I was on Everolimus 10mg for a month and just finished my first month of 7.5mg dosage. Due to the side affect of painful face rashes I would like to stop taking Everolimus.
Meanwhile, I am on Faslodex since February and Xgeva since December 2019. I would like to ask my Onc if I can stop taking Everolimus and just stay on Faslo and Xgeva until my next scans in 4 months.
My question: Is anyone just on Faslodex without another drug combo? If you are (or were) how did you do on it?
Thank you
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Jonesburger
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I was on Afinitor and everolimus from January but it didn’t work...my oncologist wanted me to have chemo but I refused so I’m on Faslodex only now with denosemab (xgeva) have only had one blood test since then but markers have dropped which pleased me...appointment and bloods on Wednesday so I hope the drop continues
One of the nurses at the centre where I go said there’s a patient there who has been on faslodex only for over four years...we’re all different though but it can work well for some ladies
Apart from the discomfort of the injections I’ve noticed some increase in joint pain so have had to change pain meds to something stronger but otherwise just have poor appetite and keep losing weight but better than gaining imo
I understand your wanting to discontinue Everolimus (Afinitor). For me, it was one of the more difficult treatments for side effects (my biggest problem was mouth sores). However, I was wondering if you and your oncologist discussed dropping the dose further to 5mg. I know everyone's response is different, but I thought I would share my experience.
I started at 2.5mg for a few days, then went to 5mg daily for a month, then went to 7.5mg. I had a bad reaction (rash and extremely elevated liver enzymes). My oncologist took me off Afinitor for about one month (while I continued with Exemestane), then put me back on 5mg, which lasted one year. After a year when I had slight progression, she increased my dose gradually from 5mg to 7.5mg. This worked for another year.
I remember my oncologist saying that very few women could tolerate 10mg. I know that several ladies on the board have tolerated a higher dose, but it's something you might want to consider. I am treated at MSK in NY/NJ. At the time, I sought a second opinion from Weill Cornell in NY - the oncologist said their protocol was to start patients at 2.5mg.
I wish you well with whatever decision you make.
Barbara
Hi,
I'm not on the same treatment as you, but I would recommend you discuss your concerns with your oncologist before you decide to stop taking everolimus. Is it possible to drop to a lower dose? Can your oncologist give you something to deal with the harsh side effects? I would not stop taking it without medical advice. If you do stop taking it, will it be replaced by something else? You don't want to deal with possible progression, so it's a good idea to talk things over with your oncologist and see what they come up with.
Hi ladies, thank you so much for your advice and recommendations. I can't tell you enough how helpful your comments and experience was to me.
barbarac76 - Barbara, thank you for sharing that were able to stay stable for a year on 5mg. This is helpful and I will bring this up w/ my onc. I'm at the Dubin Breast Center of Mt. Sinai in NYC and my Onc said their protocol is to start at 10mg and then lower the dose if needed.
Barbteeth - Barb, thanks for sharing your experience so far with Faslodex as well as the other patient who was on it for 4 years. This is the type of experience I needed to hear and will share this with my onc.
I had a scan done over two weeks ago to get a baseline in order compare it in 4 months after being on Afinitor. Those scan results showed no new progression; some slight uptick (onc said it was minimal) as well some decreases in uptick. All in all, my onc said she was 'happy' with the results. She said the one month I was on Afinitor 10mg wasn't enough to make a difference. This made me think that if I did ok on mostly Faslodex and Xgeva, then why not just stay on this combo and retake Afinitor if there's progression?
Hidden - Sophie, thanks for your note. Yes, I would definitely consult with my Onc before I stop taking Afinitor. I sent her an email through the patient portal last night to tell her about the face rash flareups (included photos) as well as proposing me holding on Afinitor for now. I'm waiting for her reply. With regards to lowering the dosage from 7.5, I don't think my onc will approve it. She has already told me she doesn't see the point of going to 5mg or lower. She believes 5mg and lower would not have enough efficacy to make it worth the side affects. If I have no choice to stay on Afinitor, I will seek a second opinion on getting a lower dosage.
One other thing, after 3 years since my lumpectomy and being super careful with my arm and being able to avoid lymphedema, my arm and hand started to swell up a week ago. A physical therapist who specializes in lymphedema confirmed its lymphedema. I can't help but assume the Afinitor drug had something to do with this since swelling is one of their side affects.
For me, i was able to handle IV Chemo, IBrance, Arimidex, all without missing too much work and I continued to feel somewhat normal. But with Afinitor, I feel the side affects of painful face rash, swelling of my dominant arm, are the worse experiences I've gone through with treatments and my quality of life is starting to diminish.
