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Afinitor/Aromasin

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Comments

  • 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.

  • Unknown
    Unknown
    edited November 2016

    Hi LesleyB, I don't know if it was the Afinitor or the dexamethasone mouthwash (also a steroid) but I found myself constantly thirsty and needing to pee every hour. My doctor said it looked like these drugs had caused a diabetes type reaction ( and I have been pre diabetic in the past) . Anyway, after stopping both these symptoms disappeared.

    I agree with your comment too that we are so limited here in Australia with the drug options available to us.

    Hope you feel better soon LesleyB. Hugs, Judy

  • Key2
    Key2 Member Posts: 54
    edited November 2016

    Kandy and ladies

    Just checking in to see how your feeling on Afinitor?

    I've been on mine for a whole month just got tumor markers back and the markers are finally heading DOWN from 96 to 82 small but welcome change!

    Very little side effects except for not sleeping depressed and slight heartburn. My ong told me last week that these are positive signs minus heart burn. She feels before she did the tumor markers and blood work that I was showing signs of menopause which is good and the drug was blocking the estrogen.

    I will make appointment with lung doctor just to make sure lungs are clear Not showing signs of any issues but like to keep a Six month check up with him.


    Hope you all had a wonderful thanksgiving and please keep in touch.


    Hugs

    Kimba

  • Kandy
    Kandy Member Posts: 424
    edited November 2016

    I was just thinking today about no one had posted lately. Key2 so glad you checked in. That's awesome that your markers are headed in the right direction. Especially excited for you with minimal side effects. Hooray for that. I am also doing well this time on it. Besides exhaustion and extreme thirst no other side effects. May we all do great on it. Wishing everyone the best.

  • keetmom
    keetmom Member Posts: 299
    edited November 2016

    I'm tired and have a canker sore on end of tongue , it hurts to even talk...but I am eating....also have been drinking a ton of water, because it feels good on mouth.....I see Dr for first time next week...hopefully this sore goes away...I think the early darkness isn't helping my tiredness at all..

    .

  • Key2
    Key2 Member Posts: 54
    edited November 2016

    Hi Ladies


    Spoke to soon :-( at 3:30 this afternoon I started coughing up mucus so my doctor placed me on antibiotics right away tonight! I did not want to go to the hospital so I'm keeping my fingers crossed! I'll keep you all posted but do feel better already.

    Kandy - I looked back and remember you getting a horrible cold within the first two weeks...hopes this is the same for me and not the side effect of the drug :-(

    Keetmom - I know we had mention in the feed and really works for me is to use whipping cream everyday when I take the Afinitor then do another squirt to swallow by its self followed by a full glass of water.

    Let's stay in touch glad to hear from you ladies!!!!

    Kimba

  • Kandy
    Kandy Member Posts: 424
    edited November 2016

    oh no Kimba, I certainly hope it's just a cold. I did get a cold on my second week. My DH was so nice to give it to me. I think it lowered my resistance and then I had all the mouth sores. I sure hope that doesn't happen to you. Get plenty of rest.

  • Key2
    Key2 Member Posts: 54
    edited December 2016

    Thanks Kandy

    No it was not a cold! It was a reaction to the Afinitor :-( all I got to say is I'm am so glad that I keep antibiotic on hand because the cough came out of nowhere I was doing great all day then it hit me at 3:30 pm with horrible cough and a fever of 100.4 which ended at 4:00 in the morning both fever and continuous cough.

    Doing much better now off Afinitor for a week then back on.

    I'll keep you all posted but thought you should be aware of side effects and getting a cough. Make sure it's addressed right away.


  • Kandy
    Kandy Member Posts: 424
    edited December 2016

    Key2, sure hate that happened. Are they going to reduce the dose when you start back? That's crazy that it happened so quick. I'm glad you are doing better. Let us know how you are getting along. Wishing you the best.

  • keetmom
    keetmom Member Posts: 299
    edited December 2016

    picked up magic mouthwash today...hopefully it will take care of mouth sores . what time of day are you taking meds. I'm doing aromason in am and affinitor at dinner but wondering if taking them both at night would be better, almost feel icky in am after taking meds.

