cells have much much less need for it. Chemo hits ALL fast growing cells, both normal and cancer. There is some overlap at the cell level, but this is a sort of simplistic way to think about the difference.
I had mouth sores for a while, not too bad, and lack of taste, along with nausea. Then I had to take a break due to cough and needed CT scan, went back on full dose after that was clear. Interestingly, SEs have been better since the. Break. Food taste is about 80 pct better, acne still there, rare sore tongue and mouth, less nausea. Go figure!0 -
Thanks, Linda. That's very helpful. I'm only on my fourth day, and I have acne and itching, but nothing else. Do you have any advice for dealing with the acne?0 -
I too had to stop taking mine because of mouth sores. I just started back a week ago and two days later was already getting another one. I havent taken it the last couple of days. I'm going to call my oncologist Tomo to see what he wants me to do. I can not deal with these mouth sores! It feels like it hurts all the way up into my face and that all my teeth hurt. I'm guessing he will lower my dose. I will keep you posted!0 -
I have been putting my afinitor in the marshmallow cream since the beginning and it hasn't helped at all. Was telling my oncologist that I read about that on this site and he sorta laughed at me. Pretty sure it's from being in your blood and not from touching your mouth or throat...... Or at least in my case, covering the pill hasn't worked.0 -
Oh my gosh..... I too have been eating more sweets, craving sweets! I've never been a big sweet eater except around that time of the month. So is the medication causing this?? I just keep gaining and I read wear some ppl lose on this combo!0 -
I hear from alot of the ladies about losing weight on this medication but for me that's not the case!
(. I just turned 47 and in the last year and a half I have put on 16 lbs and I'm not liking it at all. I seem to be hungrier and wanting sweets more than ever. I'm afraid if I dnt get a hold of myself that I'm gonna keep gaining. I have had to come out of work and in sure that is part of the reason. In the beginning stage of this dx I lost way down actually too much, so everyone keeps telling me that i need to keep on some weight in case I get to where I cant eat again...... But they aren't the ones that can fit in their clothes anymore! The mouth sores are what keep dragging me down and of course all the aches. Is there anyone else that's appetite has increased since taking this combo?0 -
It's so odd how differently this combo affects us. I've never had a single issue with mouth sores, my blood sugar levels are fine, and my sense of taste hasn't diminished (although my appetite has, and I've lost 20 lbs., deliberately, on this combo). That's the good news for me. Otoh, I keep fighting off cold-like symptoms and a runny and sometimes slightly bloody nose (I'm seeing a ENT specialist tomorrow to see if he has any advice), my triglycerides are far too high, and my calcium levels are too low, even though I'm eating healthy foods and taking calcium supplements. All of these symptoms are listed as potential SEs of Afinitor, but I don't find many others on these boards with my SEs. My MO assures me that I'm having a great response to this combo, so I want to learn how to deal with the SEs, particularly the recurring cold-like symptoms.
Oh, I do seem to be making headway against another SE, which is weak and easily torn toe and finger nails. After applying an anti-fungal ointment to my toenails, I used a nail polish containing "silicium" on all my nails. It seems to be helping a lot. Also, I originally had a good deal of nausea and diarrhea when I started on this combo, but I found that ginger supplements helped eliminate the nausea and a prebiotic/probiotic supplement got rid of the rest of my gastro-intestinal complaints.
Just a few random observations. I so wish everyone the best of luck with this combo!
Hugs and love,
Ingrid0 -
I am so happy for those of you who are doing so well on this combo. Unfortunately, it isn't being kind to me. I have had a fever all weekend, the acne is out of control. It's all over my right eyebrow, and my eye is almost swollen shut. I've got a call in to my onc to see about reducing the dose or taking a break from ir.0 -
Hi Granna,
I definitely didn't have an easy time of it when I started on this combo, and in fact I had to have my afinitor dosage reduced (from 10 mg to 7.5 mg). That helped a resolve many of my SEs, but as I mentioned above, I'm still trying to figure out how to deal with others. I think that reducing the dose sounds like a good idea for you.
I didn't mention my own acne issues, but I continue to deal with that, although it's gotten better, One topical that seems to help is Retin-A, which fortunately I already had on hand thanks to anti-aging vanity. My acne also hit me right above the right eyebrow, along with several other places. I also caught a stye in my right eye while on this combo--fortunately that resolved very quickly. I followed a pharmacist's advice and applied chamomile tea in a cotton ball to my infected eye, as well as an OTC treatment called "Stye."
Not sure if any of this advice helps, but I wish you the best of luck! I hope this combo can be made to work for you and that you feel better soon!0 -
Thanks Inky! I'm om the 10 mg. I hate to stop it, because people seem to get good results. Still waiting to hear from my onc.
Granna0 -
Inky, I've been wondering what to do about the acne. I tried using Retin A once for wrinkles, but it was much too harsh for me. Maybe I could just dab it on the blemishes, though. Is that what you do?0 -
That's what I do, alright, and I do think it helps. I know that it was originally prescribed as an acne medication. I have noticed that my own skin, in general, is more sensitive than before I started taking A/A. You also have to be careful about using a sun block with Retin-A because it makes the skin more susceptible to UV radiation.
