Afinitor/Aromasin 2013

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.

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?

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.

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.

into Light -

That's GREAT news!!

XOXO

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!

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...

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.

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?

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!!

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.

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.

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.

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.

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!