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Afinitor/Aromasin

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Comments

  • Cisco711
    Cisco711 Member Posts: 7
    edited November 2014

    Hello All!

    Well I did get a mini holiday for a week after the mouth sores got to the point where I couldn't eat. Started back three days ago and had one whopper headache and the nosebleeds are back, but this time I'm trying to take the meds with a lot more water: also somewhere someone suggested a saltwater preventive rinse so I'm giving that a try too. Just want to be able to enjoy turkey day!

    I'm so thankful for all of you on this site; I pray that by some scientific miracle we all will be able to give thanks for many years to come.

    Happy Thanksgiving!

    Cisco

  • Romansma
    Romansma Member Posts: 650
    edited December 2014

    Hope you are all still doing well on this combo. Is anyone having issues with high copays, etc.? If so, please private message me.

  • thisisme
    thisisme Member Posts: 45
    edited December 2014

    Hi just checking in with all my A/A sisters. I am on month 9 and seem to be OK, except for a pelvic fracture and new spine met noticed at last scan. it didnt stop me from going to Paris and London for 2 weeks (without kids!!) before having 5 rad zaps. Still have some pelvic pain, but not as bad, except I have this cough and everytime I cough, it shoots down to my pelvis. I remember when I was a nurse and the doc and I went to check on the 19year old man/boy with a broken pelvis. When we pulled back curtain, he was having sex with girlfriend. Doc just said, "that isn't very good for your pelvis", closed the curtain and walked away. I am not having any med side effects, except maybe a bit of insomnia and slight decrease in appetite. But that didnt stop me from having cookies for breakfast AND lunch. oh dear.....

    How is everyone else doing? Hopefully the mouthsores are staying away and you will enjoy an nice holiday feast.

  • Toronto_012
    Toronto_012 Member Posts: 30
    edited December 2014

    Hi All:

    I hope everyone is doing ok. I just u wanted to let you know that I just got my latest scans back - 9 months on 5 mg and all mets are stable or smaller. Not as much shrinkage as the previous scan but still good.

    Hoping for good results for us all,

    Best

    toronto

  • JCSindia
    JCSindia Member Posts: 13
    edited January 2015

    Hello everyone, 

    Good news was the last scan in chest showed reduction in the pleural effusion in lungs for Mom and liver were stable. Unfortunately she has caught fever and has some breathlessness so the doctor has said to stop affinitor for few days and take out reports. Hope they start it again as it was working well

  • Woodylb
    Woodylb Member Posts: 935
    edited January 2015

    Congrats Jay on your mom's report, i am happy she is stabilizing on A/A . However, i am sorry for her fever and breathing issue , i think you should listen to your doctor as affinitr is know to cause pneumonia and breathing distress issues. I hope she is able to resume treatment soon and continues to respond. Warm regards.

  • Diane13
    Diane13 Member Posts: 17
    edited March 2015

    Hi all,

    I don't know how many of you saw this special on HBO on the show, VICE. But I am feeling quite Hopeful since seeing it! This may be the breakthrough we have all been waiting, living and praying for! This is not just a new TX, this will be the CURE for all cancers! Looks like there are some clinical trials one can get in (if at a last straw) at the Mayo clinic, but also in the UK and Canada and I'm sure many other countries. The good news, they are saying the FDA should approve this in the U.S. by 2016, next year! VICE is still airing this episode or you can watch it on-line. Just wanted to offer this potential HOPE!
    http://www.broadwayworld.com/article/HBO-to-Debut-VICE-SPECIAL-REPORT-KILLING-CANCER-Today-20150226
    Love and Healing to all!~Diane

  • HLB
    HLB Member Posts: 740
    edited March 2015

    Hi everyone, I havent been here for a long time, mostly because there was a certain point where something about the mobile site changed and I was no longer able to post from my phone, which is where most of my online time is spent because i do not have a computer except at work, which is where I have to post from. Also, I was obsessing to the point where cancer was my only hobby so I stopped looking online and thinking about cancer for awhile.