Good luck!0 -
I think this is the beginning on my fourth week on A/A. Last week, my tongue felt kind of sensitive and then a few days later it felt like someone used a cheese grater on it. Now, I have five large ulcers on my tongue!! I have to do something. I have used magic mouthwash before but I don't want something to numb it, I want something that will help it start healing. I read somewhere on this thread about rinsing with water and salt but I can't find that post again. What do you recommend?
I have lost 10 pounds in 4 weeks, which is good with me. I do not have an appetite at all. Nothing tastes the same, everything tastes like it has been dipped in salt and food is just not appealing at all. I need relief from the mouth sores. The other side effects I can get through.0 -
I started taking Biotin for nails & hair about a month ago after I lost about 1/3 of my hair and my nails have been ripped into the nailbed while putting on LE glove & sleeve. YIKES!!! So I trim them very close, file as smooth as possible, coat with a nail hardener. Someone on another thread had suggested the Biotin, and I am not a big fan of supplements, but my hair lady said it would help, and I think it may actually be true! Hair loss rate is down a bit (although it might have been going to slow down anyway) and the nails SEEM a bit less fragile. Maybe it is just wishful thinking.
Acne suggestions???? I have NONE. More breaking out on my chin today. Could it also be stress related as I had PET scan today and see MO tomorrow.
Weight has actually been pretty stable, despite some nausea, no taste and no appetite - probably making up for it by all the sweets! But I walked right by the candy dish last night without taking a single piece!0 -
I got the results of my CT scan today and talked to the oncology nurse. The cancer has spread to the peritoneum. There is a 3x5 cm tumor and malignant fluid. My bone mets are better! Does anyone else have mets to the peritoneum? I'll see the MO next week, but I'm thinking this is really bad news. I don't think I'm up to looking on the internet for the prognosis.0 -
Mary, yes, I had mets to the peritoneum. Where is the 3 x 5 tumor? When this nightmare started for me back in November I had mets to both ovaries, both tubes, the uterus, peritoneum and there was a large tumor the the pelvic cul de sac. It was the tumor that created havoc for me. The tumor pressed on the ureters and my right kidney decided to shut down. I have struggled with kidney issues since.
I had surgery to remove the ovaries but once they found mets they pretty much closed me back up. They left the tumor and the uterus. After surgery, I started on Abraxane which failed. My first scans showed progression. Then I moved on to a clinical trial but got kicked out because of my lack of kidney function. Now I am on A/A. If I don't find something to help with the ulcers all over my tongue though I don't know how much longer I will continue to take it. I wish you all the best over these next few days as a treatment is put in place. If you want to talk more, please feel free to PM me.
Stay in touch and let us know how you are doing.0 -
Hi, Susan. The tumor is in the left mid abdomen. The nurse said it's between the abdomen and pelvis. I don't know what to think, because you're the only other person I know with this metastasis! I always just thought bones, liver, lungs, and brain. I had just gotten somewhat reconciled to the bone mets and now this comes along. I was sure hoping to have more time before another metastasis.0 -
Susan, my PCP gave me a paste called Oracort E for the mouth sores (I was very fortunate that I only had 2 at the beginning and nothing since). I don't know if it can be used on the tongue as opposed to the gums but I don't see why not. You also might want to talk to a dentist, since they deal with the whole mouth, not just teeth.
Best of luck.
Leah0 -
The latest bone scan showed progression on the spine so I will be switching this week. Thank you for all the information and help, everyone. Best wishes.0 -
I hope your new treatment works for you for a long time. Best of luck.0 -
Mary, I am so sorry go hear of the progression(hugs) and hope your onc can find the next bullet to control the cancer, I know how very frightening it must be for you. I am waiting for word on when my ct will be as tumor markers have doubled in 3 months. I am managing the afinitor except itching skin, drives me nuts like I have dermatitis. I lather on moo goo to try and keep the skin hydrated as it's not like acne to me but red bite looking pimples that itch like crazy. I have a back scratcher and last night was going crazy scratching my back then wrists, top of feet, calves etc and after slathering on the moo goo it soothed enough to sleep thank goodness. I've put on a ton of weight and was overweight to start with so that's not good having the stress on already aching knees. Nothing wrong with my appetite or taste and thankfully no further mouth ulcers. Love Gail0 -
My onc has taken me off the Afinitor until my acne clears up. She prescribed an antibiotic and gel to put on them. I have never seen an eye as swollen as mine, fever, extreme fatigue. Had a mini meltdown today, but I can't wait for some of this to get out of my system. She may lower the dose based on the healing of the acne.
So happy for the folks it is doing fantastic work on, and I hope I can get this in control. This has been my hardest treatment ever. I need to get my mojo back. Good luck to all of us on this drug combo!0 -
Granna, wow, you've really had a rough time! Maybe you can tolerate the lower dose once your acne clears up. I've never heard of acne making your eye swell up and causing a fever! Hope things get better fast.0 -
thanks MaryLW! Saying lots of prayers!0
