Afinitor/Aromasin
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Sandibeach5, I am having a bronchoscopy done to determine if there is an infection in lungs or if it's cancer cells. What is a VQ scan? I want to move quickly on all these tests to move onto next chemo.
Thank you for your response
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Bethmom. I tried to cut/paste on my cell phone, but was not successful. The VQ scan measures lung perfusion, to see if you have good exchange of oxygen in your lung. Google has a good description. The golden standard is lung bx, but I was too critically ill to have this bx as my O2 sats were tanking. The VQ scan told my MO and pulmonologist the answer.
I will be thinking of you as you find your answers.
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ok so I've been on AA for a week now and I just realize I'm not having hot flashes , mouth sores or anything on the list for that matter .Now I'm freaking out that it's not even working for me . Can anyone tell me if it took awhile to feel the effects from the meds ?
Thank you
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So I'm off the Afinitor/Aromasine combo as of four days ago. Will be moving onto Ibrance 125 and Faslodex. Not sure exactly what is going on now, but I guess we can say that it has failed as of month ten. It is weird, I was sure the Afinitor had failed last time I went in to see the onco a month ago, but the PET scan had been so positive - showing almost NED that she wasn't hearing me. I went away to California last month during which time the infiltration in the skin of the left ex-breast flamed up even more, and the right breast began to change : it now shows signs of IBC, swollen up, skin pink, nipple retracting. They tried to convince me some women just have breasts like this - with retracted nipples (!) - (Like what ? I don't know what kind of nipples I had after 56 years ? No, bimbo, I wanted to say, but held my tongue : I have cancer. Can we just skip the first steps of the automatic protocol ?) This time I insisted on biopsies; my onco would have never ordered them otherwise. I want to see if this cancer is still estrogen-driven or if it has veered towards its original manifestation as IBC, almost triple negative, and rather virulent. There will be a TEP scan in at the end of this month. That and the biopsies could change the plan to go to Ibrance if it is not what she expects. But as of now, consider me a future Ibrance person. Time for me to do research on that. I wish you gals to have success on Afinitor. I was on it about ten months and it did seem to have done very well to shrink the cancer at least in the lymph nodes. The side effects almost disappeared entirely by month ten, but then so did its effectiveness. Weird.
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I just got switched to the exemestame/ everolimus combo, and will take my first Afinitor tonight. Has anyone else been prescribed the dexamethasone oral solution? My dr told me to use it 4 times a day for 8 weeks, but the amount I was told to take (10 ml) with the amount filled (only 240 ml), means that the script only lasts for 6 days. I'm putting a call/email into dr, but what amount did any of you use that used the dexamethasone? Is 10 ml each time correct?
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HI, nbnotes. You just need enough to swish around your mouth. I never bothered to measure; just used about half a little shot glass. Something is off with the amount they gave you. You may need to explain that you are not taking this internally but rather using it as a mouth rinse four times per day. If it takes a while to straighten out, I would use it three times per day to conserve. The dexa rinse worked very well for me. By the way, in the trial they specified an alcohol-free formulation so you may want to check yours.
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Thanks ShetlandPony! My pharmacist is putting a call in, and I'm putting an email in to my dr. It just stinks that it is the weekend.
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Nancy, I used the dexamethasone solution sporadically but it did work well. The mouth sores are the worst for the first 10 days or so and then plateau a bit, although always seem to kick around. When I wasn't using the steroid rinse, I did salt rinses that helped. I also found taking daily lysine supplements in a high dose helped more than anything else. It has a role in skin healing although I don't know the specifics.
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Amarantha, I am sorry to hear that Afinitor stopped working. Did the MO determine it based on a scan or something else? 10 months seems to be quite a long stretch for this drug. Good luck with Ibrance.
