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Afinitor/Aromasin

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Comments

  • Longtermsurvivor
    Longtermsurvivor Member Posts: 738
    edited October 2016

    Thanks for reviewing this information, dear Kandy...I am interested in your choices...but don't have any plan in mind for you rather than encouraging your health and happiness, not your adherence to dogma or theories!

    Life is hard enough already, let's make it easier on ourselves and one another.

    warmest healing regards, Stephanie

  • Unknown
    Unknown
    edited October 2016

    Kandy I found this link about Afinitor. It was an interesting read. My brain scan was all normal and I read in this study that headaches are a se of Afinitor. This is probably true as I haven't had them nearly as bad since stopping Afinitor to get rid of the mouth ulcers.

    http://archive.jsonline.com/watchdog/watchdogrepor...

    As eating is difficult my neighbour texted me her green smoothie recipe which has lots of good stuff in it and tastes pretty good. For your gastronomic pleasure 😊 this is what I put in it :

    A handful of organic kale, a handful of

    Spinach, 2 celery sticks, a red apple, a pear, an organic kiwi fruit, a banana, a squirt of ginger purée, half a peeled lemon and coconut water. You can also add parsley if you like. Blend it all together adding more coconut water until you get a good drinking consistency. You can keep it in the fridge for a couple of days. I use it as a meal replacement but also had a little chicken breast as well for protein. 👍

    I hope everyone is doing ok, cheers Judy

  • Kandy
    Kandy Member Posts: 424
    edited October 2016

    Judy, I do hope your mouth sores are improving. I had googled about headaches with afinitor and has also found sites that was saying it was a side effect. Oddly enough yesterday at day 7, my head felt some better. Today it is some better than yesterday. At least it is no longer debilitating. I'm hoping it goes ahead and goes away. I absolutely despise headaches. Thanks for your recipe, I will have to give that a try. You take care and get some rest.

  • keetmom
    keetmom Member Posts: 299
    edited October 2016

    I will be starting Afinitor/Aromasin on Nov 17, I've been on flasodex and I rance scans today show some progression in bones along with rising tumor markers...we have a vacation planned for next week so waiting until after that...also changing get from zometa to xgeva...

  • Kandy
    Kandy Member Posts: 424
    edited October 2016

    Keetmom, I hope that combo does good for you. I have been on it for 1 1/2 weeks

  • Unknown
    Unknown
    edited October 2016

    Hi Keetmom, I am on Exemestane and Afinitor and Xgeva. I've had to temporarily stop Afinitor after almost 3 weeks on 10mg due to bad mouth ulcers, but Kandy hasn't had any, so it doesn't affect everyone. I hope you are one of the lucky ones! I'm going back on Afinitor but at 5mg when the mouth ulcers get better.

    All the best to you for your new treatment plan. We are all here for any advice or support you need.

    Cheers Judy

  • keetmom
    keetmom Member Posts: 299
    edited October 2016

    Thanks all...I am not starting until Nov because of vacation, I have had mouth sore with IBrance so will have to prepare, he is starting me on 7.5...


    Amie

  • keetmom
    keetmom Member Posts: 299
    edited October 2016

    Accidently deleted,my previous post..sorry...starting on Nov 17....after a weekend trip to boston.a bit worried ibrance was pretty easy...but obviously it didn't work...

  • Mamita49
    Mamita49 Member Posts: 58
    edited October 2016

    I know its not really important to mention it, still.....The Afinitor is about 6000.00 $ per month.

    I just cant believe it. Thank goodness I dont pay a dime for it. It better keeps on working. I was told that in most cases it works around 10 months. I am on it since 10 months, just had a scan last week. I am getting the results next week, since my Onco is still on vacation.

    I would love to hear from some Ladys out there who have been on this combo more that 10 months, just to have a little bit more hope.

    Thanks

    Carol

  • Kandy
    Kandy Member Posts: 424
    edited October 2016

    Carol, sure hope your scans are good and you can continue with this combo. Best of luck to

  • Kandy
    Kandy Member Posts: 424
    edited October 2016

    Does anyone know if you have to take any special precautions when you get your teeth cleaned on this combo? Didn't know if you should take preventative antibiotics or not. Thanks.