When I started Afinitor I was put on 10 mg but felt so tired and miserable after 1month so my oncologist immediately reduced the dose to 7.5 mg which was much more tolerable
It’s interesting that you mentioned lymphodema...I’ve recently developed this in my left arm...my mastectomy and lymph sampling were done in 1994 and I never ever had a problem with swelling...makes me wonder if the Afinitor is to blame!!.. horrible drug
I was on affinitor for 5 months..quit because it was hurting my lungs and wasn’t doing much good. After two months thereafter on Piqray, my right arm had a lymphedema flare up, probably related to lifting my 22 pound grand baby! I too had BC back in 94. My first ever lymphedema was in 2016 before my doc found that there was a recurrence in the tissue under my arm. My advice is to never assume anything!
Thanks SoCalLady. I was given Claritin but it didn't make the rash go away. It just made me more miserable bc my skin became extremely dry (on top of it already feeling inflamed and itchy). Then it was on to Benadryl. It also didn't make the rash go away. It just made my skin more dry and my mind so groggy and dingy I had to take a few days off of work while on it.
Piqray is one of the meds that's on my onc's list to try on me. If you don't mind, could you tell me what allergy meds you were put on that worked for you?
After getting a severe rash twice all over my body (face excluded), I'm now on Claritin in the morning and Famotidine 20 mg (generic for Pepcid) + Prednisone 10 mg.
Hi there: I had just started Ibrance/Faslodex last November, when I had do drop the Ibrance because of low immune system. Took a month to recover but I remained on the Faslodex. By then I was scheduled for a surgery in January so I didn't start Ibrance again for 3 months. Scan end of February showed no progression.
I am now just starting a 3rd round of trying Ibrance at decreased dosages. I am down to 75mg. Hope this works. Always had to wait a month after each adjustment, for my immune to recover in between dosage changes.
So basically, I had the 3 months only Faslodex and then have been mainly on Faslodex with intermittent Ibrance since beginning of March. No side affects. I feel ok.
I have an appointment with my Oncologist end of July. I would think she will order a cat scan and bone scan then. Probably sometime in August. Will post the results.
June, thanks for sharing your experience. That's great that your Feb scans showed no progression esp being mainly on Faslodex. This gives me hope that Faslodex may be enough for me. Good luck with Ibrance. I had to decrease from highest dosage to 100mg. Once I got the dosage lowered it was a lot better for me and I was able to stay on it for over a year.
Hi - I have been on Faslodex only since 3/2019. I have difficulty swallowing pills and capsules so my onc said she would try Faslodex only. I have been stable with no progression of my liver tumor. I have MRI every 3-4 months and a chest CT scan every six months to see if the cancer has spread. So far so good. I do not mind the shots. I have some side effects - bruising, itching, and hard area under the skin. My labs have been normal and my tumor markers are in the normal range. Good luck to all of us on this journey.
Cpidacks, thanks so much for sharing your experience with Faslodex. Wow, you've been on Faslodex only for over a year w/ no progression. That's great! This gives me hope.
I don't mind the shots either and I was dreading it bc I really, really hate needles. But they were tolerable and the nurses really know how to inject me so I feel the least amount of discomfort. All the best with your next scans.
I have been on Faslodex only since May. I started Ibrance/Faslodex combo last July after scan showed small nodules in lungs. I did 9 months starting at 125mg, dropped to 100 and finally 75mg but stopped Ibrance due to ongoing severe neutropenia. I could only get to 14 out of 21 days before I had to stop since my white count would drop to around 1.5 and absolute neutrophils averaged 500 (.5) It was scary before with such a weak immune system but even more now with the COVID virus. I usually had to wait 3 weeks before my neutrophils would be high enough to restart Ibrance. My cancer markers are normal and since I stopped Ibrance my white count averages 3.5 and neutrophils 1700- that’s still low but at least it’s at the bottom of what’s considered normal range. I have my first PET scan in a few weeks after being on Faslodex only for 3 months. Praying it will show no growth or spread🙏. Good luck to you.
I am at 75mg. now because of low immune. I will find out next week what might be the next plan if my immune system is still down. I would guess staying on Faslodex alone since it was working. I have to see what the blood work shows. I will have that done today along with my butt injections. Good luck to all of us.
That is quite a decision to make. I can understand if the treatments are to awful. I might go the same way. I don't want to keep poisoning myself with these medications if they aren't working. Although some here are doing ok on the next regimen of treatment. (Xeloda)
I hope the Faslodex works for you. Wishing you well. Do as many things as you can that you enjoy.
Hi Equavel, thank you for sharing. I hope Faslodex gives you promising results and palliative care gives you the best quality of life as possible. All the best.
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