Afinitor/Aromasin
Comments
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hi chefmiche--just a quick one--wishing you the best on your new treatment! i just saw your post.<3
hi dragongirl--thanks for the encouraging info--i'm hoping the lung thing will resolve. now, just gotta find out why my estrogen is going crazy. wishing you the best on your journey!
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Does any one have drinks while one this drug combo. A few wines at night or a couple beers?
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Ah yes, there is "Udderly Smooth" also referred to as Utter butter, and Bag Balm. My nurse recommended the Udderly smooth but if my recollection is correct, it contains a component that the manufacturer of Xeloda says not to use, or I read that about hand foot syndrome in general somewhere, but check me on that. Look up the prescribing info on the Xeloda or look up hand foot syndrome and see if certain chemicals in hand creams are not recommended. I think it was lanolin, which is found UN many hand creams. Anyway, I found that it burned when I applied it. Most of the hand creams that you might find at the drug store did. Bag Balm is more like Vaseline, very greasy, but will help keep the moisture in. If you get yourself some of those gloves and socks meant to keep in the moisture of a cream and wear them at night after applying the cream or bag balm, that will help. I got a great pair of both that were fuzzy and soft and lined with something that had aloe vera in it which was released when you wore them, at Bed Bath and Beyond. You'll just have to see if wearing them at night bothers you (it can make you warm). They also make plain white gloves and booties made of cotton which serve the same purpose, available at most drug stores. The trick is to avoid getting your hands and feet wet and if you do, tapping them dry rather than rubbing, with a towel. Also, I used bacitracin on the skin where it sort of became very red, especially at the joints in your fingers, overnight. I covered the spots with bacitracin and band aids. And, I got a pair of those biking gloves that have the tips of the fingers cut off when my hands were especially sensitive. That helped protect the palms, joints and edges of my palms and reduce any pain during day to day activities.
Really I found the Ammonium Lactate Cream very useful and not painful to apply. Also, get a reusable ice pack with a soft surface. When it burns, usually at night, that can be a life saver to reduce the pain, applying cold. Also, I found a natural Aloe Versa Gel (with no additives) helped with the burning and that helps heal the skin too.
Best of luck with the Xeloda!
DG0 -
As I mentioned, my doctor has taken me off of Afiitor. I have an unopened box of 28 and also 3 pills in foil (10 mg). Would anyone want these? I guess they are expensive so hate to throw them away.
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I'm good but thanks.
DG0 -
Hello! Another newbie joining the discussion!
After 16 months of trying one treatment after another with little or no success, I started A/A a week ago and so far, so good in terms of SEs. The main things I'm dealing with are: a burnt tongue, but no sores yet; a tight, wheezing chest an hour or so after taking my tablets, but that soon passes; a slight rash on the sides and back of my neck; and dry white wine tastes like sucking Aspirins - bleurgh!! If things stay like this, I'll be a very happy bunny, but I'm prepared to put up with SEs if this treatment'll work for me... I'll have a CT in about 12 weeks to see what's going on... Fingers crossed for all of us!
Thanks to everyone for sharing their experiences and tips - it's been so helpful to read this thread. Hope you're all having a good day!0 -
Suebus - Yes I usually have a glass of wine every night, but I've found that red wine kind of burns my tongue when on Affinator/Aromasin.
I've had a horrible time with mouth sores. The last one took up the whole tip of my tongue and turned into a deep ulcer that actually scarred my tongue. This is my 4th restart on Affinator (my doctor is very hyped up about Affinator) and he has given me a regular mouthwash, a prednisone mouthwash, and a gel to put directly on the mouthsores should I get them again. I've found beer is a little less acidic and if I do feel a mouthsore coming on, I switch to a beer. Life is too short to start limiting myself now. I don't do any worse than my friends that don't drink.
I've also gotten the OK from my onc. to drink. He says the pills that I take are probably much harder on my liver than a drink everynight. Enjoy your wine!!
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I have a question about mouth ulcers. I have had a very sore tip of my tongue for a week or so, no obvious sore, but hurts like the devil. Is this possibly an early sore or one that is just small? I have been really paying attention to pushing more water, swishing my mouth with water almost constantly - swish & swallow water every 5-10 minutes, and salt water rinses when I can get to it.
