Aromatase Therapy Timing Key in Breast Cancer Survival

Options
1246789

Comments

  • golfergrandma
    golfergrandma Member Posts: 176
    edited March 2012

    Hi all -- haven't been around for awhile, but wanted to give input on arimidex and AI's in general.  I was on arimidex for 5 years with no se's, but was diagnosed with second bc while still on it.  My first bc was h2n+ and the second er/pr+.  After my second mx, I am now on aromasin and am tolerating it very well with no se's.  Two years ago, I was osteopenic, but my recent bone density scan came back normal.  Am taking massive doses of D3 (6000 iu/day) and think perhaps it's helped my bones.  Am also taking calcium w/D3.  I tried tamoxifen, but could not tolerate it and my onc didn't want me on arimidex again. 

  • etui
    etui Member Posts: 4
    edited March 2012

    I just reached my ten year mark taking Arimidex.  I've had some joint stiffness but so do my non-cancer survivor friends.  My bone density test after chemo showed some early oesteopenia, but after taking VD and calcium, my 2008 and 2012 bone desity were no worse and actually showed some slight improvement.  I did ten years on Arimidex because my Oncologist felt it would be better for me with 6 lymph nodes involved in original diagnosis.  I'm now at the point where my doctor says it it time for me to consider going off the Arimidex.  I'm frightened and excited.  It is definitely difficult to make decisions without any "data" to go with.

  • pumpkinweed
    pumpkinweed Member Posts: 32
    edited March 2012

    Hi GolferGram,

    Thanks for the update.  That is very helpful to me, as I am deciding now whether to do lupron+femara+zometa after just finishing tamoxifen (I am 45 and still premenopausal).  I found encouragement that your bones are doing well.   Good tip on the D3.  Even though you got a new bc while on AIs, at least you know you did everything you could.  :) Blessings to you!

  • dogsandjogs
    dogsandjogs Member Posts: 1,907
    edited March 2012

    I was 5ft 5inches and am now down to 5ft 2 inches. Scary--I have some compressed vertebrae and my back has a hump on it. I now have an indentation in my stomach because my of this. My internist says nothing can be done about it, but I've heard if your spine keeps contracting you can have breathing problems.  So because of all this, and other concerns, I don't take Aromasin anymore.

    This is all due to osteoporosis by the way probably caused by an undiagnosed parathyroid tumor which has since been removed, but the damage was done.

    Luckily I can still jog and walk, but I cannot put the small of my back against a wall. That's how crooked  I am now.  Do you think a chiropractor would help?

  • hopelives
    hopelives Member Posts: 21
    edited March 2012

    Hi Robinb, I have just completed 5 yrs of tamoxifen (after surgery TAC and radiaiton), now my ONC has put me on 5 yrs of Femera.  After 6 wks on this I am ready to quit. I just hate the side effects and I feel I've been through enough.  Have you heard from anyone else doing this protocol? i'm afraid to stop femera and be on my own but I think I'm headed that way.

  • Wren44
    Wren44 Member Posts: 8,585
    edited March 2012

    Thanks for bringing up calcium causing constipation. I couldn't figure out why I was having that problem and now I know. I'll keep taking it, but it's no longer a mystery thank goodness.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited March 2012

    add some prunes to your daily diet; good both for your bones and colon health.

  • mybee333
    mybee333 Member Posts: 1,189
    edited March 2012

    Prunes helped me when I was taking pain pills. 

  • ruthbru
    ruthbru Member Posts: 57,235
    edited March 2012

    My GP said if everyone ate prunes daily;  there would be few cases of colon cancer!

  • kadoka
    kadoka Member Posts: 3
    edited April 2012

    I am interested if you ever found any advice on whether taking Femara for a long time is beneficial?

    I have been on it for 8 years.  I take Vitamin D3 and by bones have stayed strong according to yearly bone density tests.  I am having some new joint pain and wondering if it could be the prolonged use of Femara? My Onc Dr. is OK with me being on it for that long.  Its my idea.  I figured if it kept me from mets for this long why not stay on it? 

  • ruthbru
    ruthbru Member Posts: 57,235
    edited April 2012

    They are starting to look at people on a case-by-case basis as to whether or not stay on for longer than 5 years. My thought is; if you aren't having other problems, with a stage III diagnosis it is probably very smart to stay on it for as long as they'll let you.

  • dogsandjogs
    dogsandjogs Member Posts: 1,907
    edited April 2012
  • Katiez
    Katiez Member Posts: 5
    edited April 2012

    Has anyone else refused Hormone Therapy? My OncotypeDX is a 10 so after doing the research I have decided that the side effects outweigh the benefits for me. Am I being an idiot as my Oncologist has implied? Apart from my BC diagnosis and I am an extremely fit and healthy person who eats well, loves exercise and doesn't drink or smoke. I had a lumpectomy and then a recision for safer margins and I am partway through 35 Rads and not having any side effects. My chances of reocurrence appear to me to be very low and worth the risk.



