Afinitor/Aromasin
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Intothe light- Afinitor has become generic so hopefully much cheaper than that! When I was taking it - it was still brand name and it cost $19,000 per month! I. thought that Ibrance was expensive. the pharmacist did tell me that they had a program (at kaiser) to help with the cost- so I would check into that.
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I'm on Medicare w/drug supplement. My copay is $620/mo now, but Jan is $2500. Then you are in catastrophic category for rest of the year. Exact $ depends on your part D plan. Diff between private & Medicare is that drug costs aren't included in OOP max, so there is no cap on what you pay during the year. Makes it important to check your part D plan each year against your drug list since you can change plan each year. Enrollment starts Oct 15th.
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Thank you everyone. I did pick up my meds today. The Pharmacist gave me an enrollment sheet for financial help, which I will see if we qualify. It is based on actual income and since we are retired we might qualify. I am still trying to figure out what it means to be in the "donut hole" for pricing? I just want to make sure I am not missing anything. Thank you MN I will check on what Medicare plan we are on. It has all been fine until this medicine...no more than $10 copay. I also got my "Magic Mouthwash" so I think I am good to go.
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Anyone having body aches that might be caused by this combo? My active tumors are in my liver, but I've developed aches in hip joint after sitting for an hour and can barely stand afterward. Started on right side and now have some on left. I've also had lots of back ache between my shoulder blades. I've been doing water aerobics and pain doesn't interfere with that nor is my movement inhibited. Scans & MO appt is mid Oct. Recent regular visit w/internist who agreed that I should try chiropractor. Having trouble finding one who is vaxxed and I don't want anyone that close to me who isn't. I've been taking ibuprofen & using those cold/heat pads on my back. Advice?
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NM, I am only five days into this med and so far everything is fine. No extra aches and my stomach issues have calmed way down. I don't know if this is just the peace before the storm but I will take it. I alos pray it is working. My mets are liver and spine...
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nopink, it has been quite a while since I was on this combo, but I still remember body aches being a bad se during my time on A/A. Good news is it's probably an se and not mets. Hope you find I way to alleviate the aches. I found massage helpful.
Intolight, dropped in to this thread to say hi and wish you well on your new tx. I will miss your voice on the Xeloda thread. Regarding the part D donut hole, that is the bad place in the part D pricing when you will have to pay the most for drugs. Once you have paid a certain dollar amount you pass into the catastrophic phase nopink mentioned, and your drug prices go way down. My spec pharm has always been a blessing in helping me find either a foundation or big pharma patient assistance program to pay for the expensive tx I have received. You do not have to be very low income to qualify. Best wishes on this and a good long run on this tx.
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NoPink - I am currently taking exemestane/Everolimus (Afinitor). Joint aches/stiffness most likely from exemestane, but I wonder if Everolimus might make it worse.
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Looked up SE & joint pain is listed 1st. Glad to hear it is probably drugs, not tumors pressing something. Trying to find chiropractor who has been vaxxed. If not, I'll be more frequent with massages. But wanted to hear what chiro might have in mind.
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I don't know about the rest of you, but I am feeling much better on AA than on Xeloda. I don't want to jinx anything, but I can do this. Of course I have no idea whether it is working!
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into Light -
That's GREAT news!!
XOXO
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into the light- I agree. Also easier than Ibrance. I never tanked my ANC.
When I told my MO this- she was in disbelief
Hope you get a good long run
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Ok, anyone else pee five times a night on this med? Also, went to the lab this morning for a fasting lab and urine sample and couldn't produce more than a drop. Drank 48 ounces of water, waited over 45 minutes, tried again, and still couldn't go. So I went home. Anyone have any suggestions? I only went once when I got up, and drank lots of water before I left the house (it is a 20 minute drive). So frustrating. I am sure I will need to try again in a day or two... My labs are all over the place now so I don't know what is going on. Such is our life!
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IntoLight - Me too! I'm fine during the day, but the minute I lie in bed, I get up & pee, then again in 30 min etc until I fall asleep. Then at 4am. Is it when we take A/A? I take Aromisin @ lunch & Afinitor @ bedtime. I thought it was because I get thirsty late afternoon & during /after dinner & drrink too much water late.
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Nopink, you may be onto something. I take both my pills together at 6:00 pm. Were you told to take them separately? My MO told me together was fine. Hmmmmm...
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My MO said together is fine too. I just split them up because I take some other stuff (lexapro &ritalin that need to be taken in the day time and some (losartan, clonazepam) that I need to take at bed time. I split them up to not upset my stomach all at once.
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I usually pee every 2-3 hours, this has not changed with Everolimus(Afinitor) / Exemestane. But recently it seems like I am retaining water, maybe 4 pounds or more. Also, it seems like I need to pee during the night 2-3 times, which is new. Is it just getting older? The cancer? the drugs? Often, I slept the night through without getting up, and sometimes only once.
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BlueGirl, I think it is the E/E as I have similar effects. It definitely has increased my urine output. It is easier on my stomach so far though. I will accept the change...
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This forum is sooooo quiet!!! Are there so few of us?
