Afinitor/Aromasin
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Been on 5mg Afinitor 3 months along with monthly injections Fasoldex. Fatigue and swelling in ankles. Compression hose which I had hoped would help swelling hurt legs and feet and cannot wear. Also difficulty sleeping at night.
Anyone dealing with feet and leg pain? Considering taking the Afinitor every other day. Thanks for your input.
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See
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I haven't started AA yet but I'm supposed to start December 31. I just checked and my Afinitor is 10mg, Aromasin is 25mg. Should I ask my MO if I could start on 5mg? Just out of curiosity, without reading this whole thread, what SE seems to be the most common here? I read about the mouthwash, so I will get that to try and prevent mouthsores. The most serious seems to be pneumonitis praying I don't get that one. Have any of you had to be hospitalized for it or some other SE?
Just trying to be prepared as possible before I start this TX. Seems like some of you have also had loss of appetite and weight loss. I could afford to lose a few pounds but it does not sound fun. 💞
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Want to stay at 5mg. Afinitor. Could not take Aromasin due to increased body pain so my oncologist switched me to monthly injections of Fasoldex.
My doctor said Afinitor can cause ankle swelling which I have plus decreased appetite and fatigue. Take Tramadol and Celebrex for body aches.
I am a great granny so have lived a long life. Feel bad for you younger ladies.
First diagnosed 2000. Re-occurrence 2016.
JEN
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Hi Grannax2, Looks like you and I are on the same path at the moment. I had an ultra sound biopsy a couple weeks ago and will start Afinitor next week. I was amazed they were able to find and biopsy my one teeny liver met, but they had no problem. Hope it is the same for you. Plan on some R & R after biopsy. I would say it took a couple weeks to feel "normal" again.
My MO is also starting me at 10mg dose of Afinitor. She says only about 50% get mouth sores and pneumonitis is very rare. Fingers crossed.
Jenflorida, Sorry you are having an issue with swelling legs and feet. Afinitor and Fas is an interesting combo tx, hope you have good results. I was on Fas with Ibrance for over 3 years and it was a relatively easy tx. Congrats on living a good long life, hope you have many more years to enjoy grands and great-grands!
Joyner, Sorry last tx has failed you. Looks like there will be several of us starting this tx soon. It will be good to be able to share our experiences.
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jobur. Thank you so much for sharing your experience with a U.S. BX. The info that it was easy to find is encouraging. I so hope that happens for me too. Yes, it looks like the three of us will need to share a lot to help each other.
Jenflorida I'm a grandmother and I too really feel for the younger ladies with young children to raise. I'll be 71 on Christmas day. I'll ask my doc about just taking 5mg but I bet she'll say try the 10mg first.
This is sure going to be a busy week for me. I'm sure for many of us. I went to Christmas #1 yesterday. It was so fun, but a very long day. Tomorrow I go to my daughter's in laws for party #2. Only problem is that their home is on lake an hour from me and I'll be driving home tomorrow night. It's driving on dark little roads, I'm not excited about that part. Then on Tuesday, I'll go to my son's home for a fun day and night with family. On Thursday I have my liver BX. I guess I better plan on resting for a few days after that. Actually, resting and reading a good book snuggled up with my cat, sounds nice. I just hope it's not too painful. I have Tramadol on hand just in case I need it.
I just want my IR to be successful in getting the BX. It feels very important to me. I know he's going to try his best. And his best is very good, he's one of the best in Texas. I'm in good hands.
Merry Christmas liver metsters. I hope all of us can enjoy this very special time of year, my favorite celebration of the year.💞
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Hi Grannax2. Will you also be starting Aromasin with the Afinitor? Best of luck with it all. I was on Ibrance and Fasoldex for 2 years until my doctor thought it had stopped working. Now on Afinitor and Fasoldex. Too many SE with Aromasin.
Enjoy your Christmas with family. By the way I have 3 children, 8 grandchildren, 4 great grandchildren.
JenFlorida
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WOW Jenflorida, that's a lot! Wonderful. I have two children and two grandchildren and I'll be with Dallas of. Then tomorrow.
Yes the plan is for me to be on Aromasin and Afinitor. Hoping the SE will be manageable. BX on Thursday. 🎄🎅🎂
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Just piping in......thus far no mouth sores...yippee!! I am about 8 weeks into A/A....25mg and 10mg. Continued loss of appetite and weight loss. Off and on diarrhea which doesn't help much with the weight loss either. Other than that, no real side effects. Just praying that it is working!
