Afinitor/Aromasin
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I just found this thread. My MO mentioned next line of treatment would be AA. OMG it sound terrible, especially for people who have lung issues. I have numerous mets in my lung and chest, they have gotten better on one year of IF. But, still active. I'm considered stable right now but scan did show some mixed results.
I've been in panic mode since my Friday MO appointment. I have had F1 done. It showed four mutations but only one actionable one. ESR1. It clearly says my tumor is resistant to aromatace inhibitor. So when I asked her what she might use on progression in regard to that mutation, she said AA. I was so shocked I don't remember anything else she said. Now, I'm even more bummed by reading this thread.
I have time to research and ask a lot more questions. It's like she's totally disregarding F1 report! Who does that?!?! In her defence, she did say she would do a new BX to make sure cancer has not changed. F1 used a sample from my initial DX of MBC from over a year ago. Before I started I F, that begs another question. Why did my tumors respond at all during the past year if I'm resistant to AI?
But she did not mention doing another F1. What?!?! At this point, I am thinking I will refuse AA, I don't have any mutations that match either drug.
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If by AA you mean Afinitor with Aromasine, know that Afinitor can be coupled with other things besides Aromasine, maybe ask. I wasn't aware that Afinitor was a drug that only worked on certain mutations - it is not immunotherapy. Targeted therapies target particular mechanisms which cancer uses to its advantage, particular "signaling kinases" - I may be wrong, but I see these as switches or doors that can be opened or shut. Its such complicated science I can't begin to comprehend, but this wiki article on mTor, mammalian (or "mechanistic") target of rapamycin has a marvelous diagram.
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Amarantha, Thanks for the article. Afinitor is in my cancer arsenal next. I have the PIK3CA and AKT1 genomic findings per Foundation One.
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Amarantha. Good info. So, Afinitor is a targeted TX but different than Ibrance. My MO also said it might be the Ibrance that fails me. Time will tell, but the more I learn the better prepared I'll be. Did you have any lung SE when you were on it?
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Lindalou. I don't have either of those alterations on my F1 report. The only actionable one I have Is ERS1, which shows AI resistance. That's one of the reasons it puzzles me that my MO would use AA as my next line of TX, I would understand if I had the same genomic alterations you have.
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Here I am copying and adding to a post that I just made on the liver Mets thread, a response to Grannax2, since I think my comments might be relevant to this converstion as well: I was not on aromasin + afinitor; it was Faslodex + afinitor, for four months. I felt good on it and thanks to the dexamethasone mouth rinse had hardly any mouth sores. But it did not work for me. No side effects and no response. My TMs continued to climb, so I went to Xeloda. And yet some people here have had a good response to this combo, and there is a thread here for it now.. Faslodex+ Afinitor seems to be a new thing. When I suggested it to my onc she said something like, “Oh yeah, there was that study that just came out.” Have you been on faslodex yet, Grannax2? While it is true that aromasin is a different sort of aromatase inhibitor from letrozole/Femara or Arimidex, it is still an aromatase inhibitor. I wanted something different, so that's why I tried Faslodex instead. It is a SERD. I think my onc figured that it was good to try all the hormonal therapies before resorting to chemo for me, but she suspected the cancer was no longer "functionally ER positive". Since your F1 showed an ESR1 mutation (possible AI resistance), you might bring this option up to your onc. I agree that lung issues need to be considered here. What about Faslodex alone? Or even Xeloda?
Just a note, my onc says that response does not always correlate with F1 results. FYI my 2014 F1 showed a PIK3C2B mutation as a variant of unknown significance, and no ESR1 mutation. My Guardant liquid biopsy in 2017 showed no ESR1 mutation either.
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Thanks Shetland Pony, great advice. No I have not been on faslodex yet. That's what I thought my MO would recommend. I thought she would keep me on Ibrance and do Faslodex with it. I know that combo is approved now. When I asked she said No, it's a shot. I said I knew that. She seemed focused on oral meds only. But she did not bring up Xeloda. I will ask her about those other options.
