Afinitor/Aromasin
Comments
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Thanks Rosevalley for your input. Sounds like your 10mg every other day is a good plan for you. My oncol. would not budge on a lower dosage of Afinitor until I have problems. I do not have liver problems at this time and haven't, thankfully. Yes, the sternum area can really hurt, but no where near where it was 2 years ago prior to stage 4 diagnosis. Thanks for wishing me well, and ya know I'll keep y'all posted.
jeanieb, a journal sounds like a good idea! Good luck in taking your A/A combo too. I too am thankful I can come here and read everyone's posts. Just seems somewhat easier knowing other BC people are going thru or have gone thru the same thing.
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Hi Lane,
I'm fairly new on the boards..I have just started A/A treatment beginning of February. First month my onc had me on 5mg and now my refill went up to 7.5mg this month. I was on femara, Xgeva treatment for the past 20 months for mets to bone. Femara had to go because my recent Pet/ct showed two tumors in the left lung. Mediastinal region. 1.3 and 1.9cm tumors and some nodes. So her treatment was afinator and aromasin. I am responding because I noticed you have similar disease as me and feel somewhat fearful of A/A treatment especially because of the lung involvement. What should I be looking out for? From what I read in your post and others is that One of the members passed because of a complication from this and I am worried. God rest her soul and be with the rest of us struggling as well.
I feel so terrible on this treatment. Fatigue, rash, mouth sores, achy, pain increased from lack of movement..and it's only starting my second month. Is this treatment worth it? I'm so scared. I feel I'm in danger either way.
Thank you for reading,
Dana Marie
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Day 4 and diarrhea has started already. Does anyone else have problems with this all the time or is it just a matter of your body adjusting to it, or does it just show up whenever it feels like it? I know this is such a minor SE but it does keep me at home.
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Dana 27,
I too am taking Xgeva shots ( was reduced to every other month as of last Nov. -prior to that had 7 monthly Xgeva shots) and had been on Femara (for 15 months) until last week after cat scans showed a tad growth on one tumor in my lungs and I have multiple tumors in my lungs as well, but, femara has kept them all down or stable except for the 1. There were 2 lympth nodes that grew some too since previous cat scans. So out Femara goes, in with A/A combo. I also read the lungs could be effected by this combo. I spoke to my oncol. about it and he calmed me down and said the A/A combo will help the tumors in the lungs, not hurt them and assured me he wouldn't put me on this if he thought otherwise. I think what we need to look out for is shortness of breath and to call your oncol. if you do experience this. Dana, are you continuing taking Xgeva shots? Hope this helps. Dana, I hope you start feeling better soon too.
Anyone else taking Xgeva shots and on A/A combo?
I think we need to hear from the people who have been on A/A combo for a good length of time and see if they are still having side effects and how successful their A/A combo treatment is for them.
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I've been A/A since July, and most of the SEs did get better for me. At first I had problems with diarrhea and nausea, including some vomiting, but both of those SEs went away when I started taking a daily probiotic/prebiotic supplement. I started with the 10 mg dose, but I had it dropped to 7.5 mg because of my SEs. I've been extremely fortunate in that I never had a problem with mouth ulcers. I do use a Biotene-like mouthwash several times a day, but I suspect I've just been lucky in that regard. I've had a few pimples here and there, but that SE has abated for me as well.
The SEs that I'm still dealing with mainly involve nail problems. In fact, just today I saw a wonderful podiatrist who cut away an extremely painful nail that was digging into the cuticle bed on my big toe. I also showed her the following product, which I heard about on another forum and received in the mail this weekend, and she was very approving of the ingredients:
http://www.mosaiclife.co.uk/product/chemo-nails-on...
For my fingernails, sometimes I just keep them as short as possible and apply nail strengtheners and other lacquers. Other times I get frustrated with how weak and short they still are despite all my best efforts and apply artificial nails--I always cut the artificial nails down afterwards to what I consider a normal length, which also gets rid of the French manicure look that I don't particularly like.
My other ongoing SE is a bit of bloody discharge when I blow my nose in the morning, but I also get Herceptin every three weeks, so that particular SE may be related to that.
My apologies for not posting for a long time on this board. The good news for me is that my tumor markers keep trending downwards and are nearly normal now. I still have a small supraclavicular lymph node that has shrunk since I began A/A but is still about 1 cm long or perhaps a bit more.
I hope that everyone here will be as lucky with this regime as I have been.0 -
I've only been on A/A for less than three weeks and only 5mgs but had to discontinue Afinitor today as I seem to have picked up an infection - upper respiratory it seems - sore throat, feverish (but low fever), exhausted and somewhat short of breath when coughing which was worse Friday and Saturday - anyhow called the onc and they want to see me tomorrow told me to discontinue Afrinitor till they see me - what to rule out pneumonia (so do I!) I've had no mouth sores, but am using a form of magic mouthwash prophylatically (sp), no diarrhea either - but am rather tired all the time (going to see about getting Ritalin) - I hate sitting around being sick - and I am running out of books to read!!!!!
