Starting Afinitor soon.

[Topood]

I’m about to begin Faslodex and Afinitor, which will be my 4th round of treatments in two years. My cancer is progressing, but my quality of life has been good so far, which makes me happy....my husband is working in Germany, and I was able to visit him for 3 months last summer and a two weeks last month....so I’m really happy about that. I guess my biggest question right now is about Afinitor....the side effects sound scarey! I’ll start taking it this week. Thanks so much for your time and attention.

[MacroMom]

I'm glad to hear that your quality of life has been good; whatever scans say, that's what matters. I haven't been on Afinitor yet but it's one of my next options so I recently joined a Facebook group called "Afinitor (Everolimus) for Metastatic Breast Cancer". It has a few hundred members with first-hand experience and lots of advice on handling side effects. If you are on FB I recommend it. Use the "search this group" box at the left for specific questions, ie "mouth sores", etc. Wishing you continued good life!

[Topood in reply to MacroMom]

Thanks so much! I just signed up for it! And thanks for your comforting words...

[MyMiracle13]

I would be most interested to know more about Afinitor too as it may be added to my Exemestane sooner rather than later.

[Topood in reply to MyMiracle13]

I will post after I take it for a few days!

[MyMiracle13 in reply to Topood]

Thanks. It’s really great that we are able to share experiences.

[MyMiracle13 in reply to MyMiracle13]

I was on Faslodex for almost 2 years. I don’t remember any side effects except soreness on injection site for a couple of days only. Wish you well on your new treatment plan!

[Selmac in reply to MyMiracle13]

Anybody have any questions at all, feel free to ask me. I was on Afinitor and Aromasin for 2 and 1/2 years. It was a piece of cake compared to other stuff I was on. I wish it still worked for me. I had lots of energy considering. We went on a cruise and flew across country to visit relatives. I had a good appetite but ate very healthy. Never nauseas. I'm vegan but I'd give in occasionally to a cheese pizza. I actually ate a large pizza all by myself once. I wear a size 4 petite shorts and small to medium tops. I did have some side effects but were tolerable. My name is Terri if you have any questions. I was terrified to start it.

[MyMiracle13 in reply to Selmac]

Hi Terri. I’m very interested in hearing your experiences about Afinitor and Aromasin. I am currently on Aromasin only but I am not sure if Aromasin alone can control my lung Mets which progressed on Ibrance/Fulvestrant. My oncologist is hesitant to add Afinitor because I will be having WBRT next week and he doesn’t want me to have bad side effects from both WBRT and Afinitor. But I really would like to start as soon as possible soon after my WBRT. What side effects did you have which you considered tolerable? I believe mucositis is what my oncologist is worried about most. Thank you so much for offering to share your experiences. I am so glad you had a good quality of life on it.

[MyMiracle13 in reply to Selmac]

Hello again Terri. May I know what “other stuff” you were on? What were your previous lines of treatment prior to Afinitor and Aromasin?

[Selmac in reply to MyMiracle13]

Hi, when I became stage 4 in 2017 I was put on Ibrance and Faslodex. I was only on it 6 months and had progression. My Oncologist did a gene study and said I needed to be on Afinitor and Aromasin. It has just quit working for me. My tolerable side effects were sores on my head and acme around my mouth. Also cold like symptoms. Runny nose and eyes. Sometimes some stuffiness. The Dr put me on an allergy pill twice a day which helped. My fingernails chipped a lot so I kept them very short. That helped. The Oncology nurse talked to me a long time before I went on it. I used the mouthwash with steroids in it 3 times a day whether needed or not. It seemed to keep them at bay. Drink at least 60 oz of water a day for your kidneys. Other than that I have no complaints except dry hair. That's it.

[MyMiracle13 in reply to Selmac]

Hello again Terri. I’m happy to hear you had manageable side effects on Afinitor. How did you treat the sores on your head and acne round your mouth? Also, what sort of gene study did your oncologist do? Did they biopsy a lesion or do a blood biopsy? Thanks for all the information.

[Selmac in reply to MyMiracle13]

Hi, the sores around my mouth were treated with a cream the dr gave me. The sores on my head weren't treated. They were itchy and lasted a few days, then go away. More always popped up though. The Oncologist did a gene study through my blood somehow. Not very knowledgeable in that area. My Dr did a lot of research though. He was very good. Up until a couple months ago, cancer was in my bone. Just had some recent progression and a cancerous lymph node in my lung.

[MyMiracle13 in reply to Selmac]

Thanks. You are a great help. I went to see my oncologist today and I was able to get a prescription for Afinitor 5 mg to start after my WBRT. Hope that like you, I don’t experience many side effects and most importantly that Afinitor and Aromasin work for me!

[Selmac in reply to MyMiracle13]

I hope they work for you also and you have minimum side effects. I know our bodies are all different. I hope you end up we ith few side effects like I did. Actually, I forgot to tell you this. The first year and a half I was on it, I was on the highest dose of both. Also I had absolutely no side effects the first 6 months. I know it's weird. My dr even said so.

[Topood in reply to Selmac]

Thank you SO MUCH! I was just talking to my wonderful cancer nurse about it, and the list of side effects was so long that it seemed like a joke! This message is really encouraging....you’re right. We are all different. I’m going to tell my sister, who was also alarmed....

[MyMiracle13 in reply to Selmac]

Thank you again. Reading the long list of side effects is very off putting but your experience on the combination is very reassuring!