  • Unknown
    Unknown
    edited December 2016

    Hey there Kimba, Kandy and Keetmom,

    Just checking in to say hi and pleased to read you are all doing mostly well - Kimba I'm glad the cough and fever was resolved with antibiotics.

    I saw the Oncologist last Thursday and as I felt so well they have decided to put off the scans until February and I don't have to go back to the Oncologist until February either. I am seeing a gastroenteologist on 19 Dec though with a view to getting a colonoscopy as my CT scan at the time of my Stage IV dx showed a thickening and possibly collapse transverse colon. So I just want to make sure there is no cancer in the colon - not that it would make much difference to the treatment plan, except that they might cut out part of the colon if it had cancer.

    Anyway, still on Aromasin and Xgeva and feeling great. Off to Melbourne this weekend to see the kids. My 20 year old son leaves for South America on Monday for 3 months (having his 21st there!) I will try not to worry!!

    Wishing you all well

    Cheers, Judy

  • Kandy
    Kandy Member Posts: 424
    edited December 2016

    Keetmom, I do hope the mouthwash works quickly for you. I do both pills in the morning. I take the Afinitor first, surrounded by cool whip. Then a glass of water. Then I take the aromasin with food. I drink a lot of water throughout the day. My Dr thinks that cuts down on side effects. I do the dexamethasone mouthwash 4 times a day trying to keep from having anymore mouths sores. This is different from the magic mouthwash. I also take valtrex twice a day for side effects. These were added after I had such a time with the sores. As far as taking them at night, it is worth a try for you. My contract said it doesn't matter what time of the day you take them. Just make sure aromasin is with food and Afinitor is with a glass of water. I wish you the best.

    Judy, so glad you are feeling so well. That is great news. Enjoy your trip and enjoy every moment.

    Wishing everyone the best.

  • Key2
    Key2 Member Posts: 54
    edited December 2016

    keetmom-

    I had asked Kandy about when she took the pills before I started and I'm glad I listen to her about taking it in the morning...here's why for me.

    I was on IBRANCE before and had also talked to the ong pharmacy about my bad heart burn he suggest that I take the pills in the morning because taking at night after dinner or before going to bed can cause heart burn due to no activity or movement in the esophagus after taking the pill. Not sure if true but worked for me.

    Drink TONS of water too! I drink a gallon a day!

    Kandy- no my doctor told me to start taking the Afinitor same dose after 7 days..however I do have an appointment with my lung doctor so I will also check with him because of what happen. I always make sure I do a sweep of all my doctors every six to nine months to make sure all in order they include heart,lungs, breast surgeon (because I have IBC) and thyroid doctor since I'm on Synthroid.

    Ki

  • keetmom
    keetmom Member Posts: 299
    edited December 2016

    I hate water, working hard at drinking it....but it is tough..


    Any one else finding their skin really dry, around my nose is really irratated and dry....

    Feeling better then I did in begingin..g

  • Kandy
    Kandy Member Posts: 424
    edited December 2016

    Hey Keetmom, so glad you are feeling better. Please try really hard to drink lots of water. I average about 15, 16.9 ounce bottles a day. I am extremely thirsty. So this is easy for me. Try putting a water enhancer in it and see if that helps. I love strawberry/watermelon, but there are tons of flavors to choose from. I really haven't noticed any sign of dryness, at least no more than I already had. My nose does seem to like to run occasionally. Hang in there.

    Key 2, how are things going for you? I hope you are feeling better too.

    Wishing everyone the best. Enjoy the moment.

  • Key2
    Key2 Member Posts: 54
    edited December 2016

    Hi Kandy

    Doing much better! Doctor told me last week to start Afinitor on Tuesday however I'm not going to get back on Afinitor until I am completely clear of coughing (which I still have a slight cough) and I have seen the lung doctor and had X-ray. Sometimes we must listen to out bodies first and the doctors.

    I watch U tube video on Afinitor last night a couple from doctors symposium very interesting...they really do expect great things...see attached video


    I'll keep you posted on doctors appointment this week!


