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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