[Hidden]

So glad you've been feeling well, and I think you have an enviable lifestyle, with a foot in each of two countries! I'm afraid I don't know anything about affinitor (down the line for me) but the Faslo is good stuff! I'm having good success with it...almost two years as second line...so I wish you the same!

Best, Lynn

[Hidden]

So good to hear your quality of life is good and your got to see your husband!

I wish you great success on Affinitor.

Anja

[Julie2233]

I had this combination for 3 months in the autumn. Unfortunately it didn’t suit me, but it works well for many people.

My husband worked in Germany during the 90’s and I was lucky to have lots of time over there. We had a flat in Berlin for 6 years which included the unification of the country - that was one heck of a party! Then I taught English for a language school in southern Germany until I came home to have my daughter, and my husband was located on the Austrian German border. Lots of happy memories 😊

[SeattleMom]

Hello!

Your story is so similar to mine! I was diagnosed with BC in 2000, was treated, and remained "cancer free" until my MBC diagnosis in November 2017. I just found out yesterday that my cancer has begun to progress after 34 months on a combination of Letrozole and Ibrance. My oncologist has suggested that I will likely begin Faslodex injections as my next treatment protocol.

Would you mind sharing what treatments you have had and what your experience was with each? I live in Seattle and am being treated at the Seattle Cancer Care Alliance; I see that you had your first BC treatment in Seattle in 1995.

God bless you as you begin your treatment with Afinitor. I wish I had some words of advice but I've not been treated with that therapy just yet.

All the best, Linda

[Topood in reply to SeattleMom]

Hi! I lived in Seattle for the better part of 20 years and still miss it, and still have many friends there....I try to get back at least once a year...I was treated by a wonderful doctor at the UW, then at the SCCA.

.My first treatment was Ibrance/Letrozole...that worked for about 10 months, then docetaxol with herceptin and perjeta, that was 4 1/2 months....then tamoxifen and the h/j combo, and now I’ll be starting the Faslodex and Afinitor...I was tired on the Ibrance, but OK enough to travel a lot. The docetaxol was hard on my blood count, and gave me terrible mouth sores until I started taking Valtrex....but it worked! The tamoxifen has only had limited success, decreasing my liver Mets, defending my bones, but my lymph nodes are really swollen....so that’s why my doctors have switched me to the most recent treatment, which I hope I’ll start next week.

[Marieleb]

Hi

Afinitor+ Everolimus was my 2nd line of treatment in summer 19 . I did struggle on it a bit ( mainly mouth sore) but only had it for 3 cycles. My hospital gave me some mouthwash to prevent it , I ignore their advice! Shame on me! As soon as I started using it mouth sores eased up. So my advice would be to use it from the beginning ;-).

Faslodex was my 3rd line of treatment and came with hardly any side effects. Some people found injections painful but the nurse told me the trick is to do it slowly ( I think it is quite thick) and I can confirm whatever she did worked as it was never painful! Again sadly it did not work for me and I stopped after 3 cycles but as you can see already many people have already shared it worked well for them so all the best.

I was able to work full time and be an active mum of 3 ( incl 2 little ones) and fitted a 3 weeks beach holiday in France while on those drugs so hopefully your quality of life will not be affected.

[mariootsi]

I wish you well with your new treatment!

[Topood]

Now I’ve been on Afinitor for a week, and am pain free, but have had lots of diarrhea (I’m going to get some adult diapers) and have also been really tired (though to be honest I have gone river tubing twice....but the second time was yesterday and totally wiped me out). I do feel as if I may be breathing a little tiny bit better....I know there are lower doses, though, and I’m already thinking longingly about them! The Faslodex was easy, though I did have weird dreams and kind of disjointedly spooky memories about 24 hours after the injections....My poodle wants to know why I’m so much less fun!

[Mustangs2022]

I was on Ibrance and Faslodex for a year. The PET scan didn't show the results my oncologist wanted, so he switched me to Afiinitor and still the Faslodex. I haven't had any problems with the Faslodex except for tender hips/butt for a few days. I'm on Afinitor 10mg, and I'm doing pretty well. I do use the dexamethasone mouthwash. My biggest issue is that food has a metallic taste. I keep hoping it will get better. I also have been having leg cramps/spasms but not sure what's causing them. I didn't have them like this before starting Afinitor. I've been on it for about 5 weeks. I'll have a PET scan after 3 months to see if it's working. Good luck to you.

[Topood in reply to Mustangs2022]

I ended up stopping Afinitor....I got terrible face rashes and mouth sores (even with the dexomethosone) and my breathing got worse...so now I’m on Xeloda, and doing better! Thanks for your reply, and good luck!

[Adele_Julia]

Hello Ladies ! Well, I just got of a tele-medicine call with my oncologist. I was diagnosed with MBC in Nov of 2020. Lumpectomy, lymph nodes removed in 2019 when I was initially stage 2. Well, it came back and spread right back to my right "boob" and lymph nodes in the chest and pleural lining. I was on iBrance and Faslodex since November and my PetScan in May showed remarkable results but with the Cytology report on the fluid in the pleural, my onc wants to put me on Afinitor and Faslodex. What? Sigh. In 6 months the tumors reduced but now we're changing it up. Sorry, I'm a bit freaked out. What does Afinitor do that iBrance doesn't? xoxo Julia