Afinitor/Aromasin
Comments
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Very encouraging news, Toronto!
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Well, today I will start my 4 day hiatus from A/A combo. Can't wait. I have the nose bleed going on, the roof of my mouth feels like it's on fire which it has been since before starting A/A combo. I think this is caused from the Xgeva shots. I'm going to go over all of this and my findings come Sept. when I have my next appt. with my oncologist. In the meantime, I'm looking forward to taking 4 days away from A/A combo.0 -
Have you found the Afinitor side effects to be cumulative, or have they lessened over time for you? I'm pretty new to Afinitor-Aromasin, and my first week was not bad at all., but the past couple of weeks I've been having sore mouth (really careful with brushing and mouthwashes, etc.), headaches and jaw pain. The jaw pain is scary, because of course I think of necrosis (still get Xgeva shot monthly). I asked my oncologist about that at appointment last Wednesday and I have a dental appointment scheduled. I'm on 10 mg., and hope I can continue with it until scan time again. I've had progression on my last three protocols, and I'm really hopeful that maybe this will help. Any advice or recommendations?
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Hi Schnauzermom. I've found that some side effects are cummalative, and some seem to go away after being on for a while. Let us know how you do.
Naturegirl, enjoy your mini break. Taking one this weekend because my shipment was late....comes tomorrow.
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Hi SchnauzeMo, I think as time goes by, side effects are lessoned. Sounds like you have been thru the ringer and back with the various kinds of meds you have been on thru the years. How long have you been taking monthly Xgeva shots? Have you experienced a burning pain on your palette? I sure have and since January 2014. I'm trying to figure out the whys to it and have mapped out a chart to show my oncol. when I see him again. When this began, I had been taking monthly Xgeva shots, then every other month. My last Xgeva shot was in May of this year. At the same time I had been on Femara and extensive doses of calcium and Vit. D. I'm wondering if the AIs are contributing to this for me.Hi Romansma, thanks dear. I began Afinitor come tomorrow night. I am taking Aromasin though with no break. Doctor's orders. Hope you enjoyed your weekend break. Did you find a difference in how you feel due to the break?
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To everyone here:
I got my CT scan results this a.m. My cancer has progressed on the A/A combo! My onc wants to see me Thursday and discuss changing to Xeloda!!
I am so happy though that this is working for you all!! Keep fighting and never stop!!!
Love to all! I will try and keep you all posted on how the Xeloda works for me the second time! I will continue to think positively!!! Have a great day!!!
Judy
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Judy,
Sorry for your progression on AA. I may be in the same boat after my scans this week. My onc may put me in a clinical trial for palbociclib & faslodex possibly. Not sure yet. I hope your new treatment gets you stable again.
Terri
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Judy, i am sorry to hear about your progression and i hope xeloda would be gentler on you and tough on the cancer. Keep your spirit up , it worked for many people i hope you are amongst them. Please keep us informed.
Hugs
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Terri, you scans may be good or stable , no one really knows . One step at a time. I hope you tell us next week there is no progression:). You are in my prayers for good results.
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Judy I am sorry about the progression. I hope xeloda kicks it to the curb. Keep us posted.
Take care everyone.
cindi
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Hi, I am new to this thread and just heard from my Onc yesterday that if the pharmacist cleared me for interactions with my other medications (psychiatric ones for Bipolar) he would be sending me the prescription in the mail. The only side effect he mentioned in the discussion we had was about the mouth sores, which he said would not likely appear for four weeks at least. He did say that he would start with a lower dose and add to it depending on how I was feeling. But then I get home and read about these other side effects and think, wow, have i really reached a stage where I have to balance quality of life with how long I can live? I was really feeling quite all right with Zometa and Aromasin since 2012 and now, after a second bone met has appeared, I am advised to add this targeted therapy, which some say could also be called Chemo in a pill. I radiated the first bone met in 2012 without mentioning it to my kids, and evaded radiating the new one because the radiotherapist said it was so small and stable that I should watch and wait first to see if it got bigger over time. I have withheld news of these mets from my three children, ages ten, twelve and fourteen, and if I start feeling sick with the A/A combo it will be harder to keep secret that the cancer I was treated for when they were little has returned, and what that means. I am sure I will be cleared to take the Afinitor because I have already checked for the drug interactions online, and have been in a fetal position on the couch for hours since looking into its side effect profile. I am a buddhist, which has made me all the more aware of how frightened I am. But that is a topic for the Spiritual thread, where I will go next. Any encouragement from you who read this will be greatly appreciated. The basic question is, is it really better to take this therapy before organ mets show up, as the doctors think, or should I save this approach for when there is more to treat? Anyone out there getting A/A for just two bone mets?
