Afinitor/Aromasin
Comments
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Good news Lynn. Nkb, I will be praying for your PET scan.
I am in the process of moving out of state so my cancer meds are sort of on hold until I meet my new cancer drs/team. We are trying to get moved as fast as possible (from California to Colorado) but Covid has slowed the pulmonary testing I need (and everything else) before I can leave. Hopefully it is only a couple more weeks. The moving van and our daughter have already gone. My DH and I will stay here in town until I am released. In the meantime I am just on Aromison but in the past anti-hormonals have kept any progression to a very minimal level for me. I am also still on the steroids from my allergic reaction to Affinitor and my current oncologist thinks I should let things continue to heal before doing anything aggressive--if I even need it as my scans were near clear. I have no more oral options left. I am a little nervous about it, but I just got off oxygen so I think she is right. It will probably be a good thing to get a new team with a fresh eye once I am moved. Chris
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Good luck with the quick move, IntoLight! And hoping that you get a great new onc in Colorado!
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Well, folks, I'm officially now in your ranks. I take my 6th dose of Afinitor + Aromasin this AM. So far, no side effects to report. How long did it take for yours to set in, if you have any to report?
I do wish that my HNF would resolve itself, as I though one positive thing would be being rid of that. So far, after being off of Xeloda for a week and then on AA for a week, all looks much the same re HNF.
I look forward, if that makes the remotest sense, to interacting with all of you, hopefully for a long time on this string.
Sending hugs and wishes for good health-
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Lynn- I saw a friend who has been off Xeloda for 2 weeks and her hands are getting better (they still looked pretty bad to me). I think I felt tired the first month, but, many SE from Ibrance got better over time- (anemia, leg cramps, neuropathy, thin hair) I think I had nail issues and painted them with a clear nail hardener as they snagged on things, got some scalp sores and had swollen feet. no mouth sores. my blood sugar went up a bit- not into abnormal range and cholesterol went up, but, not to scary levels. otherwise lab was good.
I think I missed the part where someone decided that you needed to switch- I thought your MO had decided you were pretty well controlled except the one tiny bone met and the skin- what made them change their minds? I am curious if they mentioned IV chemo to you ?
Oops- Lynn I see you answered that on the Xeloda thread. what happened with your labs?
I am still in limbo land- getting zapped and looking into trials which I probably won't qualify for since bone only.
How are you doing Intothelight?
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Joyner, my HnF did resolve after leaving Xeloda while on AA. I changed in September and it took a couple of months. I do still have very dry feet but they are not cracking or painful. My fingernails are very thin but i hope that resolves once they grow out. Now that I am off Affinitor my SEs are the result of being only on Aromasin-the no hormone kind. I am still waiting the results of the PET scan from Monday.
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Nkb I am doing OK. The Opthomologist here was able to get me on the schedule for Cataract surgery on the 8th but I had to finagle the pulmonology testing scheduled that same day to make it all work. He bypassed a lot of people in line ahead of me to do the surgery but felt justified. If all goes well I will finally be able to fly to Colorado Springs on the 12th and join the rest of my family. My DH and I have been hunkered down in our empty condo trying to get me healed and able to fly since Jan 7th. We don't go out unless necessary avoiding Covid but we both still ended up with that cold that is going around. We are fine now.
Since I am not on any oral chemo I have been concentrating on my lungs healing and losing weight. Both are getting done. Thanks for asking.
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Folks, I am on AA (three weeks) and Dexamethasone 10 ml 4x day. Some of you have mentioned using 2ce (of the Dexa?). Is that a measurement? What does that mean? I can feel the sores lurking, and when I use the mouthwash, they appear to recede, so far. The lurking ones move around: gums, edge of tongue, etc.
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Joyner- mine was 10ml four times per day also. I never got sores,but occasionally felt one might come and I just swished some baking soda and water in betwee and they never came
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I'll try that....thanks! I have one lurking on the side of my tongue, and I want to try to squash it.
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Into light - hope your scans went well! Is the recommendation to move from Afinitor because of the pneumonia?
Seems like our immune system is really compromised with this drug. I have been sick 3 times since Jan and have been really careful because of Covid!
NKB - thank you for posting your experience with this combo! How is the trial search going? I plan on doing the same once AA quits working for me.
Joyner - I got mouth sores about a month after starting AA. I used the Dexamethasone and in 3 days, they were gone. I was able to eat again on Thanksgiving day! The silver lining was that while I was not really able to eat, I lost 5 lbs just before going to Hawaii!!
