Starting Afinitor and Aromasin, what to expect?

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  • sueco
    sueco Member Posts: 250
    edited March 2013

    I am on Medicare and have to pay $80 for a 3-month supply.  I do have a supplemental plan though so honestly do not know if Medicare or the Blue Cross plan are paying the expense of this med.  I sure feel worried if Medicare is backing away from providing new treatment for breast cancer patients.  There is another topic on this web site called I believe Afinitor/Aromosin 2012 where there was a lot of discussion on Medicare and health insurance paying for this drug since it was still in a trial phase when this topic started.  The FDS did approve it very recently though for breast cancer.  Best of luck in your research. 

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  • chefmiche
    chefmiche Member Posts: 203
    edited March 2013

    I went to my billing department once to ask about my balance and the guy told me that since I was on Zometa (at that time) there was a Zometa card which helped with the cost, in fact I was qualified due to my loss of income going on SSDI the manufacturer paid $5000 toward my balance which I didn't have so as long as I was on that drug they would pay towards my usage of that drug up to  $5000 so that was a nice surprise.  I am now on Afinitor/Aromasin combo and I am on a copay plan through Afinitor that allows me to pay only $50 a month for that drug to come in the mail.  Yes, so check with your billing department first maybe you will have a knowledgeable lemployee like I did to help you.  Or like Chickadee suggested you could also check with them.  Good luck! 

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  • DEbeachgirl
    DEbeachgirl Member Posts: 34
    edited March 2013

    I just started Aromasin and Afinitor about 2 weeks ago.  I've been having migraines with nausea, fatigue, heartburn, and lose of appetite.  I had migraines when I started Arimidex too and they were under control with Fiorcet but it isn't really helping this time.  I haven't had any mouth problems really.  I thought the roof of my mouth felt funny but I might be imagining that.  Not diarrhea but I'm on oxycontin twice a day for pain for bone mets so that causes constipation so I'm thinking it's balancing it out maybe.  lol 

    I'm really sorry that some of you are having trouble with the cost.  That's the last thing you need to worry about!  (((HUGS)))

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  • Sattipearl
    Sattipearl Member Posts: 98
    edited January 2016

    just got through week 1 of A/A. Slight diarrhea, nausea and headache the first three days I took it in the morning. Switched to nighttime dosing and doing fine.

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  • Moderators
    Moderators Member Posts: 25,912
    edited January 2016

    Hi Sattipearl, welcome to Breastcancer.org and thank you for sharing your experiences with your treatment here. Although this thread is quite old, let's hope that bumping it will help you find other members going through this combo. If not, feel free to start your own new topic under this same forum if you are stage IV, or In the 'HER2+ (Positive) Breast Cancer' Forum.

    Let us know if you need help doing this.

    Best wishes,

    The Mods


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  • Sue2009
    Sue2009 Member Posts: 228
    edited January 2016

    Sattipearl, I was about to look for a more up to date A/A thread. I am on day 3, took it w/dinner, but going to try at bed time due to nausea, some GI cramping. I started it in dec, but after 2 weeks on lowest dose stopped due to neutropenia. Feel so weak too. Very frustrating, was looking to see if it gets better. Was on Palbociclib & I got better after I went on lowest dose.

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  • Sattipearl
    Sattipearl Member Posts: 98
    edited January 2016

    hi Sue

    Sorry you're so tired. I do sleep a lot more. Am still working full time, and go to church almost every week. Such a tiny life compared to how active I used to be.

    Been Stage IV since Sept. 2012, with mets to torso bones. Had 17 rib and spinal vertebrae breaks. OxyContin at 100 mg throughout the day. Taxol weekly for 9 months, then arimedex. Weaned myself from OxyContin completely by March 2014. Cancer re-emerged July 2015 with mets now to liver and moving down my leg bones so Doxil x 4 months. Pretty bad hand foot. A couple of days I couldn't walk. Got some temperpedic slippers which helped a lot. Back on OxyContin now 60mg throughout the day. Last CT beforeA/A showed liver mets disappeared.

    Just started A/A Jan 9. Hand foot has disappeared. Now that I'm talking them both at night, about all I have are headaches every few days. No D. Taking 10 mg Afinitor and 25mg Aromasin.

    When the cancer came back in July, I decided to host a living memorial for my family and friends and planned it for late February. While I'm feeling so much better than July, still doing it and lots of people are coming. I decided I want to hear what they have to say about our life together rather than have a funeral. Most people like the idea. I don't have an expiration date and could probably postpone it but one never knows..

