Afinitor/Aromasin
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I scan Tuesday with results next Monday. The muscle, bone, nerve pain have all intensified in the last two weeks and it is driving me insane. I catch an hour of sleep here and there, spend my days staring at the wall or crying, and am on a liquid diet more or less because the pain is too distracting to actually eat and standing that long to cook well… lll call again about it tomorrow and see if they can get me some Valium to at least get through the MRI, but surely it isnt normal to be almost maxing out on OTC painkillers + oral morphine for 'mild joint and bone pain' from exemestane? Last time I ate this many painkillers I was just after diagnosis and before my first radiotherapy. I dont know if I can do another week of this, but something isnt right and I just went back on Everolimus after a week off for antibiotics.
I did two hits of the Tylenol 3 last night and they both crapped out at 4 hours, so I spent two hours staring at the clock and rocking to self soothe.
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Hi Sharware, I went through the URI tests, three courses of antibiotics and a CT scan looking for lung cancer before I figured out whom to contact. Since my PF was caused by radiation it started in the rads field in my middle right lobe and xrays over time showed progressive spread throughout the lung. The local pulmonologist's comment that it didn't follow anatomical boundaries alerted me to contact my RO. My ILD pulmonologist knew it wasn't caused by chemo since that scarring starts in the base of both lungs and has a different pattern. The treatment for both seems to be the same, however.
I also live in a rural area and have to travel 100 miles for bc/pulmo treatment. Salisbury was my home for several years (I've followed the chickens around the world for DH's job) so I know where you're coming from. Routine health care is OK but not so much anything complicated. You would have to make the trip across the Bay Bridge but Johns Hopkins and U of MD Medical Center in Baltimore both have specialty ILD-PF clinics. My pulmonologist did his fellowship at Johns Hopkins. You could call your local pulmo office to try get an appointment faster. Also, you can suggest the aforementioned hospitals at your appointment if they don't know how to proceed.
Hopefully you will get effective treatment and come out of it OK as I did. After all, you need to enjoy the mild weather, easy beach access and crabs that I miss!
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Hi Maggie - thanks for sharing your experience as it should help me find treatment. I’ll keep everyone here posted. So far it seems I’m the same - not better but not worse - on steroids and oxygen. No call from the pulmonologist yet.
Hi Sondra - I am sorry to hear about your pains but exemestane is known for causing what you are feeling. I knew one lady that had to stop it because of the bone and muscle/nerve pains But I know the Everolimus is a wicked drug too. If your MO doesn’t address your suffering, you might want to look for someone else. You are taking a lot of meds for pain. Although I don’t have any answers, I will say some special prayers for you. And hope you feel some relief soon. 🙏 Hugs to you.
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Ok we sorted the pain regimen out yesterday (doing much, much better) but scan today showed quite a bit of lung inflammation sooooo joining the heavy breathers crew. I've got steroids incoming tonight and am off everolimus again for a bit. Amazing to get this despite ping ponging on and off the drug over the last few months.
I guess that explains the breathlessness on exertion and inability to get over the cough. Hope these help so I can maybe sleep decently.
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Sondra….id suggest you do not allow the oncologist to ever put you on everolimus again. This lung issue is nothing to play around with. Mine is not better on oxygen or second round of steroids. Been off everolimus since Dec 20!! My MO said I’m off everolimus for good. Sometimes there can be permanent lung scarring. Be careful. Glad you are feeling better though! Good to hear from you but sorry about the breathing and you have lung inflammation too. 🙏
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I know, Im very nervous about all this and now having to take all these steroids is scary (got a little blue card to remind me to tell health care professionals Ive been on steroids even). She wants to see what the rest of the scan says before deciding if there is a chance for me to go back on 5, but what's the point? Ive barely been on this drug and its already done a number and man you better believe im not willing to sacrifice something like lung capacity for the activities I want to do yet. If we can crank a few months out of Exemestane as a mono-therapy then great, ill roll with that, give me a chance to recover all these issues, but I dunno about Everolimus.
This came out of the blue so quick that I stupidly forgot about NSAIDs and steroids = bad and took two ibuprofen at 430. I called helpline and they think I should be ok with the omeprazole, food in stomach, and taking the first steroids at 10pm or so. Some day I will sleep again, but its not like I've been sleeping well the past few weeks anyway. Bedroom closet needs to be reorganized too :) Sorry, one more edit - im starting at 40mg for the steroids with the -5 weekly taper. Ready to feel the inflammation relief side effect on my hip too!
BTW Shar - I find it really interesting that neither you nor I got mouth sores on this at all but did get the inflammation.
