Afinitor/Aromasin
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Hi Sondraf, I am on 10 mg of Everolimus. I had my first CT yesterday scans since starting the ARV-471/ Everolimus trial. I am so thrilled that I finally got a stable scan!!!! I was diagnosed with mets in September of 2022 and this is my third line of treatment. I started with Ibrance/Faslodex which gave a mixed response… bones were better but liver progressed with several new tumors. Then I went to Enhertu which was really tough for me to tolerate and I had progression on that as well. I started the trial at UCLA the end of September and this was my first 8 week scan. My 2 target liver lesions shrank by 23% and my bones are stable. My mediastinal and hilar lymph nodes have improved since diagnosis. No new lesions praise the Lord! The combo has been much easier for me to tolerate than Enhertu except I have a nagging cough which is a side effect of the Everolimus. I had a rash for a little bit but that has resolved. And my taste buds are off which is from the Everolimus as well. There were no signs of pneumonitis on my scans but we are monitoring closely. I am thankful and praying to get a good run but at this point I am just happy for my first good scan!! :)
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Ah congrats for a stable scan, how exciting :) ! Im really hoping I will get one in early Feb when I next scan as its been a reeaallly long slow progression from this time last year and I haven't heard 'stable' in some time :/ They are going to titrate up to 7.5 on 1 December and then to 10 a few days after Christmas (my request because I dont want to risk a hospital stay over the holidays here; its like Hotel California). So far its pretty good, but I also have the off taste buds and an issue with feeling hungry/food interest at any time that isnt 11-2 pm. But the pills are easy to take and I just take them on my 12 hour blood thinner schedule. Even had a smidge of red wine on our mini vacation and it was ok (I want to say it was maybe four shot glasses worth, tops).
I was reading a study yesterday about how people who lost weight in the first three months on Everolimus had a statistically significant improved PFS compared to those who didn't. I read it on my phone so I may need to dig it back out.
I hope you continue to do well and have a great holiday after those scan results!
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Thank you so much Sondraf! I am glad it has been manageable for you as well. I hope you (and everyone) have a nice Thanksgiving as well! If you come across the article I’d love to read it. Anything that helps PFS is good news. I am glad you were able to enjoy a little wine. Sometimes it’s the little things in life. :)
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Hello all! Checking in with good news so far. Two weeks in and bloodwork looks better then when I was on Ibrance. I’ll get tumor markers in a couple days and will let you know how those are doing. I see my MO this afternoon for a checkup. Still have my taste, swishing and spitting the mouthwash, and slowly getting over pain from radiation. It sure is taking its time. My markers had gone up to 145 last month, so hoping for a decrease. How are the rest of you doing? Have not seen any posts for awhile other than on the Facebook page. I pray for all of us. 🙏
p.s.editing to add markers….now down to 98. We won’t scan again until Feb. 2024 due to radiation subsiding first. He said I’m doing very well and like Sondra said earlier, he confirmed that now is the time for most side effects to raise their heads. But he said I could cut back to once a day on swishing and spitting!
Sharware1 -
That's great shar!
My onc doesn't pull tumor markers every month (no idea why), so we are going by 77 as my last pull at the end of Xeloda (I think I started X in the high 80s/low 90s), which was end of October. Unfortunately I got whatever awful upper respiratory thing is going around (this isnt Covid, lord I wish it were) and so I am holding for a week on the Everolimus while we see what these antibiotics do for my ear infection(s) and if I need any further investigations/antibacterial drugs for this cough (I dont think so, just sort out the mess in my sinuses!). Will totally be masking here there and everywhere for the rest of the winter, good god is it bad out there.
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Hello, I’ve been on Afinitor (with ARV-471 in a clinical trial) since the end of September and my first scans were stable. Does anyone else have taste issues? Nothing really tastes good right now and I’m wondering if anyone has had any suggestions from their doctor? I see my trial doctor in two weeks but most food tastes just bad. It’s not the end of the world but it’s definitely a bummer and it’s effecting me getting good balanced nutrition. Thanks for any insight.
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It has for me. Some things either have no taste, or certain herbs/spices now taste metallic to me. Not awful enough that I am put off food (drug decreases my appetite for sure) but I have to call in husband now when I am cooking to double check seasonings :)
Went back on for four days and now back off for a week as the first bunch of antibiotics didn't clear the sinus infection. Ive noticed I seem to be retaining water on this drug though, anyone had that?