Since then whenever I feel one coming on I put Greek Yogurt on it a few times per day and that has worked for me. Seems like any brand works it just needs to be plain with no fruit.
I am wondering about head sores. I have had a few but they seem to be getting worse. Anyone deal with that with any success?
Thank you all for sharing your experience and insights.
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Perky, I meet with my new oncologist on Friday so until then I have no idea what I will be doing. Yes, I had to drop AA but I am still on Aromasin until my new oncologist comes up with something else. I am having constant diarrhea though so I have no idea what is happening and whether it is cancer related or not. Preliminary blood and stool tests show nothing wrong. I am trying to get an appointment with a gastereonterologist to figure it all out.
Yes the dexamethasone helped me when I had mouth sores and Greek yogurt was my staple. Now that I am off the Affinitor I have no problem. A warm salt water rinse sometimes helps when my mouth doesn't feel right.
Chris
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Chris - Thank you! Sorry to hear about the diarrhea. That can be awful, and keep one close to home! I hope it resolves soon or they figure out what is causing it!
Wondering if it would make sense to go back to the Afinitor since the pneumonia has cleared? Seems like it was working?
Hugs,
Allison
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Perky- I am glad that you got the mouth sores under control! I had head sores also- but, so minor- I didn't really do anything- I do have some actinic keratitis (pre-skin cancer) on my scalp that I get frozen every so often. My nails split and got caught on things and I used a nail hardener polish to manage.
I am still on the Xeloda for another month or two. Truth be told from extensive research and talking to my MO and the UCSF MO I get 2nd opinions from- there are NO trials for bone only. some say they are open to it- but, in reality- NO. so I am changing to Doxil when I get back from my trip. the UCSF doctor recommended it without knowing what my MO thought, and once again she totally agrees with my MO which is comforting- still changing to IV chemo seems like a big leap- although perhaps before the next switch some wonderful SERD, or CERCE or ADC will be approved and available.
Chris- interested in what your new MO thinks.
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Hi All. My oncologist wants me to try Faslodex and Verzenio since I haven't been on them yet. She said she has had some success with patients who have already been on Ibrance and Femara in the past. (Anyone here done this?) She said she will watch close and I already have my next scan scheduled to check for progress. I am willing to try it as my next step is IV chemo. I had my first Faslodex shots yesterday (with my Zometa infusion) so we shall see. I feel pretty good today so I am thankful for that. We are waiting to start the Verzenio until after my gastroenterology appointment Monday because of my gut issues but they have quieted and she already prescribed the Loperimide to help.
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Intolight- That sounds promising! take a look on the ibrance thread. I even think people have gone from femera to faslodex while keeping the ibrance. Though moving to Verenzio seems like a good idea. Good luck....hope your get a long run!!
NKB - that is so disappointing! I am also bone only so far no good place for a biopsy. My markers are going up so next step will be a PET. If there is progression, I am hoping for a trial. Just now starting a deep dive hoping to find something.
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Perky- what about Xeloda
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nkb - sorry about the delayed response! Hard ti find this string!!
We decided to drop aromasin and add Tamoxfin as I have the ESR1 mutation which i understand causes AIs to not work well. Markers are still going up after a month .... Hopefully that will change! But I think my next step will be to try Verzenio alone before going to Xeloda.
Wonder if there would be any benefit in doing Xeloda then Verzenio? I am still bone only and though it seems like i have quite a few spots Oncologists say I have a relatively low disease burden.
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Perky- I hope you get more time on Afinitor! I went to Xeloda after failing Ibrance and then Afinitor- but, at the time it was not thought that you could try another CDK4/6 inhibitor after failing one- now more people seem to be doing that.
I went to Xeloda and am still on it as my progression is very minimal. I would like to try Verzenio some day, esp with a new oral SERD or other stronger anti-estrogen if it gets approved. Being bone only also- I do not qualify for any trials.
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nkb, I have just completed four weeks on Verzenio. My body seems to be managing the side effects just fine although I do still have good and bad days. My oncologist told me Friday she is pleased with my lab results. I still have plenty of fatigue although if I don't overdo it I can manage fine. I would love to be more active but one day at a time.
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Intothelight- yes, I hope that the fatigue gets better- I have always found it to be worse the first few months of a new treatment and then my body seems to adjust. So glad that your labs are good!