When I was reading about AA, it seemed like it was a very typical 2nd line therapy. Not very specific. I know there's usually an order of things to try in medicine, in general. I hope she's not locked into going in order with no exceptions.
In all of my 25 years of BC and MBC, I've wanted/needed to read all the information I could get my hands on. I really respect " outside the box" thinking. It saved my life once.. So even though I may sound obsessed, it's just how I cope. This is a great way to satisfy my need for info. Thanks again.
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Hello all! Moving over here from the Palbociclib (Ibrance), Letrozole, Faslodex page. I've been on Ibrance since April 1, 2016, along with Letrozole first, then Faslodex. Due to rising TMs, my MO is moving me to Affinitor and Aromasin. I talked to the speciality pharmacy's pharmacist about side effects but not really sure what to expect "real world" on that issue. I had very little SEs with Ibrance, mostlly fatigue (what's new there?), so I am approaching the A/A with some trepidation. Starting out with 10mg. every other day on the Affinitor to see how I tolerate it. I have read some posts which are describing Affinitor upsetting thyroid function. As I have been hypothyroid since my 20's, I'll be very interested in those commets.
My MO says "You're tough". Well, I am but I'm getting awful tired of being "tough".
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You are very welcome Grannax2. Bestbird’s MBC guide has a great summary of the typical order of therapies for ER+ bc, both with single agents and combinations. And maybe this is a good time for a second opinion from an oncologist at a major cancer center, to see how their recommendation compares.
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I’m so sorry. I’m about 2 weeks in to this whole Afinitor/Aromasin drug. What do you mean by “skin Mets”? I have 2 new lumps that have come up under the skin since starting this. I see my Oncologist tomorrow and I’m going to insist that he order a biopsy on these 2 new lumps! I’m very worried right now. I had been on Halaven for almost a year when it failed. My last Petscan was in Dec 2017....and I don’t see any mention of these 2 new areas. Don’t know what to think and I am very scared. I’m 75 years young. Never had any side effects on the Halaven. And so far, nothing on the A/A. Can these A/A’s be causing the 2 new lumps?
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Warrior, I have not started Afinitor yet, but my friend who just finished it had lumps show up too. They reduced her dose and that helped. Her MO said is was a side effect. I had a terrible reaction to Aromasin years ago so it would just be Afinitor for me. I've blown through Fasldoex, Ibrance, All 3 AI's , carbo/Gemzar and now on Xeloda. My options are getting slim, so mTOR inhibitor may be next for me.
Wallaby, good luck
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Lindalou: I'm sorry to hear you've gone through all those modes of treatment. It looks like I might be on the same path but I am holding my breath that this combo works as long as the Ibrance did. Good luck to you also!
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Lindalou, would it be Afinitor with tamoxifen then? I do believe you have to take an anti-estrogen with Afinitor.
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i saw my oncologist today and asked him if the lumps could be a side effect of the Afinitor/Aromasin. He said NO! He has ordered an emergency petscan for today at 2:30 pm. And he now wants me to stop the A/A and start Xeoda once it is approved. I'm so scared and don't understand all this crap. You said your friend's doc said it was a side effect of the A/A. I can't find that listed as a side effect anywhere. I'm so upset and confused! Did your friend's lumps go away
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Warrior, What did your PET show? Yes my friend's lumps went away after she was off Afinitor.
Shetland, I see MO in 2 weeks and we will discuss options. I need a drug that will kill bone mets and liver mets. He had said no to Tamoxifen in the past, but that may change.