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My trial doctor took me off Afinitor permanently today. I will stay on ARV-471 and hopefully it continues to keep me stable. My CT on Friday showed ground glass opacities/pneumonitis. I hope it resolves quickly but that explains my cough and shortness of breath. I am hoping I can still stay stable on the monotherapy because this is the only drug combo out of three lines that I have tried that has given me any stable results. Good luck to everyone on the drug praying you’ll have great results. 🙏💕
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Hello all - I will be leaving this treatment as my lungs became inflamed and I was short of breath. Now on steroids, off exemestane and everolimus. Plus I’m on oxygen too for at least two weeks. Cats are afraid of noise generated by this thing (it’s the size of a small pilot suitcase) and the long oxygen cord I’m dragging around the home. I had such high hopes for this treatment. Just got out of the hospital after my routine visit to main oncologist this past week sent me to the ER for scans revealing no blood clots but inflammation galore in both lungs. I was treated initially for pneumonia with IV antibiotics just in case. Last place you want to be anytime is the hospital….holidays plus Covid patients too now…on the rise. I never got mouth sores but that is moot now. Any questions I will be glad to answer. Will check in on you to see how you are doing. I don’t know next line of treatment but my oncologist said let’s get this lung problem addressed first and he will see me on January 4th….will rescan…..then discuss what’s next. I’ll keep you posted with updates. Be careful if you are short of breath on everolimus. Get checked out quickly. Merry Christmas to you and I pray for a happy new year for all. Hugs.
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ah shar, that sucks a lot. How fast did it come on? Was it gradual?
I've been having what feels like musculoskeletal discomfort across my chest but I also limp heavily and use a cane and am (still) getting over an upper respiratory infection. Onc checked my lungs two weeks ago with stethascope and said they were 'clear as a bell' so Im hoping its nothing. Or at least it can wait four days over the holidays :/
I hope you can get the inflammation under control and your next line works well!
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Hi Sondra it sure sucks. Seems the real shortness of breath came on about 3 days before my seeing doctor this Wednesday. Oxygen level was too low in his office so he sent me straight to ER for CT scan. I think it did take a week before I felt like breathing was becoming difficult which means I had been on everolimus around a month. I am bummed for sure. Glad we caught it fairly quickly. I will keep you posted and hope you feel better soon and can enjoy the holidays. Thanks for all your good wishes too!!!
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Sharware I’m so sorry. I am off Everolimus too as of last week. My scan Friday showed ground glass opacities in both lungs and every respiratory virus panel was negative. My trail doctor said definitely Everolimus. How did you get oxygen? I’m sitting here in the ER. I am ok during the day. 93% but at night I struggle with 88-90. And it drops during exertion as in just walking about half of the time. They gave me a breathing treatment yesterday but no oxygen. They said I need to meet criteria? I get winded walking across the room and at night and I know I can’t keep going without sleep because my oxygen is low. I’m super sorry you are going through this too. I kept bringing up my cough but… 🤷♀️
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Sharware how are the steroids? Do you know how long you’ll have to take them?
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Hi momma - I am sorry to hear about your having problems too - I’ll be on steroids for two weeks and just on my second night tonight of 60 Mg then down to 50 Mg after a week for yet one more week. I don’t know about oxygen criteria. They put me on it in ER after my oxygen was 80 just walking even with my cane and hard gasping breathing on my part. They sent me home on it and will be on it for 24/7 for the two weeks and then see if scan is better. I’m okay sitting at 95 percent oxygen but exerting is hard to breath. The therapist tech said we need to be between 90 to 100 percent oxygen to be in the normal range when walking. I sure hope you are able to get the oxygen approved. It helps! Prayers for us and I don’t know my next treatment but I’ll let you know. Please do the same and good luck. Hugs.🥰
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Thank you Sharware. I wound up in the hospital overnight. I couldn’t keep my O2 in the 90’s even at rest. I’m on day 4 of steroids and they sent me home with oxygen. I feel a much better now that I can breathe. I see a specialist tomorrow and my oncologist on Wednesday. I’m feeling better at rest for sure. But anytime I stand or exert myself my O2 dips. So I guess it will just take some time. It’s frustrating but I’m happy to at least be moving in the right direction. I hope you are beginning to recover. I prayed for your recovery today. I will keep you posted for sure. Hope everyone had a nice New Year’s Eve.
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Hi momma - I just got back from MO and he says I will continue on steroids for another 3 weeks plus supplemental oxygen. Glad to know you are breathing easier too now. My next and 3rd line of treatment will be Xeloda after my lungs recover. I’ll scan again in a month after prednisone is finished to make sure lungs are clear before starting Xeloda. MO said we need to “wean” off steroids. So this is taking longer than I thought. Hope we all do better in the new year. My appetite is strong and I’m eating everything in sight. Ha!! My oxygen level is 85 walking around without supplemental so I need to recover more. It’s 95 sitting so improving slowly.
