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Afinitor/Aromasin

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Comments

  • BaseballFan
    BaseballFan Member Posts: 46
    edited February 2013

    I got 3 mouths sores within the first week. Onc prescribed Magic Mouth and they were gone within a week.

  • sueco
    sueco Member Posts: 62
    edited February 2013

    I am only into day two and still would not know I am taking this med.  I am taking 10 mg which seems common along with 25 mg of aromosin.  I just use a teaspoon and scoop out marshmallow creme and then push the pill into the cream.  Works great.  Also, I filled a pitcher with a mix of 1/4 tsp. salt to one cup of water and often just rinse out my mouth during the day as a nurse suggested.   I sure hope my sweets continue to taste good.  Coffee and other foods still taste okay.

  • countrygirl10
    countrygirl10 Member Posts: 1
    edited February 2013

    HI, I RECENTLY TRIED THE A/A THERAPY,  ONLY LASTED 6 WEEKS, I NEVER DID GET MOUTH SORES.  HOWEVER, I NEVER BECAME SO RUN DOWN IN MY LIFE, SO FATIQUED I SPENT ALOT OF TIME SLEEPING MOST DAYS, TO TIRED I COULDN'T FUNCTION, THEN HAD FURTHER METS SHOW UP ON MY LIVER.  SO BACK ON ADRIAMYCIN, THEN TO START 3 COMBINATION DRUGS IN A WEEK.  VERY FIGHTENED!!!

  • ForestDweller
    ForestDweller Member Posts: 55
    edited February 2013

    I keep the sweets in moderation, of course. My doctor wants my weight in the normal range and made me lose 8 pounds. I lost 10 and try hard to keep it there.

    Salads are my favorite food but I'm not allowed anything raw. This is so hard for me. I could live on salads and red grapes.

    We had baked cod for lunch. What in the world is rockfish? Hopefully its not as ugly as monkfish....lol.

  • jas2
    jas2 Member Posts: 2
    edited February 2013

    Hi Forestdweller

    I haven't been on this site for a while but I notice that when you were on xeloda you went to NED. Were you still NED when you came off it? I ask because a lady over here in the UK was taking xeloda for 9 years and this kept her stable. Maybe if this A/A doesn't work for you they could try xeloda again and keep  you on it for longer. 

    By the way, I have been on Afinitor/ Aromasin now for 7 months and have had good results. Main SE, mouth ulcers and some fatigue but both manageable. I have had small lung mets now for 18 months and these are no worse. I also had a small tumour under my arm which is now half the size it was. Good luck.

  • ForestDweller
    ForestDweller Member Posts: 55
    edited February 2013

    Jas2...we thought I was still NED when I switched from Xeloda to Femara. Had a scan after a couple of months on Femara and two areas on my hips lit up. Then my oncologist and I looked at the previous scan when I was still on Xeloda and saw that the same lit up areas were already looking iffy then. So I failed both drugs. I don't know how anyone can take Xeloda for all those years....I felt awful and had a bad case of HF.



    Loneplume....did you check your temperature? I'm a walking hotflash.

  • eshinall
    eshinall Member Posts: 41
    edited February 2013

    Hi,

    I was diagnosed with Stage IV in July, 2012 after being diagnosed with Stage I in 2008. I was on Tamoxifen from 2008-2012, which ultimately failed. I tried Femara from August, 2012 until December, 2012. I had 2 spots of bone mets and then when scanned 11/30/12 I had a new bone met spot and 1 new liver tumor. I started Aromasin and Afinitor 12/15/12. I have had 2 mouth sores, some shortness of breath (mild), elevated liver enzymes and a whole body itchy rash. Everything seems to have settled down except the itchy rash. I know it's better than cancer, but OH MY GOSH, the itching is AWFUL. It is literally my whole body. Does anyone out there have the rash this bad? It's enough that I'm considering stopping this drug, but I work full-time and have an 11-year old daughter, so I don't know what to do. So far the tumors in my lymph nodes and over my sternum are shrinking a lot.

    Anyone out there with advice?

    Thank you,

    Liz S.

    Iowa

  • ForestDweller
    ForestDweller Member Posts: 55
    edited February 2013

    Welcome eshinall. Wow shrinking tumors, that's what we want to hear. Ask your doctor if you're allowed to take Benedryl and use hydrocortisone cream.

    I had the rash badly under my armpits....then isolated spots in other places. It has pretty much stopped on its own now.

  • FriendRN
    FriendRN Member Posts: 2
    edited February 2013

    Loneplume and all -- Thanks so much for the advice about side effects of Afinitor. My friend will be starting as soon as it gets approved by insurance. I really appreciate everyone's practical advice to pass along to her. 

    Forestdweller -- just wondering why you aren't able to eat anything raw. That would be tough when you really like salads. 