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Ok that went much better than expected (for once). I slept great, or at least for the two hour intervals between bathroom trips, the burbling/crackling seems to have either gone away completely or is almost there, and coughing has gone down. Heart rate is much better this morning and O2 stabilized at 95/96, no wild swings up and down like the last two weeks. Later today I want to give the ol' invalid room a good freshen so we will see what happens to stats then. Otherwise intend to lay low until the weekend, maybe see a friend for coffee nearby.
I do physically feel like I ran a marathon while being beaten with baseball bats, but having some actual motivation again is nice. Oxygen - who knew it was so important?!
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Coughing is much better, and I managed to vacuum the cat hair and dust from under the bed when I flipped the mattress so I like to think that made a bit of difference too. Had the high intensity lung CT today so we will see Monday, but they feel like real lungs again. In other side effect news, Im now on slow release oxy, along with some break through pain topper oxy, and pregbalin for nerve pain, which is kinda working. Im so exhausted after going out, though, that it worries me, though I have to remember that Id been sick for so long that its probably to be expected. Scan results Monday so we'll see what is up.
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Well I crapped out on that drug, didn't work at all but the lung inflammation actually had improved after 4 days on the two different scans. Have massive inflammation in muscles which is the hip problem. I'm moving on to fulvestrant which frankly is a bit of a relief. Even without growth I wouldn't have gone back on everolimus anyway.
How about the rest of you ladies?
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Hey Sondra - I’ve been waiting to give news but none any good yet. I’m still on oxygen 3 ml up from 2 ml and steroids for second round. My primary doc is trying to get me set for a pulmonary function test so I’m waiting for that call today. I see my MO this Thursday and he will most likely set up another lung CT scan. I am worried giving cancer treatment this big a break while waiting for or even if my lungs recover. Don’t want to go there but you know how our minds work. MO says Xeloda is next but I know you failed on that one quickly. I’ll keep you updated. Prayers for us all.
Maggie how are you doing? Hugs.🥰0 -
Hi Sharware, I'm sorry that you haven't experienced improvement. The PFTs set a benchmark but initially didn't seem very useful. Once, however, I briefly passed out from severe coughing during one and the monitor showed that my O2 dropped to 40% before recovering. That explained the couple of falls I had for no obvious reason, one leading to a concussion. My cough was then treated more aggressively so I haven't had the syncope since. See if your MO will order a high resolution chest CT without contrast since this is the standard for diagnosing ILD. Even if the local radiologist doesn't recognize the cause of the findings it can be sent to an expert pulmonary radiologist for a second opinion read.
An MRI for a tear in my right sartorius showed an incidental finding in my left acetabulum marrow which could be caused by dormant bc cells. My MO referred me to two phase 2 clinical trials researching how to prevent recurrence (CLEVER and PALAVY) which rejected me due to the RIPF. Both use everolimus and hydroxycholorquine (black box ILD drugs) so I'm just going to hope for the best. My pulmo remarked that ILD with any cancer puts you in the uncertain realm of lung cancer where the treatment can be more deadly than the disease.
Sonja and everyone else with breathing problems, I hope things are getting better and you are in less pain. If your lungs clear the DILD it is possible that the next drug will be OK. You really have to be on guard, though. There is a handy French website and app that alerts you to possible DILD and its likelihood. It's like my companion bible since I consult it with any doctor before taking a med. Often there is an alternate drug not on the particular category list you are trying to avoid (the "I" SEs are the ones I watch.) Right now AIs, CDK inhibitors and SERDs are all I'd consider.
https://www.pneumotox.com/drug/index/
(Sorry, I can't make it live.)
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Thanks for all that info Maggie, lots of experience!
I was at the hospital today for the first fulvestrant injections and was weighed - i lost 13.5 lbs on e/e, and am back to my prediagnosis weight. My O2 sat was a solid 97%, although I was running a slight temp and high blood pressure and heart rate. Probably unsurprising given all the opiates, steroids, physical strain, pain, and complete lack of sleep currently living with. I also made a pharmacy pit stop to dump off all the boxes of everolimus so I never have to see that crap ever again. Felt therapeutic for sure.
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PET-CT showed almost complete resolution of the lung inflammation so I really dodged a bullet and got lucky with that outcome (for once!) Is anyone out there succeeding on this drug?
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Hello ladies - I have no good news yet. My lungs are still showing glass opacities with no resolution. Steroids are done and two rounds have made no lung improvement. Just 20 lbs in gained weight. I have another CT without contrast on April 3. Still on oxygen with elevated heart rate. This may never improve. Still haven’t started new Xeloda cancer treatment and mixed response PET scan shows some progression in spine - bones only.The pulmonary function test said I had acute respiratory failure. Now insurance doesn’t like that I’m going to the hospital for a comparison CT scan at the pulmonologist’s request. They want me to go to a scan facility but pulmonologist wanted the same scan machine.
