Afinitor/Aromasin
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Sondraf
it looks like you and I are in the same boat together. Please let me know how you’re doing? I think you started on this a few days before me. I may have radiation this week for some pain I’m having and new Mets in my right sacrum and iliac. Insurance won’t approve and I’m in pain. Stay tuned. Hope we both do okay with any SE and that we both respond well for a long time!
Sharware0 -
Hey shar - actually its nice to know there will be someone else 'along for the ride' :) It took them nine months to radiate this pelvis and Im doing so so much better now even after 4 of my 5 sessions. Really annoyed at how this year played out but who knew Xeloda was going to be such a bust? Otherwise Ive been off systemic treatment for three weeks now and feel almost like a normal person. Like you I also had a pulmonary embolism this year and am on blood thinners too (thanks Xeloda.. grumble grumble).
Unfortunately I now have a head cold that seems to have migrated to my chest, but not sure if its enough to go to the doctor for antibiotics yet (I rarely get chest infections) or the usual 'its probably viral'. Suspect this will need to be cleared up before I start A/A as MO/nurse were adamant about flagging anything cough related ASAP as it can cause pneumonitis.
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Hi Sondra -
I just lost my typed message to you. Radiation has finally been approved. My main oncologist is concerned it will kill too much bone marrow and cause me to be anemic. I just want the pain to go away.
Hope you feel better soon. A cold is miserable. We will get through this new treatment together. They are holding off until next week after radiation gets scheduled to start A/A. I’ll keep you posted! So glad you found me! But sorry for the reason.
Shar
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I do have to say that I am looking forward to only TWO pills a day, and not the 12 I was on for Xeloda! Nor having to explicitly time everything either. I did ok on letrozole as an AI, so a little nervous about Aromasin causing some problems, or having blood sugar/cholesterol impacts. I ilke to bake, that would suck to have to start watching a lot of diet. My MO will be titrating up on this one due to potential for mouth sores. Seeing as the liquid morphine gives me a few sores NOW im curious to see how I will be able to tell the difference!
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Sondra -
okay, here is where I am…radiation ends next Friday and the pills were just approved by insurance and will be here on Monday. 10 mg everolimus and 25mg exemestane. I see the MO next Thursday to go over how to take them but I kinda know from this quiet thread how to do that. I’m beginning to wonder if we are the only ones? No one else is on here but us or else they have given up trying to log on. Most posts are 10 years ago. When do you start with what dose? I hope you are over the cold by now and feeling better. And hope we do well on this treatment. Ibrance and faslodex failed me after almost 4 years with progression in bones/spine so I got a good run out of it.
Best to you,
Sharware
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I start on either Monday evening or Tuesday morning - my preference would be to take the drugs with breakfast as I really want to take it and forget it. I see MO on Monday morning.
It does seem rather quiet in here, Ive only had middling results (Lynparza) and a total fail (Xeloda) in the last 18 months so I am really hoping this gets in there and does the trick as I clearly need some sort of hormone control as well. Today I got some proper greek yoghurt to coat the pill in, we'll see how that goes!
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Hi all. I'm tracking this thread, because my MO has mentioned this as a likely next tx. We've decided to wait and see a bit longer before making a change. I appreciate you sharing your experiences
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Hey seeq, welcome! Yeah, my MO gave the Xeloda its time as well, but this was always going to be the next step. Part of me wondered about circling back to maybe Verzenio, though I recognise Im getting close to a point where I need a solid win here, so lets try the mTOR, especially as I strongly fit the prescribing parameters. My only worry is that the PFS doesn't seem that long, though as usual there are some outlier stories of 2+ years.
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Good morning, all.
I am starting Affinitor and Aromasin today and hope to share experiences here. My situation has been a bit nuts since last winter, when I was hospitalized for a week with pneumonitis from Piqray. Since then I've gone through Orserdu and Letrazole, and just began Zometa for what looks like new mets in my bones.
I'll update my profile accordingly soon. Now to eat some breakfast so I can take this new stuff.
Meanwhile, hello!
Tina
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Oh no way, its the legendary TINA2 IN THE HOUSE. Well, we have a cosy little crew going on here. Are you titrating up as well? I thought I would eat dinner tonight and scare myself with stories of terrible mouth sores and lung issues.
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Sondraf, c'est moi, the one and only: Outlier and Queen of the Faslodex Fanny Pack for a record-breaking 11 years. I'm a bit battered around the edges but still standing.
My onc did not suggest titrating up, so I just jumped in.
