Afinitor/Aromasin
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thanks Teri! I have to say, I'm a little apprehensive about the afinitor. Oh well. Not much to be done except trudge forward...
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My onc prescribed Dexamethasone Elixir as a preventative. Last time I tried Afinitor the mouth sores were debilitating, but this time I've not had one.
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The trick is to get the "compounded" magic mouthwash(es) - lots of clinics have their own recipes (mine does) - it is costly but the trick is to use it from day one and then later on you can switch to salt water rinse and only use the magic mouthwash if the sores start up again - I couldn't stay on the AA combo because I had really bad shortness of breath and my blood sugar skyrocketed but my tm's dropped and so did my tumours and I was only on it I think for less than three months.
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Yes, I had that last year. I had to stop all manicures. You may want to try those nail hardening products. I lost a toenail to fasoldex the other year.
The only other thing I can suggest to keep your nails short. Sorry.Oops...did not see your other post. You need to be careful with those gel nails. They can make your nails more fragile, and be careful when you go back for your next fill and do not let them file it down to much, or everything will break down. That happened to me the other year when I tried those gel nails.
I did try those long lasting gel or vinyl polishes.... That did not work too well on me, sadly. I used to apply Sally Hansen stickers, and had loads of compliments.
Have fun!
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Diane,
It is a known side-effect that Affintor can mess up your blood sugar. I was on another med and my onc messed up when my blood sugar was skyrocketing to 300 for several months.
Forget the onc. Go make an appointment with an endocrinologist, and start to get your diabetes treated. The one definitive test for diabetes is a Hemoglobin A1C!. I was diagnosed with insulin dependent diabetes in Feb., and I have never been asked for a fasting sugar. Your onc sounds like in the dark ages with diabetes.
You will end up getting major urinary tract infections, and the fluctuating glucose levels can damage your eyes, etc.
An endocrinologist can start you either on insulin, like me, very easy with no G.I. side effects, or metaformin. It sounds like you need the insulin.
No matter what you do with your diet right now, it is not going to help until you see a doctor who specializes in diabetes, and gives you your own glucose monitor.
Some oncs are good with side-effects, others well, says Affinitor has no side-effects.... Just move on.
I ended up finding out about diabetes the hard way. I was in a store and could not get to a bathroom in time. I ended up peeing all over my clothes and the floor. It was horrible. I thought I had a uti. My doctor sent me to a lab for the Hemoglobin A1C1, and urinalysis and a glucose. He thought I would end up in a coma. I was spilling sugar in my urine.
Good luck...don't suffer.... Right now, my diabetes has gone a little out of control, since I got sick again from the cancer, and my sugars have gone crazy....we had it stable. Have to figure out this leg of it, now.
Take care,
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Hi Whildchild,
Thanks for your message. I am so glad I borrowed a monitor weeks ago and finally sent my numbers to my onc. For 2 weeks they have been in the mid 200's (fasting) and as high as 385-400 range during the day. I was sceduled for blood work with her yesterday but once she got my e-mail, she said we needed to bring in my pc doc too. So I had the blood work done in the morning and my pc put me on the metformin as you mentioned. I started that daily pill today. So now it's that waiting game to see if it works, doesn't interfere with the AA combo and I can take any other side effects the metformin might deliver.
Bless all our hearts! But, like I posted earlier, the AA showed it had lowered my tm in half and shrunk the tumor in my liver and lungs within 3 months so that I am determined to try and stay on it. Feel wiped out for sure, a bit shaky but after weeks of high blood sugar and now finally my pc saying indeed I am now diabetic, hopefully this is moving in a direction positive with the sugar levels being addressed.
Loving wishes to you and all!~Di
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Hi!
Just popped my first Afinitor pill, and my mouth tastes like metal already, mixed with the ice cream cone I had just eaten. I took my husband to the doctor with me today because I was afraid the doctor was going to say I couldn't have it. We were very pleasantly surprised. I took out the insert and read all the very unpleasant and frequent (one in ten) side effects but I don't have them yet and I am elated that I get the opportunity to try this out.
Hope you are all feeling okay today, I am starting to itch already.
