I thought I’d post an update although I’ve answered some of you today
First I want to thank you all for getting me through yesterday...I was so scared and upset to the point of being ridiculous
Anyway I’m starting Afinitor and aromasin (exemastane) in the new year...I will be started on the 10 mg dose of Afinitor ( why I don’t really understand but was the same with Ibrance)
I gather the exemastane is similar to letrazole so I’m not too concerned with that drug...it’s the other one ugh!!
I was also invited to join a trial consisting of testing two drugs...50% of patients receiving two drugs the rest having only one drug....I turned this down as I want to be treated with drugs that have been tried and tested for some time....not in a mood to gamble with the unknown...maybe selfish but just not for me...I’d worry too much
I’ve read a few posts on here about Afinitor but if any of you ladies have any personal experience of it or any tips I would welcome them
I know reading lists of side effects can be worrisome and I may be fortunate and have minimal effects but personal experience is more useful
Barb xx
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Barbteeth
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Hi Barbteeth at least now you have a plan of action, which is always good I wish you all the best and no your not selfish you gotta do what's right for you
I was on this combo for my second line of treatment over the summer. Interestingly at the Marsden they have reviewed the Protocol and only give 5mg. According to them it limits the potential damage to heart/ lung ( can't remember) and still delivers the same benefits... My advice to you is to use the mouthwash as instructed... Seems a bit of a faff first but whenever I dropped the routine I ended up with mouth sores... I must admit and that is probably not what you want to hear it made me feel quite rotten ....Poor appetite and achy...
Curious about the trial that was offered. Also, wondered why they didn’t offer Fulvestrant. My oncologist told me there is a trial for oral Fulvestrant but it is only offered to patients with bone mets and progression to the organs. She said the research is quite promising. Fulvestrant is my second course of meds (I receive the injections) and I have fewer side effects than Letrozole/Ibrance.
Jade, I certainly don't want to hijack Barb's thread, but I'm very interested in the trial for oral fulvestrant. I'm expecting a med change in February, and the thought of the injection is terrifying to me. I cant find anything about the trial. Do you know where I might find some more information? Thanks and have a wonderful holiday!
I will send my oncologist an email today and ask for the info. Will send you a PM. BTW the injections are not bad at all! The nurses warm them up for me and I have no pain after.
Don't be afraid of the fulvestrant injections. I have been on the injections since March. You might have some discomfort for a few days after the injections. It seems to be different month to month for me. Some months I have itching and bruising at the injection site. I have difficulty swallowing pills so I am on the injections only for now. So far no progression. I have a tumor in my liver. Good luck if you need to have the injections monthly.
I know protocols are different for different cancer centers and different countries, so I'm just letting you know about the protocol that my cancer center followed for Afinitor. I am being treated at Memorial Sloan Kettering in NY/NJ.
I started at 2.5mg daily for a few days, then went to 5mg, which I tolerated (with the exception of mouth sores, but there are remedies for that). After one month, my onc increased by dose to 7.5mg daily. Almost immediately my liver enzymes increased dramatically, so I had to go off for about three weeks. I then stayed on 5mg daily for one year.
AFter one year, when there was slight progression of one of my lung nodules, my onc increased my dose very gradually to 7.5mg until after the second year I was back on 7.5mg daily. At that point, the lining of my lungs became inflamed and I was taken off completely.
My onc told me it was rare to tolerate 10mg daily - she only had one patient who could. Also, I went for a second opinion at Weill Cornell (also in NYC) and their protocol was to start patients at 2.5mg daily. I'm not trying to scare you, and maybe you will be able to tolerate the high dose, but maybe you could talk with your onc about dosing. Just a thought.
By the way, the Afinitor/Exemestane combination was very effective in eliminating some of my nodules and reducing others for the first six months. THen, if effectively kept me stable.
You are stronger than you think always love reading your posts you tell it as it is. I never know what to say so just read everyone's posts and take all your advice . So keep posting enjoy christmas and face 2020 with strength and courage xx
It must be scary when you have to change meds. I so hope you do really well. It’s good to know there are dosage options. Also alternative treatment options for the future.
However, whilst everyone is different, it is so helpful to get feedback on real experiences on this forum. Just imagine how isolated MBC patients must have felt in the past ....
Thank goodness you’re coping with it....are you in 10 mg Afinitor?
Barb xx
I’m sorry you have to change meds but maybe this one will do for you what Ibrance couldn’t. I’m rooting for you and sending healing thoughts your way. Please keep us in the loop and come here anytime to vent. ❤️
So sorry you must change medications. If it was me I would at least take the info posted here and discuss it with my oncologist. That will give him a opportunity to explain his reasoning for the higher dose. And gives you an opportunity to assess if you agree with his philosophy . I always make sure my oncologist understands that quality of life is of the most important!!! Good luck with your decision only you know what's best for you! And we do have to trust our doctors to some extent. Have a Merry Christmas enjoy your family time and try to forget this crap for awhile.
