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15 hours ago · Zometa (Zoledronic acid), should I take if not on AIs? in Breast Cancer

Hi. I was diagnosed at age 47 Stage 3 IDC PR/ER+ HER2- in 2018. Bilateral mastectomy, no reconstruction, dense dose AC/T chemo, radiation, Anastrozole, and decided to due 4 rounds of Zometa to be as aggressive as possible in preventing a recurrence as I have a young child and that 1-2% reduction in risk seemed worth it to me. Well after 3 treatments I had to have a tooth out and I turned out to be in the unfortunate group of people who get Osteonecrosis (ONJ) as a side effect . My oncologist had told me there was a 1% risk of this. The ONJ specialist however says he has seen a substantial increase in this side effect. My case is mild to date and hopefully will never require reconstruction if I am super careful and able to avoid any additional jaw trauma for the next 12 years (which is how long the drug stays in your system). If I never get a recurrence in my bones it will still have been worth it! These decisions are all so hard and I probably made it harder for you but I think if I were Stage 1 or 2 I would think really hard about using these drugs and talk to an oral surgeon who has expertise dealing with ONJ as well as your oncologist to get a clearer picture of the cost/benefit of this course of treatment. I have horrible bone pain with Anastrozole but have started taking 30 mg of Duloxetine daily and it has helped me tolerate the AI for 9 months at a time then when the bone pain returns I take a 2-4 week holiday from the AI but stay on Duloxetine and then when pain subsides I start up again. It’s my understanding that the AIs have a far greater impact on reducing recurrence so if at all possible, I’d try really hard to use those. Best of luck and good health to you!
Tess

Jun 14, 2019 · Zometa infusions in Breast Cancer

I have ER/PR positive BC stage 3. I am getting hormone suppression therapy and take Anastrozole. My oncologist had me start on Zometa every 6 months even though my bone density is excellent as a recent study has shown it can help prevent bone mets. I have had one infusion so far and had extreme fever chills shakes about 18 hours after. My oncologist does not think it was a reaction to the Zometa infusion given the timing but from what I’ve read online it seems likely it was so I’m not sure what to think about that. I plan to continue the twice yearly infusions either way as I feel that a few hours of discomfort is worth the extra protection.

Apr 1, 2019 · To do or not to do: Bilateral mastectomy and implants in Breast Cancer

Hi. I had a bilateral mastectomy last year and decided to go flat at that time. I was told that reconstruction (with implants) could always be done at a later date if I ever regret my decision. It was nice to have the pressure off of thinking it was now or never for reconstruction. Perhaps talk with your surgeon and meet with a plastic surgeon to discuss all options and possible timelines so that you can make the decision that works best for your recovery and healing process.

Mar 29, 2019 · Carbon 60 in Breast Cancer

Thanks. I have sent info to my cancer care coordinator and, of course, would wait for their go-ahead. Trying to gather additional info for decision making.

Mar 27, 2019 · Carbon 60 in Breast Cancer

Anyone here researched or taking C60? Here’s some info I was sent about it:
Benefits of Carbon 60 according to scientific research:
C60 is the world’s most efficient known free radical scavenger and shows potentially therapeutic properties in treating arthritic pain, cancer, human immunodeficiency virus (HIV), and neurodegenerative disorders like Dementia, Parkinson’s and Alzheimer’s.

Mar 7, 2019 · Timing of HRT, anastrozole - taking day or night? in Breast Cancer

Hi! So I’ve been on Anastrozole since Oct ‘18. I took it for a few months and the pain become too much combined with not sleeping and night sweats/hot flashes. My team put me on a drug holiday for 3 weeks and then I restarted. Pain has been manageable since restarting but I started to struggle with mood swings. During all that time, I was taking meds in the morning. At my last visit we decided to switch to having me take meds at night plus add melatonin. It’s been 1.5 weeks. I had one night of pretty significant hip pain after switching but my sleep seems better and mood has improved so it seems the night time administration will work better for me. The melatonin, as explained to me, does not lessen hot flashes but significantly helps some women sleep through them and I seem to be one of the lucky ones in this regard. I am also experimenting with adding sub-lingual CBD at night to help with some of the nighttime anxiety I have been experiencing since my diagnosis.

Feb 15, 2019 · Aromatase Inhihibitors: Did you decide to go on them or not? in Breast Cancer

I’m sorry others are experiencing bowel issues but I’m glad I’m not crazy! My medical providers act like this is not a thing others experience when I talk to them about it. They have offered a fiber supplement to try to reduce the number of times I’m going. My stool is not loose at all but just a lot more than I am used to going. Plus I often don’t know I’m going to poop when I sit down to pee (which I have to do more frequently as well) and I’m not a public pooper by nature so it bothers me in public restrooms. Thanks for sharing!!!!

Feb 15, 2019 · Aromatase Inhihibitors: Did you decide to go on them or not? in Breast Cancer

Yes! Being Stage 3 I am committed to staying on AIs even though after just 6 months I look and feel decades older as well. Plus I will take these kinds of ‘shitty’ days over another go round with cancer any day! Lol. Gotta find humor where we can!