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Afinitor/Aromasin

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  • Kandy
    Kandy Member Posts: 424
    edited November 2016

    Kimbra, I would love to stay in touch. It's been difficult to find many on this combo. Thanks for joining in. Which mouthwash did you get? I didn't have any trouble for the first 2 weeks, then I got a stupid cold and overnight my whole mouth seemed to break out. The worst is on my tongue. I didn't even know that was possible. It has really been impossible to eat and drink. Like being electrocuted. Hang in there, I hope you continue to do well on this. I was ecstatic about my markers dropping. I want to get back on it as soon as I can. Best wishes to you.

  • Key2
    Key2 Member Posts: 54
    edited November 2016

    the name of the mouth wash is DEXAMETHASONE 0.5 oral solution

    It says how to use....Swish and spit by mouth 3 times a day.

    I'll keep you posted moving into my second week!

    Fingers crossed :)

  • Kandy
    Kandy Member Posts: 424
    edited November 2016

    That is what they gave me too, so hopefully that will help when I start it back. I do hope it is the ticket for both of us.

  • Unknown
    Unknown
    edited November 2016

    Hi Kandy and Kimba,

    Sorry to hear you had to stop the Afinitor Kandy - me too. I'm not going back on it because the side effects were too disabling. I'm continuing on Exemestane (aromasin) and monthly Xgeva injections. My CA15-3 markers haven't moved much going only from 22 to 27.

    Kimba - I hope you continue to do well on this combo.

    I am feeling so much better now the effects of Afinitor have left my body. I went back to work on Monday. I will have a scan in December and hope that this brings good news.

    I hope you feel better soon Kandy,

    Cheers Judy

  • Kandy
    Kandy Member Posts: 424
    edited November 2016

    Hey Judy,

    So glad you are feeling better. I do hope aromasin works well for you. I have now been off Afinitor for one week, my mouth is almost all healed so I'm thinking I will try again within a day or two. I'm certainly hoping I can tolerate it when I try again. Please continue to update us on how you are doing and I do wish you the best.

    Kimba, how are things going for you?

  • Key2
    Key2 Member Posts: 54
    edited November 2016

    Hi Judy and Kandy

    Thank you for checking in....

    So I've been on Afinitor for 12 Days now and no mouth sores at all (knock on wood) however I am getting big pimples on my arms and face! Hope they don't travel into the mouth :-(

    I have a slight cough but nothing really (everyone once and a while I feel like coughing which is NOT my norm) I did checked with my doctors aide and she said she thought it was allergies so for me to be in the safe side. I will make appointment with my lung doctor so he can keep a watch on the lungs since this drug can cause lung irritation.

    Other then that no side effects and I really do feel better then I have in a long time! My bone stops aching (I have bone mets) and now have a ton of Energy. So all in all this drug I feel has worked better for me then IBRANCE.

    Let keep posted not many of us on this combo because of side effects etc......

    Hugs

    Kimba

  • Key2
    Key2 Member Posts: 54
    edited November 2016

    Kandy


    If you go back on Afinitor, I've been using the mouth wash which we talked about but also every morning when I take Afinitor I take it with whipping cream. I take the pill out of the package place it in my palm and squirt whip cream on it throw it in my mouth and swallow with water. Then take another squirt of cream to coat my mouth.

    Not sure if it really works for long time or not but for me so far so good!

    I had read about this from others...thought what could it hurt and it's yummy too!

  • Kandy
    Kandy Member Posts: 424
    edited November 2016

    Thanks Kimba, I just got off the phone with my pharmacist friend from the cancer center that checks on me every few days. He thought it was okay for me to try again. So once again I am back on. I had read that about putting it in something and I'm going to do it this time. I put it in a slither of cheesecake and swallowed on this one. I will have to get me some whip cream. I do love that stuff so what the heck. Good excuse for a squirt, lol. I do hope you continue to do well. Best wishes to you.

  • keetmom
    keetmom Member Posts: 299
    edited November 2016

    I start next week and I'm terrified, trying hard not to get it in my head it will be awful because I believe in mind over matter....just want to get started...

  • Kandy
    Kandy Member Posts: 424
    edited November 2016

    Keetmom, try to stay positive. I know that is hard with all the horror stories. My attitude is I will give it my best, whatever happens is meant to be. If it gets unbearable I will stop it. I figure at this point, I have nothing to lose. I figure they all have their own side effects. And who knows, this just might be the magic one for right now. I hope you have great success with it and side effects are minimal.

  • Key2
    Key2 Member Posts: 54
    edited November 2016

    Keetmom-

    I thought the same thing about staring Afinitor..... I found this combo is better then IBRANCE and LETROZOLE for me. Not to mention IBRANCE did not work and my cancer was starting to grow again. I feel better on Afinitor. It could be just me but my bones are not sore anymore and I have tons of energy. Now I have NOT gotten the horrible mouth sores yet so you really need to watch those and drink LOTS of water to filter out everything.

    Stay in touch and I am sure you will be fine!