Lisa
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Thea,
Glad you are getting an opportunity too. Make sure you too look over your lab results, still don't know why my onc missed my high blood sugar for months! I think she was so thrilled the AA had reduced my tm in half as well as tumors she let that blind her. I am seeing my blood sugar levels go down on the gluclose med but not fast enough to feel better. No, I take that back, I feel much better with my blood sugar level being 160 fasting verses 225 but I wish it would go lower quicker. But I have more energy than I did so I am hoping with the reduced afinitor dosage (10 mg every other day) and med to control the diabetes it gave me, I will see even more improvement.
Good Luck Thea. Drink lots of water! Rest as needed, your body is now adjusting to something new-again!~Di
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Hello Di,
It is the middle of the night and I got up to finish the Ben and Jerry's in the freezer and lo and behold, it tasted just like the sweet plastic with dirt that you mentioned in your post eleven days ago. This is excellent, if only because a pint of Ben and Jerry's costs about eight dollars here in Germany. I ate it anyway, but maybe will be less likely to buy another pint. I am not feeling nauseous really, but I definitely notice bad smells I wasn't aware of before. The air in our house smells really stale, for example, like dirty sheets. An old man on line in front of me at the store smelled so bad I had to hold my breath. I used to have terrible morning sickness with my three pregnancies, and having that kind of sense of smell can get horrendous. You can feel it deep in your limbic system as though it were going to affect the rest of your life. The interesting thing was that after I went into menopause, having had a prophylactic ovary removal, I was able to tolerate bad smells much better.
It has been interesting noting how I feel, with a kind of meditative awareness, and the first thing I noticed was that I felt funny, everything seemed more vivid, as though I had just had a shot of hard liquor. That went away after a few hours when I got busy preparing for an overnight guest coming later in the evening. I ought to go back to bed and sleep for a few hours. I am very excited, though, hoping for the best. I hope the best for you, too, especially in getting control over the diabetes. I, too, am on 5 mg. Afinitor a day, while we watch and see how well I tolerate it and what side effects emerge.
I think you will be hearing a lot from me in the next few days!
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Too bad I can't ship you the Jerry Garcia pint I've had in my freezer for 3 months as I can no longer stand icecream! Or anything creamy like pudding, cream cheese etc.
I went through the mouth and face sores, the tiredness is a shock but I think the high blood sugar has added to that se. All of those seemed do-able, it was the afinitor making me diabetic that threw me for a loop...didn't see that one coming. So hang tight Thea, we'll count our Blessings that we do have this option...wishing you well as you clothspin your nose shut for now!~Di
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had my first Afinitor last night and my head hurt so much it woke me up in the middle of the night. I have never had a margarine headache, but this sure seemed like one; it was only on the right side and it was extraordinarily painful. I had asked my Onc not to start me on the highest dose because I am small and invariably we have to lower the dosage of a majority of the chemos I have been on. Well, he really wanted me on the 10 mg. I thought my head was going to implode or explode. Not sure which. Needless to say he is lowering the dose. By the end of the day today I also have acne on me face and scalp. All from one dose. Scary stuff...
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Hi Mompsych,
It looks like we are starting the Afinitor on the same day, and luckily for me starting at 5 mg. was my onc's idea. I feel fabulous, I wonder if I won't end up manic since I am bipolar. I feel fabulous largely because I am hoping that I will lose my appetite, which has been huge for the last nine years since I started taking psych meds that cause weight gain. Already I am noticing lots of bad odors in my house that I hope visitors have not been noticing all along. It seems that I will need to febreze everything. And my appetite is considerably less and some foods already taste bad. I am starting to itch on and off in various places, but no rash yet. I don't blame you for worrying about such a severe headache. It is creepy that acne could develop so quickly. But then the medication must be working against the tumours as well. I hope you have no more headaches on the lower dose and that you can increase to ten later without incident, if that is the dose you need to be effective. I am rooting for you, and for all of us.
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Just checking in. Wishing our AA newcomers a very good, SE free day! I am now about 8-9 months on AA, about 3 months since my last side effect break. Mouth sores and rashes have left. Still concentrating on staying hydrated daily. I dehydrate within a day or 2 if I don't make sure I'm taking in tons of water. I'm tired. Bleh! No appetite and many things don't taste good. Wine tastes like crap. Used to be something I enjoyed once or twice a week. No more. I've lost another 5 lbs. Thats about 16-17 lbs in 3 months. Just wish some of it would come off my waist! Nearing the end of my 40's with a waist to hip ratio that competes with many 70 yr olds! I suppose that's the effects of the Aromasin and lack of hormones.