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Sharware I’m glad you are feeling better. I am too. I have scans this week so I’ll see if the ARV-471 monotherapy is enough which I am not sure it will be. I am weaning off the oxygen. I finished the steroid pack and I have more if I need them. My oncologist said maybe we would consider Capivasertib. I am glad you are eating well. I’m starting to get my appetite back but my taste is still off a little. Praying we can put this behind us soon.
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Well my tumor markers are down approximately 25% and that was with titrating up and being off therapy for 12 days due to sinus infection. I think the everolimus is ok (except for a lot of bloody snot) but the exemestane is just working me over something fierce, we are WAY beyond 'have you tried yoga?' on the side effect scale. I'm not sure if I can even swap back to letrozole as I failed that + Lynparza last year. Going to try bone broth (for joints, gut health) and see if I can try a different brand; I've only been issued Aromasin and I struggled with Femara the one month I got it and found a generic much more tolerable.
I go on to 10 later this week as MO is concerned about my lack of mouth sores suggesting I need a bit more dosage. And I scan end of the month, but feeling positive about that at least. If we can get the exemestane sorted this would be doable!
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Well everybody…I think I’m in trouble with my lung inflammation. I’m titrating down on steroids from 60 mg a few weeks ago to 20 mg this week and my oxygen level has gone down into the 70s without oxygen supplementation. It had been at 80 when the MO put me in the hospital and did scans. Anyone else have permanent damage from the Affinitor/Everolimus?? How are you doing now, momma? I hope much better. I’m afraid when I see my MO next week, he will say sorry. Next up is Xeloda for me but not sure now when that will start. Thanks everyone. I pray for us each day. Hugs.
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Hi Sharware, I’m so sorry to hear the titrating has been difficult. I have read it can take time but how long I don’t know. Have you been referred to a pulmonologist? I am seeing one on Monday. I am doing better and was able to lower the 02 and steroids and I’m off them now although I still have the oxygen as needed. I’ve seen my O2 in the high 80’s in the evening with exertion after resting but it recovers fairly quickly. I get winded but I haven’t been doing much so I think it will just take time. I had my scans last Friday and my lungs still show ground glass opacities so the pneumonitis has improved but it is still there. But my scans were stable other than that so the ARV seems to be working without the Afinitor because I’ve been off it over a month. So I was very happy about that. There was still ground glass on the scans and a few lung nodules which they are thinking are related to the pneumonitis. My trial doctor referred me to pulmonology rather than starting an another new course of steroids. I see her tomorrow so I will have more information then and I’ll share what I find out. I just prayed for you and thank you for so much for praying. 🙏
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Hi momma…..I have not seen a pulmonologist yet or been referred to one. I see my MO next Thursday and will see what he says about all this. I’m worried my lungs are not recovering. My big fear is permanent damage but will know more when they scan again. I think that will be next week too. I was doing better on high dose steroids. When I exert myself without supplemental oxygen (like showering) my oxygen level dips into 70s now instead of 80s. I’m up to 3 ml of supplemental oxygen now instead of 2 ml. I hope you are right about this just taking awhile. Thanks for praying for me. I know it can only help. 🙏 Hopefully you will continue doing well and I’ll catch up! I look forward to hearing about your appointment on Monday with the pulmonologist- good luck!
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Thank you Sharware. I will keep praying. I am a firm believer in the power of prayer. Thank you for praying as well. I will keep you posted with what I find out. I know that I was off the Afinitor for two weeks and my lungs kept getting worse before they finally started getting better with oxygen and steroids. I stopped the Afinitor around the 11th of December and still got worse and wound up in the hospital on the 26th so the effects may have been delayed or the drug took awhile to exit my system? I’m not sure but I do plan on asking my dad oncologist and the pulmonologist. I’m not 100% yet my lungs are aggravated easily. But I am much better so I will keep praying for the same for you. I’ll let you know what I find out. Blessings 💕
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How are you ladies doing? I had a kerfuffle last week over suspected chest infection and got a chest xray which is fine, but now Im on a hold again due to being on antibiotics again. I feel like a truck ran me over from the fatigue and body pain. MO was trying to be encouraging that my markers took another nose dive but Im like lady, maybe its from the exemestane! They've got me on Tylenol 3 now which yay but man does that make me a zombie and constipated.
I hope you both keep on the long road to recovery and keep the faith. Its so so hard to keep pulling yourself back up after so many set backs and feeling terrible.
