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Afinitor/Aromasin

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  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited February 2017

    Greek yogurt it is, Heather. Good idea. Amarantha, crying is a normal reaction, and I'm sure your onc was not shocked. Call back later and give them the rest of your questions, and ask that the doctor or nurse call you. Key2, if you have descending tumor markers and feel good, I really think your scan will be good. Good point, Kandy, that I can stop if it is intolerable. (Faslodex alone is still a good treatment.) I will go into Afinitor expecting to do fine and deal with whatever might come up. Here we go, girlwithacurl. You are just about a week ahead of me. Keetmom, I hope you can keep busy and avoid too much scanxiety.

    My onc is starting me with 5 mg, and will increase it to 10 mg after my body has some time to adjust. I suppose I had better bleach my teeth and get my dental work asap, huh? The specialty pharmacy helped me sign up for the copay card. Will start soon.

  • Key2
    Key2 Member Posts: 54
    edited February 2017

    Amarantha

    I did have the rash when I was on the 10mg Afinitor under my breast it was itchy I went to the breast surgeon and he told me its dermatitis ( cause I thought it could be IBC in other breast) I started using over the counter cortizone seems to help...but always check with your doctor. You know I had gone off Afinitor for a week now ( horrible cold) and notice it was starting to go away but when I restarted after the lung before issue it did come back, I do think if you read side effects of Afinitor there is a rash listed as a side effect.

    Shetland -

    Your doctor is smart to start you on 5mg and work your way up! I started on 10mg and it was to strong and my lungs reacted to it...my doctor restarted me on 5mg did great and now at 7.5mg

    I know you will do great and if you have any questions please reach out to us!!!


    Kim




  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited February 2017

    Thanks, Kim. All systems are go. I start Afinitor today. I read that blood levels peak in 1-2 hours. Since there is some evidence that cancer is more active at night, I think I will take it at bedtime. Unless that is likely to cause gastroesophageal reflux. Have any of you had that from Af? The package says with or without food. Any comments on that?

  • amarantha
    amarantha Member Posts: 330
    edited February 2017

    I do take it in the evening - and have gastro problems -but probably unrelated - so I take stuff to help with that. Good luck Shetland Pony !

  • Key2
    Key2 Member Posts: 54
    edited February 2017

    Here is my 2 cents on taking any chemo pill at night....

    I had heard taking the chemo pills at night before bed was better but not sure if true or not? However...

    When I was on IBRANCE I was getting really bad indigestion so I call the ong. Pharmacy at the hospital and asked them what I could take for the indigestion and the first thing he asked me was when was I taking the IBRANCE I told him at night right after dinner since you have to take with food. He told me to change to taking after breakfast...why I asked he....said when you take the IBRANCE at night and lie down your body is not moving the flow is not the same and I would be more inclined to get indigestion it appears the pill was burning my esophagus.

    He was correct and I changed to taking all my pills after breakfast this includes Afinitor and have not had a real issue unless I eat spicy foods. If I do get indigestion or reflux I take a tums and that seems to help.

    I take the exemestane after breakfast since you need to take with food and then wait 1/2 to hour and take Afinitor.

    You'll do great on this combo just remember keep a eye out for breathing changes or coughing and to keep the sores in the mouth away use the mouth wash 3 times a day.

    We are here for you!!!!

    Big hugs

    Kim

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited February 2017

    Ok, I will take it a couple hours before bed.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited February 2017

    Since I had to cut the 10 mg pill in half, it was not smooth and it felt stuck in my throat. I don't think the yogurt was thick enough. After a bit of panic, lots of water, and some food, I used the dexa mouth rinse and let some trickle down my throat a tiny bit. Next time I put the half-pill in mashed up banana and that worked great. Banana is thick and slippery.

  • Key2
    Key2 Member Posts: 54
    edited February 2017

    Shetland


    Afinitor comes in 2.5, 5mg, 7.5mg, and 10mg please check with your pharmacy and doctor about Breaking pill in half!

    If your doctor wants you to take the 5mg then she should prescribe that dose. I have taken the 10mg but got sick so my doctor ordered the 5mg to restart.


  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited February 2017

    I was surprised that my onc didn't get me 5 mg pills, but when I asked she said to cut the 10s in half. It was pretty dicey getting the pre-authorization in time, and I sort of wonder if the nurse who handled it didn't know I was to start with 5 mg. If that was the case, I can understand their not wanting to make any changes that could cause further delay. If I have any more trouble I will ask for 5 mg pills. I do have a pill splitter. I don't know how long before I move to 10 mg. One advantage of taking half-pills is that I will end up with a small back-up supply since I got 28 pills.

  • Key2
    Key2 Member Posts: 54
    edited February 2017

    Yes...I agree once your doctor orders the Afinitor it's hard with insurance to get approval for another lower dose which is what happen to me! But I did get it :-) just be sure to mention it to the pharmacy and your doctor.


