Afinitor/Aromasin
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JustJean, I'm so proud of you. At least you have a plan in place. That is awesome and an accomplishment. I hope you have a wonderful vacation and enjoy every minute of it. I think if I was you I would probably also wait till after the trip so I could make sure I enjoyed it. I was going to tell you about that 25$ card if you had private insurance. I'm glad that worked out. Best wishes to you.
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To all of you,
I'm sorry to report that I'm no longer going to be a part of this small group. After having a PET scan that showed progression, my tumor markers are on the rise again, and increased pain, my oncologist stated it's not working. I was very sad to hear that. I'm moving on to chemo, certainly not something I'm looking forward to but we have to find something that works. I really hope all of you do very well on this combo. Wishing everyone the very best.
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Dear Kandy, I am terribly sorry to hear that it is not working, but glad that this fact has been discovered and that you will be trying something else. Would you mind telling me how long you were on Afinitor/Aromasine before realising that it is no longer working ?
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Kandy
I am so sorry to hear this!!! Please stay in touch let us know how your doing?
Kimba
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My tumor markers have been proven to be spot on, so the first 2 months they dropped, then at the end of December he repeated the pet, it showed progression. Then 2 weeks later he repeated my tumor markers and they had started rising. They were already too high. I also have a lot more pain. The combination he said definitely indicates it's not working. So I took it for about 3 months. Wish I had gotten longer. Best
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Kandy,
I don't know you but I sure wish you the best of everything!
I think you should stick around and share your knowledge!
JJ
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Hi all.
I was on Ibrance, Femara, Faslodex and Xgeva for the past 20 months. The Ibrance finally failed me and my tumor markers are just going up and up. I've now had the Ibrance and Faslodex removed and have added Afinitor to the mix. I woke up with a nasty sore on my tongue and my eyes and face are swollen. UGH!!! I will rinse with the mouthwash today but what about the swelling? I can't go out looking like this. Not that I go out much! Thanks for any input, Lisa
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hey ladies. I've been reading of your experiences. Not all 60+ pages but at least half. Seems mouth sores is the scariest part oh yeah and lung infections ( mo made them seem more often then I am reading here ). I am trying to decide to try this last tx before only IV tx left or just give up now and call it a long hard fight I've given up on. Still reading your experiences. Thanks for sharing. The whipping cream\ cool whip on pill sounds helpful ???
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Patty, please read my post I put on your thread. To think as long as you get the 2 drugs they gave me, you won't have an issue with mouth sores. It's not a bad combo. You can do this girl.
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Dear Kandy, we started this Afinitor/Aromasin journey together and I am saddened to hear that this combination didn't work for you. As you know my Afinitor journey lasted only 3 weeks and then it took almost another 3 weeks to recover from the side effects. You certainly have given this drug your best shot. There are lots more tools in the toolbox and I hope they can find the right one to beat things back for you.
I am still on Aromasin (Exemestane) and am booked for a CT scan on the 8 Feb and a bone scan on 14 Feb. These will be the first scans since my Stage V diagnosis last September. Scanxiety is already setting in!
Please keep in touch. Sending you many positive thoughts as the journey continues. All the best
Judy
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Judy I wish you the best. Try not to worry about the scans, it never changes the outcome. Try to just make the most of every day. You hang in there.
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Hi Ladies
I never had the mouth sores like Kandy....always used whipping cream when taking the pill followed by a glass of water! My only problem was a lung infection and it was Bad with fever (my doctor whom I saw last week does not think it was from the Afinitor she thought I caught the flu.which could be true because my brother came down with a fever and horrible cough/ cold so maybe she was right...however I was on 10 mg for 6 weeks no problem my tumor markers when from 96 to 82 went off due to lung infection for 4 weeks. Doctor placed me on 5 mg Afinitor for the last 4 weeks doing great feel good doctor now placing me on 7.5mg next week. While I am taking the Afinitor pill I will see a lung doctor every 6 weeks to make sure my lungs are clear and do not get any infection while taking Afinitor.. this will give me a piece of mind :-) I Will do PET scan in March. Hoping for the best!