I have not enjoyed white wine for most of the last 2 1/2 years - had just started liking some of them again but then started afinitor. I do seem to enjoy Malbec or Merlot, very small glass once in a great while. I used to like my single malt scotch, but haven't even tried it for over a year. I kind of don't even want to try it because if it doesn't taste good to me, I will be very disappointed - feel like I may be better off not knowing for now!
I may be starting Xeloda soon - I know the MO will give me all the instructions & details, but I assume if I go on that I will discontinue letrozole and afinitor. Any comments or experience with this?
I don't post much here, but read every day. I have been at this for so long I just get tired and don't feel like I have anything to add, but I want you all to know how much I appreciate your comments and help here. Thanks! And may you all have as few and mild SEs that I have had on this combination so far! (I just wish it would work faster for me!)0 -
Hi Linda. I'm surprised your Onc didn't give you a mouthwash.I tried everything prior to getting a prescription. all I can suggest without a prescription is ambesol for tooth and gum numbing. I know exactly what youre going through. those sores hurt like hell ... especially on the tongue!
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Linda,
Unless Karen 2012's doctor said the anbesol is a good idea, I would be cautious about using that to relieve your pain. I don't know what's in it, but I'm sure it is designed for tooth pain where the gums/tissues are intact. It is possible that using that on an open sore could damage the tissue or make your pain worse. Karen, did your doc ever recommend that to you for your mouth sores? Pls let Linda know. I just finished advising someone else that when in doubt, or in pain, don't be so shy about calling the doctor for help or an answer to a question. I used to be afraid to call my doctor when I had a problem because I didn't want to seem a complainer, or "bother" him. After seven plus years of this ride I am over that.....you are your own best advocate and your doctor is there to help you as much with side effects as the treatment itself. Call him/her and ask for help with your pain! I'm sure she/he will gladly call in something for you, so don't be so shy. Speak up!
Feel better.
DG0 -
P.S.
Salt water swish? Not so sure that is a good idea either for these chemo induced sores, run that by the doc while you are at it.
DG0 -
Dg, My onc recommended salt water and baking soda rinses 4-5 times a day to try to prevent chemo mouth sores. (1 tsp of each in 8 ounces of water)
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Not long after I started the Afinitor I had one really bad sore. My PCP gave me something called Oracort E oral paste which worked very quickly. It specifically says NOT to use it for viral, bacterial, or fungal infections. It contains lidocaine so even before the sore heals it feels better.
I also swish with warm baking soda and water. I was told to use that before chemo a few years ago.
Leah
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Thanks for the suggestions, ladies. I have Biotene from chemo days, and I detest it - it is the nastiest stuff ever (my opinion only, some don't mind it so much), so am using the bicarbonate swishes for now. Luckily have only had the tip of my tongue sore and no obvious sores, am just trying to be preventive.
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Trivia question,
Has anyone experiences muscle spasms secondary to taking aromasin? I seem to have twisted my neck but the spasms just wont stop. It started after I began the aromas in but before I started the Affinitor. I was on aromasin only before, a few treatments ago before the combination was approved by the FDA, and don't recall this problem. Just wondering. Had a c spine xray and did not break anything...a few more days of this and I'll have to break down and ask for an MRI. Just a bit worried my bone disease progression might be the cause.
Thanks
DG0 -
I have been having lots of muscle cramps in my feet and hands, but cannot really remember just WHEN they started relative to the meds I am on. Was it the Zometa? I think they were worse after the first infusion, am pretty sure they were worse after the last infusion, but they also occurred before it, I think ... could it be the letrozole or afinitor???? Diet and electrolytes not balanced??? I think a lot of our SEs are due to combinations of our drugs and environment, and so maybe we would have some of the problems anyway, the drugs just tip us over the edge, especially when combined with so many other meds. Then again, that is just MY theory .... nothing I have ever read supports this idea, but then again, I don't remember reading anything to even SUGGEST this idea ... then again, I don't really remember much of what I read these days, LOL!