K, off to see if I can be a little productive today. Some days feel like resting is my norm, with little spurts of productivity thrown in here and there.
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Momphysch - can't understand why your onc would start you on 10 mg the protocol is to start on 5 for two weeks then raise to 7.5 and then to 10 - I never made it to 10 but have to say that even on 7.5 and under three months on treatment I had some regression - it is a great combo but is just too hard for some of us - wish you good luck - btw Romansma is my heroine!
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Ah, thanks. Btw, I started on 10 mg....never had a ramp up period, always at 10.
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Hey there all, glad to hear that things are going as well as can be Romansma... I took a break as well and have just passed three weeks back on. No big rashes or mouth sores. I never did get sores, just some mouth soreness. I am starting to feel more tired with imcreased neuropathy and periods of redness in my hands. Working full time still at school.... Hoping things will stabilize. Hoping and hoping, that's how it goes. Btw, I started on 10 and dropped to 5 with same regression results. I am little, 115 lbs have lost 20 since treatment started but now back to my old size.
Hugs to all
TO
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thanks for all the encouraging words, you amazing women. I sorta ripped into my Onc ( in a nice but terse way) about starting me at 10mg. He is now going to start me on 2.5mg and we will slowly work our way up to as much as I can tolerate. It's good when they actually listen! Still have to wait a few more days to get the meds due to annoying insurance crap (it has to be approved, then mailed, with about a million phone calls in between). So, I'm holding my breath for the next round and hoping my cancer cells have decided to stop multiplying for a few days...
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Hi Mom Psych,
Did the pills come in yet?
Today is Day Six for me and the dry skin and acne hit yesterday, with major fatigue today. I was thinking, if this is going to be typical fatigue, I don't know how I will function. Although I can get up and walk around, I feel extremely tired, after days of feeling like I didn't need much sleep. I was too tired to maintain much order or cleanliness, even though people were coming over, but i had been preparing for a garage sale, so maybe having the sale is part of the reason I am so wiped out. But I think I would have paced myself better and not gotten so tired if it weren't for the Afinitor. I feel kind of like I have the flu, but without feeling feverish or achy or nauseous. Also, the place in the groin and pelvis where I have the mets hurts when I try to lift my leg from a lying position, and I wonder whether the drug isn't acting on that area and causing some inflammation. I hope I don't get mood swings. I thought I might be heading towards mania, needing so little food or sleep while getting ready for the garage sale. Now I don't think so. But I listened to you Di and am drinking lots of water. Food tastes a little better now, but not having much appetite feels like my stomach is zipped shut and full and I turn down things I would have eaten before with no effort at all.
Thats all the news, how are the rest of us doing lately?
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The major issue today is really bad constipation, even though I am drinking lots of water, because I am definitely not getting enough fiber from eating so little. I am feeling very irritable and uncomfortable, and we have no laxative because the stores are closed as usual here on Sundays. I asked my husband to go to the convenience store on the corner where they might have had prunes (Certain stores, such as those at train stations, as well as gas stations, can stay open on Sunday) but they didn't have any. Perhaps going for a walk would do me some good, especially with this irritable mood. The house is a big mess from from the pre and post garage sale scene, and getting that in order would probably help me feel better, but I think I will first go for a walk to get some fresh air. We live a block from a wooded area and I should really get out there more often. I haven't lost any weight yet since starting a week ago, I think I am retaining some water. Wish I could think of a positive note to end this on. I guess I just want to thank everyone for listening to me vent, even though I am not going to write here exactly how my husband is getting on my nerves.
Lisa
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Hi Thea. Hope you are feeling a little better. Drink LOTS of water. Something about this combo leads me to semi dehydrate often! Vegtable juice and smoothies help too. I take senna occasionally for the constipation, but taking magnesium daily helps the most. Our skin being dry is a big indication That you aren't getting enough fluids. Drink up!
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Hi Romansma,
I feel much better today, managed to go yesterday without a laxative and also drank and drank, although that is usually not a problem for me, I like to drink seltzer water that I make with a Soda Club machine. I am feeling very well today and pretty confident about things. I find that things do taste okay now after all, but still I feel no particular craving to eat more than I need and I am only on the 5 mg with plans to go to ten since I am not having any heavy side effects yet. I guess we will only know for sure after my first blood draw on Monday.
I hope we all have a good day.