My personal view is to try the pills with a positive outlook and hope any of these chemo combos work for you we are all different on how our bodies accept the chemo pills. So we never know unless we try!
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Well it has been a little over a month now that I have been on this combination. The mouth sores have come and gone. Just when I thought I couldn't take them anymore, they mysteriously disappeared. I had a face rash and pimply nose, and a dermatologist gave a treatment for rosacea which is helping. So I am feeling much better. Now the worst problem is that everything tastes vaguely bitter and way too salty. I have pretty much lost my pleasure in eating. I am no longer just fatigued, I am sleepy, and could sleep for twelve hours at night, then have another hour or two nap in the afternoon. That is pretty amazing for me - a lifetime insomniac. I am enjoying this sleeping business for now. Does sleep make cancer go away ? Say it does !
What tricks do we have to make food taste better ?
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Hi Everyone, I'm about to start Afinitor, but with Faslodex instead of Aromasin. Anyone else here on that cocktail? I'm starting straight away with the mouthwash too. I'm not eating sugar or dairy--any other advice on what to take it with other than the whipped cream? I'm coming off three cycles of letrozole/ibrance that didn't stop progression so I'm crossing all my fingers and toes that this one does the trick.
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HI Girlwithacurl, I don't know about Faslodex, interesting. I'm really glad to have another comrade in arms so to speak. I'm interested that you are not eating any sugar or dairy. Does not eating sugar include avoiding all starches, and eating low carb ? I try to avoid sugar as much as possible as well as most carbs (except in green vegetables) but am not always able to resist temptation. I'd love to know more about why, how, etc. Best of luck on this one. How long is three cycles of letrozole/ibrance; does that mean three months ? How did you/they discover the progression ?
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Hi Amarantha, at first I cut out sugar and dairy in an attempt to go on an anti-inflammatory diet and after reading a few books (anti-cancer, the crazy sexy cancer books, radical remission), I tried being more diligent until I could find an nutritional expert. I've started working with an integrative practitioner and she wants to keep me on a low carb, no sugar, no dairy diet. The low carb is the hardest part for me. I had been eating whole grains like quinoa and brown rice, but now it's more like a paleo diet, with no grains but more meat. It's tough to find food to eat, but I finally don't miss the sugar too much. But a good piece of garlic bread sounds awfully good. I'm happy share more about my diet if you want to know more. So the last two days I've been on the Afinitor I've eaten it in a spoonful of hummus. That doesn't go down very easily. Do I really need to coat the pill?I was on Ibrance for three months (it's 3 weeks on and 1 week off) and that was my first go at treating my bone mets. I had a weird skin and muscle reaction a couple of weeks ago in my upper body so they did an MRI to check for spinal compression. They saw new lesions from that scan, which told us the Ibrance/Letrozole wasn't working. So here I am!
I have no appetite today (day 2). And my drugstore can't seem to get my prescription mouthwash so swishing with glutamine until I get it.
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Dear Girlwithacurl, thank you so much for your thoughtful reply. That is interesting that you found a practitioner to recommend low carb and no dairy as an anti-inflammatory diet. Low-carb is what I have been aiming for for the last two or three years, but it is so "anti-establishment" here, I run into opposition at every turn. However a friend recently told me that the very high prestige Marie Curie Cancer Center in Paris recommended to a breast cancer patient to go entirely off dairy, I presume to help bring down the estrogen. It sounds like I ought to give it a try. I will look to see if there is something to read on this.
I am so sorry that after three months there was progression. You must have been so damned mad, I would be, and three months seems like a long time to wait for results. Sigh. But at least now it has been caught and they are on to something new, which I sincerely hope will have good results.
