Afinitor/Aromasin 2013

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  • Rosevalley
    Rosevalley Member Posts: 3,061
    edited April 2014

    Inky- pretty funny about all the supplements giving you expensive urine and indigestion! I laughed over that. I hope you get your xanax filled so you can sleep tonight.

    I couldn't sleep at all last night. My allergies were running full tilt.. running down the back of my throat and out my nose. I took a Benadryl and I was up at 1am wide awake. Go figure. Here all these OTC meds add Benadryl for a good nights rest. It helps with the nasal drip but nothing keeps me asleep continually for 6-7 hours. How do you folks get to sleep and stay asleep? I am sure poor sleep contributes to fatigue. It's a vicious cycle. 

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  • Danishgirl66
    Danishgirl66 Member Posts: 163
    edited April 2014

    You are not at all alone with the achy exhausting fatigue.  I get about 12 hours of sleep a night with the help of Ambien, usually wake up feeling pretty good for about 6 hours, then have to lay down.  It's hard to believe that chemo would cause more fatigue than this.  My finger nails are starting to crumble.  Still have mouth sores and starting to get a sore throat that just doesn't go away.  Ugh!

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  • naturegirl2
    naturegirl2 Member Posts: 332
    edited April 2014

    skylotus, Catesmom, and Inky, let us know your results please.  Hope it's good news for the three of you!

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  • Inky
    Inky Member Posts: 153
    edited April 2014

    Well folks, it looks like I'll be sticking around with you for a while! The news from my oncologist was as good as I could have hoped for, and far better than I expected. Aside from my two small supraclavicular nodes, the scans found no evidence of disease anywhere. So not only can I continue with A/A for now, but I may even be able to have those two nodes surgically removed. I couldn't be happier with the report. I hope everyone else here has as good a response to A/A as I've been having.

    Speaking of crumbling fingernails, I mentioned this once before, but I finally did manage to find a product that helped me greatly with my fingernail and toenail issues. It's sold only in the UK, but it's not very expensive and was sent to me quickly. This is it:

    http://www.mosaiclife.co.uk/product/chemo-nails-on...

    Thanks for allowing me to share my good news. Love and hugs to all!

    Ingrid

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  • sandilee
    sandilee Member Posts: 1,843
    edited April 2014

    Wonderful to hear, Inky.  I'm not on this combo, but I know it's in the toolbox for later. 

     I've been reading this with great interest, and  I thank you all for posting your results. 

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  • Danishgirl66
    Danishgirl66 Member Posts: 163
    edited April 2014

    Hi Ingrid,  Thanks for sharing your good news!  Doing a happy dance.  I hope you meet NED soon.

    Hugs, MaryAnne   PS  Thanks for the nail care link.

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  • Rosevalley
    Rosevalley Member Posts: 3,061
    edited April 2014

    Great news Ingrid! Also doing the happy dance for you. Thanks for sharing.

    Now if the others awaiting reports can get such super news wouldn't that be fine! Crossing fingers and toes.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2014

    hi ladies. new to A/A and i have this bumpy rash under both arms.  how can i treat it? one side is itchy but the mast side is not. maybe i just cant feel it. thanks.

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  • ductal
    ductal Member Posts: 65
    edited April 2014

    [ have been on afinitor for over a year.  will write more later. does anyone knoe avg life expectancy of stage 4 breast mets to bones, many of them?  I was 3b 2009.  I still need time with my child.  good luck everyone.  i have lobular, 30 positive nodes removed 009.

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  • naturegirl2
    naturegirl2 Member Posts: 332
    edited April 2014

    inky, that is fabulous news girl! I'm so glad for you.  This gives others hope in taking A/A combo as well since you have been on this combo for some 9 1/2 months and/ taking 7.5 mg most of the time.  Wow!  Let us know how and when you have those two nodes surgically removed.  This is great. 

    Okay, we are waiting for skylotus and catesmom's results.  Hope they have good news as well!

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  • 208sandy
    208sandy Member Posts: 2,610
    edited April 2014

    Oh Inky - such wonderful news - especially because you've been mostly on 7.5 - that is the level I am hoping to stay at - hope you're out celebrating - I too am hoping to hang on till pacbociclib.  Enjoy yourself you've brought hope to so many with your news.

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  • Romansma
    Romansma Member Posts: 1,515
    edited April 2014

    Great news Inky....congrats to you!  