  • Katiez
    Katiez Member Posts: 5
    edited April 2012

    Has anyone else refused Hormone Therapy? My OncotypeDX is a 10 so after doing the research I have decided that the side effects outweigh the benefits for me. Am I being an idiot as my Oncologist has implied? Apart from my BC diagnosis and I am an extremely fit and healthy person who eats well, loves exercise and doesn't drink or smoke. I had a lumpectomy and then a recision for safer margins and I am partway through 35 Rads and not having any side effects. My chances of reocurrence appear to me to be very low and worth the risk.



  • Ginger48
    Ginger48 Member Posts: 1,978
    edited April 2012

    Katiez- I think the oncotype score assumes use of hormonal therapy but there are many women who choose not to take them for a variety of reasons. Did the dr tell you what your risk of recurrence would be with and without it? Then you can make an educated decision. Good luck.

  • dogsandjogs
    dogsandjogs Member Posts: 1,907
    edited April 2012

    Yes, I am not taking anything. See my response from March 16.  But it really depends on your age what the odds are. Since I'm 76 I would get very little benefit.

  • Katiez
    Katiez Member Posts: 5
    edited April 2012

    I am 60 but feel 40 inside :) My Onco says l have a 30% reocurrence chance without hormone therapy but l find this impossible to understand/believe with a Stage 1c, Grade 2 IDC 1.5cm

  • dogsandjogs
    dogsandjogs Member Posts: 1,907
    edited April 2012
  • ruthbru
    ruthbru Member Posts: 57,235
    edited April 2012

    I'm 2A and I have a 40% risk reduction by taking them the whole 5 years. Chemo only gave me a 20% risk reduction. It is that big of a deal.

  • golfergrandma
    golfergrandma Member Posts: 176
    edited April 2012

    Has anyone experienced peripheral neuropathy while on aromasin?  I've been taking it for 3 months and am beginning to have pain and numbness in my feet and hands.  I think this is a possible se of aromasin.  Would appreciate any feedback.  Thanks.

  • Ginger48
    Ginger48 Member Posts: 1,978
    edited April 2012

    Golfer grandma- I have that from femara.

  • Char2010
    Char2010 Member Posts: 532
    edited April 2012

    golfergrandma - I have neuropathy from chemo but it feels like it has gotten worse - I have been Arimidex since August 2010

  • dogsandjogs
    dogsandjogs Member Posts: 1,907
    edited April 2012

    Golfergrandma:  Yes, and I am still having it even after stopping Aromasin.  A lot of cramping in calves and toes too and one toe is so painful I'm thinking of having it x-rayed.  My fingers cramp and I have to physically bend the fingers as they won't bend on their own. I am waiting for all these SEs to go away, but the only thing that is better is my mood!

  • ruthbru
    ruthbru Member Posts: 57,235
    edited April 2012

    drink tonic water, eat bananas, and sleep with a bar of soap under the sheets

  • dogsandjogs
    dogsandjogs Member Posts: 1,907
    edited April 2012

    I do eat bananas almost daily. What does the tonic water do?  and the soap bar? 

  • ruthbru
    ruthbru Member Posts: 57,235
    edited April 2012

    Tonic water has quinine, which helps stop leg cramps. The soap under the sheets in a remedy I have read about for years in Dr. Gott's column in the newspaper. It sounds crazy to me, but people swear by it.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    golfergrandma

    Acupuncture.  Mine is completely gone, no numb fingers, no more numb toes, knees still creak, but that's age - and they are SO MUCH BETTER.  ACUPUNCTURE really does help reduce the inflamation, and I can feel, wiggle, WITHOUT numbness or pain, all my toes.  JOY, JOY, JOY!

    Good luck.

  • kira1234
    kira1234 Member Posts: 3,091
    edited April 2012

    I swear by the tonic water. I was having lots of cramps, but thanks to ruthbru's suggestion last year I am mostly cramp free.

  • golfergrandma
    golfergrandma Member Posts: 176
    edited April 2012

    Thanks to all of you for  your feedback!  I will try the tonic water, bananas and perhaps the acupuncture if the pain persists and/or gets worse.  It's nice to know that i'm not the only one with these issues!  Will continue taking aromasin because it's important for preventing a recurrence. 

  • ruthbru
    ruthbru Member Posts: 57,235
    edited April 2012
    Maybe I can get a kick back from the tonic water association Wink

Categories