  • Unknown
    Unknown
    edited November 2016

    Hi Kandy, Kimba and Keetmom,

    You can get empty clear plastic pill cases from the chemist. You can just pull the case apart pop in the Afinitor and swallow like a normal capsule. I hope this helps

    Cheers Judy

  • Kandy
    Kandy Member Posts: 424
    edited November 2016

    Judy, can you get them from the pharmacist

  • Key2
    Key2 Member Posts: 54
    edited November 2016

    Judy...

    Wow!! That's a great idea!!!! I'll check with my pharmacy


    Thanks for the tip...


  • ann273
    ann273 Member Posts: 122
    edited November 2016

    I have been on affinitor for about 14 months now. I had horrible mouth sores initially, and like Kandy, even on my tongue. Lost 4 pounds in a week because I was'nt able to eat. The following things helped me immensely to a point of almost normal quality of life.

    1. The clear plastic pill cases. I bought these on Amazon and as far as I can tell are still available and very reasonably priced.

    2. Taking a probiotic everyday without fail. This was the silver bullet for me. Covering the pill with the case, only helps with sores occuring from the pill touching the lining of the mouth. But, I would still get sores and my doctor told me it was systemic. Once I started the probiotic, I started to get a sore, once in 2 months or so. It might be a good idea to just check with your onc if it is okay to take a probiotic though.

    3. Every time I feel a sore coming on, I use Canker Rid (also available on Amazon) on it. This covers the sore effectively and also gets rid of it faster, especially when you start using it before the sore gets bigger.

    4. If all else fails, my onc said some patients go on to lower doses. 7.5 mg works just as fine for some of his patients.

    Hope this helps. Once you learn how to manage the side effects (and I understand that we are all different, so this is not entirely possible for everyone), Affinitor is a very doable treatment. Good luck everyone!

  • Unknown
    Unknown
    edited November 2016

    yes, just ask for empty capsules. They come in a bottle of about 100

  • Key2
    Key2 Member Posts: 54
    edited November 2016

    Thank you Ann!! I am going to ask my doctor about probiotic....I heard great things about using this in the diet.

    Warm regards,


    Kimba



  • Kandy
    Kandy Member Posts: 424
    edited November 2016

    Thanks Ann, I'm sure we all are open for any suggestions and really appreciate it. Wishing you the best.

  • 208sandy
    208sandy Member Posts: 582
    edited November 2016

    When I was on the AA combo the mouth sores were stopped by using a form of magic mouthwash (check with your pharmacist they compound it) - it is very pricey and not covered by insurance all the time but the trick is to use it from the very beginning and use it every single day - I only had mouth sores once when I was using salt water rinse instead of the mouthwash - as for the probiotic my onc wouldn't allow them I think because she may have thought it would interfere with treatment. I took the pills with marshmallow fluff but honestly after a while it became annoying. I had to go off treatment after a number of months because of shortness of breath and fatigue that was making me take to my bed. I've been on faslodex for almost two years now (it'll be two years in January) and I am doing well - tm's are stable and low, very few se's but AA also worked at keeping things low and stable so carry on ladies, I'm proud of all of us for sticking it out.

  • ann273
    ann273 Member Posts: 122
    edited November 2016

    Key2, do let us know what your onc says about the probiotic. I talked to my Onc and another who is a family member and neither of them had an issue with it. I would however like to hear other opinions!

  • Key2
    Key2 Member Posts: 54
    edited November 2016

    Ann

    I will be going to the ong on November 17 I'll check with her then. I'll let you know what her thoughts are!

    If I remember correctly last year when I started onthis journey she did not want me to use anything but Vit D and eat normal. She also did not want me to color my hair or if I did not directly on skin no contact with dye.

    So should be interesting he reply.

  • ann273
    ann273 Member Posts: 122
    edited November 2016

    Thanks Key2! I was looking around on breastcancer.org and it seems like a few people used probiotics. I hope its not an issue, because they saved my life :/ The only thing I was told not to consume was grapefruit juice and this is what it says on the Novartis site as well. This makes me wonder as to what other medications, products we should'nt be using.

  • nfiala
    nfiala Member Posts: 2
    edited November 2016

    I am starting the A/A combo tomorrow and needless to say am a bit nervous. 😞 Not a lot of positives it seems with all the side effects. I had a pretty long run - 22 cycles - on Letrozole/iBrance with few side effects. I am starting on 7.5 dose of Afinitor and have the mouth rinse which I will use before taking it. Hope all goes well. It's great to see that some have had success with AA. Kind of a bummer to be starting right before the holidays

  • Key2
    Key2 Member Posts: 54
    edited November 2016

    Hi Nfiala

    First let me welcome you to this group small but informative group.

    I had the same thoughts as you about Afinitor so I totally understand, I have been using Afinitor for 3 weeks now with no mouth sores and no side effects (thank god) I feel better on this drug then I had on IBRANCE which did not work for me at all! I was on IBRANCE for 4 months..so everyone is different and reacts to drugs different.

