This is going to be long and I will summarize my 15 years with mbc after I describe my appt this week at U of Mi CCC! My husband accompanied me for the nearly 3 hour drive each way for my appt for a second opinion with Dan Hayes, one of the wise elder bc oncologists. It hit me half way there that it had not occured to me that I might not like him! lol But as soon as he walked into the exam room I just knew that I was in good hands. He and my long time and recently retired onc have known each other for most of their careers and are friends as well as professional colleagues and he just beamed when I mentioned her! After examining me and reading alot of my history/scans, etc, he told us that if he had been treating me, he would have done exactly the same things my onc has. He suggested Tamoxifen as a good next choice when I get to that point. He also told me that my lung condition would make it unlikely that I could get into any trials. When I asked about end of life planning (strictly the medical part, I've taken care of the legal/financial part ages ago), he said that is likely to be a long way off! He was definitely on my wave length as far as communication and treatment go. Obviously it is impossible to predict time frames and he was very tactful in indicating that. Anyway, I felt encouraged and have felt more positive than I have been each morning when I wake up. Oh, he also said that he wished he had medical students with him that day so they could see that living a long time with mbc is in fact possible!
I really encourage any one who hasn't seen a bc specialist onc at one of the Comprehensive Cancer Centers to strongly consider doing that.
My cancer history in brief: diagnosed 3/2004 and bone mets during initial staging. Had lumpectomy and biopsy of bone met. E + P + her2neu -, invasive lobular bc. On Femara (letrozole) and Zometa with good results. Got nearly 5 years from Femara. When it failed, I had a second lumpectomy and switched to Faslodex. I am allergic to Zometa and so received just a half dose of it with benedryl and hydrocortisone prep plus 2 hour infusion time and extra IV fluids. As soon as Xgeva was approved by FDA, I switched to it from the Zometa. When I started on Faslodex, the usual dose was just half what it is now, and when the larger dose became FDA approved, I was given the larger dose and quickly became NED for several months but under two years. I don't remember exactly how long that lasted. But I got over 9 years from Faslodex. In 2016, Ibrance was added to the Faslodex but it damaged my lungs and gave me Interstitial Lung Disease which my pulmonologist described as like gunk between the air sacs. It has been mostly stable but I do get out of breath easily and really have a hard time outside when it is humid.
My biggest health issues on a day to day basis are fatigue, getting out of breath, a scarred sciatic nerve not related to cancer which has left me with impaired feeling in my legs and feet (neuropathy!) and a spotty rash that my onc, pcp and dermatologist have not been able to figure out or get rid of .
IF anybody has had good success getting rid of a persist ant spotty rash that sometimes itches and sometimes doesn't, I'd love to hear what you did! I've had Rx anti-histamines, tried every OTC anti-histamine I can find, two different Rx creams, and just about every OTC lotion I can find for itch, diabetic skin, eczema, dry skin, sensitive skin, plus straight Vit E oil.
I am fortunate to have done so well for so long! I am tired and my brain is not what it used to be, but I still enjoy most of the things I have always enjoyed and I have great family and friends (and medical insurance!)