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I was on xeloda for almost 3 years staying stable. For some reason, my onco added affinitor last July. I got incredibly sick with a lung infection. I stopped affinitor but I think the damage was done. My onco did not think the affinitor caused the lung issues. The next pet I had showed a tumor outside my esophagus and liver mets. I started carbo/gemzar then and have had 5 treatments. It’s not as kind as the xeloda because it effects your platlets and ted blood cell counts. I’ve had to have two iffusions so far.. once I finish the end of May, then I will have a pet. I would ask questions about affinitor before you start it. I’ve heard good and bad things about it.
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I never did take the afinitor. But was on Aromasin from January 6th until March 8th. The first months was easy but my sensitivity to the prescription world soon took the toll and I was unable to eat more than a few bites at a time, weak, incapable to sitting upright for long when I visited w others. So I went of the Aromasin and got my mojo back so to speak.
Now I will once again be on Faslodex w Arimidex and metformin.
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My pets can showed increase in my spine and possible cancer in breast. Took me off Afinitor and I just started Xeloda 1500 2 x a day. 2 weeks on...1 week off.Prayibg it works. Thanks for your response.
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I'll be leaving this thread now. After the second trial with Afinitor at half dose, 4 weeks later (despite the mexadethasone, which I think I just spelled wrong, dammit) I had 7 nice big sores in my mouth and I just said the hell with this, this is not any quality of life.
Add to that that it wreaked havoc with my thyroid and I've been working for MONTHS now with my Endo to get this figured out. I have spent the majority of the last 5 months asleep - anywhere from 16 to 22 hours A DAY. Again, no quality of life, for sure. I've been tweaking my own meds for thyroid now for the last couple of weeks and actually have had almost TWO WEEKS of being awake all day and not falling asleep in the recliner. Hallelujah!
So, this is not the drug for me. The Onc agreed to my decision (not that I would have cared, lol) as she agreed that was a lousy quality of life.
Onward ho!
Hoping that the AA combo works for anyone who is going to try it...
JJ
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Afinitor sure has played havoc with many of you. I'm running out of options and will ask MO what he can do besides Afinitor. Thank you all for your responses.
JJ, What will you start now? The mouth sores sound awful. I only had a few on Ibrance and I can't imagine what some of you have been through with severe mouth sores.
Wishing all well as we navigate what treatment to take next.
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Usually, I do not post in this thread, because I am on Ibrance/Femara, but I have the following question, which one of you ladies might be able to help me with:
Can anyone tell me the ingredients/amounts of the dexamethasone mouth wash which is used for mouth sores? My MO asked me about this during my last visit for another patient, because he thought that I am a pharmacist (I am not, just working in pharma industry). Using a dexamethasone mouthwash is described in a lot of literature wrt Everolimus, however, a recipe is given nowhere. And there is no commercially available mouthwash here in Germany, it needs to be mixed by the pharmacy. It would be great, if I would surprise my MO during my next appointment ;-) .
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Hello All,
Well, I am just over one week into my Afinitor/Aromasin treatment and I'm miserable! I actually do think it's the Aromasin and not the Afinitor as 11 years ago, after completing my first course of treatments, I was placed on Arimidex. I had the same horrible bone pain and weakness from that as I am now getting with AA. My then oncologist took me off of Arimidex and put me on Tamoxifen. Did any of you have the same reaction to the Aromasin, or did Afinitor give you the bone pain? I'm at the same point now as I was with the Arimidex...I can't live with this. Are any of you on Afinitor with a different estrogen inhibitor other than Aromasin? At the moment, I long for the days of Ibrance/Letrozole!
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Wallaby, Afinitor gave me bone pain all over. I am pretty sure it was the Afinitor not the Aromasin. I had pain in my wrists, elbows, tendons, hips, back, etc. I'd say all bones and tendons. It stopped when I changed for Ibrance. However shortly thereafter I found out I had bone mets in spine, it could have been that. Please do speak up about the pain very loudly.