I will be interested to see how you do on Afinitor and low carb together - both which tend to curb appetite. I have been feeling rather demoralised about eating, on Afinitor, because of the no appetite, and the strange no-taste of everything, as a result my beloved husband is demoralised about cooking. So from time to time I eat a cookie or a piece of cake or just a bowl of oatmeal, hoping to experience a sense of enjoyment once again. Sadly even cake and cookies taste pretty much like sawdust. And chocolate ... the nice dark chocolate which is supposed to save the world ... it BURNS my tongue and cheeks. Anyhow, inasmuch as possible I am your pal on the low-carb thing. Under Afinitor my cholestoral is steadily rising, and so is the blood sugar (still just over the top edge of normal so they are not worried yet - but going off carbs is the only way I can think of to bring all that back down or maybe just stop the trend, -we'll see if it works at all this time - I've never had to fight a medication before, only my own metabolism.
Power and healing to you !
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Hello! I will likely be starting Faslodex + Afinitor soon, like girlwithacurl. I'm getting my ducks in a row. It looks like Pfizer may offer a co-pay card for Afinitor. Is there anyone here using that who can tell me about it? Also, Kandy, can you direct me to your post about the two medications for SE? The dex mouth wash is oredered. I have asked for baseline lipids at my next blood test. Any other ducks I should know about?
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Hi Shetlandpony
I not sure about the copay card for Afinitor my pharmacy always fills the order and I don't have any charge so I can't help you on that...
As for taking the Afinitor I never had the mouth sores like a lot of the ladies on here. I always took the mouth wash starting from day one, morning, afternoon and night. I Never drink after mouth wash for about 1 hour! I also took the Afinitor pill with whipping cream followed by a glass of water. The thought process was not to have the pill touch your mouth. Some on here have purchased the capsule cover you purchase from amazon I never needed to go that far.
I can tell you I did get a lung infection so please make sure if you notice coughing and shortness of breath let your doctor know ASAP! Because I had gotten the lung infection (lucky me I'm one of the 10% that could get it) I have a lung doctor I see every other month to monitor me. I have been on Afinitor for 4 months minus the 2 weeks with lung infection all is good so far I will be having PET scan in March.
Good luck with the flaslodex and Afinitor and please keep us posted on how your doing.
Best,
Kim
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Hi Shetland Pony,
Use that mouthwash 4 times a day, I also took valtrex to ward off cold sores, drink lots and lots of water, I used the biotin toothpaste. Put the pill in a spoonful of cool whip and swallow. Chase it with at least 8,ounces of water. Good luck to yo
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Thanks for the tips, Kim and Kandy. So is the cool whip important just because it keeps the pill from touching your mouth and throat, or is it also important because of the texture as it coats your mouth and throat? I'd like to find an alternative food as I don't like cool whip. So, does the doctor say that if you notice coughing or shortness of breath, you need to go see the doctor right away, or just the next day? Do you skip the next pill? Is the valtrex needed only if you have had cold sores in the past? Any side effects from the steroid mouth wash? Do I sound slighty nervous?!
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I did the cool whip just because I was trying anything for no mouth sores. Once was enough. You could use anything thicker than liquid. Pudding? I honestly don't think it makes a difference rather you do that or not. The med is known to thin out mucous membranes. So your mouth is hit hard. When it thins it out that's why they break out in sores. This is not because of direct contact it's the chemicals that are absorbed into your body. So like I said I did it but really didn't think it would help. My MO gave me valtrex after I had a mouth full of sores. I think they should give it as preventative but I don't know if they will. Over 80% of people have mouth sores, that's enough for me to wonder why they don't give you valtrex to prevent them. I never got the cough so I can't actually answer that. But I think depending on how bad it is would determine rather I waited or went to the ER. I didn't have any issues with the mouthwash. In fact I actually liked it. I hope this goes really well for you. Try not to be nervous, remember if side effects gets too bad you can stop taking it. W
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Hey guys! I'm about to start my 3rd week of A/A. I had 1 mouthsore the first week and noted that having it touch any part of my mouth is a huge risk factor...a spoonful of Greek yogurt for me. Good luck to all. Hoping my tumor marker will start moving in the right direction soon. My wife is confident that it's working due to my increased energy level.