Question: I am religious about using the special mouthwash but now everything tastes different, especially sweet things have no taste at all. It is probably a good thing as I am nervous about the fact this drug raises blood sugar so I definitely don't crave sugar anyore. Anyone have any tips?
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Into the light- I did the mouthwash for the 8 weeks and then backed off over a week and stopped and had no problems with mouth sores. it is interesting that the forum is so quiet- I was listening to a breast cancer podcast yesterday and they were talking about how people jump to piqray so quickly instead of Afinitor when piqray is so very hard to take and causes way more blood sugar issues and I am not sure that it works any longer.
I do love sweets, but, modify, truthfully, mostly so I won't gain too much weight- it would be wonderful not to crave them! anyway- my HGBa1c did inch up a bit, but, not much, my FBS never went above 100, my cholesterol did get a little higher, but, I didn't need treatment for it. my feet were swollen, but, better in the morning,
my taste is not reliable since I lost most of my sense of smell after a severe flu in 1984- but, I think things were a bit worse on Afinitor. At 7-8 weeks I would stop the mouthwash and see if your taste gets better.
I hope it is working for you! I want us all to hang around for the next round of what sounds like good drugs- we seem so close to some possibly good options !
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Started AA about 8 weeks ago. Started with a cough then lungs sore. That seems to be better. A few days ago mouth sores and now joint pain in the hips mostly. Brain fog and a bit of nausea. Trying to drink more water for the mouth sores and asking my MO for the mouth wash. Ideas for the joint pain?
Tumor marker went down last month. Labs again next week and scans next month. Hopefully everything stays stable and SE's go away!!
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Perky, my MO prescribed Dexamethasone mouthwash to prevent mouthsores. It also helps when a sore first starts. It is not without SEs though so I would check first. I use it four times a day. The SE for me is that it has changed my taste buds, but it is worth it to me. I also rinse with warm salt water. You don't need much salt for it to work.
Good luck with this. For me the AA is easier on me than Xeloda was.
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Thank you IntoLight! For some reason my MO did not want to prescribe that. Just met with an NP who suggested L-Glutamine. She said it will support the whole digestive system. Plan to give it a go before asking for Dexamethasone. Will let you know how it goes.
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Wow, I was not able to pick up the L-Glutamine last night but I swished coconut oil in my mouth for about 15 minutes and then again this morning. It seems better? I normally use the coconut oil like this to whiten my teeth but it has seemed to help the mouth sores. Has anyone tried coconut oil or the L-Glutamine?
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My face and eyes are very puffy. I have cut back on the Dexamethasone just in case it is a reaction to the steroids in it. Anyone else have this? On a good note the cutting back has not seemed to trigger mouth sores. I also had my first scan today since starting A/A. I was so excited that my sugar level was low at 105. I know A/A raises blood sugar so I will take the win.
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Epic fail with holding off on the Dexamethasone! Salt water and Coconut oil help a bit but sores got so bad it was hard to eat. Silver lining....lost a few pounds that I have been wanting off.
Finally got some Dexamethasone today and have used 2ce, seems better. IntoLight - My MO prescribed 2x per day. She said I can use up to 4x till the sores are under control.
I see many have used it for 8 weeks and then do we stop?
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Perky, my MO prescribed Dexamethasone four times a day. She said when she sees me next she may reduce me to twice a day. It seems to work just great but I am concerned because my face is swollen a bit, so I reduced myself. I don't know if it is the mouthwash or not but I figure I can always go back up. So far the reduction works great. My mouth is a little sensitive in places, but it is quite mild. The only other thing I do is rinse with warm salt water. That always worked for me in the past. I am hesitant to take any additional pills.
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IntoLight, what about that Magic Mouthwash the folks on the Ibrance string used to recommend. And what about Pat Mc's yogurt? I can't recall the name, but she seemed to swear by it. Do you remember?
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JoynerL just went back to read the study they did on Dexamethasone and A/A https://pubmed.ncbi.nlm.nih.gov/28314691/ also saw one about the magic mouthwash and it seems as long as there is a steroid it seems to help. https://pubmed.ncbi.nlm.nih.gov/30833486/
Another note, my throat seems better after using the L-Glutamine.
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Joyner and Perky, thank you for the articles. I noticed when I read the articles that Magic Mouthwash and Dexamethasone use different steroids but do the same job. I agree that the Dexamethasone works well and will continue to use it as my face is much better this morning and I have no sores. The articles recommend 12 weeks at four times per day and I am close to that 12 week mark. The small reduction to three times a day seems to have taken care of the problem. Pat Mc used Greek yogurt which I do as well. It helps me in more ways than the mouth and I definitely notice a difference. I ate Greek yogurt while on my cruise last month to stay consistent and am sure it helped.
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yes, thank you! and thank you for the reminder in Greek Yogurt. I have always thought of it more as a treat but now I get to eat it daily!!
My NP suggested digestive enzymes while on this treatment but I though I would start with something like Greek Yogurt as a pre-biotic. Would rather not take any more pills than I am taking if it works!0