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Hi Sandy,
I remember having a bad flu as well shortly after I started on A/A. I was nervous about it because I'd heard that Afinitor can cause lung problems. In my case, at least, the infection went away and was chalked up to a seasonal virus. But I'm glad that your oncologist is being cautious. I so hope that your fatigue clears up soon, along with your lung infection.
Btw, I joined audible.com when I was first diagnosed with BC. According to my library, I've listened to/read over 350 books since then, so it's been a good coping strategy for me. I even listen to books when I swim; a good book can really help me extend my workouts. I know that many libraries these days have a large selection of audiobooks for those who don't want to spend the money on a subscriber service.
Good luck tomorrow!!
Ingrid
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Thanks Inky - I'll let you know how it turns out - I'm thinking "flu" as well.
S.
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inky, thanks for your update. That is good news that you had minimal SE's and your tumor makers went down and nearly normal. This is good to hear! Thanks for giving us the heads up on products that have helped you. Hope to see more posts from you in the future.
I hope other A/A users that have been on this combo for a while will post and let us know how they are doing please and what their tumor markers have done since taking A/A. Sandy, hope things work out for you and you start to feel better. Please keep us posted.
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Has anyone run a low grade temp, 99.2 to 99.5 on this. I started A/A Friday and Friday night I had a low grade temp that lasted about an hour. Yesterday I had one all afternoon, no other symptoms other than the temp and I can always tell when I get it. I did this when I took Taxotere but I knew when it would hit and it lasted only about 8 or 9 days every afternoon, I took Tax every 21 days so it would get out of my system but with Afinitor it is always in your system. Just wondering if anyone else has had this problem and did it finally go away after you adjusted to this.
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Turns out whatever I have is viral and not from the A/A combo - back on the Afinitor tomorrow - still have a temp 99 (high for me - my norm is 97 or below) told to check in with onc's office on Thursday if stuff still hanging on - told to rest and hydrate - works for me!
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Did anyone experience prolonged tongue problems, even after stopping A/A? I was on A/A for 4 months and stopped 4 weeks ago because my scans showed it wasn't working for me (liver tumours got bigger and more numerous). I had so many SEs while on it that my quality of life was worse than when I was on chemo (8 years ago). Anyway, the worst of the SEs was my tongue. I had a few painful sores but worse was that I lost all my taste buds and had a horrible metallic taste all the time. I postponed the start of chemo to try to get my tongue healed before starting but it's been 4 weeks and though my taste buds are improved, I still have an awful tangy, tingly feeling on my tongue all day and night. It feels like I burned it badly or I am eating those candies kids like that pop and fizz in your mouth. I start chemo tomorrow (Taxol) so its not likely to heal until after that's finished. My onc says it is not common for SE to last so long after going off the drugs. He thought it might be a yeast infection and prescribed a nystatin rinse but then he glanced at my tongue and said I dont have that infection. I'm concerned the A/A caused changes in the environment in my mouth and now things are out of balance. I used biotene and 2 other non alcohol mouthwashes while I was taking A/A and since but they are no help. Sometimes I use the chemo mouthwash just because it numbs my tongue completely so I get some relief from the bad taste and feeling. Any info much appreciated.
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Could it be that the tongue numbing mouthwash is the problem? What about getting a scrip for magic mouthwash - it's expensive but it has made me not have such bad taste bud changes as I had on chemo - also do your non -alcohol mouthwashes contain peroxide? The drug information that came with my Afinitor said not to use any mouthwash that contains peroxide. Hope you find a solution. Sending hugs, S.
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Thanks for the info and hugs 208sandy. Actually the mouth numbing mouthwash is Magic mouthwash so I don't think that is the problem. Thanks for the tip about peroxide - I'll check the ingredients lists. I hope the A/A works well for you. S
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Hi too all, Good new, bad news. I just had CT of my chest and abdomen. No new mets, but what was there before around my stomach and colon has increased but not much. My tumor markers have gone up slightly as well. I have to say it is somewhat of a relief.
I have been on the A/A combo since stage IV progression was discovered the end of November. I was started on 10 mg. but had to stop 2x in the first 2 months because of mouth sores. MO decreased A/A to 7.5 mg. I developed one mouth sore, but not nearly as bad.
Besides the "normal" fatigue, I really have no other negative SE's.
I am going to stay on the A/A for another month or two since we don't know if the dx would be worse without it. Meanwhile my husband and I will get a second opinion. My MO is very supportive of this idea. I don't know who we will see yet.
I am so sorry to hear that some of you are having some bad side effects with this combo. I really hope and pray that you can get control of them and you will go into long term remission!
Hugs to all, MaryAnne0 -
I have a lot of tongue sores on Affinitor, as well as on my face. I stopped for awhile due to bad allergies & a bad cold with an infection in my throat & tongue. I'm on antibiotics for a week.
Terri
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Hi All, Good news from last PET scan==no sign of cancer on bones or in liver. Chemo embyo worked! Hope it stays away for awhile. I'm putting both A/A pills into 00 gel tab that I order from Amazon. One easy swallow and no sores at all. Legs ache all the time now even on pain meds. Feet swelling===probably from increased sugars. Have added a low dose water pill every other day which helps some. I'm just so excited that warmer weather is starting to happen! Very tired of cold, snowy winter. Ohio was bad, but East coast far worse. Spring is emerging!!!!