  • Key2
    Key2 Member Posts: 54
    edited October 2016

    Hi Kandy

    I'm getting ready to start on my AA this week. Do you take both at the same time if so AM or PM? Any other tips you can give me would be great!


    Thank you so much,


    Kimba

  • Kandy
    Kandy Member Posts: 424
    edited October 2016

    Welcome to this combo, I hope you have a long run on it. I've only been on it a couple weeks but I will tell you what I do. I take them both in the morning. I take afinitor with at least 12 ounces of water. About 30 minutes later I take the aromasin. I don't think it matters what time of the day you take them as long as you are consistent with the time. I also drink a lot of water a day. My oncologist suggests at least a gallon and I'm way over that. I have always drank a lot even prior to this. The first week I had a horrible headache but on the 8th day it started going away. I have been fortunate thus far with not having an issue with mouth sores. But this is the most common side effect. I hope you do well on this combo and keep us informed. Wishing you the best

  • Key2
    Key2 Member Posts: 54
    edited October 2016

    Kandy

    Happy to hear your doing good on this combo! I'll do the same and hope for the best.

    Thanks again for your quick reply.


    Best,

  • keetmom
    keetmom Member Posts: 299
    edited October 2016

    I thought I read someplace on all these pages they should be taken hours apart..haven't started yet....

  • Kandy
    Kandy Member Posts: 424
    edited October 2016

    Keetmom, I also read that on this forum. But I was assigned a pharmacist at my cancer center that came andtalked to me before I started this and he does weekly follow ups with me. Anyway, I asked him that question and he said there was no reason that they would have to be taken hours apart. Afinitor just needs to be chased with a glass of water. It can be taken with or without food, Aromasin should be taken with food. He said I could take them at the same time just to make sure I follow these rules. But you can ask your cancer center and see what they say. Best of luck to you

  • Longtermsurvivor
    Longtermsurvivor Member Posts: 738
    edited October 2016

    I've read that marshmallows or cool whip around the afinitor before swallowing can cut down on mouth sores...all patient anecdotes, not clinical trial evidence.

    Healing wishes, Stephanie


  • Kandy
    Kandy Member Posts: 424
    edited October 2016

    Just curious how everyone is doing on this combo. Judy, have you started back on it? I haven't been doing so well for the last week. My husband travels on business, he came back a week and a half ago from hondourus. He also brought a nasty cold with him. So of course by last Monday I was getting it. It has played havoc on me. Besides not feeling well from that, I guess my immune system was down so I got the nasty mouth sores with it. I can't seem to get over the cold and my mouth is killing me. I even have them on my tongue. Any suggestions? I see my oncologist tomorrow. Can't wait to see what my labs look like. Wishing you all the best.

  • Unknown
    Unknown
    edited October 2016

    Hi Kandy, I'm really sorry you are not feeling well. You may be best to stop the Afinitor until the mouth ulcers heal , but this is a conversation to have with your doc.

    I ended up in a right state with the Afinitor and the dexamethasone mouth wash I was using to try and heal the mouth ulcers. I had headaches, lost 8kg in a month, had absolutely no energy, dizzy spells, urinating every hour, drinking about 10 litres of fluid a day, blurred vision and had to stop work and basically languished in bed feeling miserable for a week. So I stopped both the Afinitor and dexamethasone mouth wash on the advice of my oncologist and breast cancer nurse. About a week later I am feeling a bit better but still quite weak.

    I see my oncologist on Thursday and hope to switch to Letrozole. It would be great if I could have this with Ibrance but I think my chances are slim as ibrance is still on clinical trials here in Australia and I think the trials are full or I don't qualify for them. However my Oncologist is looking around for clinical trials for me. It's frustrating that options seem so limited here in Australia compared to the USA.

    Rest up Kandy and give your body and immune system time to heal. It was hard for me to accept this advice as I am usually so active. I was supposed to be going on a 2 week holiday to Cambodia next Sunday but quickly realised that if I can't get in the shower how could I get on a plane for an overseas trip? How could I trek all over Ankor Wat if just walking from the bedroom to the kitchen left me dizzzy and sweating? Cancelling cost a lot of money but I think I need to invest time getting a treatment plan in place that gives me a decent QOL and hopefully stops progression. I never realised it would be such a juggling act or take so much research and active input on my part.