All, what's the deal with the mouthwash? Are you using it four times a day as a preventive or as needed?
Tina
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Hey everyone, circling back now that my pills are here. 25 mg exemestane and 10 mg everolimus. I’ll start end of week after radiation is done.
Tina - quick question about faslodex since you are the queen! I was on it for 4 years and have quite a few rump lumps on my hips. Some are hard as rocks and actually feel like rocks under my skin. Did you have those too and any way to help get rid of them? Is it something I will just live with? All my MO says is yep. It is from the faslodex shots.
Welcome seeq. Sorry you find yourself here too. We will get through this as a group. 🤗
Sharware
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Sharware,
Sorry to tell you those lumps are probably there for good. I stopped Faslodex last January and mine are still there, hard as ever. Sometimes they itch!
Tina
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Tina - thank you…..bummer…..sad face
seeq -….I just realized my mind is mixing you up with Sondra. Well, it starts with “S”….ha!
Good luck to us. There is a patient on the Facebook group that says she has been on this Tx for almost 11 years! 😮Sharware
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Ok I've got my pills and five small glass bottles of steroid mouthwash and a box of sachet mouthwash for if I do get sore mouth, same same but different I guess? Like am I supposed to swish and spit during my 3 am bathroom visit? This 6 hour mouthwashing requirement is stressful!
I have to go in in two weeks for blood check and xgeva, and I'm hoping after that the hospital visits will calm down for a bit!
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Sharware - no worries! I'm terrible at keeping track of names. I tell people I'm lucky I remember my own
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Good morning all - I will be getting my fourth radiation treatment today. The last one on Friday and I see the nurse today to go over taking these new pills. No one has posted yet how are you doing? No news I hope means you are handling the tx well. I wonder if my stomach will be okay because I have constant indigestion anyway. My radiation oncologist said not to start these until after radiation is done due to possible skin issues. I check several times a day for updates and it sure is crickets on this thread. Sending best thoughts to you! Hope all is going okay.
Sharware
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Sharware,
I think it's premature for me to report on Affinitor-Aromasin because I began taking it only a few days ago. So far there are not obvious new issues.
Tina
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Same, I think its day 3 tomorrow for me. Onc said 2 to 4 weeks for bulk of bad side effects to show themselves. So far ok with the mouth and no problems with I digestion or skin issues on rads site.
That aromasin pill is so tiny I almost lose it every time I pop it out of the blister pack!
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Thanks, Tina and Sondra. I am not in control of my emotions and am so nervous over this new tx. Since the stroke last June and another one in September, it all seems too much. I cry all the time. And the nurse called out sick yesterday, so I went to see her for nothing. I see the MO this afternoon. I’ll let you know what he says. Maybe the same as what you heard, Sondra. And my pills are in bottles! Not foil, so that’s something different. Mine are generics - maybe that is the difference. See you later and hope SEs are mild for all. ❤️ How long after radiation did your pain go away, Sondra? My back is still hurting even after 4 SBRT radiations. One more to go tomorrow. Did anyone say anything about radiating too much bone marrow? I have 5 spots they are radiating. 🙏 Thanks…
Sharware
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Shar - expect the pain to decrease over time. That happened to me four years ago when they radiated my really nasty sacral met, I could move more easily almost immediately but the pain (from the bone met, from the inflammation around it, from muscles and nerves not being used right) took a while to resolve fully and it took about 6 months to get off the cane that time. My pain this time was cut in half almost immediately but I am finding exercise, especially walking, is MORE important because one glute has been deactivated for a long time and working the muscle keeps the nerve pain at bay (which is due to compression from the inflammation from the cancer in the bone apparently). The bone strengthening injections will also help with all this.
The rads will keep working long after your last session - I can do things today I couldnt do Monday, or even last Thursday but I did have some pain flare which was managed. Every day you will notice improvement, but I would suggest coming up with some sort of daily activity so you can measure and see for yourself. For me its a timed walk around a specific area - I start slow and build up - to see my time getting faster. Write it down and it will be a huge confidence boost that things are headed in the right direction, even on days when you could swear you aren't making any progress.
No idea why we have only foil packs here as mine are also generics (except for the damn liquids in glass bottles, I almost shattered the morphine the other night!) but Ive got strips of drugs all over the place!
Its ok to be nervous of a new tx, especially with all sorts of other issues like you've had. I asked specifically about the bruising side effect because of my blood clot adventure and MO was very reassuring that its not something she sees frequently. I also made sure I knew who to contact with what, when should there be a problem. After that you kinda just have to let it go and see what happens, though that is easier said that done I know.