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hello ladies, just checking in. I am about 8 months into A/A and doing well. I started at 10mg right away. Scan next month. I got mouth sores the first 3 months and none since. I had to steal my sons acne cream and it seems to work"ish". Headaches only lasted the first month.
Issue now is a bit of edema in feet and hands. I remember Romansma feet pix a few months ago and am not that bad yet. Romansma, how is that edema going now? MO gave me some Lasix but said to hold off using it as the fluid will just come back. Latest problem? finger nails disintegrating. I have been using the gel or acrylic tips but I know I have to be careful of a fungus infection and other issues as mentioned by Whildchild. Oh, yeah, and the insomnia but a bit of Serax helps there when needed.
I am feeling really tired but I attribute that to the fact that kids have been off school 7 weeks longer than usual due to teacher strike. Today is their first full day back to school since mid June! I am sitting at home in my easy chair and not doing ANYTHING today!
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Shoot, sorry to hear about the fluid retention. I haven't had a problem since it got so bad over the summer. I stopped AA for about 2 weeks, drank tons of water, and got serious about my whole foods diet. Not sure what it was, but I still have problems with electrolytes getting low and feeling dehydrated at times. I just keep taking in 2-3 liters of water a day, stay away from anything packaged or processed, and I've cut dairy and most wheat. It seems to be working. Hope you can get it under control soon!
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My diet is becoming a little healthier lately, and I have to say that although I have less appetite that food tastes normal again. I am drinking plenty of water and have given up Diet Coke, to which I was really quite addicted. I am still on 5 mg. of affinitor and hope that things go well when we get to a standard dose which I assume would be 10 mg.
I have been in the fetal position on the couch half the day all week because of various stressors unrelated to the new combo, and my husband will be in the US on business for nine days starting Saturday. He also told me this morning that he has had a major breakthrough in his career which I imagine will mean he is even less available to us as a family. I don't know how much of this is depression caused by Affinitor or just the physical adjustment that it has meant, but I have dealt with it by taking long naps while the children are at school or otherwise occupied. I have a teenager with a disability and that is one reason I dread it when my DH goes away. I will keep plugging away and try to stay present for all of this. I am really looking forward to my first blood draw on Monday to get more info on the Afinitor and how I am doing on it, and whether they will increase the dose right away.
Romansma, good to hear that your whole foods diet seems to have made a difference in your side effects. Giving up Diet Coke is for me a first step in that direction, and I am also making do without sweets and such and getting by on less caffeine. Thanks for your recent response, and hello to all of you on the forum.
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My GP added a diuretic to the Valsartan I was already taking to deal with my high blood pressure. I will start taking it tomorrow, and start drinking even more water. I hope I don't get the side effects listed. Who would have thought a diuretic would have all kinds of side effects? But it says it could make you tired, weak or drowsy. It would be nice to avoid the onset of edema, though. I felt much better after seeing the GP though, because my blood pressure was 158 over 110 and I was feeling my heart pound and was generally weak and nervous. It calmed me down a lot just to know I was doing something about it.
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Stay on top of that. Hope you feel better soon.
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quick question and I apologize if this has been covered. My onc has only put me on Amomasin. Is that common? Thanks. This is fairly new and I am trying to educate myself.
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I was on Aromasin for two years after my first bone met, they added the afinitor only after the second bone met because the Aromasin by itself was not working.
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Hi to all of you!!! I am so happy that the AA combo is working for you all!! That alone is great news!!!
I am now doing Chemo IV (taxol). I've had 5 treatments and my cough is barely there now. I have no bad SE's so my oncologist told me that I will be at my son's wedding in May! My body is handling the taxol better than he thought it would!! I had so many bad SE's with the oral drugs that he is really pleased with how I'm feeling! I have a great appetite, I've lost my hair (no big deal), I have more energy than expected and no pain and I sleep well!!
You all have been so supportive that I wanted to let you know the latest!!! I will check back in when I can! I finally got a new laptop and now I can get on here anytime of the day and night! In case you didn't see my post: I now have bone, lungs and liver mets! I am not letting this disease steal my joy and peace though! I am still in the fight!!!
Love, Judy
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So good to see you Judy - I monitor this site but of course had to give up AA a few months back - good to know that the Taxol is working so well - I am meeting with MO tomorrow to hear about my latest round of scans, etc. I haven't had any treatment since AA and would like to stay off treatment while I feel good but your having such a good experience with the Taxol has raised my spirits considerably tonight - thank you for that!
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