Glad to know that some are doing better. I’m open to any suggestions how to make this better.
Sharware ♥️0 -
Hi sharware, I'm sorry the GGOs haven't resolved and your PFT numbers are not good. I was on oral steroids and O2 for several months with about 40% lung function. The consolidation eventually cleared and about 67% of my lungs now work which puts me up in the 80% range for PFTs; I no longer need oxygen. I take high dose oral inhaled steroids (fluticasone propionate 440mg twice a day) to stop the cough and hopefully prevent the pulmonary fibrosis from progressing. It is safer since it targets just the lungs but may/may not be a good substitute for oral meds in your case where the alveoli are filled with fluid rather than scarred.
One of the still "taboo" topics in breast cancer discussions is the possibility that treatment toxicity can wipe you out faster than the disease, probably because it is not common and is something nobody wants to think about. When I asked my pulmonologist if my lungs would stop deteriorating I got a version of the "no crystal ball" speech. The best phone call of my life came from him about 4 months later telling me he now thought I would see my next birthday. I had never imagined that treatment for stage 2 bc could kill you. From my research on this topic once you hit grade 3/4 ILD AEs there is about a 50% chance you will stabilize. I am living proof that this can happen and am rooting for you.
As far as progression goes there are very few bc drugs that never cause ILD. Everolimus is a 5* drug on pneumotox.com (the worst) while capecitabine is a 1*. My pulmonologist said that once your lungs are compromised any stars are a problem. The only safe drugs as far as I can tell are SERDs. Have you been tested for mutations for which some of the newer SERDs are a possibility? SBRT is another option if the radiation can be kept far away from your lungs. I'm not an expert on appropriate mbc treatments; Cure-ious on the Clinical Trial thread and others know a great deal about this and might be able to give you advice. Clinical trials won't take you with current or former high grade ILD, however.
Have a good holiday weekend; I hope and pray you turn the corner.
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Oh Shar, I have no answers other than Im so sorry to read that you are still dealing with the side/after effects of that awful drug. And here it had been working for you too the first month or two! I suppose all you can do is wake up every day, put one foot in front of the other, and keep going. I wonder what they do for long run COVID patients who still have ground glass opacities, surely they must receive some sort of treatment? That may be worth looking in to.
Maggie you are absolutely right, and I have seen more than my share of ladies on here and other forums pass suddenly from side effects of these powerful drugs. Right now I have considerable foot and leg edema caused by a rapid increase in pregabalin, which was prescribed for the nerve pain they think I should have, but don't. I was not expecting to be in the 15% which get that side effect, but its impacting other issues and impacting quality of life. Everything has a side effect, some a lot worse than others, and I think often we are pressured into signing off on drugs to take because the alternative is IV chemo or whatever. You never think its going to be you, right?
FYI, but Tina2 who was in our treatment cohort also failed the drug combo, so frankly I want to meet the few women for whom this drug actually works longer than 2 months or so.
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Hi, after just a cycle of Fulvestrant alone, I'm going to switch to exemestane+everolimus, changing hospital and MO, as in my previous hospital nobody was really taking care of me well, always making mistakes, never advise me of anything, etc...
I'm nervous to change city, but happy to have a new MO. The new hospital will be further too, but I think is worth to change.
I'm reading on this post that many people had severe SE on this combo...any suggestion before I start? Anything I need to know, to monitor, to be carefull at?
I'm concerned...
And also, did somebody had a good/long response to this combination? Did somebody had very few SE?
Thank you in advance, I'm so scared!!
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Hi @amel_83, I have never taken afinitor; my only connection with this thread is I have dealt with grade 3/4 pneumonitis (from radiation) which can happen with any mTOR inhibitor. Even though Everolimus has been used for over 10 years it is hard to find data involving enough patients to come up with what I would regard as reliable statistics. Most studies deal with a small data population (30 - 150 patients) and the drug is also used for neuroendocrine and renal cell carcinoma tumors so research is not breast cancer specific. All drugs have SEs which can be troublesome but what really concerns me are the adverse effects which can cause death. From what I have read anywhere from 19% to 56% of patients develop pneumonitis while taking afinitor. It can be treated with corticosteroids but sometimes they don't work. In a study of 169 patients with neuroendocrine tumors in Brazil and the UK taking afinitor 21.6% developed gr 3/4 pneumonitis and another 3.6 % were gr 5 (death.) Older age, female gender, previous smoking and having other pulmonary conditions made this more likely.
