Afinitor/Aromasin
Comments
-
anoone else having issues with HIGH blood sugar ... mineis in the 3-400 working with reg doc to lower it but after 5 days not much of a change
0 -
Rosie,
I have high blood sugar with Afinitor. My onc said it is a known SE in some people. I take metformin twice a day for it. My sugars went up when I was on steriods last year. They told me to just accept high sugars as a SE and ignore the numbers. I stopped checking as it would stress me out even more and I have no option but take Afinitor. I am not spending my last days eating a sugar free no carb diet!0 -
Formygirls, your attitude about diet is perfect! I know the routine labs include testing glucose each time I see the MO - once a month right now - but I refuse to have the cholesterol checked as I don't plan on taking meds for it. I try to keep a healthy diet, struggle to get any exercise I can with the fatigue winning more often than not, so there is no use even looking at the numbers! Sort of same attitude right now about scans: we can follow the local recurrence tumor size, we know I have bone mets, and it really doesn't make any sense to do more scans if the local tumors are stable and I don't have any more symptoms.
0 -
I don't have high blood sugar on the A/A but my cholesterol is now 302. I'll be seeing my PCP next week about it and I assume I'll go on statins. I'm the opposite of you, Linda - at this point I'd rather deal with it this way! I've kept it down for years with good diet but right now, with the A/A my appetite is so poor and my taste is so off that if what I can eat is full-fat cheese or butter then that's what I'll do.
Well, at least I know the doc won't suggest weight loss for my cholesterol - I've lost 20 pounds on this drug and I'm down to 108 pounds.
Leah
edited to add: Angelfalls, I'm delighted to hear your good news!
0 -
Leah, I was on statins before my dx, but them when I started chemo my onc and GP both said to stop taking the statins and stop checking cholesterol levels. I won't die of high cholesterol at this point, and my liver has enough to process without the statins to deal with too (they are hard on the liver)
0 -
Latte, I think the way your docs and you do. Statins ARE hard on the liver, and they also can make diabetes worse for some reason (Lipitor has been linked to diabetes). The statistics show that people with high cholesterol have a higher risk of cardiac disease, but surprisingly, not EVERYONE with high cholesterol dies of a heart attack or stroke! And many people with low cholesterol have strokes and heart attacks. So it is very difficult to predict FOR AN INDIVIDUAL patient whether the risks are really high or not. And there is some evidence to suggest that statins need not be continued to manage cholesterol in people over the age of 75 (I think) who have no other risk factors. That being said, you can also find evidence to the contrary. The studies are often contradictory, and what is the busy practitioner to do???? Recommend? Not recommend? I think it gets back to what the patient and provider are comfortable with, including having realistic expectations as to benefits, risks, SEs, drug interactions, expected life span with or without the drug, and quality of life with or without the drug.
0 -
I don't know if it is connected, but my liver function has not been good ever since I first did chemo 3 years ago. After I stopped the statins a couple of months ago, my liver function is back in the normal range. So I'm happy about that.
0 -
anyone else have through the roof blood sugar since beginning A?A ??? I had to start on insulin to try to get mine lowered!! I was already on meds for type 11, but now on insulin I am really nervous.... how many meds can I shove in my old body !!!
0 -
My bloods are fine, but I've developed gallstones since starting A/A. Anyone else, or is this just a non-cancer ailment?
0 -
Quick question A/A users - I have been on this for about 9 days and can't believe how great I feel! Honestly, it is almost scary as I am kind of waiting for the proverbial other shoe to drop. I haven't felt this well since pre-cancer days in 2009...has this happen to anyone else?
0 -
bump
0 -
benjnate, I felt pretty good on afinitor/letrozole for a long time, mostly a little fatigue. Had a minor rash early on, it comes and goes. Overall, I have had intermittent SEs that have been annoying (nausea being the worst and fatigue competing to tie for first!) but there are definitely days that are better than chemo!!!!!!
0 -
Thanks Linda, I hope it works for a long time, but don't we all? And every time I read your comment from Sheldon Cooper, I crack up
0 -
Very good news!! thanks for sharing.
0 -
I've started on Afinitor 5mg this week after trying the 10mg for a week. The 10mg gave me horrible mouth ulcers so I had to stop and wait for them to heal. I'm trying really hard not to obsess over every creak, rumble, gurgle, pain etc. It's amazing what goes through your mind when you start a new drug! So far, I've been slightly nauseous and dizzy but that could be stress.
Best of luck to all of us doing our best to tolerate our treatment.
Linda
0 -
pinkshirtnow... try taking your pill before bed and drink a lot of water after.. I also use the Mugard rinse before bed every night 4 weeks and no mouth sores ..
0 -
Started my A/A 13 days ago. Had a migraine off and on for 4 days, and felt feverish the first two days. Other than that, no SE's. My family came and we spent a week in Tahoe. Hiked, sat at the beach, wandered around the shops, and ate. It was great! I did have to take a nap a couple of times, but other than that, no problems. I was kind of worried about the mouth sores, I've struggled with them occasionally and had one just starting to heal the day I started on the Afinitor. I did start taking a probiotic before starting the meds, and started using the Biore mouthwash. I've also tried to avoid anything I think might be too acidic.
Saw the MO today, and my tumor marker is down from 73 to 69........okay, guess it doesn't mean much, but we take every little piece of good news we can, right?
0 -
Anyone else having intermittent sudden nosebleed that lasts only a few minutes? I have had a spontaneous bleeding that just felt like a runny nose, out of nowhere, not blowing it or sneezing or anything.... just dripping blood, then within 2-3 minutes of holding light pressure, it stops and that's the end of it. No clot that blows out later, like the usual nosebleed. This has occurred several times over the past few months, and seem to be getting more frequent, several times a week.