Terry
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Hi Terry,
That's such wonderful news! All those appeals that you had to make with your insurer, but it paid off in the end! I was looking for some good news, so thank you so much for posting,
Btw, I'm having some of your morning moringa as I write this--I took break for a while but I'm back on it.
I'm wishing you a long, long, long affair with NED!!! Enjoy the spring weather!
Ingrid0 -
I cannot decide whether or not to take my Afinitor today. Doc says stop if mouth sores start or sore throat persists, so I stopped for about 2 weeks. Now only one place on my throat hurts just a little and it even got better after getting back on the drug last Fri. I'm supposed to take it Mon & Fri. So.
But I also had a UTI and just finished the antibiotic yesterday. The bacteria was staph so I was a little worried. It was dramatic with lower back pain and blood in the urine. Kinda scary.
Of course I wonder if staph is what's in my throat. My eyes were full of yellow crud this morning.
I think I'll take the Afinitor.
If the throat and eyes get worse, or I have a fever, antibiotics will handle it. Yes?
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Jimmie - what dosage Afinitor are you on? If you've got an infection you probably should call your onc and check in - they may need to give you a new antibiotic and onc may also suggest you stay off Afinitor again for now - the very first se listed on my printout from drugstore is "infection".
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Restarting Afinitor momentarily......stand by............
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Me too after a bacterial throat infection---I'm not taking the 10mg dosage anymore, just the 5mg until I talk with my onc next month.
Terri
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I went back to 10 mg after a 3 week break for a pretty bad case of mucositis.
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I'm on the 10 mg but only Mon & Fri. Went ahead and took it, small sore spot on throat is still getting better. I see onc next week and will request 5mg if still struggling. Hoping if I can stick it out this will be a manageable chemo, seems like many have struggled the first few months then settled in for years of effective treatment.
My last treatment was 8 mos of IV chemo with taxol+avastin so this should be easier, I hope.
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I hope it's easier this time Romansma, as you really suffered this past month. My latest issue with this crazy med is my feet and ankles have been swelling and itchy. My onc thought edema and ordered a 3-day supply of water pills, which did nothing. Moving around more, drinking more water, and swinging my legs up over the back of the couch is helping. It's always something with this crazy med, but I do think it is still working for me. Hang in there everyone!
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Romansma, I'm hoping the second time around will be much easier for you. Good luck!
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Thanks guys! I really want this to work. I really believe this combo can be effective.....just need to be able to tolerate it! Hope everyone is comfortable tonight.....my pain meds are kicking in right about now, so I should be off to slumberland shortly.
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I wanted to check in with y'all and report how I'm doing since I started the A/A combo two weeks ago taking 10 ml. Afinitor. All in all, I've had minimal SE's to speak of. I had a few scalp sores that went away on their own the following day, a few nose bleeds that lasted with two blows in Kleenex, and just a little irritation in the mouth/tongue area. I had chills two days in a row which lasted an hour or two. I will have lab work next week, and get my results from my oncol. the following week. I'll report back to y'all then to see what's up or down for me. I noticed my sternum area that has been so swollen is going down some! I am swishing with salt water 3 times a day, then using biotene moisturizing mouth wash directly following that. I use the marshmellow crème covering Afinitor. I drink 16 oz. water directly after taking the pills. I tried the 00 empty gel caps and I couldn't get it down. I do have trouble taking pills. I wanted to calm the newbies down some with regard to worrying so much about taking the A/A combo. Wish me luck and good luck to everyone!
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One week back on AA and all is fine. Some scalp irritations and some dulling of my taste buds. On to week 2 of the AA replay!
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naturegirl2 - I also started on A/A two weeks ago. I ran a low grade temp for several days after starting it and have had a bloody nose for a week whenever I blow my nose, diarrhea off and on, I have had no mouth sores but do have a sore tongue and taste is off along with no appetite, also my hand and foot syndrome seemed to get worse. I developed an itchy rash Thursday, called the onco's office on Friday and they took me off the of Afinitor and said if it gets worse to call, so I called yesterday it had spread more and they started me on a steroid pack and said to come see my doctor on Thursday, he is only there on Thursday, so will see what he says. I really think he will have me go back on it or cut the dose and try that but if not I will move on to another chemo, and this is so much easier than the chemo, I think anyway. I really felt this was working, so I am hoping to continue with it. My left lung had to have fluid removed from it 2 weeks ago and my right one hurt so they said if I needed to I could come back and have that one aspirated but it does not hurt anymore and the pains I had in my stomach area are gone also. I hope things go well for you.
Romansma - I hope that this time you do not have to go off again and can continue with minimal or no side effects.
I have noticed my hair is starting to fall out again, not that I had much, it was starting to come in a little but I noticed last night it was coming out pretty good again, I thought maybe I would get my hair back on this so we shall see.
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