  • ForestDweller
    ForestDweller Member Posts: 55
    edited February 2013

    I can't eat anything uncooked because I'm always immunosuppressed. In 2011 I almost died from either a salad at a restaurant, strawberries from our garden, or a cantaloupe from a store. I had an abcess in my brain and had to have brain surgery and 6 weeks in the hospital on antibiotics. My leg and arm were affected by the abcess and my leg never did return to normal. I taught myself to walk again but it's difficult and painful. Not something I want to repeat. Be careful everyone.

  • ForestDweller
    ForestDweller Member Posts: 55
    edited February 2013

    That should be abscess. I do this on a phone and it's too tiny to edit text....lol.



    Also I forgot to mention the culprit in my brain was listeria.

  • ForestDweller
    ForestDweller Member Posts: 55
    edited February 2013

    Loneplume. . .are you OK? I'm worried about you since it sounded like you could possibly have fever chills.

  • eshinall
    eshinall Member Posts: 41
    edited February 2013

    Hi Loneplume,

    My oncologist recommended drinking a gallon of fluids per day because Afinitor can be hard on the kidneys. I just can't drink that much! I usually drink about 12 glasses of fluids per day, and about 4-6 cups of that is water. I've never been a soda drinker and don't drink much now unless I feel queasy, so I struggle with what to drink.

    Liz

  • eshinall
    eshinall Member Posts: 41
    edited February 2013

    Hi,

    My onc does allow Benadryl but it is hard for me to function on that because of how tired it makes me. I do still work full-time and try not to miss much work so I can save my sick leave, etc. Also, my onc says hydrocortisone cream can make the rash worse in the long-run because of a rebound effect. Anyway, I'd have to cover my whole body. Be sure and buy stock in hydrocortisone. LOL.  Smile

    The only 2 things I can recommend that help some are Aveno body wash and oatmeal bath (mix the oatmeal packet with water to make a paste and coat the rash with it, wait for it to dry and flake it off into the trash, otherwise it clogs the drain really bad). 100% Aloe vera gel helps the inflamation some and I like the Gold Bond Healing Lotion with Aloe. It smells funny (think Aloe plant) but seems to be the best lotion I've found and it isn't too greasy.

    All I can say is this rash sucks and I hope none of you get it all over like I've got. I've even had it on the soles of my feet. YUCK.

    Liz

  • eshinall
    eshinall Member Posts: 41
    edited February 2013

    Hi ForestDweller,

    How long did the rash last for you? I've had it going on 2 months now (since about January 6th/7th). It seems to be getting slightly better, but new spots keep popping up so I don't know what to think. I also have bad acne. Do you have that too? I have bad acne plus the itchy patches that look like eczema.

    Thank you. I'm glad to have this board to read. This rash has really gotten me down.

    Liz

  • eshinall
    eshinall Member Posts: 41
    edited February 2013

    I am a dedicated coffee drinker and I haven't been able to drink coffee very often since starting on the Afinitor. It doesn't taste good. Everything tasted like aluminum foil to me for the first week I was on it and then my mouth broke down with the 2 sores which lasted 3 weeks. I also feel another one coming on.

    Now I've noticed that nothing really tastes right. I keep asking my daughter and fiance if things are bland. They just roll their eyes. My fear is over-seasoning everything. LOL.

    Also, while I was told that a glass of wine now and again is OK, my liver labs have been really really really high so I think it isnt a good idea. Plus both times I've tried I ended up violently vomiting with just 2 drinks, dang it. I love my beer and wine but it isn't worth it to me now. It really doesn't sound good. My advice is if it sounds good, go for it.

    Liz

  • ForestDweller
    ForestDweller Member Posts: 55
    edited February 2013

    Eshinall...i don't have acne and the rash itched for two weeks. The worst areas under my arms are still healing slowly but no longer itch. So sorry that you have it so bad. Maybe a dose reduction would help.

  • lwd
    lwd Member Posts: 234
    edited February 2013

    Loneplume,

    You made me laugh, about the coffee tasting bitter.  When I was on Tamoxifen and Megace last year, one day my coffee tasted awful.  Very bitter.  I was so upset, because early morning and my coffee is the best part of my day.  I told the dr. about it and he acted like he'd never heard of that taste thing being a SE. 

    I thought the same thing you did - maybe I needed to clean my coffee pot.  But, since I hate that job, I didn't do it, just gave up coffee for a couple of weeks.  Then, one day I decided I had to have a cup, and it tasted normal again.  So, I really believe it was the change in meds.  Maybe things will normalize for you, too!  And, I saved myself the job of cleaning the pot!  Still, I really need to do that.  It's been a while..............