    I am supposed to start A/A and I am afraid of afinitor to the point of having meltdowns trying to decide if I really should take this drug or not. I started with mets almost 3 years ago after 8 years of NED. dx'd stage 2 in 2004. I have been on letrozole and XGEVA doing fine with no real SE's except being tired. It is time to change because my tm has gone up 3 timex in a row and I had a PET that showed 3 of the spinal mets are active. luckily there was nothing new; just the same mets I have always had, 3 or 4 spinal and a manubrium and a pelvis. the rest are quiescent.

    I have a radonc appt tomorrow to see if they will consider blasting these 3 active ones although I do realize it is not generally done. I guess my question to you all with experience is this: I have only done this one treatment so far, do I really need to go this harsh for my 2nd treatment? I know I won't know until I try it but I really don't like the idea of suppressing immunity, mouth sores, possible lung and kidney issues, diabetes etc when this cancer has never given me any symptoms at all. I have to work FT and I am really afraid of my QOL taking a giant nosedive. I am ok with the aromasin and I will continue on XGEVA. I would really like to try metformin but my onc is strictly standard of care. period. I have a holistic dr appt next thursday because I really think the metformin could not hurt, esp with the diabetes SE of afinitor. I sent my script in and now I just have to wait til it arrives. I am pretty determined to find someone to give me metformin no matter what I decide as far as the other meds.

    I feel kind of bad like I am ungrateful. I know someday I will probably beg to take this drug. I just can't help thinking do I need to go this way YET. thanks to you all for any opinions you may have on this. I wish you all the best days with lots of regression and minimal side effects.

    Heidi

  • Cafelovr
    Cafelovr Member Posts: 75
    edited March 2015

    Hi ladies. My mom also has Stage IV breast cancer in bones, lungs, and several lymph nodes. She has progressed while on Letrozole, so they have switched her to AA. Did any of you have wacky liver and kidney function results when starting the medicines? Her AST/ALT and kidney tests are all over the place. I don't know if it's more progression or a side effect of the new meds. The mouth sores are terrible and she has a lot of aches and pains. Just trying to be supportive whenever I can!

    Thanks, Linda

  • HLB
    HLB Member Posts: 740
    edited March 2015

    Cafelovr, it looks like we are not getting a response from anyone about the afinitor. I went to a holistic dr yesterday and decided i am not going to take it. I will take the aromasin and there are some other things I am going to try. I'm just too nervous about the afinitor. a friend of mine who passed away recently was on A/A and ended up in the hospital on dialysis and went home with nephrostomy tubes. So it can certainly effect the kidneys. I hope your mother and you are feeling good. have a nice weeknd.

  • Woodylb
    Woodylb Member Posts: 935
    edited March 2015

    HLB and cofelovr,

    I was offered affinitor and turned it down, because if what i read about its side effects. However i visited this thread often and read all the commments and found useful info. Coffelover, A/A does change liver enzymes and give other side effects also but they drop down afterward and with others it does not. I know most of the ladies here suffered from sores , swelling pimples on the head and face and sone other side effects. The longest who was on A/A is Romansma , she was on it for one year. Sorry could not be of more help. Coffelover i hope it works for your mom and that THE SEs subside . HLB i hope your choise is the right one and it is beneficial for you

  • 208sandy
    208sandy Member Posts: 582
    edited March 2015

    I was on AA for three months - it did indeed work it shrunk some of the tumour growth BUT aside from all the other se's I had, the giant pimples on my scalp and face, the mouth sores, the very expensive mouthwash, the complete fatigue and exhaustion what drove me away from the treatment was the shortness of breath! Romansma should get a medal for sticking this treatment out and she had way more se's than many of us.

  • HLB
    HLB Member Posts: 740
    edited March 2015

    Thank you for the responses! It's a little scary to not take it, but I have to work FT and if it's that hard I won't get a lot of time out of the treatment anyway. Hopefully this other stuff will work.

  • highhopes
    highhopes Member Posts: 51
    edited April 2015

    Hello all,

    I'm on aromasin but declined the afinitor as the side effects really scared me.  My onc wasn't too thrilled but after a discussion, I decided to forgo the afinitor and got a second opinion.  The second onc stated that I could take the aromasin alone and at a later date add the afinitor at a low dose.  That gave me some relief.  Is aromasin working? I don't know.  I have an appointment next week and  will find out.  I feel good and can't really complained.  The only complaint I do have is having to take aromasin with a meal.  Other than that, I take every day as it comes and count my blessings. 