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I did the whipping cream because I had read from previous Afinitor users and thought can't hurt!! But if you don't like whipping cream then use the mouth wash and see how it goes! There is a symposium study on YouTube that was very interesting the doctors said it was important that Afinitor users use mouth wash and they did see a big decrease in mouth sores from using it. I like the mouth wash and there are no side effects that I am aware of....
As for the lung issues for me the doctor started me out on the 10mg I really did fine had a slight cough didn't pay much attention to it and shortness of breath but really I Felt fine until 6 weeks on Afinitor woke up and coughed up brown mucus could not stop coughing and had shortness of breath with fever! I notified my doctor ASAP started me on anabiotic and then steroids I don't want to scare you but I do want you to be aware of your change in breathing and slight cough and to let your doctor know if you get It! Like I said only 10% fall in this group. Once it passed doctor placed me on 5mg no issues and then up me to 7.5mg no issues plus I see the lung doctor every other month to make sure he and my ong are on the same page. Read my past postings on here if you want...
My tumor markers have been going down since I've been on Afinitor however my doctor wants to see pet scan and then decide on future treatment or to keep me on this treatment. I really fell great!!
I can only say to you everyone reacts differently as you know and the benefits of keeping cancer in check is worth every thing you can try.
Hope this helps...
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Hi Key2, I am glad to hear your tumour markers are going down, and also glad that the scary lung issues seem to be resolved for now. I have been thinking a lot about what you shared because a slight cough has appeared. In any case, today we decided to stop the Afinitor for now to give my mouth time to heal, I have ulcers on both sides of the tongue and the back of the tongue, in the throat, in both cheeks all along the tooth line and in my lips, eating talking and singing (my profession) is painful, and I am getting sick of it. Meanwhile, I can see from the recent blood test, that the tumour markers have gone up. They may not take this seriously since in my case, the markers or particularly the lack of them, has proven a false indicator. I see the oncologist on Tuesday. Part of me is really hoping we try something else.
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Hi Amarantha
Better for you to go off the Afinitor while your mouth sores are healing. The way I understand the tumor markers is that doctors do not use them alone high or low they want a PET scan to follow up to see if the chemo combo is working or not...so focus on getting the mouth sores under control! When was the last time you had. PET scan???
The cough could be a bug your catching but see if it goes away while off the Afinitor but I would strongly suggest you tell your doctor and make sure you take your tempaturne everyday! I do so regardless if I'm feeling good or not.
Hope you feel better soon :-(
Kim
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HI Kim! thank you so much for replying. My last PET scan was six weeks ago, it was done right after the biopsies showing the cancer had indeed returned. I suppose they won't want to do another scan until the three month marker. I have to keep telling myself "down girl, down girl, down girl" - I know it has only been a short time .... but... with IBC it is just so hard to relax about the time going by ...
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I'm only on day six but I started taking it in unsweetened apple sauce and that seems to coat it ok. I finally got the mouthwash so can get that started. Any teeth issues with the mouthwash?
Amarantha, I can't imagine living in France and not being able to eat all the gorgeous carbs. Or dairy. But I'd be lost without the dark chocolate. I had no appetite the first couple of days and have been so tired. But I am hungry today so will enjoy it while it lasts. I hope your mouth sores heal quickly and you have a good meeting on Tuesday.
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I Scan in a week, am just finishing up month 3, I'm tired occasionally get mouth sores, I am not giving up any food because I am not real hungry so getting calories is the main goal.....
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HI gals, well I was off Afinitor for four days and mouth feels so much better. Going back on now after seeing the oncologist. I was upset about a million things at the appointment and disgraced myself by crying in front of her but anyhow ... because of that I forgot to ask her all my questions. I am sure she thinks I am a total hypchondriac. So anyway, anyone have this experience - red itchy skin blotches ? a known side effect ? I notice it on my hands - looks like poison oak sort of.
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