Brendatrue

I've been bemoaning the lack of easy solutions myself. I tried Arimidex twice, then stopped because I just could not tolerate my poor quality of life--including intense fatigue and bone/joint pain. I'm talking about 10 hours of sleep not being enough to help me feel rested and joint pain so tough that I would hold onto walls to try to reduce the stress. (And I really don't want to hear from others how a poor quality of life is better than no life at all.... )

Anyway, I had a lovely drug holiday, then noticed a nagging low back pain (after most of my joint and bone pain had ceased, although I still have the regular old osteoarthritis pain in my knees and neck--no big deal)). My onc suggested heat, NSAIDS, stretching, etc, and recommended starting Femara asap. My internist agreed to order an xray,which has revealed severe deterioration/osteoarthritis in my lumbar spine area in just the past year. I do not want to take another AI for fear of what will happen to my bone health. I am thinking of trying Tamoxifen and stopping the Evista I have taken for a year, or just taking the Evista alone.  (My ca--the 2nd--was Stage 1, no node involvement, ER/PR+, Oncotype DX score 21.)

I get so blooming tired of trying to learn, analyze, evaluate, decide, reassess, re-analyze, re-decide, etc., especially with a 51yo brain that is working a lot less effectively and efficiently than I think it should! Although I realize there are no easy solutions, I just hope that I will find some peace somewhere or somehow in this process.

Wishing you all the best in finding answers that work "right" for you--

I can't miss the chance to report this comment. I had advised my onc that I had learned about the Oncotype DX on the internet (after he had not mentioned it) and that I was doing all I could to educate myself regarding breast ca/care. At the end of the visit, he turned to my husband and said, "You need to keep your wife off the internet!" Before I could even open my mouth, my husband said that I had the right, and the wisdom needed, to utilize reliable sources, internet or otherwise, in order to participate fully in my own care. And I let the onc know that he need not assume that my husband told me what to do and I meekly followed NOR that I would ever refrain from any opportunity to become a more empowered client. Needless to say, he did not remain my onc for long!

ktcloud-

I hope you will be kind to yourself as you revisit what you might have done differently. When diagnosed and then going through treatment, it is so challenging to learn all that we need to know in order to be good advocates for ourselves. And we certainly tend to want to trust our care providers to help us make decisions as we navigate this new cancerworld.

I appreciate your willingness to remind others, especially those newly diagnosed, of the importance of exploring all options and learning how to trust your gut about what you know is right for you. I also learned some things the 'hard way.'

Be good to yourself.

Brenda

Hey, Jesse--

I was diagnosed with this--eventually--in 1996 after I had my first breast cancer treated with CMF/chemo. I say "eventually" because it took me a while to get my onc's attention and help him understand I wasn't talking about minor achiness. I felt like I was 40 years older than my 39 years! I tried OTC NSAIDS until I found one that worked for me. I also received massage therapy, which helped and which I felt safe trying since I believed I was cancer free. And around this time I started t'ai chi. I did recover but it took a number of months and some real effort on my part. Good luck with your onc, with finding what works for you in order to feel better, and with healing from treatment!

Brenda

Bliz--

I can certainly relate to your email. I have had breast ca twice, each time diagnosed after "normal" mammograms and after I pushed for more assessment, etc, because I knew that something dreadful was happening in my body. I have just decided to terminate the Arimidex (love that phrase) after about a year on it (with about a 3 month lapse--long story). I also have grown incredibly tired of my onc saying that he is surprised about my report of troublesome side effects with this AI. I don't see how I could be his only woman client saying "This medication is HURTING me!" (I do give specifics.)

I am giving my body/mind/spirit a 3-4 week drug holiday before trying Femara. I will do what I did when I started the Arimidex the second time: take half a dose every other day, then half dose every day, then full dose every day. (I think I remember correctly how I started it but I can't rely on my memory as often now.) My onc told me at one point that not enough research had been done to determine the right dosage for varying women and that a 'one dose fits all approach' was the best recommendation at this time; however, he also said that he would prefer me take half dose on a permanent basis than nothing, should I decide to quit. I have always been hypersensitive to meds--even needed only relatively low dosages for good results with many meds. I thought I had been tolerating Arimidex side effects better until the last couple of weeks, then they worsened and I decided I would regret not ever trying something different to see if I had a better outcome.

So, we shall see. I will be checking to hear how your experience with Femara unfolds. I wish you the best.

Brenda

Donna--

You may want to suggest to your mother a group called "Compassionate Friends," which offers online and community based support to people who have lost their children (young or adult) to death in various ways. She may start with the online resource and move to a local support group. There are lots of resources listed on their website. Perhaps you will want to consider a grief support group and/or individual counseling as well, in order to help you deal with this loss,  and over time you might be able to inspire your mother to follow your footsteps if she remains reluctant to access support. Remaining hopeful for peace and comfort--

Brenda

I should have been clearer when I talked about my concerns related to the MRI. I have a metal implant above my left knee and I had strange sensations and subsequent (temporary) problems with that knee after an MRI (not of the leg, either). I was told that some people have such problems in similar situations; who knows--maybe it was a coincidence. Anyway, I am having difficult knee and other joint pain with the Arimidex, and I am apprehensive about a recurrent 'strange' experience that might make matters worse. (I can assure you that I am not a hypochondriac; however, I do have a complex medical history and a propensity for having odd things happen in response to meds, tests, surgeries, etc.)

Having said all that, I should add that I am leaning more toward getting the MRI and trying to find the energy to gear up for yet another battle with my insurance company. I appreciate your comments and your support!

Brenda

I bet they wish they had the excuse of chemo!

Brenda

Susie--

Thanks for the info. I have been diagnosed recently with low Vit D, and I have tried to increase my sun exposure. Now I will have extra motivation to do so. I also take Cod Liver Oil capsules 3 x day, per my MD's advice, in addition to the D that's in my daily vit/min and my calcium supplement. I was told that you also can receive injections but my MD recommended the Cod Liver Oil approach. I am hopeful....

Brenda

Bliz,

I was diagnosed with breast ca for the second time in 2006 (first time, 1995, same breast). My tumor size was 1.1 cm; ca was ER/PR+, with no lymph node involvement. I had the Oncotype testing, which suggested that I would respond more positively to hormonal therapy. I was advised to take Arimidex. I had a tough experience for the first several months. I was taken off the Arimidex for a short period after I had an amazingly severe reaction to Zometa, which I received to build bone health (I have osteopenia from chemo in 1995 and chemopause). I was started on Evista for bone health, and once I adjusted to that, I started back on the Arimidex.

At that point, I decided to take Arimidex every other day for a week at half dose, then half dose every day for about a month, then full dose every day. I talked with my onc about this plan and he was very supportive, mentioning that not enough research about the most/least effective dose had been done and that he would support my decision not only to try the above schedule but also to take half dose for a long term period if I could not tolerate the full dose. With this transition to Arimidex, I have experienced less difficulty. I still face challenges of fatigue and bone/joint pain, but these are not as overwhelming as they were the first time around. I hope this info is useful to you.

I wish you well in making the right decision for you.

Brenda