  • lesleyb
    lesleyb Member Posts: 7
    edited December 2016

    Hi everyone. Having such a rough time with this Afinitor. Still struggling to bring my blood sugars down. The high readings are causing neuropathy in my hands and feet. Skin is extremely dry. Have water retention also. I think the worst thing is the change of taste in my mouth. Nothing tastes the same. Everything tastes different except perhaps some fruit. I cook up nice healthy meals for my husband and I but I get half way through it and just can't eat it. Might have to go see a dietitcian to get some ideas I think. Reminds me of when I had chemo years ago for my primary although that was shortlived.


    Anyone else have this side effect and did it last forever. I was dropped to the lower dose of 5 mg about 2 weeks ago to address the side effects but it hasn't made much difference. Feeling really tired and horrible at the moment


    Lesley

  • Key2
    Key2 Member Posts: 54
    edited December 2016

    Hi Lesley


    I'm so sorry to hear your having a hard time on Afinitor...I had been on Afinitor for 6 weeks and got this horrible chest infection only. No other issue for me yet.

    I had read about some of the side effects you had mention that your going thru :-( the only thing I do know since I only have one kidney is that I have been drinking a gallon of water a day to flush the kidneys not sure if this will help you but I had read that you must drink a lot of water on this pill and if you,want to avoid having mouth sores use the prescription mouth wash dailyand take the Afinitor pill in morning with whipping cream.

    Hope you feel better soon and please keep us posted on how you're doing.


    Best


    Kim



  • Kandy
    Kandy Member Posts: 424
    edited December 2016

    Lesley, I have not had the issues you are having, I certainly hope they can get that under control.

    Key2, hope that cough goes away soon.

  • Key2
    Key2 Member Posts: 54
    edited December 2016

    Hi Ladies

    Just wanted to give you a Afinitor update from my unexpected cough and fever last week! Saw the lung doctor today he said I had pneumonia which could have been a side effect from Afinitor (he is almost positive) or I could have been getting sick anyway. He did do X-ray of lungs all clear no cancer whew! He did listen to chest heard wheezing so I'm on steroid for 6 days plus inhaler.

    Also noted I had a very bad rash at the same time I came down with pneumonia under left breast plus very painful on the ribright under the rash..he strongly thinks it was shingles ( the rash and pain has gone away since stoping afinitor)

    The thought process is to go back on Afinitor in a week after finishing steroids and keep a,close watch on any cough or rash. If develops again I will need to lower dose or get off Afinitor!

    I decided along with my oncologist to see lung doctor every 6 to 8 weeks regardless of any cancer drug I take so they can keep a watchful eye out for any issues.

    Finger crossed I'll keep you all posted but really wanted you to always keep a watch out for a dry cough on this Afinitor it really could turn into Something!

    Warm regards,

  • Kandy
    Kandy Member Posts: 424
    edited December 2016

    Key2, please take care of yourself. The pneumonia is not a good sign at all being on this drug. I do hope the next time around is better for you.

  • Kandy
    Kandy Member Posts: 424
    edited December 2016

    Just wanted to give a quick update. So far, I'm still doing well on this combo. I went to the oncologist this week, he is doing another PET scan on the 23rd, I'm sure hoping the results will be a good Christmas present and not a bad one. Things are looking as if the combo is working, my tumor markers have fell 160 points in 2 months. They have always been very reliable. So I'm very hopeful. I hope all you ladies have a very Merry Christmas. Wishing everyone the best.

  • keetmom
    keetmom Member Posts: 299
    edited December 2016

    I went in yesterday too. I will scan in the end of Jan after 3 cycles, talked to the pharmacist about taking the 2 drugs together. she said there is nothing in writing about tit but they both are metabolized in liver with same enzymes so if possible it might be better to take them at different times.

    Over all I am ok, very tired . ...but I live in WI And it's cold and the long dark days are rough a day always have been tough on me.....soon the days start getting longer again

  • Key2
    Key2 Member Posts: 54
    edited December 2016

    glad to hear you all are doing great in this drug!! It really is a great drug!!! Once we get the little issues out of the way it is a very workable pill to take.