    So I think Afinitor is not the drug for me. It's taken 2 weeks to recover from 3 weeks of the drug. Let's hope there is something better. Sending healing thoughts and a gentle hug your way Kandy,

    Cheers Judy

  • Kandy
    Kandy Member Posts: 424
    edited October 2016

    Judy, I do hope you find something that is better suited for you. This combo is very difficult. They are talking about giving me a break and reducing the dosage to see if that helps. I see them tomorrow. Wishing you the best.

  • Longtermsurvivor
    Longtermsurvivor Member Posts: 738
    edited November 2016

    Not to be too sarcastic or obvious, but there are very few who stick with afinitor for long. That may be one reason why the community title from 2013 hasn't changed.

    Once Ibrance became the latest, greatest thing, most folks changed away from afinitor to Ibrance.

    These drug names just make me laugh, because most folks don't have an affinity for afinitor or want to dance with its rhyming partner, Ibrance.

    Healing love, Stephanie


  • cure-ious
    cure-ious Member Posts: 2,897
    edited November 2016

    MagpieMumma,

    I agree this is unfair and frustrating, why do they need to repeat clinical trials on a drug already as well-documented as Ibrance, that is such a waste of (precious) time. And Ankor Wat!! high up on my bucket list too, that is one pricey trip to have to postpone!!.. Thanks for the reminder that Affinitor sucks, and heal fast so you can go on that spiritual trip to Cambodia!

    Why do we have to travel for clinical trials, anyway?! Why isn't there one central list of trials (above phase I), you can sign up for any of them you like and qualify for, and they just ship the drug to our doctor!! There would be way better than 5% participation if they just opened these up to all comers..

  • Kandy
    Kandy Member Posts: 424
    edited November 2016

    Thanks Stephanie, you are too kind to be worrying about us right now. I hope your days are pain free surrounded by people you love. We all love you here, I hope you feel that. I asked my Dr when he told me I was going on Afinitor that I thought I would go on Ibrance next. He responded with because it had went to my liver, this would be better. Can anyone explain to me why he would have said this. I am so confused and miserable.

  • Miller525
    Miller525 Member Posts: 2
    edited November 2016

    Hi Stephanie,

    Just thought I'd pop in to say how very useful I found your recent exchanges with our resident pharmacologist on BCmets. I'm back with BCO after a 12 yrs hiatus as having some spinal cord issues and there seem to be more active Metsters here than elsewhere.

    Hope you are more than comfortable and able to achieve a level of serenity. I so appreciated your reaching out to me when I joined BCMets and was desperate for answers.

    Sending you warm thoughts and gentle hugs,

    Toni

  • Miller525
    Miller525 Member Posts: 2
    edited November 2016

    Hi Magpiemumma,

    I live in Canada. I was 11 yrs out from initial Dx and treatment of lobular breast cancer. It has been 18 months since my stage 4 DX of extensive bone mets. While I have not been on Afinitor/ Aromasin, btw my MOnc refuses to give it to her patients,

    I have had experience with Letrozole and IBrance. The latter was added to my treatment after being on Letrozole for over a year. Aside from neuropathy in one hand and general off and on pain all over, Letrozole has steadily reduced the intensity of my C so that it was stable after 8 months of treatment and I am still on it. Some people get a good long run on it, sometimes several years.

    IBrance was another story. It was the latest wonder drug and was rushed to market in the US before Stage 3 of the first trial? was completed because of it's good results in some people. My first round of iIbrance had to be stopped because of a serious upper respiratory infection. After 8 weeks and 2 lots of Antibiotics , the latter of which really upset my stomach, another round of IBrance was administered. (Note that the dosage can be lowered if one has a bad reaction) After 12 days I developed painful, large mouth ulcers that continued down into my esophagus. After 3 different treatments and a pile of supplements from my Naturopath, I am close to being better after a 2.5 month trial. Please do not mention the word " smoothies" to me!

    IBrance is noted for knocking out Neutrifils and white blood cells. Quite truthfully this experience for me was a "be careful what you wish for!" I went to the US first to try to get the drug there . It cost close to $1M CA , which was out of reach for me! Then it came to Canada about 1 yr later and while the cost was down to less than $500K, ( Medicare refuses to pay for it! ) I was lucky enough to get onto a study as the Can Gov't wants the drug to be studied more.