    Here are my little tips for you on Afinitor USE THE MOUTH WASH everytday. I use mine morning and after dinner then again before I go to bed. When I feel a sore coming on in my mouth like a Canker sore I use the mouth wash immediately doing so for me takes the sore right away! Another tip on taking Afinitor I take it with whip cream and swallow with water. Some woman on here purchase the empty pill case and place the Afinitor pill inside it...I was told that not having the Afinitor pill not touching the inside of your mouth is important. So far for me it has been working

    Also I take my pills in the morning after breakfast because I found that Aromasin which I was taking in the evening after dinner was causing a cough so I switched to morning and my cough went away.

    I hope this helps and keep positive thoughts...we are all here if you have any questions.

    Warm regards,


    Kimba

  • Unknown
    Unknown
    edited November 2016

    Hi ladies, this post might appear twice because I posted but then couldn't see it so am posting again - technology .... ugh!!

    I was just checking in to see how everyone is doing?

    Kandy - how is Afinitor second time around?

    Kimba - sounds like you are still doing well? Great to hear

    Nfaia - welcome and I hope you have success with this combo. Our small but supportive group is always here with loads of encouragement and tips and tricks!!

    As for me, I'm doing really well. Back at work full time, no side effects. I had the second Xgeva shot yesterday and continue on with Exemestane (Aromasin). I have added PSK Trammune to my daily intake of vitamins. It is a Chinese turkey tail mushroom extract tablet which is supposed to boost the immune system and has cancer fighting properties. I take 3 capsules a day. My next scan is in December and so far the blood results have been good.

    I hope everyone is doing well and I look forward to your updates. Happy Thanksgiving to those in the USA - such a lovely holiday ... I wish we celebrated it here in Australia

    Cheers, Judy

  • keetmom
    keetmom Member Posts: 299
    edited November 2016

    Nfiala

    I am starting g tomorrow too. I took my first Aromasin this morning , reading some people not having issues makes me feel better, glad to have some people around same point as me. I had some mouth sores on Ibrance so a bit concerned but will ask for the mouth wash, I also have started using warm baking soda water to swish.


  • Kandy
    Kandy Member Posts: 424
    edited November 2016

    Welcome to the newbies. I'm hoping everyone has great results. I'm now on my second week for the second time around. This time so far, I have done really well. The first time I had a migraine headache for the first week, I was afraid that I would have it again, but I didn't this time. So far, no mouth sores, thank the lord. I'm using the mouth wash 4 times a day, a pill that is a steroid, I also drown the Afinitor in cool whip. I'm praying that I can stay on it. Judy, I'm happy that things are going better for you, I'm hoping your scan shows good results. I also get scanned in December. Hopefully it will be a nice Christmas gift. I'm excited about thanksgiving, we have such a great time with the family and eat way too much. I kept my grandson yesterday, such a breath of fresh air. He is 3 months old. Wishing everyone the best

  • nfiala
    nfiala Member Posts: 2
    edited November 2016

    Thanks for the warm welcome. I had a delay starting since my doctor wanted me to consider a clinical trial. I decided to go ahead with Afinitor and will begin tomorrow. Your tips are so appreciated. I haven't been feeling well after stopping IBrance so hopefully this change will help. I started Aromisin last Thursday and plan to take both pills in the mornings. Praying for good results and no mouth sores or other side effects for us all. I have my mouthwash and cool whip ready to go.

  • lesleyb
    lesleyb Member Posts: 7
    edited November 2016

    Yes the Afinitor is like a steroid. Hence the reason we get insomnia with it. I started A/A about 3 weeks ago. First thing I noticed was my blood sugars going through the roof. My diabetes has been well controlled for the past 6 or so years now it is out of control giving me even more side effects. Sent by my onc to an endocrinologist who suggested upping my meds for the diabetes. He then took off on a holiday and I can't contact him.


    His suggestions didn't work so I am trying to regulate the darn thing on my own. I really don't like this drug. I didn't take it today to get some respite. The worst things are the insomnia, sore mouth and tongue, sinus, bloody noses, and the worst taste in my mouth ever. Everything tastes different so I am losing weight fairly rapidly. I don't enjoy eating any more. Fruit is my best go to but of course they are loaded with sugar.

    I became more depressed also and found myself in tears many times, something I thought I had passed over for a long time.

    I am going to see him next week to see if he can cut the dose. We in Australia don't have the variety of drugs that other countries have so there isn't a lot of choice left for me other than Tamoxifen. I failed Arimidex after 18 mths.


    I am very happy that it works for so many but unfortunately I am not one of the lucky ones


  • lesleyb
    lesleyb Member Posts: 7
    edited November 2016

    Hi Judy, I agree with your onc about not taking any notice of TM's. I found out the hard way that mine didn't work. I think my onc placed too much emphasis on them. But in the meantime I was progressing alarmingly quickly in my spine to the point where there isn't much they could do for the big hole in C2 other than some radio. Too diseased now for surgery.

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