    Happy Holidays to you all!!!


    Stay warm and be safe.


    Kim

  • JustJean
    JustJean Member Posts: 170
    edited December 2016

    Ladies, my oncologist is probably putting me on Afinitor to go with my Aromasin. This will happen after my PET scan next week barring any progression, at which point the treatment plan may change.


    I've been reading about mouth sores and I don't understand why it's necessary to take this pill wrapped in marshmallow creme or something similar - why aren't the pills coated well enough with the normal coating so that we don't have to do that?


    Also, how prevalent is the nausea/vomiting that I've been reading about? If there is anything I avoid like the plague it's stuff that makes me nauseous.


    Any words of wisdom/experience for me? I'm really nervous about going on this drug!


    Thanks,


    JJ

  • Kandy
    Kandy Member Posts: 424
    edited December 2016

    JJ, I'm not sure why they don't coat them but I will tell you what I think. I know there is not any formal documentation as to rather or not that makes a difference. I believe the company believes it does not. It is known to cause inflammation in mucous membranes and I do not think that they think it's because of contact with the pill. With that being said, women who have actually used the drug, a lot think it does matter. I honestly do not think it makes a difference but I also do cool whip with mine. After being on the drug for 2 1/2 weeks I broke out with mouth sores. And it was worse than I had imagined. They were on my cheeks, on my tongue and under my tongue. I was unable to eat or drink. My oncologist took me off of it so it would clear up. He also put me on dexamethasone mouth rinse, and valtrex. I do the rinse 4 times a day, and valtrex twice a day. I would strongly recommend both drugs when you start it. After the mouth sore problems I never want that to happen again, so I do everything, even the cool whip, lol. I haven't had too much problems with N/V. Every once in a while I will have a wave of nausea. If I eat a few crackers it will go away. Im definitely more tired than normal. But overall I think it is a doable drug so far. I have been on it for 2 1/2 months. My tumor markers have fell 160 points. So far they have always been accurate on what is going on. I am getting a scan at the end of the month so we will see then. Wishing you the best

  • Key2
    Key2 Member Posts: 54
    edited December 2016

    Hi JJ

    I never got mouth sores maybe because I used the prescription mouth wash that the doctor gave me and use it staring the day before..I have watched videos from doctors symposium and they also mention how important it is to use this mouth wash to prevent mouth sores. Also from day one since I have read on other threadsto wrap your pill in a marshmallow or place pill in Palm of hand squirt whipping cream and chase with a glass of water. Also someone else mention on here to use pill capsules you can order from amazon.

    I am not sure why the manufacturer does not coat the pill knowing the side effects

    Pay attention to your body such as a dry cough or canker sores and drink a ton of water to keep your kidneys flushed. This pill worked great for me for the first month tumor markers went down from 96 to 82 however I had a dry cough for a few weeks and really did not pay attention to it and got a lung infection so now I'm on stroids for a week then back on Afinitor.

    I was on IBRANCE it never worked for me for the three months I was in it and when I started Afinitor I notice right away I was feeling better and knew this drug was working for me...

    We are all here for you ask any questions and stay positive.

    Kimba

  • JustJean
    JustJean Member Posts: 170
    edited December 2016

    Hi Kandy and Kimba,


    Thanks for the info. I will definitely order some capsules from Amazon, stock up on extra-creamy whipped cream in a can, and run dexamethasone mouth rinse, and valtrex, past my oncologist next week. She did mention a mouthwash but did not specify what it was.


    What size are these pills so I know what size capsules to buy?


    This. Just. Sucks.


    JJ

  • keetmom
    keetmom Member Posts: 299
    edited December 2016

    I started on the meds a month ago , didn't start with using ready whip...got mouth sores, used magic mouthwash got them cleared up..now using readywhip..no mouth sores, not using mouthwash on a daily basis either

  • Key2
    Key2 Member Posts: 54
    edited December 2016

    Hi all

    Just checking in to see how it's going on Afinitor and Aromasin?


    Hope your doing well and if I don't hear from you Happy Holidays!!

    Kim

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