Afinitor/Aromasin
Comments
-
I have been taking Afinitor/Aromasin for 16 months and have had no hair loss.
Overall, I feel better and more energetic than I have in three years. That may be in part because I have been on vacation since June, but these meds are really working for me. I will be returning to work in late August; hopefully, my energy stays high. Today I am going into my classroom to begin putting up my bulletin boards.
My best wishes go out to each of you. I consider my results with this drug combination to be miraculous, and I wish the same for you.
0 -
I bought size 2 caps off of amazon.com work great for 5 mg tablets
0 -
I have been on a/a and I am so happy my doctor put me on it. Mild side effects but it is worth it no pain. Yay I finally have a life and I could bend.
0 -
Excited to hear how well you are both doing and no hair loss, that's wonderful. So happy to finish chemo and get my life back also!
0 -
I am encouraged to see so many of you who seem to be doing well on A/A. I will start this week if I can get my insurance company to okay it. I had a call from the pharmacy today, they say my co-pay will be 2,500.00 for 28 day supply. Wow!! So now I will check into the Curascript pharmacy or see what my other options are. My doctor's office says they may be able to help me figure out what to do.
rosie06ct, size 2 caps off of Amazon? What is this?
0 -
Wow Linda. $2,500 for a 28 day supply. That is ridiculous. Hope you get the insurance issues straightened out. It is one of the better drugs I've taken. No hair loss. Initially I had some gastro issues but that resolved itself also. I really thought that since Afinitor was approved for ER+ women, the insurance wouldn't be such an issue. Best of luck to you in getting this.
0 -
Novartis also has a drug assistance program. You might check into that with your doctor's assistance.
0 -
The pharmacy my Onc recommemded, has a program to help with copays. Ask your pharmacy too!
0 -
linda2 the gel caps i purchased to put the Afinator cap into so it never touches my mouth ...
0 -
well after one week on A/A my blood sugar was up to 358 today! I am already a type 2 diabetic and now thi streatment is raising hell... i have to monitor it for 2 days and check in with my GP geeze
0 -
I don't coat the pills I fill my mouth full of water and I swallow the pill. Thank god it works nothing major going on. My mouth feels a bit weird but duable.
0 -
I have been on letrozole and afinitor for 6 months. Hair loss significant, but am not bald like with chemo!!!
Mouth sores come and go, nothing too bad. Appetite and sense of taste come and go, my weight is stable. Rash comes and goes. Scalp is very itchy, am thinking of developing some sort of cortisol rinse for my hair as the usual dandruff shampoos just aren't helping. Labs have stabilized at mild anemia and mild low white count and mild low platelets, but have not dropped over the past 2 months. Lesions have stabilized, not smaller, but not growing. All in all, stable for now, minimal SEs. Fatigue and depression and anxiety are the worst things I am dealing with overall, but those also come and go.
So onward, will check again in a month!
Best wishes to all of you beginning this regiment, hope your experience is as mild as mine has been.0 -
I've been on A+A for 15 months, and have had no hair loss from these drugs. I take a B complex vitamin which I believe helps to curb hair loss due to the biotin it contains. Plus it's great for calming the nervous system.
Breast cancer patients naturally tend to blame all hair loss on meds, but there's one other common cause: PTSD. In the seven years since my initial diagnosis, I've had two episodes of partial hair loss, both of which were caused by PTSD flares. All three of my doctors told me that PTSD is extremely common among women diagnosed with breast cancer. I now know that if I experience trauma or extreme fright, I can expect to find more hair in my hair brush a couple of months later-- so I do everything I can to contain my fight-or-flight response when bad news comes my way! I've learned that a little Ativan, a lot of prayer, and several hours of extra sleep over the course of a few days can change things pretty fast.
0 -
lulubee, is there a specific brand of vitamin B complex you take? I have read about biotin also for hair. Your comments about PTSD flares and hair loss a month later sort of resonates with me also ... I REALLY need to get my amygdala under better control!!!! The anxiety over LE has really set me back into that PTSD thing again, so that could be contributing to the hair loss as well.
0 -
Thank you all for responding to my post regarding the cost of the Afinitor. I checked with my insurance company and it turns out they have a specialty pharmacy that they contract with. I got my doctor's office to fax a RX to them, and the co-pay is $80.00. Quite a savings!! Whew, one more crises averted. This diagnosis is hard enough to deal with without having to stress about finances.
rosie06ct, So are you using the capsules to keep the Afinitor from touching your mouth to protect you from the mouth sores? I hope your blood sugar has stabilized, how frustrating for you.
I am also taking vitamin B complex, hopefully it will prevent hair loss; my hair is already thin and fine and seems to come out all of the time. After chemo when my hair was coming back in I used a shampoo that I got at Whole Foods called Jason. It had biotin in it and no sulphates, I just may go back to using that.
pearlady & Linda-n3, Thanks for the good wishes, hope my experience is as mild as yours.
Love having this site to get great suggestions and support from all of you.
0 -
Well, it looks like my ride wih A/A is coming to an end. Got the first scan results back and after 4 years of bone mets, it's spread to the liver. I find out tomorrow if it's spread to the brain, but with the severe headaches I've been having, I can't help but think there are issues there.
In the meantime (after I see my onc later today), I have 2 unopened boxes of Afinitor. I don't know if I can donate them to the dr. office or not. I'm sure there are all sorts of issues/regulations regarding sharing of meds, but dang it, these boxes cost thousands of dollars, and I don't want to trash them! Any ideas?
