Afinitor/Aromasin
Comments
-
Good news Mary!
I received a call from the pharmacy yesterday that they are overnighting the Afinitor to me. Should have it today. Relieved and scared all at the same time.
Is anyone taking probiotics with the Afinitor? If so, is it working?
Edited: just received delivery from a dude in a hazmat suit and gas mask. Just kidding. It's here.....YIKES!
0 -
Romansma- glad the med got there.. the bag is pretty funny. It's probably a good idea to keep it away from kids, but the bright alarming colors attract them! Catch 22. Hope your treatments go well and you tolerate the drug.
MaryW- Sounds like the liver labs came back great, glad it was just an infection! May improvement continue!
Got the PET report back really fast, and good news it's all still in the bones, no movement out of the bones. My H&H just need some transfusion assistance. Only been a couple of doses but so far the afinitor has gone down fine.. full glass of water. Can't really say I notice anything in particular. I already take Prilosec so I hope that continues to help. Lots of drugs bother my stomach/ reflux.
They had a beastly time trying to access my port this week, two different times for blood and then the scan. The thing is tilted and moves, after multiple attempts they got in and got a blood return for the isotopes/ flushes. It's worked just fine since 2012.. weird. I hope it continues to work, I have horrible veins.. but to have them have a hard time accessing the port too! Just not fair.. of course the cancer isn't fair either. All of you here already knew that!
0 -
Romansma - your comment cracked me up! I've been on Afinitor close to 6 months - that's 6 deliveries I've gotten via UPS - and it never came in that scary bag. Just a normal plastic bag (inside a huge box for some reason). About the probiotics - I eat a Activia about 4 times a week and I think it does help. My appt is this Thursday and I am going to ask if a pill would be better. I feel really good on Afinitor, but it causes stomach issues sometimes. Personally, I hope I get to stay on this med for a long time - I hope you'll feel the same way. Good luck!
0 -
Danishgirl, no liver mets ☺️, but I'm still on Afinitor, at least for now. I guess it's good to stay on the Afinitor since the next step is chemo.
Romansma, I take probiotics and I think it probably helps. I've only had a few mouth sores, although I have one right now.
0 -
Rosevalley, be vigilant about the acid reflux. Mine got out of control and I was really in bad shape. Right now I'm on 80 mg of Prilosec a day and also some other chalky pill that coats my esophagus and stomach. I also cut out coffee and alcohol.
0 -
Took my first dose last night. The only thing so far is acid reflux. Woke up at 4 am, and then again when I had coffee. Might have to give up my java.....oh no!
0 -
I am starting on Aromasin/Afinitor - the Afinitor in four weeks, the Aromasin today - I was supposed to go on Faslodex but onc changed her mind and said that would be "next" treatment - is that unusual? I haven't been able to tolerate AIs - but was lucky and stayed stable for two years but now there's progression so hoping that this treatment is tolerable.
0 -
I was on Faslodex before Afinitor, but I don't know what the usual progression is.
0 -
I took Faslodex with Femara until my progression.....now on Afinitor and Aromison.
0 -
I have only taken Afinitor for a week. Can't really say as I have noticed anything weird or uncomfortable. Until today and I have been in and out of the bathroom all day. Loose stools... so unless it continues I don't know if it's afinitor related. I take afinitor 10mg every other day. If any of you have had this SE, did it go away on it's own after your body got used to it? Did you intervene in any way?
0 -
I've only been on A/A for a month but loose stools/diarrhea are definitely a side effect. It's only been occasional. I haven't had to take anything .Mostly I am DRY DRY DRY. Dry skin,dry mouth, dry nose. Uncomfortable but manageable. Pretty good overall as I was a little freaked out to start these meds. Hopefully you will do well. If you get severe diarrhea your doc can give you something. Kelly
0 -
I'm finishing my fourth month and not doing well at all. My scalp is so sore, I have acne, and now I'm getting mouth sores. Also, early on, I had severe itching and went on Prednisone. That took care of the itching, but now I think I'm suffering from steroid withdrawal, which is just horrible. I've been so sick for 3 weeks, and I think it may last a lot longer. Be wary of Presnisone!
0 -
MaryLW- that sounds miserable. I don't like the steroids either. When I got them for taxol.. I used to just pace the chemo room like a tiger in a cage..awful. I just felt like I could crawl out of my skin, so jittery. I refuse them when I get transfusions. I hope you find a way to come down peacefully.
Do you take the afinitor every day? I take mine every other day and MO said the SE are less and patients tolerate them better. I can't tell you for sure because I have only been on it for a week. Just got my order in the mail today. Maybe ask your onc about dosing? Hope it gets better. (((HUGS)))
0 -
Rosevalley, I take the Afinitor every day, but only 5mg. The MO keeps saying we'll need to bring it up to 10. Yikes! I think my next treatment will be Xeloda, and some MO's say the SE's are less than Afinitor. I hope so! Good luck to you, and I hope things continue to go well.
