HER2 Support Group Forums - View Single Post - Half of breast cancer patients treated with antihormonals are noncompliant ie, do not

CoolBreeze · 07-02-2010, 07:45 PM

I've only been on tamoxifen 2 1/2 months, and I was pre-menopausal at diagnosis (51). I find it hard to believe the symptoms I am having are normal menopausal symptoms. I know many women who have been through menopause and they don't have continual deep bone aches, joint pain, and cramps. Many get hot flashes but mine are continual. Sleep disorders are common, of course, and I haven't slept for more than 2 hours since I started the drug. It only took two weeks on the drug before I got a vaginal infection. I always looked younger than my age, but now my skin is crepe-papering up.

I have been compliant with every medication I've taken in my life and do take my calcium and vitamin D faithfully - but I can totally see why people would not continue with this one, dangers or no. My quality of life has diminished greatly - frankly, I'd rather do chemo again than take this drug for five years. I have a 13 year old and lots of activities left to do with him.

I'm one of those people who sail through everything - chemo, never had a side effect of any med - and now this happened. I was very surprised - I hadn't even looked into the SEs of tamoxifen until a month down the road.

So many things I can't do anymore, and I could before. Stand for long periods, sit for long periods (back aches) - my hips hurt. I can't even wear heels. I love heels, I have 100 pair! Unless I know I won't be walking at all, they have to stay in my closet.

So, I completely understand non-compliance.

My onc has prescribed me percocet but for how long? I'm certain he's not going to give it to me for five years.

I'm just hoping something better comes along. I will continue to take it - for now. I can't promise anybody I can do this for five years.

07-02-2010, 07:45 PM	#24
CoolBreeze Senior Member Join Date: Dec 2009 Posts: 562	Re: Half of breast cancer patients treated with antihormonals are noncompliant ie, do I've only been on tamoxifen 2 1/2 months, and I was pre-menopausal at diagnosis (51). I find it hard to believe the symptoms I am having are normal menopausal symptoms. I know many women who have been through menopause and they don't have continual deep bone aches, joint pain, and cramps. Many get hot flashes but mine are continual. Sleep disorders are common, of course, and I haven't slept for more than 2 hours since I started the drug. It only took two weeks on the drug before I got a vaginal infection. I always looked younger than my age, but now my skin is crepe-papering up. I have been compliant with every medication I've taken in my life and do take my calcium and vitamin D faithfully - but I can totally see why people would not continue with this one, dangers or no. My quality of life has diminished greatly - frankly, I'd rather do chemo again than take this drug for five years. I have a 13 year old and lots of activities left to do with him. I'm one of those people who sail through everything - chemo, never had a side effect of any med - and now this happened. I was very surprised - I hadn't even looked into the SEs of tamoxifen until a month down the road. So many things I can't do anymore, and I could before. Stand for long periods, sit for long periods (back aches) - my hips hurt. I can't even wear heels. I love heels, I have 100 pair! Unless I know I won't be walking at all, they have to stay in my closet. So, I completely understand non-compliance. My onc has prescribed me percocet but for how long? I'm certain he's not going to give it to me for five years. I'm just hoping something better comes along. I will continue to take it - for now. I can't promise anybody I can do this for five years. __________________ http://butdoctorihatepink.com 08/17/09 Dx'd. Multifocal/multicentric IDC, largest 3.4 cm, associated ADH, LCIS, DCIS HER2+ ER+/PR- Grade 3, Node Negative 10/20/2009: Right mastectomy, reconstruction with TE 12/02/2009: Six rounds TCH, switched to Taxol halfway through due to neuropathy 03/31/2010: Finished chemo 05/01/2010: Began tamoxifen, the worst drug ever 11/18/2010: Reconstruction completed 12/02/2010: Finished herceptin 05/21/2011: Liver Mets. Quit Tamoxifen 06/22/2011: Navelbine/Zometa/Herceptin 10/03/2011: Liver Resection, left lobe. Microwave ablation, right lobe - going for cure! 11/26/2011: C-Diff Superbug Infection, "worst case doctor had seen in 20 years" 03/28/2012: Progression in ablated section of the liver - no more cure. Started Abraxane, continue herceptin/zometa 10/10/2012: Progression continues, started Halaven, along with herceptin and zometa. 01/15/2013: Progression continues, started Gemzar and Perjeta, an unusual combo, continuing with herceptin and zometa 03/13/2013: Quit Gemzar, body just won't handle it. Staying on herceptin, zometa and perjeta. 04/03/2013: CT shows 50% regression in tumor, so am starting back on Gemzar with dose reduction, staying with perjeta/herceptin/zometa. Can't argue with success! 05/09/2013: Discussing SBRT with Radiology due to inability of bone marrow to recover from chemo. 06/07/2013: Fiducial placement for SBRT 07/03/2013: Chemo discontinued, on Perjeta, Herceptin and Zometa alone 07/25/2013: SBRT (gamma knife) begins 08/01/2013: SBRT completed 08/15/2013: STABLE! continuing with Perjeta, Herceptin, Zometa 06/18/2014: *** NED!!!!*** continuing with Perjeta, Herceptin, Zometa 01/29/2014: Still NED. continuing with Perjeta, Herceptin. Zometa lowered to every 3 months instead of monthly. 11/08/2015: Progression throughout abdomen and lungs. Started TDM-1, aka Kadcyla. Other meds discontinued. Remission was nice while it lasted. 5/27/18: Stable. Kadcyla put me right back in the barn. I have two teeny spots on my lungs that are metabolically inactive, and liver is clean. I’m beating this MFer. I was 51 when this started and had two kids, 22 and 12. Now I’m 60. My oldest got married and trying to start s family. My youngesg graduates from Caltech this June. My stepdaughter gave me grandkids. Life is fantastic.