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  • 2ATHENA2
    2ATHENA2 Member Posts: 9
    edited January 2016

    I was on Xeloda. My tumor marker dropped into the normal level from about 700. An interim oncologist said "Congratulations! we are going to take you off of this chemo." Why? Once metastatic, always metastatic I heard. Naturally, tumor marker bolted back up, but oncologist wanted to use Afinitor. Do Not Do It. I developed Pellagra (the mouth sores, stomachache, headache and rash they tell you about. Niacin and potassium helps that.) I had to have a tooth pulled. Wound has never healed. Bone at the bottom of a big hole. This condition, and the use of rinses containing alcohol and peroxide, gave me Trigeminal Neurosis on the left side of the face. I thought I felt pain when every bone in my torso and hips broke, but let me tell you! Neuralgia hurts. Super B Complex, Vit C, Magnesium and Manganese helped. For many of your side symptoms find books written by Adele Davis, such as Let's Get Well and Let's Eat Right To Get Fit.  She is a nutritionist in the 50's giving you the scientific lowdown on experiments with vitamins and exact dosages. Ebay, Amazon Used, or your own used bookstore. Afinitor doesn't get better. They only tell you it does.

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  • 2ATHENA2
    2ATHENA2 Member Posts: 9
    edited January 2016

    If you are on Afinitor, flush your toilet faithfully and leave the lid down at all times. Afinitor residue murdered 2 of my SickTiredcats who drank the toilet water.

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  • Sattipearl
    Sattipearl Member Posts: 98
    edited January 2016

    2ATHENA2, thanks for the advice re the toilet. I have 2 cats and while I've never seen them drink from the toilet, I will take no chances.

    Sitting outside my clinic awaiting my monthly with my onc. Labs earlier this week for blood and chemistry don't look bad. I feel good most days. Acupuncture weekly is also a big help. Had a 99 degree fever 10 days ago, then 2 days later woke up pain free. Lasted 8 hours and pain mostly remains reduced since.

    Film at 11.

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  • Sue2009
    Sue2009 Member Posts: 228
    edited January 2016

    2Athena2--thank u for your honesty. I read somewhere that Afinitor was rough, & shouldn't be on market. U have sufficiently scared me 😁 how's Xeloda, I have heard it can make hands & feet very painful. I am trying lowest dose right now, blood sugars already running higher. Getting labs checked tomorrow.

    Sattipearl--love your idea of living memorial. I have 6 kids, ages 19-30, no grands yet. Anyway I asked for one thing for Christmas. Letters from my kids, I told them I thought this might be my last X-mas. We had a wonderful holiday celebration over a week, but I did not get one letter, brats 😜 I feel that time w/family is important now. I haven't been to church much last couple of yrs, get too weepy, but now that I am still here, I want to get back into it. I miss it so much.

    2athena2--I do not get why stop med that was working.also, let me understand what u r saying, Afinitor is no good.

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  • Sattipearl
    Sattipearl Member Posts: 98
    edited January 2016

    test results = stable abnormal. It is my favorite phrase.

    I've been having some intense hip and knee pain off and on and now that it's more "on" am going in tomorrow for radiation consult to reduce pain. Will be my 4th radiation treatment series. Since April I've been having acupuncture weekly with a therapist who only works with cancer patients, am taking a load of enzymes as recommended by a trusted longtime nutritionist, and drink an elixir of beet kvass, ginger juice and turmeric juice, last 2 freshly squeezed, and I make my own kvass.

    So glad to have found this board. Thank you for your participation

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  • Sattipearl
    Sattipearl Member Posts: 98
    edited February 2016

    Sue, and all,

    I had my living memorial on 2/21.

    It was the most amazing experience of being loved that I had ever had. Over 250 people attended. Three of my friends performed songs, two of which were written for me. Others came to the stage with me and shared how I had made a difference for them in their life and/or told some funny story about me or us. It was fabulous fabulous fabulous. I recommend it to everyone whether you're currently dealing with a terminal illness or not.

    If you would like more details or know how I organized it you are welcome to inquire via PM.


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  • mybug03
    mybug03 Member Posts: 2
    edited March 2016

    Sattipearl, why are you taking enzymes

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  • Sattipearl
    Sattipearl Member Posts: 98
    edited March 2016

    mybug, enzymes on an empty stomach reportedly reduce inflammation and destroy cancer cells.