Paradoxically, those who developed mild pneumonitis (gr 1/2) had a better response to this drug than those who didn't. Reading through this thread should give you some insight into what others experienced.
I would discuss this with your new MO. I'm sure afinitor has its place in prolonging survival so I wouldn't reject it out of hand but I would be keeping an eye out for any side effects such as cough, SOB and O2 levels that drop on exertion (I am never without my pulse oximeter.) You need to be watching out for drug induced ILD which causes multiple radiological patterns on chest CT (NSIP, Organizing Pneumonia, tree-in-bud.) In my experience there are many radiologists and pulmonologists who don't know about ILD since it is rare. I had to figure out what was wrong by googling the radiologist's description of my lungs and then contacting my RO who looked at the CT and got me a stat appointment with an ILD specialty pulmonologist. Even then there was no guarantee that I would make it. You might never need it but I would research ILD specialty pulmonologists in advance so that you could act quickly if necessary. I don't know where in Italy you live but Ospedale San Raffaele in Milano has a specialty ILD clinic.
mTOR inhibitors can do you in but so does MBC. Unfortunately, it's all an unpredictable balancing act over which you have little control. Good luck with your next treatment.
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Well I had progression so I guess I'm being changed from Verzenio to Afinitor/ exemestane. I'm nervous about the side effects. It's very discouraging that I couldn't tolerate Ibrance or higher doses of Verzenio without my ANC tanking and now having more progression including to the liver. At what point do you decide you're done being tortured with these things? I'l guess I'm more afraid of just letting the cancer decide the torture, chewing more bones in half. This disease is horrible.
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@maggie15 thank you very much for the important info, I will check everything online to be prepared. And I'm only about 3 hours from S. Raffaele hospital! So I will immediately contact them and go there if I need.
Thank you very much, those info can be life saving!! I will for sure mention this to my new MO tomorrow.
And sorry you went through this strong pneumonitis, musted be very awful to deal with.
@mkestrel sorry for your trouble with Verzenio. Let's hope we will last long on our new therapy, without be too beaten up! Best wishes!
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Hi, today will be my actual first day of this combo meds...or tomorrow morning...
Should I take the 2 pills Eve+Exe at morning or at night? They told me is the same...
Somebody have an opinion on when it is better? It is better with food or whitout?
Thank you
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Hi
Anybody here still on this combination?
Can you tell me how they make you feel, and did you loose your hair on it?
I have hair longer and shiner I haver had...and i know ismot the end of the world...but I like them!
Other than that?
Do you take them at night or morning?
I'm a week on and so far so good!0 -
Hi amel,
I did not experience hair loss on this treatment, and I don't think I've seen any other women who have. Weight loss though, that was a different story, mostly due to fatigue, aches and pains and appetite loss.
I took mine at night, not sure its much difference when you take it really.
It takes about three weeks supposedly for this drug to reach a constant level in your blood, so that is when you want to be paying attention for coughs, etc. If anything its the pneumonitis to be aware of with this drug - its very powerful and works great on other cancers, I think they were trying too hard to make it happen for breast!
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@sondraf thank you very much for your response, I will keep an eye on that, as I'm about in the 3rd week, and the pulmonary SE really concern me.
And so, you think it work better on other cancers, and not super well, or not too effective, on breast cancer? I saw you only did it for 4 months...
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Just took my first dose of this big horse pill...will see how it goes
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Good luck! I hope it will work and have very little SE.
I'm in my third week and for now everything is allright.
My onco just told me to absolutely use the special mouth wash 2/3 time a day to prevent mouth infections. He say is the most common of the sides effect.
About all the other sides effect he tranquillized me...I hope he is right.
I also got diarrhea, but I'm not sure if it still there from the Capecitabine, or it is due this new medicines...
Anyways let's hope for the best 💙
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I had a great response the first month or two but scans showed after four the pneumonitis and that it had stopped working at any rate. I had pneumonitis so bad there was no way I could have gone back on the drug, and frankly I was at thr point of telling onc i wanted off it for quality of life purposes as I felt so bad.
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Ok hopefully I'm not going to get that, I'm terrified.
Thanks for answering, I'm gathering all the info i can, as online no much is reported...
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Seems I'm already getting mouth sores. I thought I had sunburned my lips but it got more painful today and started a blister so I figured out it is from the everolimus. Feels better after dexamethasone rinse trying to soak my lip in it. I have had insomnia possibly from exemestane and now burning lips keeping me awake.
I hope you are doing ok, amel 83
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