Take care all,
MM
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Granx - Good luck with US guided liver bx tomorrow. I'll be thinking of you. One specific I did not mention was they have you lay on the side the bx was on for a couple of hours afterward. It's to keep pressure on the poke sight as bleeding is a concern. I did take pain meds that day and for a couple afterward but I probably could have done without it. I like to baby myself a little after a procedure like that. To me the pain (at it's worst) was like a bad side ache. You know what I mean, like when you take a walk too soon after a meal? Try not to cough if you can.
Jenflorida - Hope you had a good Christmas with the kids, grands, and greats! So tiring, but so fun! Would you mind telling what se's you had that made aromasin intolerable for you? Just curious.
MM - Great to hear things are going well for you on this combo! On the tx I've has so far it seems like the se's are the worst in those first few months, so hopefully behind you now. Are you swishing? Ha ha, I meant with the rx mouthwash! Hope the weight loss is not too severe. And hope like crazy it is working for you. Did your MO say how long before they will scan to see results? I'm thinking 3 or 4 months.
My Afinitor is supposed to come tomorrow. Both DH and I seem to have been "gifted" a cold for Christmas. I may wait and see how it gets before I start, we'll see.
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AROMASIN caused bad body aches head to toe. Could not stand it.
Switched to Fasoldex along with the Afinitor instead.
Have to say I must be one of those people who don't tolerate drugs well as I have lots of leg cramps, swollen foot, fight tiredness during day.
Take Tramadol twice a day along with Tylenol. Also Celebrex for arthritis.
I am a senior lady so think drugs are harder to tolerate.
Have any of you ladies had luck treating leg cramps?
Good luck to those starting Afinitor. Most get along ok.
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I did have my liver BX yesterday, remarkably I don't feel any pain or tenderness at the site. I don't feel like I had anything done at all, lucky me.
I do start AA on Monday. Thanks to the advice here my MO did call in the RX mouthwash today. So I'm all set. Still trying not to feel anxious about taking that first pill.
I'm sure I'll be posting here quite a bit. Unless my pathology comes back in a week or two saying my MBC has morphed into Her2+ or something else, who knows. It will take about two months to get the genomic testing results.
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Jennie, try dill pickle juice for leg cramps. I get them a lot with different treatments, and in weird places, like my side when I stretch. I take a sip of the juice out of the jar. Also it's good to take magnesium. I take 500 mg per day.
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did you have se from afinitor?
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how is afinitor working. SE?
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Thank you for pickle juice solution . Jen
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Jennie, you're welcome. I never took affinitor. I was afraid of it but I will probably have to try it eventually. I do follow to see how people are doing and what side effects they have. I was afraid of the lung issues that some people get because I smoke. I know, terrible!
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I have one more day without AA. Is there a certain time of day to take it? With or without food? I was surprised to hear it's an everyday pill, no breaks. Wish me luck AA ladies. 💞
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Hi Gran -
I started Afinitor on Nov. 9. My MO has me taking it along with Carboplatin. The Afinitor part has been surprisingly easy. I started with the mouthwash two days before I took the Afinitor, and have had no problems with mouth sores, although my mouth does feel a little dry. Other than fatigue, I have no side effects to speak of, so this has been a good treatment for me. I started on 5mg and she moved me up to 10mg a few weeks ago. Thought I would maybe get some SEs then, but so far, so good. I take it in the morning after breakfast with a full cup of water. I do worry about how well it might be working. Guess I'm just used to being miserable with SEs after suffering through Verzenio and Xeloda. I wish you lots of luck!
Donna
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Thanks Donna Belle. That is good news about no SE. Very encouraging to know especially on the day I start AA. I'm hoping I will have the same. Yes, I'm sure you are wondering if it's working. Especially since several TX have failed. I hope this one works for both of us.💞
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I started AA last night. Unfortunately, my pharmacy had to order the mouthwash and it did not come in. It will be here tomorrow. I hope going without it for two days won't give me a bad start.💞
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I am quickly coming to the conclusion that I don't like A/A. After bragging about no mouth sores last week, I now have them. Unfortunately, I never started with the steroid mouthwash and now I'm afraid to since I had some dental/sinus surgery right before Christmas and I don't know if the mouthwash would be a no no for the still slightly open areas in my gum and jaw. Have also lost 18 pounds since end of October....really not much appetite at all with ongoing diarrhea! Severe back pain for the last week which I initially attributed to the positioning my surgeon did during my surgery. As it is not getting any better, I have a call in to my onc. Feels like fractured ribs again!!
I really miss my old friends Ibrance/Faslodex who were with me for 3 1/2 years with very little in the way of SE. Only a little over 2 months on A/A and I'm starting to feel like an old beat up cow
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Leg cramps. . . the ladies on the Halaven thread have some remedies. Magnesium is one. Stretching out (believe it or not) before bed was another. You could try soaking them in Epsom salts baths too. That's another way of getting magnesium.