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  • Sue2009
    Sue2009 Member Posts: 228
    edited March 2016

    Sattipearl, how amazing, must of been very emotional.

    Anyone else struggling w/affinitor? Tried to bump me up to 5mg, made me tired, sore throat & cough. Dr worried about pnuemonitis says may also put us at risk for mets to lungs. They have started me on singulair & stop affinitor until cough goes away. very frustrating.

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  • 3-16-2011
    3-16-2011 Member Posts: 559
    edited March 2016

    So sorry Sue.I dont have experience with this but wanted to send hugs.

    Mary

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  • mybug03
    mybug03 Member Posts: 2
    edited March 2016

    Survivor sisters - I thought I had beat this "beast" after 16 years cancer free. In 2011 it came back! A 4cm tumor behind my reconstruction implant and 3 pea size lymph nodes in the area between breasts. The tumor grew backwards, through the spaces of my ribs and was touching the pleura of my lung. A biopsy was done and I had the same cancer - ER+, HER2-. I was given Femara and 8 months later everything was completely gone. Was cancer free for 4 years. Joint pain was a big problem. At a Onc visit, I was having a bad day and started crying about the joint pain. So she switched me to Tamoxifen. Within 2 weeks my joint pain was gone! Three months later my PET scan came back - the pleura of the left lung is LOADED with tiny tumors and my entire chest cavity's lymph nodes have cancer....there's alot going on!

    Onc considers this inoperable since there is so much cancer in the chest. She gave me Aromasin for 3 months and a new PET scan. Absolutely no improvement, markers went up. Switched to Afinitor/Aromasin. Started this combo on 1 Feb. Yikes, this drug is brutal!! I'm super tired, low appetite, and the mouth sores are soooo painful. Haven't eaten a decent meal in over a week and the weight is sliding off me. I'm feeling a little down which is so not me. Fingers crossed that this drug will clear this mess up.

    Any ideas on what to do about these sores? I was given a mouth wash which numbs my mouth but only lasts for a half hour. The label says to use every 6 hrs. I'm so glad I found this site. Wishing everyone a good day!



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  • 3-16-2011
    3-16-2011 Member Posts: 559
    edited March 2016

    Hi my bug

    So sorry you are here and having a difficult time. I started dexamethasone oral solution when I started afinitor. I used it religously for the first month swished in my mouth for 4 min. 2x a day. And no mouth sores. Now I use it for a week, if I injure my mouth (mostly burning my mouth on pizza). I hope this is helpful.

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  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited April 2016

    Bump for Lyndal


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  • Rseman
    Rseman Member Posts: 281
    edited April 2016

    Hello Everyone, I am about to start this combo after Xeloda has stopped working for me. I am looking for any helpful advice or words of encouragement that this treatment may offer.

    Thank you so very much,

    Renee

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  • 3-16-2011
    3-16-2011 Member Posts: 559
    edited April 2016

    Hi Renee

    Welcome. I have been on the combo 6 months and se have been very doable.The thing I was most worried about was mouth sores. My NP gave me steriod mouth rinse that I used daily for the first month and no mouth sores.

    I hope the combo works for you. I think I will have scans soon and I will let you know how it goes.

    Peace

    Mary


    Accidently posted twice so deleted one.

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  • 3-16-2011
    3-16-2011 Member Posts: 559
    edited April 2016

    Hi Renee

    Welcome. I have been on the combo 6 months and we have been very doable.The thing I was most worried about was mouth sores. My NP gave me steriod mouth rinse that I used daily for the first month and no mouth sores.

    I hope the combo works for you. I think I will have scans soon and I will let you know how it goes.

    Peace

    Mary

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  • bourscheid
    bourscheid Member Posts: 718
    edited May 2016

    Starting A/A as soon as we get it figured out which pharmacy my insurance will approve for shipping. This will be my 13th treatment protocol since Aug. 2008 (Stage IV DeNovo). Cancer is currently limited to my liver but it is getting pretty full in there!


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  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited June 2016

    Bumping this one for Artist.

    well wishing, STephanie

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  • Rseman
    Rseman Member Posts: 281
    edited June 2016

    Hey All--Has anyone run into this problem: after only a week of being on Affinator at just 5mg a day, my nuetraphils get dangerously low. Then I have to stop taking it for a week. My mouth sores have going away because I had to stop but when I started on the 5 mg they started back again. I keep having to get my CBC taken at least once a week now. I'm not sure if my MO is going to want to continue this way if my blood counts keep going too low. Just nervous

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