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So sorry to hear of your progression, Naturegirl!
Knock it out with the Xeloda!Hi Thea, and welcome to the thread. Sorry to hear of your progression. I have bone only mets, although extensive. My mets are in every vertebrae except two, multiple pelvis and ribs, hips, shoulder, and skull. My last scan showed the AA combo was starting to stabilize many of the tumors. The side effects are doable, really. Of course, I feel better when I'm not taking this, but I've taken chemo that kept me in bed for days at a time, not able to drink and eat, dry heaving.....only to feel a few days of relief and do it again. So, put in perspective, this combo is doable!
As for whether to leave this combo for a later progression, I can only share my feelings based on what I've read. You say your scans only show 2 lesions and one was radiated, the other is small. I've seen many women on these boards kick this amount of disease back and live in NED status for many years. It's hard to know if you might be one of the women that is able to do this, but why not give it a try? If it works, wow....bring on graduations and grand babies! If the side effects are too much, move on to something that works better for you. Either way, there is every reason to hope and even believe that you will be able to punch back at those little buggers!
I wish you the very best, Thea! This combo has been successful in kicking back this disease for many women. I hope you are one of them!
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Naturegirl2, thanks for your response. I'be been having monthly Xgeva shots since July31, 2012. I didn't notice any side effects specifically from those, but have never had them in isolation. I haven't notice that my palate is sore, but my gums and the sides of my mouth are. And I have an earache!???? Don't know what to think about that. Good luck with the Afinitor. I hope it works for all of us.
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Hi Romansma,
It was very good to read your response. I am not in any local group where I can talk about progression comfortably. let alone find someone with your perspective, so thank goodness for this discussion board and forum. I think it is important to give A/A a try. I presume that the serious side effects of which I am afraid can be responded to before real problems set in, by which I mean, for example, kidney failure. That is the sort of thing with which I take issue, of course, I can certainly see that being NED is worth the discomfort of a rash or mouth sores. I don't care if I get fatigued, certainly, and I sure wouldn't mind losing some weight. I am over 210 pounds! Being so heavy is really dangerous in terms of recurrence, not to mention how much I miss just being a healthy weight. My onc said that wouldn't happen, but I have seen women on this thread with loss of appetite. Anyway, I think with your help I have talked myself into doing this, which is at least a better feeling than being on the fence about it. Again, thanks.
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Romansma- naturelover has the progression, not me, naturegirl2. Sorry naturelover for your pregression. Hopefully docs will put you on something that will kick your cancer to the curb.SchnauzerMo- you are welcome. Wow, you have been on monthly Xgeva shots for quite a while. When will your last shot be?
Thea, I'm with Romansma on this one. A/A combo is worth a try. See how you do. Good luck
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Oh sorry naturegirl....I'm a little slow these days!
Thea, you sound like you are starting to feel a bit better. Let us know how you do.
I'm in the infusion room right now awaiting my Xgeva shot. Just saw the doc. Blood Pressure way up, sugars way up, white count and platelets getting pretty low. I've lost about 15 lbs in the last 6-7 weeks. BP and sugars seems to be caused by Afinitor. Guess I'm going on BP meds....yuck! Hopefully, things start to stabilize in the next month or two.
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Sorry to hear you are not feeling well Romansa. I start back on the old affinitor tomorrow and I am not looking forward to it, but I am in the same boat- don't want to give up on something that seems to be working well. I hope they get you sorted out quickly.
Best,
TO
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Thea,
I'm on A/A combo with active bone mets. I had 2 bone mets that became active on this drug & my onc wanted to give it a few more months. I just had my PET scan this morning and will find out if it is working on Friday. I do get some acne & had some bad mouth sores on this, which I have not had for awhile. My high blood pressure is a real concern with this. I'm 150/90 & used to be 120/80. My onc may give me something to monitor my blood pressure soon if I stay on this.
Thanks Woodylb for thinking of me with my scans. I'll update here Friday to see what's next on the list.