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  • naturegirl2
    naturegirl2 Member Posts: 332
    edited April 2014

    Several of you have mentioned holding out for pacbociclib treatment.   There was something else I read in this thread others are holding out for in the way of new treatment for Stage IV BC but could not find it.  Does anyone remember?

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited April 2014

    Just thought I'd post some relief I've had from Affinitor mouth sores.  On my last canker sore, I had ordered Canker-Rid from Durhams bee farm.  You put a drop or two on the sore.  It forms a shield and dries quickly to relieve pain & your sore goes away in 2 to 3 days.  Because your mouth is wet, many medication do not stay to relieve pain for a long time; this dries quickly.  I ordered it online for $19.

    Saw my onc today.  He is increasing me to 10mg 3X weekly.  I hope I can handle it.

    Terri

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  • jeanieb2
    jeanieb2 Member Posts: 319
    edited April 2014

    ductal - I was originally diagnosed in 1992, had bi-lateral mastectomy, 6 months chemo and was fine until June 2009 and it recurred as Stage IV.  I was on Femara for 2 years, then on to Xeloda for 1 year, then on to Taxotere along with Xeloda for a year and now am trying this one.  I think I may be moving on, due to an allergic reaction to the Afinitor but will know more on May 8 when I see the onco.  As for how long, no one really knows but I have been Stage IV for 5 years now and still going strong.  Of course the treatments tend to slow a person down but I will take that if I can just keep going.  I know on some of the other threads people have been Stage IV for over 10 years.  There is always hope, and like my onco told me, every year you keep going there is a new drug out there to try and sometimes can go back to ones that had quit working, I was amazed at how many drugs are out there since I first had it in 1992.  Keep thinking positive and enjoy your child. 

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  • Woodylb
    Woodylb Member Posts: 1,454
    edited April 2014

    http://stemcell.stanford.edu/CD47/

    Naturegirl2,

    I found this new study by Stanford university the first phase trials will start summer or fall 2014 . It was successful in eliminating most dangerous cancers on animals they are getting ready to start it on humans. To me it looks very promising and make a lot of sense and i hope we will all stick around to see the results . :) it is a medication of anti CD47 which is already in our bodies and it protects our cellsand diminishes   with age but they found  cancer cells to contain a lot of this protein to protect it. Good read and very hopeful . 

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited April 2014

    Woodylb:  My onc mentioned this trial to me today.  If my next scans do not come out better, he's thinking of enrolling me for this. He said I would be perfect for this.

    Terri

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  • Woodylb
    Woodylb Member Posts: 1,454
    edited April 2014

    ibcmets, did he mention when will they start this trial? Because the last i read was beginning of summer 2014 or the fall. If you have the chance to be enrolled it would be great. It seems the animal trials worked on most cancers  among them breast cancer. I wish you luck and i wish this new discovery  success because it will give hope to all humanity and it will brake the morbid outcome casted over most of cancer patients and their loved ones around the world. 

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  • naturegirl2
    naturegirl2 Member Posts: 332
    edited April 2014

    Thanks woodylb for the link.  Sounds promising!  Good luck ibcmets with your dosage change.  I'm dealing with scalp sores and have been for a while.  Suggestions would be helpful please.

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  • 208sandy
    208sandy Member Posts: 2,610
    edited April 2014

    Naturegirl - my PCP says the sores (and the nose sores) are fungal in nature - she told me to get Nizoral shampoo - it's available at any drugstore - you use it to start 2X the first couple of weeks and then afterwards once a week - it worked for me - scalp is still tender - hair looks like crap but hairloss has stabilized and sores are gone.  If you get nose sores use neosporin - works like a charm - I love my PCP - notsomuch my onc as this treatment is killing me - honestly I've never felt this bad in my life!!!

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited April 2014

    Thanks Naturegirl2 & Woodylb:  Remember my previous post on Canker-Rid.  I showed my onc this yesterday & hopes it continues to work for me as I expect to get a lot more sores increasing the dosage.

    Terri

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  • naturegirl2
    naturegirl2 Member Posts: 332
    edited April 2014

    208sandy-thanks for the info on what do use for scalp sores.  With regard to Nizoral shampoo, does it have a prominent smell?  I have multiple chemical sensitivity and cannot tolerate harsh smells. :(  Docs attribute this to my treatment of chemo and radiation from years ago.  I hope you start feeling better soon 208sandy.

    Anyone else with scalp sores treatment as to what to use?