Barb - I did that protocol and i didn’t have any issues! Little to no side effects - honestly I was sad to move off! Did great on my liver tumors, shrunk to almost nothing under 1/2 cm. In 4 months.... but my plural effusion got worse for some strange reason! So they moved me off. It’s a manageable - dont be afraid. It’s crazy... it’s just about finding what works for your body. I’m on my 4th drug in 2 years scary... but my tumor marker are now 19 (down from over 200) . I feel great and keep a positive mind! You’ve got this! I did use zinc for mouth - open capsules and rinse then swallow. My Naturpathic is fantastic and that worked like magic. They gave me some pharmacy god awful shit that I could not use — never had mouth issue once on zinc. Let me know if you want more info there...
Thanks for the info...I rang the oncologist secretary to ask for a mouthwash prescription ...I don’t know what it is but she said my GP can’t prescribe it as it has a red warning....don’t fancy the sound of that!!
Please let me know about the zinc treatment as I prefer to use something like that if my mouth ulcerates
Brilliant news about your markers...the lowest mine ever got was 118 shortly after starting Ibrance letrazole combo then kept creeping up...now 550
I think you are wise to go with the approved meds and not trial drugs! Only about ten percent of drugs that work with mice/rats end up working with human beings. A phase three or four trial might have some benefit..... those have already been shown to be "safe," and those more advanced trials are about refining dosage. I've been on exemestane for 2 years, after getting almost five years from Femara (Letrozole) and over 9 years from Faslodex. I've mentioned here several times that I had a bad experience with Ibrance (supposedly "rare" damage to lungs, seems permanent). A dear friend of mine died from Afinitor not long after it was FDA approved when her onc, and then the pulmonologist who was co treating her in ICU, did not put two and two together and kept giving her the Afinitor after her lungs were failing. She was hospitalized with acute pulmonary collapse. So I am eery of these meds based our our experiences but that doesn't mean that others shouldn't try them and might do really well. Just be sure to monitor your breathing and if you start getting short of breath, report it immediately, like at 2am on Christmas morning immediately! You are right about Letrozole and exemestane being similar. Both are Aromatase Inhibitors (AIs) with Letrozole being a non-steroidal AI and Exemestane being a steroidal AI. They are among the older meds for E + bc. I hope you will do well on this new to you combo and get several years from them. Keep us posted!
I remember reading about your friend dying on Afinitor and I will most definitely monitor my breathing...scary to think about the toxicity of these drugs
I am on the same treatment and dosage. Your oncologist should give you a steroid mouthwash to use 4 times a day for the first 8 weeks. This is for mouth sores. I haven't had any issues so far. I am in my 3rd month. My main complaint is the extreme fatigue. I also have extremely dry skin, itching on head mostly. When I am tired I lay down. I have a schedule that works for me. Up at 6 am do what needs to be done then between 2 and 5 I lay down and rest the get up and usually in bed by 9.30. When I started this treatment and read all the side effects I freaked out but fortunately effects have been manageable. I also have 2 kinds of nausea meds that I have only used a couple of times.
Good luck, stay strong and you will get through this.
You’ve cheered me up as I’ve been so scared of this new treatment...I had to ask for the mouthwash in case I get ulcers but apparently there’s a zinc capsule that works well a lady on here recommended this
I had bad reaction to Afinitor pneumonia and other bad side affects. But that does not mean you will. So many people here did ok with it.
Did you hear about Foundation one genomic testing? Finds a med that matches your mutations. I just got my results and it recommended Afinitor which I can’t take. The other one was Iv chemo of Gemzar. So I have to go with that. Hope it works my markers went from 300 to 2774 so this is it.
Hope you do well, my radiologist said it is a great meds.
I’ll make a note of that...forewarned is forearmed...I don’t know a lot about mouth ulcer treatment...you’d think I would as I was a dentist but I mainly just worked on teeth and don’t recall seeing this problem with patients when I was in practice
Yes I was prescribed Gelclair in the chemo ward( where I have my blood tests and have my ibrance prescribed) when I had a bad ulcer at the very tip of my tongue . It’s a concentrated oral rinse gel and the box contained 21 15ml single dose sachets. You pour the sachet into a glass with 3 tablespoons of water and then rinse around the mouth to coat everything well and spit out up to 3 times a day . And you have to avoid eating /drinking for up to an hour after each treatment .
They also prescribed me Benzydamine 0.15% w/v mouthwash to rinse with (15ml) every 3 hours .
Hopefully you won’t need them , but as you said best to be prepared ! x
Hi Barb, You must always do what is best for you. As for me, affinitor was not a good choice. I am diabetic. I was told that it might "slightly" elevate my blood sugar. I have been well controlled for decades with no problems. My blood sugar went from 107 average to over 350 in one day and would not budge down. I have been off affinitor for several months and it is still in the low 200's. So, be careful if you are diabetic. Otherwise, I had no side effects. Personally, I would love to be in a trial. They have some really good ones coming down the pike. I am usually excluded because of my diabetes and I also have rheumatoid arthritis. Good luck to you.
I’m not diabetic so that’s something I hope I don’t need to worry about..I was tested recently before my pet scan...although I read that Afinitor can raise blood sugar levels
The trial I was invited on is a phase 2 so it’s fairly early on in the trial...although I could benefit there’s no guarantee and I could be the patient that gets only the one drug....I just feel that time is so important to us all and I don’t want to waste it on something which could be of no benefit
What a shame for you though with Afinitor...you were lucky not to have horrid side effects ... all the best to you
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