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My time on afinitor & aromasin has come to a close after just starting it at the beginning of November. Unfortunately, the afinitor attacked the linings everywhere in my body & created some unusual side effects that we didn't realize were side effects until they landed me in the hospital for 5 days at the end of January. Since then, we've let me heal & tried the 7.5 mg with the bad side effects coming back in 4 days and then let me heal again. I just had to stop it again 4 days into 5 mg because of the side effects. Hate this as it was being effective, but my body just can't handle it.
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Wallaby,
A few of us are on Afinitor and Faslodex on another thread. I see you've already been on Faslodex. I was on Ibrance and Fas and when I progressed, my onc kept me on Fas because testing showed I'm now resistant to all the aromatase inhibitors. No way to prove whether the Fas is working or not....I've been on Afinitor for three months now and have found the SE's to be very manageable for me.
Nancy-Sorry to hear that Afinitor has been so hard on you. I appreciated reading your posts when I was looking to move to Afinitor. Best wishes to you.
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Amarantha: I have mets to my spine, right femur, skull, ribs, liver and right lung. When I was on Ibrance/Letrozole, I had minimal side effects. Tiredness, naturally, was the biggest one. I had one spot in my back that was painful from a met but the rest of my bones were fine. Now I feel like I've been run over by a very big truck! I will see my onco on April 4th. so she'll get the full update then. I'm not shy about speaking up about the pain. I use acetaminophen for the pain as I don't want to get on the merry-go-round of the oxycodone. Besides, it does less for the pain than the acetaminophen! I hope you are doing well, I enjoyed reading your posts on the Ibrance thread.
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Moissy: I'll have to go over to that thread and read up. When I was on Faslodex the only issue I had with it was immediately after the injection I would have pain in my right hip but walking afterwards helped with that. The next day it would be gone. Encouraging that you have minimal SEs with Afinitor. I'll have a better idea who the culprit is after my onco appointment on the 4th., however I feel exactly the same as I did on Arimidex, which is the same family as Aromasin. Sigh.
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I’ve been on Afinitor and Faslodex for three months now. Just posting here because I know how afraid I was to try Afinitor based on some of the personal experiences I had read. But we are all different, and It does work for some of us.
Got my first PET/CT results since starting Afinitor. Stable and happy! Many of my previously silenced mets are still not active. And the areas that were active last scan all showed less activity since Afinitor. My TM's have dropped about 40 percent from when I started Afinitor and seem to be hanging at that level now.
I also feel fortunate to report my side effects have been very easy to live with. I know this isn’t everyone’s experience, but wanted to pass some encouragement along
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Hello all...I am into my third week on Afinitor/Aromasin. The bone pain I had the first week has gone away for the most part. The interesting thing about getting rid of the bone pain is I was having an infusion of Zometa about a week and a half into taking A/A and the nurse told me to take calcium, which I had not been taking. As soon as I started taking it, the bone pain went away. Now, I don't know if that was a coincidence or due to the calcium. Anyone else here have that experience?
I don't seem to have very many SEs from A/A, aside from fatigue but I do now have one mouth sore on the inside of my lower jaw. I will ask my MO about the mouthwash. Interested to see what my blood test says about my TMs on the 27th.
Moissy, glad to hear that Afinitor is working for you!
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Hi All,
Not much activity on this thread but I'll ask anyway. Is there anyone here on Afinitor that has had a bout of diarrhea that starts out like it could be food poisoning or a general gastroenteritus virus and goes on for 6-7 days? I just went through that and spent 6 days in the hospital and it takes a lot for me to go to the ER! Yes, it could have been just the gastro virus...they did a CT (neg), x-ray of the stomach/intestines (neg - no blockage) and an ultrasound (also neg). 5 bags of fluids and a week and I'm finally getting better but it knocked the pins out from under me as far as energy. Messed up my Afinitor schedule as I wasn't taking it daily and now I'm a little bit leery about restarting it as one of the SEs of Afinitor is diarrhea! See my MO tomorrow so I'll have a better handle on it...maybe. All comments appreciated!
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