DG, I hope you get to the bottom of this - neck pain is so much worrisome than hands and feet cramping up.0 -
Linda, hand and foot cramps are due to a lack of estrogen so definitely could have started with the letrozole (I used to get them from tamoxifen). I found that taking 200-400mg pure magnesium as a preventative measure each day got rid of them for me.
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Wow Linda and Latte!
I thought I was the only one awake at this hour! (I live in the US on the East Coast). I have insufferable insomnia as well. Latte, what time is it there? Linda, are you an insomniac too or are you in a different time zone?
Linda, you crack me up! I don't rememeber anything anymore either! But, I think your theory is correct. Latte, thanks for that, I'll run it by my onc. The hormone blockers have always given me aches and pains but not muscle spasms like this. At least I can rule out the Affinitor since it all started before I started those pills. 6 days and no apparent SEs from the Affinitor....but I'm no fool....just enjoying the honeymoon!
Now to bed with me!
Night night (or good morning, afternoon, whatever to you two!)
DG0 -
I'm in Israel, it's lunch time here!
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Hi Gals - Yes, my onc recommended anbesol... but I'm not sure it would work for everyone, or everyone's onc would agree.
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Does anyone else have suppressed appetite with the Afinitor? I just have no appetite, and food tastes bland most of the time. I did the ultimate taste test to see if it was me or the things I was eating. I had chocolate ice cream and my reaction was, "Well, it's, y'know, OK". Definitely my taste has been affected. I've also lost 10 pounds in the 7 1/2 weeks I'm on this drug, and I really didn't want to lose anything.
Leah
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Leah, OMG, YES!!!! Nothing tastes good to me, I am forcing myself to eat because I am so underweight and cannot afford to lose much more. DH took me out today for a belated anniversary lunch at a little hamburger/ice cream place, one of those you put your order in at the window, sit outside at picnic tables in the sun & breeze. Something I really love doing, a little 1950s-ish. I did not even want any food at all, but ordered the spiciest thing they had, with jalapenos, and it tasted so bland. I ate the whole thing, didn't want ice cream. This loss of taste has been a slow-onset SE; I don't remember if it was as bad at the lower dose. Just one more of life's pleasures taken away from me.
BTW, I am in Central time zone, and yes, I have problems with insomnia. Ongoing all my life, much worse the last few years despite drugs for sleep. Usually I play a little hand-held game (Freecell) which usually calms my brain, but it didn't work the other night.
Having some difficulty posting due to bandages on dominant hand for LE. Ugh. Pleasure of gardening, writing, painting & drawing now gone. Chemo took away piano due to neuropathy. Am very tired of "being thankful" and tired of others reminding me to "be thankful" and am truly sick of telling MYSELF to "be thankful." Seems that's all I say to myself all day long - be thankful, find joy and beauty and love all around you .... not so easy this week. Thanks for listening. Tomorrow will be different - maybe not better, but things always change! Namaste and Peace.0 -
I have a question about mouth sores. I have been on Afinitor for about 15 days and since Thursday my mouth is covered in sores. I am in extreme pain, cannot eat or drink anything and also have a low grade fever. My onc called in Magic Mouthwash but it has not helped. I have not gone to ER as my fever has not crossed 100. I am so miserable and already on the lowest dose of 5mg. This is my worst side effect. I can deal with nausea, diarhea, fatigue. Any suggestions. I have been using oragel, hydrogen peroxide rinse, magic mouthwash, canker gel. How long does it take to go away? This is one of my last drug options and my TMs were down on Friday so I hate to stop something that is working but I cannot do this much longer. I cannot talk or swallow either without extreme pain.
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For my girls,
I think you should call the onc and let him know what is going on. Maybe he can titrate you down even further, like one day on, one day off the Affinitor, until you heal up some more. If you are having a positive response to only 5mg it must mean your tumors are responsive to a very low dose of the Affinitor, or maybe even just responding to the Aromasin alone? Were you ever on a hormone blocker alone after you became ER+? Just a train of thought that might be worth discussing with him, but I don't know what you have had or not.
Another thought would be to contact your dentist. Some do have experience in dealing with these cancer drug side effects, or he may know another dentist who does that can advise. In any event, definitely call back the onc. Sounds like you are at your wits end and need some immediate relief to get your head in a better space. They don't give out purple hearts in this army so ask for help from the doctor.