0 -
Linda, I've had the same thing. It's pretty annoyiing. I carry tissues no matter what though fortunately I've always been home when it happened (so far).
Hmmm.... maybe it will start during my onc appt Thurs. Interesting if it does.
Leah
0 -
I started affinitor about 4 days ago and I've had a migraine headache on and off for the last 24 hours. Anyone have this side effect and know some tricks. I'm sort of thinking I may not be drinking enough water. Aspirin helps, but between the Aromison, affinitor, vitamin D, and previced I take...I just hate taking more pills.
0 -
LilSchatze, water is your friend!!!! Drink, drink, and drink some more! It may or may not help the headache for now, but it will help keep your mouth rinsed out (less chance of mouth sores), keeps your system flushed out .... if your pee is clear, you are drinking enough, if it has any color to it, you probably need to drink more (sorry to admit, I have been backsliding on the water myself for about a week, so this little pep talk is really aimed at ME!! LOL!!). Best wishes, hope this drug works well for you.
0 -
Thanks Linda!
0 -
SOOOOOOOO since beginning the A/A protocol i have become a type 1 diabetic on insulin 4 x a day ! have lost 9 lbs. but no mouthsores yet (about 5 weeks in ) ......... I have frequent bouts of Dirreaha , and last night the biggest case of night sweats ever ..............
but have to wait until mid october for a pet scan to see if this works ..........
0 -
LilSchatzie when do you take your Afinitor? I was told to take at night to avoid most of the side effects. I typically take a couple of hours after dinner with something small to eat. Also as someone else mentioned, you must drink a lot of water with Afinitor. I've never had mouth sores. I typically put the pill in a teaspoon with yogurt and swallor it. I then drink lots of water. Best of luck with Afinitor. I've been on it in combo with other drugs for almost two years and the side effects do get better.
0 -
Pearlady, I am so encouraged to hear that afinitor has been working for you for 2 years! My MO is following me monthly with blood work and checking the size of the tumor in my armpit rather than doing scans or tumor markers, which is A-OK with me! The tumor has NOT gotten larger in 6 months, not sure if it shrank a little or if it is wishful thinking, but I am hanging in there with a far better quality of life than I had anticipated! Outside of the LE flare, I might even think I was back to 75% my old self! (I think age has taken at least 10% and cancer treatments the other 15% - although my aging seems to have been accelerating since cancer diagnosis... so maybe I can blame cancer for 20% and aging for 5%?).
I have mentioned this before: my specialty pharmacist told me that afinitor has both local and systemic effects that lead to mouth sores, but mostly it is the systemic effects that are to blame. So he said coating the pill with marshmallows or other stuff probably doesn't do much to prevent the sores, but good oral hygiene with lots of rinsing, and drinking a full glass of water with the tablet can help. For what it's worth.0 -
Hello, everyone. I will be joining the AA group shortly. I was dx'ed with bone mets (pelvis and spine) a month ago. I was on Tamoxifen since the first dx 2 years ago. I switched to exemestane (Aromasin) and waiting for insurance approval for Afinitor. Thank you everyone for posting the side effects. It gives me what to watch out for.
0 -
Pearlady, I'm glad to hear you have been on affinitor . 2 years is great!
I've been on affinitor 8 days and still no mouth sores. Originally I was taking it will marshmallows, but the last two days I have been taking it without anything. So far so good !0 -
I've been on this combo for about 1-1/2 months and haven't had any mouth sores. My onc told me to take it with cool whip, and I take it right before I eat breakfast. The only thing I've noticed is acne-like bumps on my arm and on my scalp. Anyone else have this? At least it's not on my face! It hasn't affected my appetite, and I haven't lost an ounce! I gained about 5 pounds on faslodex, and I wish they would go away! I had pain in my left hip when I got up in the morning which would eventually get better, and since the a/a that seems to be improved. I'm hoping the next time my tumor markers are down.
0 -
Anyone else have nausea with afinitor/aromisin? On Sat, day 15 of this treatment, I woke up with another migraine and nausea. Threw up all afternoon and felt nauseated for the last 5 days. I'm not sure if it's from the meds, the headache, not enough water, or all of the smoke we have in our atmosphere from the Yosemite fire. It is so smokey we can't see any of the surrounding hills at all, looks like fog. We do not have air conditioning, so are stifling with the windows closed, just trying to use fans to circulate some air. We finally decided to head out of town for a few days starting tomorrow. I don't think there is any end in sight for this fire. Meanwhile I am trying to force more water down!
Granna 1948, I too have acne like bumps on my scalp, hopefully they will stay there instead of our faces and we will keep our hair! I have not had much of an appetite the last few days because of the nausea, but all of my clothes are still too tight. I gained 12 pounds when I had chemo in 2009, and struggled to lose 6 of those pounds. Everyone associates chemo with losing weight. Ha! all of my pants are still too tight. Sounds like you are doing well on the A/A combo though, and that is encouraging to me, I'll take my weight going up if my tumor markers go down!
0 -
Yes, I have nausea since starting this round of 5mg Afinitor about 10 days ago. I threw up the first few days but I'm doing a bit better. I try to eat small meals throughout the day to try to control it. It's not horrible but I am always on the verge of throwing up.
I also have acne on my scalp and unfortunately on my face too. I've always been a bit prone to adult acne but I hate this. The pimples take longer to heal too. Sigh.
I have been diligent in my mouth hygiene but I have a few small mouth sores. They are not too bad so I am hoping that they will be manageable. When I was on the 10mg dose, I got huge ulcers and it was horrible.
Just like everyone else, I'm just doing the best I can. Hang in there everyone!
0
