Coming to a crossroads

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sugarplum
sugarplum Member Posts: 318
edited December 2015 in Stage III Breast Cancer

It seems that after 8 years of Arimidex my poor little osteopenic spine is edging way too close to osterporosis, in spite of 6 annual Reclast infusions to combat bone loss. I am faced with two choices: switch from Arimidex to Tamoxifen (easier on the bones), and/or switch to semi-annual Prolia bone-building injections (which work differently than Reclast). My concerns are: will Tamoxifen protect me from recurrence as well as Arimidex has? How different is its side-effect profile for a post-menopausal woman like me? Will I face increased risk of infections from the Prolia (a known side effect)? That could certainly wreak havoc with my brand-new hip joint or the lymphedema in my right arm.   

I have an appointment with my endocrinologist on Feb 6th but would appreciate any feedback in the meantime - thanks guys!

Julie

Diag 4/28/06, Stage IIIC, 10/20 positive nodes, ER/PR+, HER2-, grade 3, multifocal w/dermal involvement  

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  • KerryMac
    KerryMac Member Posts: 3,529
    edited January 2015

    Hey there! I switched from Arimidex to Tamoxifen last year, after 5 years on Arimidex. Mostly because of the same issue as you - thining bones. I did do 3 years of Zometa, and I do a lot of weight bearing exercise, neither seemed to stop the osteopenia.

    It was a hard switch for me. It worries me that Tamox may not be as effective as Arimidex, especially given the recent research. But my Onc was not comfortable with me continuing. And I think that breaking a hip would not be in my best interests either! Also Tamoxifen itself has bone building properties. He did say that I could always switch back at a later date, if my bones improved, or further research indicated a strong survival advantage after 5 years. And Tamoxifen is still a really good drug. So for now, that is what I am taking.

    Good luck in your decision, I wish there were not so many grey areas with this cancer stuff!



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  • caaclark
    caaclark Member Posts: 936
    edited January 2015

    I have no actual experience in switching but I think I will eventually need to consider what I will do.  I tried Fosamax and Boniva and had horrible side effects which now prevent me from taking an oral bone building drug.  I have slight osteoporosis and my med onc has not yet suggested infusions but I know we may need to discuss it soon.  My endocrinologist wants to put me on Prolia right away but since I am just barely over the line regarding osteoporosis I have a little time to decide.   I live in fear of jaw necrosis so I am happy to wait as long as I can. 

    Looking forward to seeing the responses on your original question.

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  • lkc
    lkc Member Posts: 1,203
    edited January 2015

    Hi Julie,

    Yes, this is a hard one. Since I am er/pr neg I am not a candidate for Tamoxifen or AIs.

    I was also initially fearful of Zometa/Reclast S/Es.

    But I've been receiving these infusions annually for about 5 yrs now, with no problems and will continue.

    I wish you well with your decision.


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  • Ninja6812
    Ninja6812 Member Posts: 31
    edited January 2015

    Hi ladies!

    I have been taking Arimidex for 10 months now. I'm curious, is it typical to take for over 5 years? I have had many side effects from this drug, most of which have subsided, but I do have a lot of pain in joints, hips, knees, feet, and back. Some days are better than others and I manage with pain medication. I've just learned to live with it. I switched to Tomoxifen and my hands went numb and I had a lot of stiffness. Need my hands to work so switched back to Arimidex. Anyone have luck with any other medications? Also, I took a hard fall and sprained my ankle in August. Recently I've had pain where I sprained and the area is tender to touch (a bone) as well as ribs where I had radiation. Anyone experience this? Sometimes I let my head wander and wonder if the cancer has spread to my bones, is that crazy? Then I just tell myself that bone pain is just part of taking the Arimidex. Your post about your back Sugarplum makes me wonder what I'll feel like in a few years. Did you have any issues before you started taking? Just happy to be here and that you are all here too :)

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  • sugarplum
    sugarplum Member Posts: 318
    edited January 2015

    Welcome, Ninja - from one Pacific Northwesterner to another! Yes, I had osteopenia years before my diagnosis (only knew it because of the DEXA scans, however- it isn't painful). When I started Arimidex in December 2006 I was experiencing heavy-duty joint pain - every time I got up from sitting, I felt like a little old lady. It's eased up a bit over the years but I'm still very stiff - of course it could just be the aging process at work! If I do switch to Tamoxifen it'll be interesting to see if I gain back some flexibility. Will keep you guys posted...

    Julie

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  • diana50
    diana50 Member Posts: 2,134
    edited January 2015

    Julie

    You want to protect yourself from cAncer. I have a friend who is 13 years out clean from stage 3. She was on tamoxifen for five years first then switched from that to letroxole. She is now 69. Still clean. My doc would have put me on tamoxifen when I got mets but because of my history of blood clots decided no. The tamoxifen is a great drug. Protect yourself from Mets and I think that would help. Hang in my friend. Hugs.

    Diana

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  • Kathleen26
    Kathleen26 Member Posts: 210
    edited January 2015

    After a year and a half on AI's, I had to switch to Tamoxifen due to liver issues. Within a month, all of the joint pain I had been experiencing went away. After around 3 years, the Tamoxifen still seems to be working to prevent recurrence and the bone loss I had experienced was reversed. Given your osteopenia issues, you may want to give Tamoxifen a try.

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  • sugarplum
    sugarplum Member Posts: 318
    edited December 2015

    Well guys, here's an update: unbelievably, my DEXA scan showed my spine is just a little better than it was last year, so I apparently have not yet descended into osteoporosis. (My theory is that since I've been walking so much more after my hip replacement last October, my spine is benefitting from the increased exercise). As a result, my onc is OK with me continuing on Arimidex for another year which would take me to an even 10, then switching to Tamoxifen to start rebuilding my bones as I enter my 60's.

    That sounded like a good plan to me! I will continue to avoid crunches & curls in my workout so as not to stress my spine any more than necessary.

    Hope this regimen continues to work. My best to all of you - Julie

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  • marijen
    marijen Member Posts: 3,731
    edited December 2015

    This is all very interesting, my endocrinologist told me the maximum is three annual infusions ofreclast.

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