Remember to breath and if you have anything for anxiety, take it. Our bodies our very complex and the stress alone could precipitate mouth sores in a healthy individual (the immune system and so on). Look at the problem from all sides (mind and body) and take whatever steps you can to address it.
Prayers for you and warm fuzzy thoughts with a cool breeze in the wind for you to breath in to soothe your poor mouth.
DG0 -
For my girls,
I would stop the hydrogen peroxide. Not that I am a doctor, but I did a brief stint as a patient care assistant in an ER and at one point was pre-med. My recollection is that hydrogen peroxide actually destroys tissue. It is used as an antibacterial but if your mouth tissue is already damaged, the hydrogen peroxide may be making it worse? Did your doctor tell you to use that? Just wondering. Read above as a few folks made some suggestions that you did not mention you tried, but definitely call the onc and be seen. The "fever" is somewhat worrisome for having perhaps picked up a virus (a cold or whatever) or minor bacterial infection which could be compromising your immune system and contributing to the severity of the mouth sores. You know, the chemo could have started it all and now you have a little cascade of increase in severity of the sores from a secondary problem, or, visa versa. Anyway, we don't want you getting dehydrated from not eating or drinking so plz call in.
DG0 -
Dragon girl,
Thank you so much for your suggestions. My fever increased and I ended up coming to the ER just to be safe. I am there right now getting all kinds of tests. Long night ahead. I do not take Aromosin as I am very weak ER+. I take Afinitor with Xeloda, Tykerb, Herceptin and Zometa. I have never been on hormonals. I have been on non stop chemo since Feb 2012 and these sores with Afinitor are probably the worst I have felt. I called the pharmacy and they also told me to stop the hydrogen peroxide mouthwash. I will go back to Biotene. Thanks again. I just needed some kind words as I am at my wits end.0 -
For my girls,
I am so glad that you went in....not glad that your fever spiked but glad that you are getting some help. I know the ER just sucks. I hope you have a good nurse who is sweet and kind to you, and doctors the same way. Sometimes, that is not what you get, but hopefully you did. If not, put the !*%$! on your tablet/laptop and let me have a word or two with him/her!
Ask for something to calm your nerves like xanax or something and try to get some sleep while waiting for test results. The IV alone (hopefully you are getting some fluids) should make you feel a bit better when you wake up.
(Oh yeah, befote you sleep, ask them to call the oncologist on call for an assist with what to do to help you with your mouth discomfort when you go home. Sometimes the ER docs are not as familiar with such things as one would hope, and a knowledgeable solution is necessary NOW. Don't be afraid to push, OK?
Sending you hugs.
DG
Keep us posted.0 -
Formygirls I hope you are feeling better. My thoughts and prayers are with you. I agree with Dragongirl regarding the Hydrogen Peroxide. I belive I read on the Afinitor website that you should not use a mouthwash with Hydrogen Peroxide while in Afinitor. Please let us know how you're feeling.
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I take Aromasin/Afinitor both after I eat breakfast. I am on day 6 of the freebie 14 day supply at 7.5 mg. Last night was the first I started noticing hand and feet tenderness and sore throat. This morning my pain meds take away the throat issue until noon. Waiting for the Magic Mouthwash prescription to be called in. I put oil on my hands and feet for relief and try not to have water very hot. I noticed a little drop in energy after starting Aromasin but change my nutitional drink around and energy is back. I will try the marshmellow cream. Would peanut butter work? I am suppose to go to the 10 mg at the end of day 14. New journey!
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Leah, I don't really have suppressed appetite from Afinitor, but the issue is that I get full and bloated very quickly and can't eat that much at one time. I need to eat very small meals and then sometimes an hour later I'm hungry again. The only side effect I've had with the Afinitor are the gastro issues, which can be challenging. I have also lost weight since starting Afinitor. I've been taking it at different strengths for 1.5 years. What I have found that helps the most with appetite and bloating is prescription strength Pepcid. I take the Afinitor and Aromisin before bed. I'm thinking of switching to the morning, but I'm kind of nervous with my work schedule.
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