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Intolight - yes, yay that labs are positive! Info understand Verzenio is stronger than Ibrance. Hopefully your body will adjust and the fatigue is not so noticable.
You probably have gotten a lot of advice for!the Faslodex shots. But I found a good massage therapist is invaluable!! Hope you get a good, long run! They both can be great treatments!
NKB - yes, would love to add a hormone blocker to the Verzenio. Onc advised against Tamoxfin as the SE's would likely be a lot. Hopefully one of these SERDs or other will be an option!
For trials, I did not find anything as well. The Destiny06 looked possible but I understand Xeloda can be easier to tolerate over Enhertu so I would probably just go with xeloda first. Are you Her2 low? Guessing itnwill get FDA approval at some point soon-ish?
Looks like our therapies have a similar path. I did have a small progression at 3 yrs with ibrance but we radiated those spots and I got another year!
Afinitor has been relatively easy. A number of bouts with mouth sores and mild head sores. More fatigue then I remember on Ibrance but other than that okay.
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Perky- I am Her 2 low (2+). I discussed Destiny with my UCSF MO about 18 months ago - she thought they might take me- but, you needed two biopsies for Destiny and she wasn’t sure they would take bone biopsies. Enhertu has a lot more SEs than Xeloda and you lose your hair, its an infusion. I want to save it til I am much sicker-(when it gets approved) - will see how much more time I can eke out of Xeloda.
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nkb, I got almost 3 years out of Xeloda with only HNF as real SE. A good run.
As you may recall, I have the ESR1 mutation, too, but my MSK onc recommended my staying on Afinitor and Aromasin. Started in January. So far, so good....
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Lynn - fingers crossed! It has been pretty tolerable!
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Hi,
I have not posted to this thread ever and it’s been years since I posted anything…
I just read all the posts from 2022 then nothing …
Not sure how to work through this blog..been too long…
Anyhow , I need help / advice
I am ER + HER 2 -
first diagnosis 2007 …two + nodes, mastectomy, radiation and Chemo infusion, arimadex x5 years2103 Mets to liver, TM 2900
Xeloda x5 yr, then Ibrance and Fasoldex x5 years , now progression , have been on AA since May or so
Not tolerating SE well…itchy rash, pedal edema, sore throat/ chest, mussel aches +++( a bad flu)
On a two week break from Afinitor due to rash and pedal edema but still have chest soreness , like flu and need to take Tylenol 100 mg every four hours or I am down on the couch …
TM is low last lab and it did start to go down after going up on Ibrance …40 down to 34.5
So , I see Onco Doc next week…labs …not sure I can tolerate these SE …I have needed to really stay off my feet to control edema , wear support stockings …and take Tylenol …not sleeping well either
Will try to post this but not sure it will go anywhere …
Have hada good run since 2013 on just three regiments …hate to give up …am 79 and normally pretty active …
Any advice ?
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has my comment been posted?
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landafflady your comment must have posted because I can see it! Today was my first day on AA. I only lasted six months on ibrance, then became quite ill (ended up in ICU)/on a trial drug so spent six weeks off treatment. Thank you for sharing your recent experience on AA. I don’t want to expect bad SEs, but after my reaction to the high dose trial drug, I wish I was starting at a lower dose. The mouth sores were the biggest SE I was warned about. And fatigue and bone aches. You got pedal edema also? Ugh, I got a lot of that on the trial drug. I have quite the compression sock collection! Anyways, thanks again for sharing.
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Hey everyone, thought I would drop in on this thread and bookmark it. Ill be starting on this combo in two weeks and am a little nervous about potential head sores and raised cholesterol and blood sugar. :/ Also, a little concerned that this isn't going to last very long either - fulvestrant isnt an option right now (cancer is literally chewing on the glute so hey) so exemestane it is. l also am not ESR1 mutated (yet). If anyone can give me some hope that this will last longer than 6 months, that would be great!
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Hello everyone….Sharware here.
I will also be starting this Afinitor and exemestane too in a couple weeks and some of your comments are uplifting and others are scary. I just got off of Ibrance and Faslodex. Beware Faslodex gave me blood clots and I’ve suffered two strokes. I will get some marshmallow crème at the store as some of you coat the pills before taking them to prevent the mouth sores. I will come back and check on you all soon. It is not easy finding you after they screwed up this website.
Prayers for us all…..Sharware
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BTW I forgot to tell you I have progression in bone Mets
Sharware0