0 -
Day 5 and so far not bad. Acid reflux multiple times each day and sometimes in the middle of the night. Taking probiotics and burying the pill in a spoonful of yogurt (not a fan of marshmallow cream).
Interestingly, my daily aches have lessened a bit. Maybe it's the switch from Femara to Aromason?
0 -
Romansma- Are you taking something like Prilosec for the reflux? I take Prilosec and just LOVE that drug. It works so well for keeping the reflux burning issues at a minimum. I have been sticking my pill in applesauce and taking a big glass of water after that. The pills are nice and easy.
Glad your aches are better. Hope it works.
0 -
Absolutely get the acid reflux under control. I'm back down to 40mg of Prilosec per day, but I took 80 for awhile!
0 -
I see my Onc on Thursday and will get something for the reflux.....for now all I have is Gaviscon and it's definitely not sufficient. I took Nexium while on Abraxane and TAC and it worked well.
Just a thought......some say that those that get side effects on certain treatments are actually getting more benefit from the drug. Does anyone think that is true with Afinitor?
0 -
I hope it's true. My SE's are increasing as time goes by. It kind of makes sense to me that side effects mean the treatment is working--at least it's in there doing something!
0 -
Well I got my first small ulcer on the inside of my mouth, between the lip and gum. So I guess not enough salt water rinses. I need to take afinitor tonight. It's not real big ulcer. That was quick, thought it might take longer. Also have a slight headache that can't seem to shake.
Whenever I take ibuprofen I get mouth ulcers, tiny all over. Just miserable. I guess this might be the same.
0 -
Hi- Just wanted to check in and say that I've been on the A/A combo for about 2.5 weeks now. So far I have had no side effects except for dry mouth and dry skin ( which could actually be from our dry winter weather where I live). Was at my onc's yesterday so he could keep tabs on how I was doing and see the blood work numbers. He was shocked I had no problems; I mean really shocked. All my blood numbers are good. My last progression really rocked my world. I had only been on Faslodex for a short while, and things had grown quite a bit in the original tumor area. I'm pretty pleased with how things are right now & hope they continue for a really long run.
I do a lot of research about breast cancer. When this last progression occurred, I was learning about the ketogenic diet and its effects on it. After my sister sent me a book by Elaine Cantin and how she tweaked this diet to get rid of her breast cancer, I decided what the heck, so I put myself on it a few days after I started A/A. Since then, I've lost 9 pounds (I have plenty of pounds to spare and love losing estrogen-making fat), my blood pressure (typically 159/89 on med) is now 124/77, my appetite and cravings have really lessened, and it seems like my thinking isn't foggy anymore. It's a tough diet but I'm only going to do it hard core for 2 months and then go onto a regular low carb diet. Since the diet has strong anti-inflammatory properties, I'm kind of thinking that it may be helping to keep those A/A side effects away. Thought I'd pass this along in case anyone would be interested.
0 -
Day 7 and no real side effects on this combo. Saw doc yesterday and she thought they wouldn't show until weeks 2-4. We shall see, but so far, so good!
0 -
I just want to give a different perspective on this combination Affinitor/Aromasin......there is so much fear and I think that it would be healthy to describe a fairly positive experience.
I have been taking these two drugs since January 2012 along with a monthy Xgeva shot and I have had little side effects. At the beginning I was on the 10 mg pill and did have some changes in my taste buds and some fatigue. When my blood counts dropped a bit my doctor changed me to the 7.5 mg pill and ever since things have been great. I do not use marshmellow cream to take my pill but instead simply take a big drink of water before I take my pill and then take several big gulps after. I have the very occasional mouth sore but these occur because for some reason I have put my fingers in my mouth......usually to check gums for some reason or to make sure my teeth are presentable after a meal when in public. (sorry, TMI). Other than that, no mouth problems. I no longer have fatigue and in fact go to a personal trainer twice a week and then perform cardio work 3-4 times per week. I no longer think I have taste bud changes...(at least things seem to be normal). I have no joint pain and the only possible thing I can report is that my finger nails, not my toe nails, split and crumble and that I sleep 9 hours a night instead of my normal 7-8 hours. For me, this is the best possible scenario as my scans heretofore have been steadily improving. BTW I have bone mets, many, many, too many to count all through my skeleton but they are so far getting better. I also happen to be triple positive which is a change from my original diagnosis. I know this could change at any time and again, my only purpose in writing this is for those about to go onto this combination that it can be good, not bad.
0 -
Emma, thank you for sharing some positive words about Afinitor. I am only just starting it, and took my third dose this evening. I am taking it with Faslodex instead of the Aromasin.