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Hi Sondra….I am struggling with my lung inflammation. I see my MO this Thursday and he will most likely refer me to a pulmonologist. This just isn’t getting better and I take my last steroid of 10 mg tonight down from 60 mg. I’m waiting to hear from momma to see how she is doing after seeing a pulmonologist yesterday. So….momma I hope things are much better for you. I’ll keep everyone posted. I just don’t know why this was getting better and now it’s worse. I keep praying for us. ❤️
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Hi Sharware and Sondraf, I’m so sorry this has been difficult for us with lung issues/inflammation. I saw the pulmonologist yesterday and he did say that things looked better but my scan was still showing ground glass opacities. So he wants me to do a chest xray and repeat in a month to see progress and if it’s not clear to consider a broncoscopy to rule out any additional infection. It most likely will just take a little more time. But I feel a lot better and I’m off the oxygen. I just tire and get winded easier. My oncologist said there have been some issues of relapse but I feel ok. Sharware I hope they can give you some answers and they refer you to a pulmonologist. I will keep praying for healing. I hope you are starting to feel better Sondraf. Keep me posted and I’ll keep praying.
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Hi momma and Sondra….I saw my MO today and he’s keeping me on oxygen plus restarting steroids again….plus referred me to a pulmonologist. I’m waiting for the pulmonologist’s office to call now to set up a time. I’ll keep you posted. So far this isn’t getting better and my lungs are not responding like before. When I started titrating down, the lungs got worse. I am glad you are better momma. Hope I get better soon too. ❤️ Prayers for all of us!
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Sharware I will definitely keep praying and I’m glad that your oncologist is being proactive with the pulmonologist and steroids. I hope the pulmonologist can see you soon and you can get some answers. Yes, please keep me posted and I will do the same. Are you on the same amount of oxygen or have you been able to lower it at all? Did they do another CT or chest xray yet? How long have you been off Afinitor? I was surprised that I was off of it for 2 weeks and it continued to get worse before getting better. I am praying for improvement and relief for you soon. 🙏💕
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Hi momma - The pulmonologist has not called to set up my appointment nor has he returned my call. I’m especially disappointed because my oxygen level is now up at 3 ml up from 2 ml. I’m also back on steroids starting at 50 mg and will start titrating down to 40, 30, 20, 10 to 5 mg after a few weeks. In the meantime nothing is being done systemically for my stage 4 breast cancer that’s spread into my bones. And the oncologist says my upper lungs both sides sound okay but the lower lobes on both sides “crackle” but no scans other than the one I had on Dec 20 in the hospital have been done. I have not gotten better yet from this relapse. Oncologist said this happens rarely. But I’m so happy you are on the mend. That’s good news!! I’ll keep you updated. Please do pray for us. Thanks 🙏 I will do the same.
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sharware, Apologies for barging in here but I couldn’t scroll past bibasilar pulmonary non-infectious crackles without suggesting you ask a doctor to investigate whether you might have drug induced pulmonary fibrosis. It’s rare and unfamiliar to most doctors but a peer consult with an ILD pulmonologist or referencing UpToDate could guide treatment. HRCT (high resolution without contrast) is the standard imaging for diagnosis. A long course of prednisone is the first step. CellCept is a second line med and Ofev can be prescribed to slow the progressive scarring if the other meds don’t stop it.
I found myself in a similar situation when my PCP, a radiologist and a pulmonologist told me that my debilitating lung problem was inflammatory but couldn't identify the cause. I used the radiological descriptions on my CT report to figure out it might be radiation induced pulmonary fibrosis. I sent a copy of the CT to my RO who made the diagnosis from the scarring pattern and got me a stat appointment with an ILD specialty pulmonologist. Four months later I was off oxygen, on inhaled rather than systemic steroids and told I would see my next birthday. I lost 40% of my lung function but can breathe with what still works.
This may not be your problem but DIPF is often a progression from pneumonitis and an AE of everolimus. I hope you get answers and treatment that helps.
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Thank you, Maggie for jumping in to let me know you recovered from your similar to mine ordeal! MY MO has determined this is everolimus induced from the CT with and without contrast in December. He first looked for a pulmonary embolism and they tested for Covid, flu, pneumonia too. All negative. I’m still waiting for the pulmonologist to call, even though my oncologist ordered an appointment stat as well. They move like turtles on the eastern shore of Maryland. We seem to be lacking in good doctors. And you are right- not too many know about this issue. I’ll keep everyone posted here about my situation but it is very helpful to hear from you. I wanted to thank you for your insight and taking time to post. ❤️
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