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Hi JFL ! Thank you so much for asking. Well my oncologist based her decision on what she saw of how the skin mets had exploded across the chest, and the October 31st TEP scan confirms the cancer spreading in the skin of the left breast as well also many new lymph nodes lit up, both on the right side, and near the right side of the bottom of the rib cage, also the sacrum lit up, which I guess means it has now gone into the bone. Not happy to learn this of course. I have an appointment with the oncologist next week, have also had some biopsies taken of the skin, I was hoping to find out whether the cancer is still oestrogen sensitive or not, but probably the sample will be too small to show much, said the biopsy doctor. At this point I would prefer I think to go full whack chemotherapy to beat this bastard back and then go to the Ibrance later. We'll see what she says next Wednesday. I am also organising to get a second opinion in Paris at the Curie Institute. Good luck to everyone on Afinitor !
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Hello, Amarantha. So we are both off Afinitor and on to other threads, but I wanted to come back and say hello. I agree that with an explosion of IBC mets I would ask the oncs about some chemo first. But if it is safe to go with Ibrance and Faslodex, then good. Getting a biopsy and a second opinion at this juncture seems like a good idea. I'll be following to see what they say.
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I am going to be on the AA protocol within a week. Liver lesions. I was on Xeloda but the lesions grew.
My choice was this or Taxol or palliative care. But with the exhaustion, breathlessness, cough, being in a wheelchair when out in large buildings, well, the oncologist was not so keen on using chemo and further reducing my QOL..... though he left it my choice.
Anyone else on the A/A for liver lesions and how has it gone? I will be reading pages.
Diane
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1ml of dexamethsone and 9 ml water which makes the 10 ml swish around mouth...works well for me...i have been on this combination for just over 2 years 😀
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Please can some of you comment on the respiratory issues patients on Afinitor have had. I understand from page 1 that there is a or was a thread with details. Or is the thread for Aromasin? Either way, Can someone post the link for me. I have COPD, I have a severely compressed right bronchial tube, I went through a year of a collapsed right upper lung lobe, I have a horrible deep cough. I am worried I will not be able to handle the Afinitor should the respiratory side effects hit me.
Please, let me know. I learn from all experiences. Thank you.
Diane
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Bluebird, wish I could help you but I haven't yet been able to get on the damned stuff long enough to get those kind of side effects. I watch for them, as I also have lung issues and already have to use an inhaler and still get SOB with very little exertion. They are not as bad as yours, though, and I would also strongly question going on this med. Perhaps starting at a lower dose?
I'm a week into my fourth attempt at getting on the A/A regimen. The first two times had to stop due to bad mouth sores. The third time I tried going up in strength to see what I can withstand. Failed at 7.5mg. Took a big break during November as it is apparently messing with my thyroid. Talked to my Oncologist last week and she put me down to 5mg and I've been on them a week and a half. No side effects yet but I don't expect any to come up until week 3. If I get bad mouth sores again that will be it for me. QOL is more important than living with a mouth full of sores. Some people have said that if you stick with it the mouth sores practically disappear after awhile but I have not seen that.
Add into the mix the fact that they quit making my thyroid meds and i'm on something new and I'm in what I call "thyroid hell" and my QOL this week pretty much sucks. Not much gets done when you're pretty much stuck in the recliner with barely enough energy to take care of the pets. Ugh.
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Bluebird, has there been any talk of Ibrance/Faslodex for you ? or have you already tried that regimen ?
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Bluebird, I have not been on A/A because I was afraid of the lung issues. On the side effect info for doctors it was 19 percent that got lung problems from it. It seems like it's hard to get rid of and takes a long time to clear up or sometimes it's even permanent. I don't want to scare you because I do not have experience with it myself. This is just what I've read on these boards. There is an older A/A thread and someone eventually started a new one. Or maybe this is the old one?
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Bluebird, what about verzenio? It sounds very promising and works as monotherapy on heavily treated patients.
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I've been on A/A for about 6 weeks now. I've got the normal side effects (mouth sores & nausea) that are pretty well controlled through the dexamethasone mouthwash and eating about 1/2 of what I think I want or used to eat. My liver enzymes have unfortunately tripled in the time I've been on it (which is also a known side effect). So, I'll be doing bloodwork next week for tumor markers and liver enzymes to see if we need to lower the dose.
Has anyone else had the Foundation One testing of their tumor? It tests for alterations and out of the 6 or 7 alterations my tumor has only mTOR has any drugs FDA approved (afinitor) or in clinical trials. So, in theory this med should work for me. I sure hope that the liver enzymes get back in control on this or a lower dose. Knowing that it should work definitely makes me care less about the side effects and want to stay on it.