I'm very hopeful I'll have few side effects and a great response. I hope your great response continues! ~Yama
0 -
Emma, thanks for your post! The SE so far have not been too bad for me either. Only one mouth ulcer and it's healing. I have gotten loose stools.. not quite diarrhea, but that's not every day I take afinitor. Maybe the dry skin, but it's been cold and heat in the house makes skin dry.
I hope everyone gets the response you have had, wouldn't that be great!!
0 -
Faeriequeen: Great news on the weight loss with low carbs. I did that last year and lost 2 to 3 lbs a week for 5 months. I went off of it when I had new bone mets & had to go through radiation, but I really need to get back on it. I had a Quest bar daily that really helped with the hunger & had 19 grams of fiber & protein. You can get them at GNC--they are the best bars I've had. I feel a little bloated on Affinitor & it would be better for me to lose the carbs. Good Luck & thanks. You just gave me incentive to get back on it.
Terri
0 -
Thank you for posting your good results from the A/A combo. Really good to have some Good news. Was your primary ILC or IDC?
0 -
Emmapeel1 - Thank you for your post. I was to the oncologist on February 6 and after a year and a half on Taxotere it has stopped working. My markers have not gone down in the last 4 treatments so he did not give me the other 2 for this round. If I was not so sensitive to it he would have kept me on it for the maintenance that it was doing, as my markers had remained steady but since I only had 11 good days out of 21 he said it was not worth it and would like to switch me to the A/A combo. I have been reading on here to catch up from the beginning and thinking I do not want to do this combo. I am thinking about asking if there is something else equally as good but after reading your post I will think harder on that subject. I also took Xeloda for a year by itself and when it quit working went on the Taxotere/Xeloda combo. I do want to be prepared for this drug if I am put on them. I took Femara in 2009, it worked for 2 years and when it quit he switched me to Aromasin, took that for 3 months but it did not work so went on Xeloda in 2011 for a year, then it quit working alone so was put on Taxotere along with X. Now they have stopped working so have to be switched again. If anyone has done either of these alone or together how does the A/A combo compare to the Xeloda or the Taxotere? What are some of the things I need to have on hand before starting this stuff? I can look at food and have diarrhea so I stay away from fiber as much as possible and have Imodium on hand, although the Xeloda would constipate me, that is a first for me in my life, as soon as I was off for the week I was fine. The X also causes the hand and foot syndrome so am familiar with that, the Taxotere caused me to lose some of my toenails and I think I am going to lose a couple of fingernails so am use to that, also got thrush from the Tax, diarrhea, no appetite, very, very low counts like .1. Food and drink tasted awful, no appetite, very, very fatigued, in bed for 7 out of the 11 days that were the worst, then I could be up for a few hours each day, very off balance, foggy headed, along with chemo brain, just some of the problems I had with Tax. So now I am wondering does the A/A combo cause hair loss, which does not matter since I have none from the Tax, problems with nails, skin issues other than the mouth sores, any other things that I need to be aware of and some things to have on hand before I ever get going on this stuff. I am very leary about going on it due to the diabetes, it runs in my family anyway, my sister, father, cousins, grandparents on dads side. My mom had COPD, lung problems. I take medicine for cholesterol, triglycerides were a little high after taking the Tax/X combo but not enough to worry about. I take Coumadin due to having a blood clot in the lung back in 1993 after starting Tamoxifen, so they doctors have continued the Coumadin. I know this is long and I am probably worried for nothing but I just wanted to stay on the Tax because I knew what to expect and usually could take it every 3 weeks for 6 times then I had 2 or 3 months off before starting it again. Do you take the A/A combo all of the time or do you get a break from it from time to time? How long did it work for you before you had to move on to something else? How long after you started did you see results from it? Thank you for your help on this, it is always scary for me to go on to something new. I do appreciate all of your help.
0 -
Hello Ladies
Writing here after a while. Its been around two months since my mother started with Afinitor along with Aromasin and it had been an fair journey with major issues.But two weeks ago she was tested positive for diabetes and today she was feeling breathlessness.
I read one feels breathlessness due to afinitor. Is it common SE ????or needs special attention and checkup??
0 -
I had to stop taking Afinitor due to the side effects. I did ok for three months, taking 5mg. My main side effect was intense itching. The fourth month did me in, though. I was really fatigued, could hardly get out of bed, had trouble breathing, constant headache, extreme acid reflux, and then the biggie--mega mouth sores. Couldn't eat or talk. I ended up in the hospital with pneumonia. My MO said I just couldn't tolerate Afinitor. So now I'm just taking Aromasin and trying to build up some strength. I'm having a PET scan Friday, and when there is progression, I'll go on chemo, but not until I'm recovered from this set-back.
0