  • ORrn_54
    ORrn_54 Member Posts: 3
    edited April 2015

    I am glad to hear all of you are having some of the same issues I am. I am on both the Afinitor and exemestane. I have experienced some of the mouth sores, not a lot. Also very tired and shortness of breath is getting worse at least to me. I work full time also, makes it difficult. My chest ct showed no problems with my lungs so they are checking out my heart. I have also developed a real change in my taste. Everything tastes funny and forget eating sweet stuff, lol, no flavor at all. Watch your triglycerides, they can go up. Also I have always had low blood pressure and it has gone up some. I have a tumor in my liver which wasn't responding to the other therapies I have been on, it seems to have stabilized with this treatment though at least it is doing what they want. This is supposed to be easier to deal with than the chemo my dr was saying he would have to put me on.

  • Toronto_012
    Toronto_012 Member Posts: 30
    edited April 2015

    Hi Everyone,

    I have been on the AA combo for 14 months with no progression and shrinkage. I have to go off for about five days every six weeks when the fatigue becomes overwhelming. I work full time as a school principal and suffer more from my bad back then AA symptoms. Don't be scared. I had to take cymbalta to stop nerve pain and tingling the first six months.

    Hang in there

  • Woodylb
    Woodylb Member Posts: 935
    edited April 2015


    Toronto,

    Did cymbalta work for you, i was just newly given cymbalta for my peripheral neuropathy from taxol and i am still hesitant to take it.

  • Toronto_012
    Toronto_012 Member Posts: 30
    edited April 2015

    Hi, yes cymbalta changed my life. It reduced the burning and tingling and buzzing and helped with anxiety as well! I don't think I could have stayed on this combo without it. It was really bad at the beginning but now I feel pretty good- not perfect but I could live with this!

    I will be 17 months at my next scan in June and hope to keep going for a long time. Hang in there if it makes you stable or better it is worth it. Smile

  • ibcmets
    ibcmets Member Posts: 312
    edited April 2015

    I was on AA for 15 months. bad mouth sores & body sores as well as high blood pressure. It did not prevent progression with me. I had radiation 3X's for different recurrences of mets on this. I went off Affinitor & on Aromasin only with Xgeva. May be switching to faslodex & tamoxafin. I got 4 years out of Femera.

    Terri

  • Woodylb
    Woodylb Member Posts: 935
    edited April 2015



    Toronto,

    Thank you for your prompt response, i am on taxol/herceptin/perjeta since november 11 and i had my pet in december which showed complete response no mets left min the liver or bones and no cancer activity. But since i am on weekly taxol it kind of effected my toes and some fingers on my hands , they are all swollen i cannot wear shoes for long my doctor suggested cymbalta rather than lyrica. The problem is i was for 5 years after my menopause on anto depressents and i did not like how it made me feel and it took me 4 months to go off them. This is why i am afraid to take cymbalta. But the doctor said take it u til it make comfortable than you can stop it. He started me only on 30mg once a day. The other made me quiet but very apathic , i did not cry or laugh or feel anythingfor a long time strAnge not to feel all these things. Any input

  • Toronto_012
    Toronto_012 Member Posts: 30
    edited April 2015

    Hi again, I had never taken any anti any things before cymbalta. I sometimes feel not quite as quick/ witty as I used to be but they reduction in stress/ anxiety/ gi issues/ nerve pain greatly makes up for it. I never knew before how your mind can control your body and how one can be completely unaware. I have not contemplated stopping as of yet... I think everyone with stage 4 needs some emotional help. Personally I can't believe it was never offered to me until I wouldn't leave the hospital without it!!!!


  • Woodylb
    Woodylb Member Posts: 935
    edited April 2015



    Heheheheheh Toronto very nice way of puttingit, i took two days so far only 30mg the neuropathy on my legs have been greatly reduced which is very good for me since i cannot wear any shoes and all the small pains in my body are gone. The thing is i have been walking around during the day like a zombie lollllll and in the clouds. I will see how it goes . Thank you for all your help. :))

  • Toronto_012
    Toronto_012 Member Posts: 30
    edited April 2015

    No problem. Just a note but it took a little while to kick in and work. About 3 weeks I would say to really notice a big difference.