Glad some of you ladies are doing ok on A/A. I had to quit after three months due to lung inflammation. Though I was on a trial so I was taking Ibrance too. That was probably the last straw.
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MM - Sorry to hear this combo is giving you trouble. Isn't that just the way it goes, as soon as you say I haven't gotten such and such - bang! - there it is. I would think the mouthwash would still be okay, but maybe ask your dental surgeon and pharmacist first. Hope your mo has some help for Big D and back pain. I'm with you missing Ibrance/Fas. I feel so all over achy since staring Aromasin and only take my 2nd Afinitor today. Hope this is just a rough patch and you will get past it soon.
HLB - I'm leery of Afinitor for the same reason. Brave of you to admit it. I know we are all different but maybe I can be a bit of a Guinea pig for you, ha ha! What tx are you on now?
Grannax2 - I just started Afinitor yesterday too. I'm sure you'll be good if mouthwash comes tomorrow. I am going kamikaze, ha ha. I asked my mo about it and she told me most of her patients don't get mouth sores on this tx. Hope she's right, she is not big on acknowledging /treating se's. Has your mo ordered weekly labs?
Pajim - Looks like you made your decision. Hope this tx works for you without messing too badly with your QOL and the work you love.
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jobur. So we're on the same schedule. I didn't feel any difference the first day but yesterday I sure did. My lower back felt like it was on fire. Stinging and burning and hot. It felt like I was laying on a heating pad but I wasn't. Weird sensations. Also in my shoulder blade area. Fatigue I did not expect this soon but I have been off of any treatment for four weeks. It hit me yesterday too. Then no appetite already. In general I just feel strange, like something is not right. I'm only on day three. Bummer. I get my mouthwash today but I don't have any mouthsores. Go figure?!?!
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masonsmawmaw. So you have back pain too. I wonder why this drug causes that. I was not expecting it.
No I'm not sure when my next appointment is. Usually I see her her once a month with labs. Are we supposed to do labs weekly w this drug?
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To jobur's onc, I say, "Liar, liar, pants on fire!" Even Novartis, the drug company, admits the mouth sores. From their web site:
"Stomatitis: Stomatitis, including mouth ulcers and oral mucositis, has occurred in patients treated with AFINITOR/AFINITOR DISPERZ at an incidence ranging from 44% to 78% across the clinical trial experience. Grade 3/4 stomatitis was reported in 4% to 9% of patients. Stomatitis most often occurs within the first 8 weeks of treatment. When starting AFINITOR/AFINITOR DISPERZ, initiating dexamethasone alcohol-free oral solution as a swish and spit mouthwash reduces the incidence and severity of stomatitis. If stomatitis does occur, mouthwashes and/or other topical treatments are recommended, but alcohol-, hydrogen peroxide-, iodine-, or thyme-containing products should be avoided. Antifungal agents should not be used unless fungal infection has been diagnosed."
Mason's, do check with your oral surgeon and oncologist about when you can start the mouth rinse. If I'm not mistaken, a topical steroid mouth rinse could make the mouth more vulnerable to infection, so timing after surgery could be important.
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Hi All,
I have been put on Aromasin and have been on it for almost 3 months now. I have been getting frequent UTI's on this stuff. No pain just foul smelling pee ( sorry TMI) I have been going to my regular dr for antibotics for the 10 day period. Is this a side effect of the Aromasin and should I let my ONC know. I don't see him for another 10 days so I didn't know if it was a serious side effect Last time, I saw my ONC, I didn't even mention the UTI cause I thought it was just an a occasional infection. But seems like I keep getting them once a month now.
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Jobur, I am on abraxane. It's not too bad. Yes, you can be the guinea pig! That's actually why I follow this thread, to see how people are doing with it.
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Grannex....no weekly or even monthly bloodwork, My onc set my first follow up appt at two months after starting the regimen. I did request a fill in appt and saw her yesterday. Had xrays on my back/ribs....not sure if a fracture or muscle spasms but it sure does hurt! Started the mouthwash so hoping the mouthsores disappear soon. She also gave me a script for Marisol, an appetite stimulant as I have lost 20 pounds in just over 2 months. Just need to get these SE's under control!! Also just an fyi....I hate blisterpacks so I asked the pharmacist is I could cut out all of my Affinitor out of the packs and put them in a bottle; she said that is a big no no! Each tablet has a special coating to help prevent mouth sores. Removing it early from the blisterpack exposes it to moisture which breaks down the coating.....who knew?
Take care ladies and I'll "see ya" soon!!
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