0 -
Raro, I'm so sorry to hear about your progression. I hope the headaches don't mean brain mets.
I've seen people on the boards offer meds they no longer need so you could do that. Have someone who needs them PM their address.
Best of luck with your new treatment. I hope it works well and is gentle on you.
Leah
0 -
Since my breast cancer dx in May 2011 (with subsequent lumpectomy & brachytherapy rad) had been taking Arimidex which worked for 15 months. Then back and rib pain started and mets to spine confirmed Oct 2012. Was put on Xeloda for 6 months (which worked to lower my markers), and then Onc changed me to Tamoxifen cause 'it would be less toxic'. Tamoxifen for 3 months useless. My Onc giving me choice of IV Taxol weekly or Aromasin/Afinitor oral combo. So now what do I choose? The toxic Taxol IV or the A/A oral combo?? Anyone ever had both and can give me their first-hand opinion? Thanks!
0 -
Linda thanks for the tip on the Jason shampoo. I've seen it in health food stores and Whole Foods but never purchased it, but am definitely going to try.
I've had no hair loss from the Afinitor, but I am going back on the diabetes drug Metformin, which last time caused thinning of my hair in front. I've read such great things about Metformin and breast cancer that I asked my onc to let me try it again. The hair thinning was the least of it. The gastro issues were terrible, but the Metformin did bring my markers way down. Don't know if anyone else has tried Metformin. I have started now, but on the brand name Glucophage which is said to be easier on the side effects but cost more. I'm hoping the hair thing is not an issue again, but will definitely try the Jason shampoo and a B complex.
0 -
Stella I'm so glad that you're doing well on the A/A. It really is not difficult. When I first started I had some minor issues, but they subsided. One of the best things is no hair loss.
0 -
I had an extra box of Afinitor, unopened. I was at the office for a Xgeva shot. I showed the box to the receptionist. She said she would check and return the box to me if they could not use it. So happy when it was not returned.
0 -
Here's a good side effect for you...since I have been on Afinitor my skin has become soft and smooth and younger looking. I'm really pleased about this side effect. Hope I'm not the only one!
0 -
raro, I am so sorry about your progression. Don't lose hope-- your next line of treatment may very well give you the blessed reprieve that you need! Blessing and hugs to you.
Linda-n3, I have to take a specific type of B-complex because I have MTHFR, a genetic mutation which causes high homocysteine levels among a host of other things. It prevents the body from methylating certain B vitamins, so I have to take the correct forms of those vitamins for people with MTHFR. However, if I were looking for a formula for a "normal" body, I would definitely check into New Chapter Organics. I am very impressed with the formulas I use by this company. They have a website, and they have a B-complex that is based in food.
Linda2, during my PTSD flares, I used Avalon Organics Biotin B-Complex Thickening Shampoo & Conditioner. Bought them at Whole Foods. I found them helpful.
Suecolo2, I have taken unused, unopened drugs to my oncologist or the oncology pharmacy, and they have gladly taken them back.
Have a blessed and joyful weekend, ladies! Life is good as long as you're still alive!
lulubee
0 -
well after 2 weeks on A/A my blood sugar is through the roof ! 300-400 so now am trying to get that lowered meaning more drugs and guess work ! was on metformin about 10 months ago and had such dirreaha after 2 weeks I had to stop
0 -
Hey gals, I'm not up to speed on all the posts here, but have finally started my Affinitor (adding it to aromasin, which I've been taking for 6 weeks or so). Anyway, my nurse at the med onc clinic just went to an in-service training about Affinitor and they are instructing patients to rinse with saline 6 times a day, for about 30 seconds. She said think of the saline rinse as part of the treatment to avoid mouth sores. Easy enough! She said the water doesn't have to be too salty, just enough to taste a little salt.
0 -
Nancy, I think this does help, especially as your body is first getting used to this drug. I was very obsessive/compulsive compliant with this and have had very few mouth sores, and none of them disabling. I sort of cut back on it, guess feeling a little cocky or something, still doing OK, but at the least sign I use sodium bicarbonate instead of saline every hour or so. Either it works or I am just blessed to not have major mouth problems at this time.
0 -
Hi Ladies,
I asked my oncologist about my several unused, unopened boxes if Affinitor. (I'm on to Abraxane.) He said to give them to the pharmacist, or the oncology practice. He did say however, that sadly the returned drugs can not be legally redirected to another patient, they are destroyed. That really pisses me off!
So, I did a bit of googling and found that there are a few states which do sponsor programs which receive unused drugs and then redirect them to needy patients. Sadly, mine is not one if them. Anyway, before you turn over those unused meds to anyone, ask what will happen to them, and find out if your state has a program for their redistribution.
Hate to rain on anyone's parade, but them's the facts.
DG0 -
Has anyone had a jump in their blood sugar from this combo ??
0 -
Just wanted to share some good news: Today, I got the results of my first scan since starting this combo 3 months ago and I'm happy to report that some of my tumours have shrunk and the rest are stable! No progression! No new nasties! YAY!!! I'm soooooooo relieved!!!
Hope everyone's having a good day today and that whatever tx you're on or about to start, it's doing the business for you.0 -
so happy yout tumors ae shrinking ! nice to hear good news
0
