Afimito/ aromasin

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Janice54
Janice54 Member Posts: 83

My OC isn't 100% sure the flasodex / Ibrance is still working. I have inconclusive new spots on my spine. Had CT scan, pet scan and MRI. Still in question. He wants to put me on A/A. I am scared to death of afinitor. So far for 12 years I have had no side effects and a great quality of life. I have this cancer but never felt sick. Now if I take this afinitor will that be over. The side effects are horrible. Should I stay on flasodex for another two months until my next scan. Should I just take aromasin or bite the bullet and take the Afinitor with it. I am, at my Drs. suggestion, going for a second opinion at Duke U. I need to hear some good stories of A/A . people who's quality of life stayed the same.

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  • Grannax2
    Grannax2 Member Posts: 2,551
    edited January 2019

    janice54. I don't have any to tell you. I've

    Been. On AA for 3weeks and 3 days. I don't have mouth sores, that's good. The weight loss and patin have been horrible.

  • Janice54
    Janice54 Member Posts: 83
    edited January 2019

    weight lose after just three weeks? What is patin?

  • masonsmawmaw
    masonsmawmaw Member Posts: 134
    edited January 2019

    Janice- I think Grannax meant "pain". For Grannax and myself, the weight loss began immediately. I am down 25 pounds since the end of October and I'm not sure exactly how much Grannax has lost but it is significant. I have had the mouth sores and was taken off Affinitor for 9 days. During that time they completely went away. I restarted Affinitor this past Sunday night so we'll see how it goes. From my perspective, the sores and loss of appetite are the worst!

    Onc gave me an appetite stimulate (derived from marijuana) and it made me high as a kite. Going to request a lower dose when I see her next week.

    I'm sure there have to be some good stories out there about Affinitor, but I can't seem to find them. Also, I started using Biotene toothpaste when my sores and tongue got raw....there was no other toothpaste that I could use. I will keep you updated on how things progress. And...by the way, I also go to Duke Cancer Center!

    I'm wishing you the very best as you make these decisions...

    MM (Angie)

  • Grannax2
    Grannax2 Member Posts: 2,551
    edited January 2019

    Janice I've lost ten in 3 weeks, but most weight loss has been in the last seven days. The plan is to keep taking it. I'm pretty discouraged. I've had a lot of pain too in hips, lower back legs. Feeling weak, etc.

  • Grannax2
    Grannax2 Member Posts: 2,551
    edited January 2019

    My eating is better, found out I do like glucerna rich chocolate shake, Milk tastes good and lemon drop candy helps with the bad taste in my mouth. Still having pain especially bad at night. Still needing lots of sleep.

  • Janice54
    Janice54 Member Posts: 83
    edited January 2019

    I will start it next week. I am very nervous. I feel healthy and strong but feel like this drug will make me feel weak and sick. We are planning a trip to Disney with my two grandchildren we are raising, 5 & 7. Will I be well enough to go? Only time will tell, I guess. New treatment is always so scary.

  • pajim
    pajim Member Posts: 2,785
    edited January 2019

    Janice, if you don't want to take A/A you certainly don't have to. You could try Xeloda instead.

    But. Not everyone has every side-effect. I thought the first three months of A/A were easy. Then it got harder. I also thought Xeloda was relatively easy but other women have a really hard time with it.

    You could make a trial of the drug and if you don't like it, move on to something else. You don't need to 'suffer'.

  • Grannax2
    Grannax2 Member Posts: 2,551
    edited January 2019

    My weight is stable now for one whole week. Yesterday I was able to really enjoy food for the first time in a month. Today I feel crappy. I've been coughing and blowing lots of yucky stuff. When do I need to worry about these symptoms being related to SE of the Lung see caused by AA. Looking for answers

  • jobur
    jobur Member Posts: 726
    edited January 2019

    Hi Janice, I am still in early days of A/A. Starting 3rd month of Aromasin and 2nd of Afinitor. I have had minor se's, but nothing horrible. I am pretty active and find I do get very tired at times, but have been able to bounce back after a rest. I have not lost a pound and have only had a couple of minor mouth sores. No D or changes in taste for me so far. I won't have scans until March, so don't know if it's working, but tumor markers seem to have stabilized since starting this combo.

    I'm very sorry for those who are having or had a tough time on this tx. I agree, tx changes are difficult and I have apparently been lucky so far. Maybe you will be too. Fingers crossed.

  • Grannax2
    Grannax2 Member Posts: 2,551
    edited January 2019

    jobur what's your secret? My one month has been nothing like yours. I have had worse SE with AA than any of the six IV chemotherapy I've had. Today I go to doc to see if the cough nose blowing symptoms have anything to do with the Lung issue SE of AA. Did I just get unlucky or is it my age? I'm 71.

  • Grannax2
    Grannax2 Member Posts: 2,551
    edited February 2019

    There were no lung issues, but I did find out that AA has caused my blood sugar to shoot up. So my days of AA are over. I see my doc tomorrow to tell her I'm intolerant of all these SE. I wonder if she'll put me on Xeloda.

  • Grannax2
    Grannax2 Member Posts: 2,551
    edited February 2019

    Yes I will be going on Xeloda February 18 after I get back from NYC on February 18. I've been off AA four days, my BS is going down but I still don't feel great.

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