Terri
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Just picked up my PET scan report. Happy to say the A/A combo is working. Scans look better than my last one 4 months ago. I've been on A/A since last Oct. The 2 new bone mets found last time are smaller & less metabolically active and the lymph node found prior is also smaller with less activity. I guess I'll be stayin on A/A for awhile but hope they give me something for my high blood pressure. Maybe the trial meds like palbociclib will be FDA approved when I'm ready to switch to something else.
Terri
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Great news Terri! I have a prescription for BP meds. I'm reluctant to fill it for some reason. And, yes, I'm hoping to last long enough on AA to move on to Palbpciclib when it is approved. It's been fast tracked, so hopefully we will see it approved in the first half of next year.
I'm feeling pretty awful today. I think I might just have some sort of virus. I took an Epsom salt soak today and drank lots of water. I seem dehydrated for some reason and the low magnesium confirmed it. I'm also thinking that the high blood pressure might be temporary from the dehydration...maybe that's wishful thinking. Going to give it a few more days to see if I start feeling better, then retake my BP. If it's still high I'll go get the prescription filled.
Anyone else have any problems with losing hydration for no apparent reason?
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Romansma - just checking in to say hi and TAKE the BP meds - they don't hurt, no se's at least for me and they work and you'll feel better!!! There are bunches of these meds so if one doesn't work for you another will - you need to keep your bp low while you're stressing your kidneys with other meds - also need to keep close watch on your glucose levels if they get too high you're going to feel pretty awful as well - metformin (the diabetes drug) works if needed. Sending more hugs, S.
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Romansma - I second Sandy. I took a couple of BP meds that I just hated, until I landed on losartan which has very little side effects and works great. No issue, nothing dramatic. It's cheap too. So if one med doesn't do the trick, there are quite a few out there that might just be what you need- with out side effects. Like anyone needs any more side effects in cancerland.
Teri - yay for the PET scan report!
Take care everyone. :-)
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yayyyy Teri wonderful news !!!!
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ibcmets, that is wonderful news!0 -
Thanks so much for the good wishes on my PET scans. I'll see my onc Wed. I'll be asking him for BP meds.
Terri
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trying to decide between A/A and Xeloda or a vaccine trial. I kind of know it is going to end up being one of the former. Would welcome your comments and input on what life is like on these regimens. A/A would start at 7.5 mg (not full 10) and Xeloda would start at seven days on and seven days off. Please share, I am very scared to be moving on again so soon. I had become very complacent on my virtually SE free life on letrozole and then Faslodex (+palbociclib).
Janet
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Yup, been struggling with Stage IV since 2012, but because I have my hair, and have looked so healthy (until now), nobody understands... I get picked on all the time for not being up to everyone else's level, including when I get to the onc's. They were getting really frustrated with me, and even tried to make me pay for the fasoldex out of pocket, until.... I ended up the next week in the hospital with pulmonary emboli in one lung, and a large pleural effusion in the other lung, partially collapsing it. I am now, being started on the AA combo, and it is like, taking a horse to drink, who does not want to go to the well.I finally, decided to cut the 10 mgs. pill in half in the middle of the night, smother it in marshallows, and swallow it. The afinitor oncology nurse got very upset with me. She said, I would not get the full dose. I said, staring at the box and bubble wrap was not giving me any dose, though!!! Do you know, how much these babies cost? $10,000 per month. If I want two 5 mgs. pills, it is $19,000 per month, and so on. Novartis has no shame.
They should be sending the patients all kinds of goodies, like picnic baskets, and massage therapists, and flowers, and balloons, and anything to make us feel better, like they use to bribe the docs, dont you all think? In our dreams, alas....
Sorry to interrupt..... What happened to Afinitor 2014 board? It took me a long time to find you gals....
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Wildchild,
Sorry for your progression. I've been on AA since last OCt. I have gotten many mouth sores & high blood pressure. I found Canker-Rid online made from bee pollen that helped a lot with the mouth sores. I think the longer you are on it, the less SE's you get.
Hope they get you stable again and the AA combo works for you for a long time.
Terri
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Is anyone experiencing pain in jaw when lying down facing each side or pain in back of skull when lying down as well? Starting to deal with this.
I do get Xgeva shots but haven't gotten one in 4 months. I think I have gotten10 shots thus far since May of 2013 till now. Anyone know what the max is on receiving Xgeva shots? Thanks0 -
My oncologist ordered a CAT scan of my head today so please everyone, keep me in your prayers. Thanks0