    Best of luck,

    ps. Sometimes I feel that my really happy and really sad are eliminated now... kind of strange but better than being so tense all the time.

    Let me know how it goes. Thinking of you :)

  • Woodylb
    Woodylb Member Posts: 935
    edited April 2015


    Toronto,

    I agrre with you a does make a lot of difference to me in matter of neuropathy , really even two days made my legs feel normal again. But how it made me feel these two days bothered me. It reminded of the days of cipralex plus the foggy feeling. As for the happy or not happy feeling , i felt it for 5years, for five years i didn't cry once when i should have, or laughed really. It took me 5 years to notice hehehehe. For the time being i feel i can hang on one more month to finish my chemo and see what happens. But a lot of people with cancer do need medication and i think it does lot of good. As long as i can handle it for now , i am going without it. I will see what happens later. I a, glad it is helping you. Hugs.

  • highhopes
    highhopes Member Posts: 51
    edited April 2015

    The results of my scans showed that everything is status quo since Oct 2014,  No changes can be found.  I was previously on Faslodex which didn't appear to work as my TM rose over the time, yet the scans were good.  Switch to Aromasin in mid-Jan and my TM are still rising even though all tests and scans no progression.  Has anyone else experienced this? 

  • HLB
    HLB Member Posts: 740
    edited April 2015

    Yes, I had normal range ca27-29 for 2 years on letrozole, then they started climbing. CT and Bone scans showed everything the same as before, but TM was still going up, so I had a PET, which still all of the same lesions, but three of them were active with one of them very active. Onc thinks that is what's causing it it go up. I finally started a new treatment April 1 after TM going up since August. Last one was 150 and my normal is 30-32. I started aromasin but I don't know how it's working yet. I think that was too long to allow them to rise, but onc says we don't treat the marker. I get that but in my case they have always meant something is happening. pretty dumb if you ask me. Anyway, maybe that is what is happening with you, no progression but maybe some of the lesions are waking up. I was relieved that they were all the same and not moved on to other organs. I am afraid of taking afinitor. I am going to hope the aromasin is working.

  • Cafelovr
    Cafelovr Member Posts: 75
    edited April 2015


    They wound up taking her off for two weeks. She took 10 mg, and they wanted to get it out of her system and put her on 5 mg. The breathing issues are scary. It's up and down. My mom can't walk from the living room to the kitchen without gasping for breath. Her QOL has just plummeted, but they tell her she looks good. Ugh!

  • highhopes
    highhopes Member Posts: 51
    edited April 2015

    HLB

    Thanks for sharing your experience.  It seems as we are on similar paths.  While on Letrozole, I was in the normal range, then it began creeping.  There was a hot spot on my rib but that is no longer hot.  Guess, I will just try to focus on the positive that is good.  Sending you good thoughts that we all receive a miracle and be cured or be in remission for many many years


     

  • HLB
    HLB Member Posts: 740
    edited April 2015

    Thanks, Highhopes, I wish so bad for that for all of us too. I recently saw a holistic dr and he said what we need to do is to be able to treat this as a chronic disease that will be kept under control and not bother me too much until I am 90. hahaha!! I wonder if he really believes that is possible. I am going to believe that he does to make myself happy. I just want go stay off of these CRAP drugs!

    Cafelovr that is so frustrating what your mom is going through! How much is too much if we take these meds and we cannot even breathe! Why can't they come out with something that is not so hard and let us live a halfway normal life.  

  • brandall
    brandall Member Posts: 97
    edited April 2015

    I started Afinitor (and aromasin) 3 weeks ago and have a wicked mouth sore. I've been swishing away with salt/baking soda rinse, any other ideas? The afinitor also shot my blood pressure up one week in, so now I'm on blood pressure meds. Those meds made my potassium levels sink, so now I'm on potassium too. It's a carousel of side effects! All, in all I can't complain too much…except about this mouth sore - ouch!

    If you had mouth sores, I'd love to know what you did to help get rid of them. Homeopathic cures, prescription meds…I'm open to everything!

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