    So, all that to say, we are all individuals, particularly when it comes to C treatments. I am particularly glad I started the Letrozole first to see what it's side effects might be for me so that when the IBrance was added I knew what was causing what. Unfortunately, I'm the poster gal for drug reactions and all round allergies. Luckily, my M Onc has been with me for close to 13 years now so she knows what a quirky system I have.

    Well must buzz and get some sleep. Today is my pamidronate drip-- which has been super for me. Wishing you all the best with your treatments. There are so many options now and many more things close to reaching us. Modern medicine really is a wonder.

    Cheers,

    Toni

    Ps You might also find www.bcmets.com a useful forum, too! I belong to it as well.


  • Unknown
    Unknown
    edited November 2016

    Hi Miller525, thanks so much for posting of your experience with Letrozole and Ibrance. I shuddered when I read about the horrific mouth ulcers you had after taking ibrance. This side effect which I got from Afinitor is one I definitely do not want to repeat on another drug. I hope to just start on Letrozole and will hopefully enjoy the same success as you on this.

    I was also interested to read about your struggles to get access to drugs in Canada. It is maddeningly frustrating to read in these online forums of the success ladies have had on this drug or that in the USA only to find that a year or more after its general release in the USA we here in Australia (or you in Canada) can only access via a clinical trial.

    I hear your warning when you say 'be careful what you wish for! ' .... I know each drug is tolerated by each person to greater or lesser extent but just hope to find that winning combo for me and hope that I can stay on it without progression for as long as possible - what a lottery!!!!

    I am now wondering why Cytoid reduction /debulking and HIPEC is not used more routinely in those with mbc? I have read a couple of studies where women who had mets to just one soft tissue area like the omentum had this done and it significantly increased time to progression and OS. I wonder why with such positive results from this as a first line treatment for mbc it is not considered more often? This is a question for my Oncologist tomorrow!

    Well I will provide an update on 'where to from here' after I see the dr tomorrow. In the meantime I wish everyone comfortable days and nights, cheers Judy

  • 3-16-2011
    3-16-2011 Member Posts: 279
    edited November 2016

    hi all

    I have been on this combo a little over a year. I have not had mouth sores. I do take a steriod mouth rinse that I used 4times a day in the first month. I use it now anytime I have an injury to my mouth. My arnp also started me on llysine (a supplement) when I started this combo.

    I have been lucky with this combo with few side effects. I did get more frequent migrains. In the last 3 months the headahes have been more intense and lengthy. I recently found out I have 5 skull mets. I have finished radiation for skull mets. Tomorrow I meet with a new MO with plans to switch from this combo due to progression.

    Mostly I wanted to share that I had minimal side effects on this combo and it did get me through several months with our progression. Good luck to you all.

    Mary

  • Key2
    Key2 Member Posts: 54
    edited November 2016

    Hi Kandy

    Just checking in to see how your feeling?? I was thinking about you today! Did you get to see the Doctor?

    Did my first whole week on A/A so far so good.....


    HUGS,


    KIMBA

  • Kandy
    Kandy Member Posts: 424
    edited November 2016

    Hey Kimba,

    I am doing about the same. I went to the MO on Tuesday, he said I had to come off Afinitor until my mouth heals. Then we are going to try it again. He did add a mouthwash and a steroid pill, to see if that helps me tolerate it. We had been watching my tumor markers double every month. They redrew them, at that point I had only been on this for 2 weeks. Not only did they not double but they dropped 80 points. My markers have always been very accurate. So, I'm really wanting to be able to tolerate this. I'm so happy your first week has went well. Make sure you are drinking a lot of water, that helps to keep the side effects down. Best of luck to you.

  • Key2
    Key2 Member Posts: 54
    edited November 2016

    Great news about the tumor markers!!! Woo Hoo :-) that is a good sign.

    I got the mouth wash and it does help...here is how I use it and what my doctor told me. When you feel you might be getting a feeling in your mouth of canker sores use the mouth wash! I have been using it a night after dinner and before I go to bed. I have had the feeling of the sores starting and when I woke up in the morning they had been gone. I HOPE THAT CONTINUES FOR ME!!! But it has only been a week so I don't want to speak to soon :-(

    Let's stay in touch and I am sure you will be back on track with this pill combo soon.

    Stay strong and use the mouth wash!


    Kimba

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