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Thank you for getting back to me with such good suggestions and advice. It sounds like you have been through a lot and learned the hard way how to navigate the roads we travel.
I have the last rad today. And am rescheduled to see the nurse next Tuesday to go over pills and what to expect. DH is picking up the mouthwash at the pharmacy this weekend ordered by my MO. It is one with a steroid and he said to swish and spit twice a day. I think your doctor told you to do it 6 times a day, Sondra. Is it something you have been doing too, Tina? If so, how is it working for you?
I plan to eat stuff I like this weekend just in case food taste goes South with these pills, Here is hoping for the best! For all of us…..
Sharware
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Checking in - things going ok so far with this med, maybe a little bit of a tingly tongue on occasion, but otherwise few problems, a smidge of headache but that could be caused by poor posture at the moment, and some fatigue but that could also be due to other issues. Possibly a bit of appetite loss, but I was getting that on Xeloda. These pills are so tiny! I popped an aromasin out last night and lost it in my slipper for a minute - its smaller than a tic-tac!
Im mouthwashing twice a day min, and add a third if I remember.
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No mouth sores so far! My instructions indicate using the wash it four times a day. I've been remiss and using it only twice and sometimes three times a day, and missed several days because of travel. Here's a report of a study that showed it proved preventive. I think we should all get in the habit of swishing and spitting!
Here it is:
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Took first pills tonight with dinner. I used the mouthwash this evening too and will use again before bed. Swish and spit! Too early to tell if there are any side effects. But the nurse said they will test my blood work every two weeks for a couple months to make sure my cholesterol and sugar isn’t too high, so that’s different.
Just hope this works for us all and kicks cancers ass. I can now rest tomorrow and will come back in a couple days to check on you for updates. Thanks for the info on the mouthwash study. Good to know and encouraging.
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Doing ok so far, I also take a tablespoon or so of Greek yoghurt (Fage brand) every day as per a long ago DivineMrsM comment about Aromasin. I can't tell if this stuff is making me achy or if its just generally moving again after so many months, but I am hoping this level continues as it is relatively tolerable. Im at 14 days next Tuesday, with bloods/MO on Monday. Let's see what the second half of the month contains, but I expect she will bump me to 10mg soon enough, just in time for the holidays!
I really do appreciate the tiny pill sizes, I almost feel like I am taking nothing at all!
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I’m doing okay with no side effects. Coffee and food still taste good. I am having vivid dreams and maybe due to these pills. Just thought I’d let you all know! So far, so good! 😁
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Ive got a bit of a rash/peeling skin on the right inner thigh on the undie line (intertrigo maybe). I had to send in a photo Friday to nurse, who showed it to onc who prescribed cream, but its 45 minutes door to door to hospital pharmacy in Friday rush hour and I had about an hour and a bit to make it. I said I would wait until Monday. Its fine, Medicated Gold Bond powder is doing the business keeping it dry and i pat pat pat some vaseline on for a skin barrier and slap on a gauze square.
Otherwise I think doing ok, maybe some fatigue (that could be some rads overhang/moving more) and Ive noticed a bit more light heartburn past few days. I woke up a few nights with a high resting heart rate and unable to get back to sleep, and frankly I think im going to chalk that up to a specific work conversation. How sad is that?! I noted it to the nurse but it hasn't happened on weekends (and I slept GREAT last night). Only a few more weeks of work left this year and then I go on indefinite medical leave and I CANT WAIT.
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Hi sondraf, I’m on a clinical trial Everolimus and ARV-471. I’ve been on it for 8 weeks and I get a rash off and on. My onc says it’s a side effect of Afinitor/Everolimus. I used some over the counter cortisone cream which helped and I’ve been doing better with using a lot of lotion and the rashes have been better. My worst side effect has been a cough which after I paused the Everolimus for a few days and they did a scan to rule out pneumonitis has been much better. I still have a dry cough but it’s better. I’ve had a couple of very small mouth sores when I haven’t kept up with the dexamethasone mouthwash but when I then took it regularly they resolved quickly. It has been much easier than Enhertu which was my previous chemo. I just pray it works. :) I have scans this week.
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Hi mommacj, I clocked you were on that trial in the trials thread. Welcome! Are you on 10mg of Everolimus? Do let us know how your scans go, although I guess with a trial you have them more frequently. I worry a little bit of the cough I get when I exercise and get the heart rate up, but that could also be healing lungs and it goes away after I do a few big barks.
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