  • proudtospin
    proudtospin Member Posts: 4,671
    edited February 2017

    Morning, I am new to stage 4 and this delightfully nasty drug combo. So far based on information you guys have given, i take the dang afinitor in a mouthful of Greek yogurt and drinking lots of water. Thanks for all those suggestions. I also have found gargling with the mouthwash helps me as I feel like I am getting a sore throat all the time.

    I am trying to get some financial assistance set up so using docs 5 MG samples till that is approved. I am on medicare and my part d guy told me the 90 day script would be 4100, Yikes! Scarey so really hoping United health can do something. Also concerned about paying that much money for 90 days if I then developed side effects to that level and need to change.

    You guys have been a huge help but sorry to have met you all

    Iris

  • mandymoo
    mandymoo Member Posts: 632
    edited February 2017

    hello everyone, I dont post much and try to read as many posts when I can. I have been on this combo for over 4 months now and just wondering if any of you ladies have been on this combot successfully for a long time. I was previously on Xeloda for 44 months before it stopped working, so I guess that I am just keeping my fingers crossed that I might be just as lucky with this combo.

    hugs

    Mandy


  • amarantha
    amarantha Member Posts: 330
    edited February 2017

    HI Mandymoo ! Glad you are with us here in this thread. How are you doing after four months ? Any signs of success ? How will it be measured. Do they do TEP scans ?

    and Hi Proudtospin, welcome to this thread and the trials and tribulations of Afinitor. The more the merrier, right ?

  • mandymoo
    mandymoo Member Posts: 632
    edited February 2017

    hi Amarantha, my body seems to be finally settling down. I was on 10mg for the first 3 months and I am now down to 5mg at my request. Mouth ulcers for the first month, then nausea, and I cannot bear to eat anything fried, so I have lost quite a bit of weight, but I can afford to lose it. My arm lymphodema is worse now and my right leg is now also very swollen and as it is not DVT so they are treating it as lymphodema.

    My tumour markers have gradually been decreasing with this combo and I had my CT scan and whole body bone scan last week. My results will be discussed with my oncologist next Tuesday.

    I would still like to know if there are girls that have been on this combo for a very long time.

    Hugs

    Mandy

  • amarantha
    amarantha Member Posts: 330
    edited February 2017

    I would like to know the same thing, mandymoo. i will be waiting impatiently with you to know the results of your scans.

  • amarantha
    amarantha Member Posts: 330
    edited February 2017

    Since I have been on Afinitor/Aromasine for two months, and my doctor sees improvement by touch, but I feel no improvement but on the contrary think it is worse, and since she apparently considers my sensations to be of no interest, and since the famous markers are completely nonsensical, leaving only her hands and my sensations to show improvement or progression, and since my oncologist has scheduled the next PET scan for two months from now in mid April, I have taken the step of asking my regular doctor to prescribe a sonogram; at least we can see if the right lymph node has gotten bigger since I began treatment. If the sonogram shows I am right, he and I agreed I would seek other opinions, particularly via the Institut Curie in Paris, which I believe, correct me if I am wrong, French people, is outside the system of public university cancer centers, for hopefully a truly independent opinion. Do I sound crazy and hysterical or pro-active ? Its my life on the line here, I wanted to say to the oncologist. If you were the one with a recurrence of IBC and told to wait four months to see if Afinitor is working, and your sensations and observations contradicted the doctor's observations, what would you do ?

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited February 2017

    I completely agree with you, Amarantha, that your own sense of what is happening in your body is important. Some oncs actually take that into account. Mine often asks me what my intuition and body is telling me. Is your onc refusing to do a PET scan sooner? When was your last scan?

    About mouth sores--I hope everyone on this drug has been prescribed the steroid mouth rinse.

    "Dexamethasone mouth rinse should be given prophylactically to prevent stomatitis associated with everolimus (Afinitor)/exemestane in metastatic breast cancer, according to Hope S. Rugo, MD, principal investigator of the SWISH trial and Director of Breast Oncology and Clinical Trials Education at the University of California Helen Diller Family Comprehensive Cancer Center, San Francisco. "This should be considered a new standard of oral care in this setting," Dr. Rugo said at the 2016 Palliative Care in Oncology Symposium."

    http://www.ascopost.com/issues/october-25-2016/dex...


  • amarantha
    amarantha Member Posts: 330
    edited February 2017

    Thanks for the support, ShetlandPoney. The last PET scan was before treatment began two months ago.

    About Dexamethasone - I did ask about it. It is unfortunately on the list of drugs I was given as interfering with the Afinitor. Perhaps if I were to show them the study you posted that would be helpful. Thank you very much for this information.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited February 2017

    Yes, show them the study. Make sure they understand that you don't swallow the dexa, you just swish and spit. Three months between PET scans seems to be standard for many of us, as does scanning three months after beginning a new treatment, so I think you can reasonably request one.