    Lane

  • sueco
    sueco Member Posts: 62
    edited February 2013

    Loneplume, just like you I had my 6th pill last night.  So far I have no side effects which surprises me, and no change in my taste buds.  Let us hear if you find out anything about taking a multi vitamin.  I do take one along with cholesteral medicine and Vit. D/calcium as I am on Xgeva.  Funny, but I also wake up every morning around 3 am also.  I get up, go to the bathroom, and drink a glass of water, and rinse my mouth out with Biotene.   Fun, fun.Embarassed

  • sueco
    sueco Member Posts: 62
    edited February 2013

    I just read the following post and copied it to this topic so no one misses it.  I have worried a lot since I started Afinitor almost two weeks ago because of some messages on this site about mortality rates, lung problems, etc.  So far I have no side effects, and I was happy to read Betty's comments.  I do know though that I have to be sure to let my doctor know if I have for instance any breathing problems in the future, etc.

    10 hours ago BettyeE wrote:

    I just got the best news I've had since I started this journey. 6 yrs ago. I have been on Afinitor / Femera since Nov.2011. I just returned from MDA after having blood work and PET SCAN. My tumor markers are down to within 5 points of normal and the 3 lesions in my liver are gone and my bone mets are stable or maybe healing some!!! Bone mets are hard to gage. If they are growing they light up, if they are healing they light up and if they are dying they light up. By comparing scans and seeing some light up, but no new leisons, then they look at tumor markers, mine are steadily going down.
    I just had to share and hopefully encourage all of you wonderful strong women. Never give up and never give in!
    Hang on till a cure is found. Bettye

  • NOLAmom
    NOLAmom Member Posts: 2
    edited February 2013

    Good afternoon.  I am on the A/A treatment.  Have stopped and started due to mouth sores.  The magic mouthwash along with the baking soda/salt/water wash work to keep those at bay.

    I am still working full time and am starting to fatigue before I even get to work.  Does anyone else out there work full time while taking these drugs?

    Just like most of you, I am on Plan D - keep changes drugs as the cancer spreads in my bones.  I fell lucky it has not found any of my organs!!

  • BaseballFan
    BaseballFan Member Posts: 46
    edited February 2013

    I'm working full time. I get a weird heaviness in my eyes late afternoon, but other than that I'm fine. Hope the fatigue gets better.

  • chefmiche
    chefmiche Member Posts: 25
    edited February 2013

    For some reason I got the impression that being on Afinitor makes your immune system compromised, I notice I got a sore throat and was sick for 7 days.  Is this chemo drug different in that way?  I'm curious bc I have tried to avoid sick people and public places, please tell me if I am wrong!

  • ForestDweller
    ForestDweller Member Posts: 55
    edited February 2013

    Chef .....You're doing the right thing by avoiding germs as this medicine does lower your immunity. My white count was 2.6 this morning.

    If your temperature reaches 100.5 you need to seek medical care.



    On another note...my oncologist told me he had to hospitalize a patient because of a bad case of mouthsores. She didn't call him about her situation and didn't stop taking her A/A.

  • sueco
    sueco Member Posts: 62
    edited February 2013

    The info on this site states that Afinitor is less likely to harm normal healthy cells but then why are there so many side effects.  I have a very slight sore throat but do brush my teeth and rinse a lot.  Next week I will have blood work done so will see what this has done to my white count.  I also see my doctor and never asked her how long I would be on this.  I assume for a long time vs. regular chemo?  I still swim and get out a lot but do make sure I have hand sanitizer in my car and try to avoid large crowds.  I just feel less tired if I get away from home among other people. 

  • ForestDweller
    ForestDweller Member Posts: 55
    edited February 2013

    Am I going crazy or have all of loneplume's posts disappeared from this thread? What happened?

  • sueco
    sueco Member Posts: 62
    edited February 2013

    I just remember a post a few days ago when she said she was taking time off from posting because there were a number of things going on with her family.  I truly hope she can join us again soon.

  • ForestDweller
    ForestDweller Member Posts: 55
    edited February 2013

    Taking a break from posting can be very refreshing, but sincere people don't delete their entire conversations in order to take a break. This makes me think she was probably a troll.



    Anyway I hope everyone is doing well. One med of the A/A combo is draining my potassium and doc prescribed a giant pill for that. I have a PET scan in three weeks. I will be shocked if this is working as I'm having some hip pain. Chemo is the only thing that has worked for me so far. We will see. ;)

  • mariol
    mariol Member Posts: 7
    edited March 2013

    I've just joined this discussion board and find the submissions very helpful. I'm about to start on the A/A treatment. What does the acronym NED that I see on some posts mean?

  • ForestDweller
    ForestDweller Member Posts: 55
    edited March 2013

    Hi mariol.....welcome. I envy you getting to live in beautiful Ireland.



    NED stands for no evidence of disease. Sometimes even with stage 4 disease the cancer can regress to the point of not being visible on scans. I was blessed with a few months of NED while taking the chemo Xeloda.

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