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Jean in the snowbelt of Ohio - I get that, my poor dog doesn't even get brushed right and he is very huge and furry. I just cough and hurt. Also, didn't know the A/A could mess with thyroid. Would not be cool as thyroid runs the show. Not the heart and not the other parts people joke is the boss. Thyroid is boss of it all. May take thyroid longer to cut to the quik or kill you but it is the boss. I saw a thyroid specialist / surgeon yesterday. He has ordered a CT of chest and throat plus scope of throat. I like him.
Amarantha - that is one of my choices. I have been on both and had decrease in mets on Faslodex / Arimidex. 3 yrs then I went off due to blaming my cough on the Faslodex. But it wasn't - it was cancer creeping in and not being reported on my April 2016 PET CT. Though the wording in Nov 2016 was "increased uptake and size in >>>>>>>>>>>>>>>>>>" On Ibrance / Femara from end of Nov 2016 to April 5 2017. There was decrease in size of all those but they were not "gone" so I wish I could try the two together for few months. They each worked quickly on me.
HLB - I remember you I think it was that warned me on this and I am so grateful for that. I looked deep into research and patient and doctor reports on sites - even on .gov doctor reports. The lung issues are very real. And last time I took prednisone at 10 mg only I got heart palpitations, shortness of breath and a rash all over for days. Benadryl made me worse. My DNP had me use Pepcid AC and eck cannot remember but another off shelf med to counteract the H1 and H2 histamines and it started clearing up. So I probably could not take any steroids to clear up the pneumonitis which I just got over after getting it July from radiation.
HLB - Verzenio is one that the onc I really liked said was in our back pocket. He said it was still very new and not enough info yet.
Long story long.... The MO I liked that was a temp.... He thought I was going to do A / A plus TACE (no condition to handle TACE and he didn't understand that). Then he wa leaving and before the meds came from speciality pharmacy, I jumped ship and swam to the Goshen Cancer Center where the BC specialist was iffy and said it was borderline for me handling Taxol. I asked what would he recommend if I did not choose infusion chemo. He said what the other MO recommended, the A / A. He sounded enthusiastic even. So I almost did it. But after all the research I am like, um, no guys. So canceled my training for A / A and have requested the BC specialist transfer me to another MO at same center. Waiting. And wait for this big bomb............ I got the cc notes from my DNP (nurse w a doctorate in nursing) and see that I can't trust that MO, he wrote in his notes and did not tell me that he expects the A / A will have rather small effect for me. So I immediately dove off his particular vessel and am swimming in the ocean with no MO. No treatment choice. I still have the staff at Goshen, but I need an MO. My counselor there took the letter I wrote to the BC Specialist requesting the transfer to another oncologist on the team, she hand delivered and a copy to his boss for accountability and to gain some speed. The MOs office had a week to call me when I told them I would not be using that choice, they didn't. ugh. Thus I used the letter.
Nancy - I am still waiting for the labs on genomic testing. I want to know what would work for me too. Especially after 8 loyal months on Xeloda and finding out it was never working. I am glad you are on something that is supposed to work for you.
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Bluebird, I hope you are able to obtain an MO soon. How frustrating. Sometimes we are damned if we do and damned if we don't with this drug.
I am on Xeloda, but recent F1 results show Afinitor for me so I'm in the same boat as you are Nancy. I truly don't like what I've read about the side effects and can't take Aromasin with it because I had a bad reaction to it years ago. My MO wants Afinitor next. I blew through Ibrance in 5months, radiation did little to relieve pain, Carbo and Gemzar ended me up in the ER and now Xeloda. Appreciative of any tips for Afinitor as I will keep that in my back pocket until mid January scans.
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Lindalou, good luck with Afinitor. Yes some of the side effects can be tough on the body; it takes a while for the body to adjust. There are solutions for every problem though. I can say after the initial problems with mouth sores (never abandon the saline mouthwash) and initial fatigue, you can feel normal on it. I did end up with a lot of bone pain at the end, whether this was the drug or new bone mets, the jury is out. Good luck. I sure hope it works for you.