  • mandymoo
    mandymoo Member Posts: 632
    edited February 2017

    Amarantha, I remember that I felt the same as you for the first two or three months. I felt that the combo was not working and I also knew that my body was struggling with the side effects and I even ended up in hospital with a gall stone attack, which also then showed an enlarged gall bladder, and pancreas, and my liver also had a blockage somewhere, I cant remember where. Blood tests showed my liver function test was also bad with high ALT and ALS (??? I am trying to remember without locating the tests). My GP wanted to admit me to hospital but because it was between Christmas and New Year I decided against it and stopped taking the combo for a whole week. Now I am on 5mg, and my liver function test was all clear and I feel much better and inside, I am starting to feel that the combo is now working. I will know the results next week.

    So it appears that tests are done about the 4 month mark for this combo???.

    I am still waiting to hear from anyone who has been on this combo long therm. please??????

    hugs

    Mandy

  • yangtan
    yangtan Member Posts: 21
    edited February 2017

    I have been on this combo since April last year. I was on 7.5 mg afinitor and had bad mouth ulcer. Then I had gall bladder problem two months later. But my tumor was getting smaller. I dropped to 5 mg. no major side effects other than fatigues or laziness, whatever. I went on a tour to Japan in October when the tumor could no longer be felt and marker was within normal range. Then last month the tumor flared up again. Now I am on 7.5 mg and has a pimply face but the tumor is getting softer and marker is dropping. Praying that this will do the trick to rid the tumor and I can celebrate with another big excursion. Oh btw my tumor is on my clavicle lymph node

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited February 2017

    That is interesting, Yangtan, that you seem to have more success on 7.5 mg than on 5 mg. I have been thinking of asking my onc how long she plans to have me on 5 before increasing the dose. It has only been five days so far. I think we probably each have to find the level we can tolerate that will be strong without it causing damaging side effects. I kind of wish I could go to 7.5 and not straight to 10. Mandy, do you and your onc think your problems were the result of the combo taking a while to start working, or was it that the dose was too high for you?

  • Lyndal13
    Lyndal13 Member Posts: 4
    edited February 2017

    I have been on Everolimus and Exemestane for just over 12 months it seems to be working well. I will be having a ct scan next month. I have had side effects over this period of time but nothing i couldn't handle. At the start I was getting mouth sores which were horrible I use a steroid mouth wash. The only side effect that has stuck around is that all my food tastes bland 😩 but if that is all I have to put up with I am happy 😀

  • mandymoo
    mandymoo Member Posts: 632
    edited February 2017

    Thank you so much Yangtan and Lyndal13, This will definitely give us newbies hope. Good luck with your scans tomorrow.

    Yangtan, it was my personal choice to drop the dose to 5mg, and I may decide to increase it in a month or so. I was on Xeloda for almost 4 years before that, and after my gall stone attack and also getting Lymphodema in my leg, I decided that my body just needed a break. I certainly feel much better now and have a little more energy.

  • Lyndal13
    Lyndal13 Member Posts: 4
    edited February 2017

    I have been on Everolimus 10mg from the start of my treatment. I must be one of the lucky ones that don't have too many side effects. If you can call any of us lucky!!!

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited February 2017

    Thanks, Lyndal, for sharing that the combo has worked for you for 12 months so far, and that you have tolerated the 10 mg dose. We really do live with that glass half-full vs glass half-empty thing, don't we?

    Does anyone else have diminished taste from Afinitor? So far mine is ok...

  • keetmom
    keetmom Member Posts: 299
    edited February 2017

    I have no appetite, I am on end of my weight of where I should be anyway, gonna talk to Dr about it, tomorrow..

    First scan results since starting tomorrow, and I am starting exchieva, not sure how I am feeling about all of this. I am achy, but it could be I am sitting to much because I am tired...a vicious circle.

  • amarantha
    amarantha Member Posts: 330
    edited February 2017

    Yes, ShetlandPony, I have been living with the diminished taste; taste came back a little when I went off the Afinitor for four days. Sweet things taste - not sweet enough, oranges and tangerines taste - not sour enough or sweet enough, hard to describe, everything tastes disappointing. And like Keetmom, it also takes appetite away.

    Keetmom, Hi, how long ago did you start Afinitor ? Sorry you have no appetite. I don't know what exchieva is but I am going to look it up. Does it go together with Afinitoro/Aromasine ? or replace it ? (edited to add - okay, never mind, I looked it up, learned it is for bone mets. Sorry you have to deal with that. Sigh.)

  • keetmom
    keetmom Member Posts: 299
    edited February 2017

    Well I had progression, moving on to Xeloda..not complaining as I have felt awful and had little appitite.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited February 2017

    Sorry to hear progression, keetmom. I hope Xeloda is easy on you. I think it won't be as hard as the CT you had a few years ago.

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