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  • Romansma
    Romansma Member Posts: 1,515
    edited April 2014

    just checking in.  I'm still here.  Doing ok.  A bit weak, tired.  Shouldn't complain, if this is working, it's doable....so far!

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  • naturelover
    naturelover Member Posts: 91
    edited April 2014

    Hope, I love your attitude!!! I feel the same way most of the time but I'm having a difficult time right now with the mouth sores. The magic mouthwash does help a lot though! I'm a little concerned that I will lose weight and I don't need to right now.

    Has anyone tried eating fruit smoothies? If so, which one doesn't burn, banana???

    Hope everyone has a great evening and a good night's rest!!

    Judy

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  • Woodylb
    Woodylb Member Posts: 1,454
    edited April 2014

    Romansma, i am glad you are doing well on this combo and better yet it seems to be working... Very happy for you and I love your optimistic attitude keep it up !

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  • Danishgirl66
    Danishgirl66 Member Posts: 163
    edited April 2014

    naturelover,  I make smoothies a lot because of all the stuff I can add just to get some good nutrition.  Right now I have 4 mouth sores.  I try to numb them just before drinking.  I usually make it out of frozen blueberries and cherries, fresh spinach, almonds or cashews, flax seeds, coconut water and for extra fat some coconut paste.  A half of squeezed lime juice adds a lot of flavor and really helps with that tinny taste from all the meds.

    If you look on line you can see all kinds of recipes.  

    208sandy,  I agree, this A/A combo is really making me tired and feel like i'm getting the flu.  

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  • Romansma
    Romansma Member Posts: 1,515
    edited April 2014

    Naturelover....when I went through about 10 days of awful sores in my throat and esophagus, I relied on smoothies to get a little nourishment.  Everything worked except citrus.  Make sure you get some protein too....add almond butter, or almond milk....or even peanut butter and banana works.  I remember how awful I felt....I really hope you feel better soon!

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  • naturelover
    naturelover Member Posts: 91
    edited April 2014

    Romansma and Danishgirl: Thanks so much for the great info!! I am going to have to buy a blender and fruit (no citrus) today! I can add peanut butter, etc. for the protein! I can't wait to try one!

    I think I can eat mashed potatoes and puddings too! I really love meatloaf and I know I can't eat it at all with these sores! The magic mouthwash works but every time I use it, it burns and makes me feel weak from the pain! I know I am going to keep toughing it out because this combo has worked for so many on here!!

    Thanks so much for the suggestions!! Hope you all have a peaceful and wonderful day!!

    Judy

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  • Rosevalley
    Rosevalley Member Posts: 3,061
    edited April 2014

    Hi All - I feel badly that you are all suffering with mouth sores. We have some picky teenage girls in our house who like to skip breakfast. So we have quickie back up smoothie recipes we use. I buy vanilla soy protein powder and put a scoop in with the frozen or fresh fruit, yogurt and water or milk. Sugar to taste if needed. Blend the stuff together and they drink it and run. They taste wonderfully rich. If you are worried about using soy any healthfood place has alternative protein powders, whey, wheat etc.. bunch of things to choose from. Also if you can buy a big tub of Nancy's Vanilla Yogurt,  it's full of protein and makes great smoothies. I live on the West coast so I don't know what is available in your neck of the woods.

    My mouth sores stopped, thank goodness. They were miserable. The aches, dry mouth and ocassional weakness thing has not stopped. I get wickedly tired. I have this tickle in my chest that makes me cough and I can't get rid of that. Afinitor days (I take it every other day) gives me loose stools and wildly puffy feet and hands- I call my feet pillow tops ouch. Nothing tastes right and I get short of breath with lots of activity but none of this stops me from getting out and doing things. I just am wiped out at the end of the day! I can't imagine taking Afinitor every day; I think I would wilt.

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  • 208sandy
    208sandy Member Posts: 2,610
    edited April 2014

    Well, Rosevalley I finally did wilt - I stoped taking the pills today - I have been essentially bedridden for the last 10 days - I did get up every single day and try to get through but this weekend was almost a complete write off - and then yesterday I had some banking to do and honestly it was the end - I woke up this morning  crying, hurting and so weak I just couldn't go on - I have an onc appointment tomorrow and we'll discuss the next step but I guess I've failed on A/A - even if it is working I can't exist like this - I was active and quite able to care for myself only 8 weeks ago, I have no qol so moving on......

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