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Yes Lindalou, the questions becomes just how damned do we want to be. I am doing quick research for that answer. When I looked at the Afinitor trials I see 0% got NEAD, 7% had disease reduction, 74% had stable and then there was progression for 5%. Compared to less favourable on Aromasin alone. But the Aromasin progression was 4x greater. I am hoping there are better outcomes now with all the patients on Afinitor. I find there are just not enough trials and wish for more info. Still, Afinitor would not be wise for me, I see that w all the dark respiratory issues. So need another choice. Lindalou, I really do hope it works well for you and you are one more who can say you went to NEAD on the A / A.
The MO I did like who was a temporary fill in for my primary when he moved - he also chose the A / A for me and I am thinking how I wish I could contact him and ask what he thinks of Dr. B saying it would have little effect for me. The nice MO had stressed how I would have to be watched weekly, very closely. And taking the first dose at the office and a low dose to begin and work up. He also thought I was doing TACE, so that is where he would think I would have a better chance with it, but I was too sick to it then. I am getting stronger every day.
Amarantha, the saline mouthwash is what I hear does well too. Or the healing with dexamethasone (corticosteroid rinse and swish that I can not use, allergic). Some other treatments can cause mouth sores so I will remember your voice on using the saline while in my travels through the choices. Thanks.
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Thank you all for your input. I will stay on Xeloda until scans in January but will keep your comments and suggestions in mind as I move forward.
Spoke to a researcher today about Afinitor. He quoted much the same as you did Bluebird. I also have another mutation that is very uncommon and he said basically it's 50/50 if Afinitor would work on that one as not enough people have it. It is AKT1 which has only been in 2% of all breast carcinomas that have been analyzed. MO and researcher said it has been associated with resistance to chemo and radiation which has been true for me. All of my tumors have grown back after radiation.
Best to all.....
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Lindalou - I hate to think it but I am supposing mine in supraclavical have been growing back too, swollen and now having same shoulder pain as when the two lymph node masses grew together last Spring. Radiation stopped it in 3 days and I had 15 turns on that. Chemo pill Xeloda did not work at all, one onc says, others are missed opinion on a mixed response. Do wish I could get the testing done to know which mutation(s) I have. Still waiting.
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So, I finished my first 2 months of Afinitor and the dexamethasone mouthwash. The last couple of weeks of the mouthwash I had no mouth sores , and my MO said that I shouldn't get them again b/c of the mouthwash. Well, 3 days into month 3, and my tongue started to feel raw at the front, another day & the area that touches the teeth under the lower lip was doing the raw/starting to get sores again. So, apparently I am not one that the mouthwash works miracles on, but thankfully,MO said just to keep using the mouthwash. Any others on the mouthwash indefinitely?
On the other hand, I've lost 20 pounds in those 8 1/2 weeks; so, looking on the bright side as I'd been trying to lose those pounds for years, lol.
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A/A update:
Mouth sores reappeared, along with sever fatigue and headache and hip pain that is just terrible (and is nothing according to a recent CT/PET). I'm at half strength this time and the mouth sores are smaller, don't ulcerate as badly, and go away quicker. So i'm going to keep going on it to see how it goes. I see my Onc next week so she'll give me her opinion then. I always look forward to our talks
I think the "fatigue" is the worst. Take thyroid fatigue and Afinitor fatigue and you have fucking exhaustion, not just being tired. Took me 3 hours today to do the blasted dishes. And now I'm going to go shovel snow until I am out of breath. That should take about ten minutes...
Best to all...
JJ
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JustJean, I hear you about the dishes. This kind of exhaustion is what prompted me to demand a dishwasher. We are only two people but it changed my life. Afinitor is quite tough to tolerate.
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i just started Afinitor and Aromasin on February 7, 2018. Have started having knee pain when I get up in the morning. Only thing that will stop this pain is 2 Oxycodone 10. I'm worried that I have to take this every day. Afraid my pain will get worse from my stage 4 cancer...And I've already used this pain pill. HELP
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I had terrible pain in every tendon, bone, and joint while on Afinitor, and it stopped when I changed meds. Don't hesitate to complain to your doctor !
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