Afinitor/Aromasin
Comments
-
Sorry to report that my love affair with A/A is over. While I was having great results, my liver hasn't been so happy. As liver enzymes rose, onc dropped the dosage a couple of times. The last few TMs have skyrocketed....so you know the rest of the story. Going to try tamoxifen for the first time.
Has anyone else had this happen on A/A?0 -
OK, something very good about the A/A combo for me - it's working!
stablestablestablestablestable.
Leah
0 -
I too am leaving the A/A group after 5 months. The good news is that it worked really well on my liver mets and lymph nodes-almost gone! But it had no affect on my bone mets. They have progressed significantly. I start Abraxane today. My cancer clinic has a new genetic sequencing specialist. I don't meet him til next week but I had a bone biopsy yesterday. They will send the sample to Stanford for sequencing and hopefully be able to determine the most effective treatments. Anyone had experience with sequencing?
0 -
Babs, I am disappointed for you - I have a few bone mets that aren't giving me any trouble right now, but my MO has not scheduled me for any further scans as we are following the tumor size under my arm as evidence of clinical effectiveness. But if it doesn't do anything for bone mets, I am a little worried. I am also on Zometa every couple of months, but asked to skip this time and go for 3 months because I just cannot handle one more thing right now - it would have been due next week and I just don't want to lose 2 days - one for the infusion (takes all day to get labs, get IV, get the stuff from the pharmacy, etc etc etc) and one to feel like crap. So maybe I will agree to it in October. I also don't know much about the genetic sequencing - I think my tumor had some done as part of a clinical trial, but I have no idea what the results were, and the MO has not said anything about specific treatment based on the sequencing. I will ask her about that next week.
Oh, the facial acne. Bllllehhhhh!!!!! Not many, but right at the scalp line, chin, cheek, by my lips .... my scalp doesn't seem to break out but it itches like crazy! I have tried using a good dandruff shampoo, good conditioner, and have resorted to applying hydrocortisone cream to my scalp right after shampooing while hair is still wet. I think this helps a little, but haven't discussed it with the MO and sure haven't seen anything in the literature about it - I just tried it empirically.
I have had nausea come and go, but am also never sure if it is the afinitor or letrozole (I think aromasin is similar in SE profile) or one of the other meds I am on as ALL of them have nausea listed as a potential SE. I have not had problems with vomiting, but appetite is poor, and I cannot taste food much of the time, so that doesn't help the appetite either. I am trying to track taste changes with occurrence of mouth sores, and I think there is a slight correlation, and if I am on this long enough, maybe I can figure that one out. If anyone is interested, you might try tracking this as well.
Best wishes to all of you. I got my afinitor refilled yesterday, and the label says I have no more refills. I guess that means the MO has to write the Rx again and get it approved through insurance as long as it is still working. I had a major panic attack last night thinking it might not be working ... my brain telling myself stories that have no basis in reality for the moment, just emotional basis. So I am thinking positive thoughts, having a nice weekend traveling home to see my mom, and putting the meds/stage IV issues on the back burner until next week.
Hugs all.0 -
One more significant SE from A/A I should mention before I leave this thread. Pleural effusion both lungs so thoracentesis x 2 in the last 2 weeks. Altho pneumonitis an known SE of Afinitor my onc did not believe the effusions to be related. She's now changed her mind! Good luck to you all on your A/A journey.
0 -
So I've been off the A/A combo for a few weeks, after getting a good year from it. First of all, for those of you with high blood sugar caused by it, the good news is that the diabetes seems to be fading away. One less thing to deal with, yay!
Secondly, I had learned that I could get a 90-day supply of A/A for a cheaper price, so I did so...and now I have 2 and 1/2 boxes of the stuff and NO idea what to do with it. I know how expensive it is and how hard it is for some people to get, and I also know that I'll probably go to hell for even hinting that if anyone wants it they can PM me...but what would you do? Having some life-saving medicine that costs such a ridiculous amount of money...hint, hint...it just seems immoral to throw it away. My onc's office said they can't take it...
0 -
I just got my afinitor refilled this week, have MO appointment tomorrow. Have had very tender painful area over ribs for a couple weeks, now it seems swollen, maybe a mass???? Am trying not to let my brain run away with my fears again, but I am having a tough time being optimistic right now. Also having tip-of-tongue sores again, doesn't really LOOK that bad but feels awful, taste is gone again and food is unappealing. Had bad pain flair over the weekend, probably because I was visiting out of town, off my routine, didn't get the LE care that I should have done, didn't get the other exercise I should have done, didn't get the right nutrition .... but had a lot of fun with the family.
I made pickles with my mom, tasted the vinegar & spices, couldn't tell if it was OK or not, was sort of bitter and odd, but my mom said it was fine. They look great! All the jars sealed, got 14 pints. Maybe I will be able to taste them when we open a jar - not sure when that will be.
I think someone said you can take unused pills back to the pharmacy, since they are individually wrapped .... I'm not sure about that, but you could check with your pharmacist about the best option.0 -
Unfortunatelly, it's a mail order pharmacy and I checked, they won't take them back.
I really miss canning, myself. I never made pickles, but canned just about everything else. Now I'm just too tired. I really miss marinated mushrooms!
0 -
Hey gals,
Reporting in that side effects continue to be pretty mild for me. No mouth sores (I've been doing about 3 saline rinses a day). I do have pimple-like bumbs on my face and scalp as well as a mild bumpy rash on my chest and back. Tumor markers are on the rise though, so not sure if A/A is working.
0 -
Well, I am on an Afinitor holiday. Saw the MO yesterday, and during the "review of systems" I admitted to a dry cough and more shortness of breath when I walk at my normal pace (usually 3 miles an hour is VERY comfortable pace, but about 2.5 is my max right now). She is concerned about noninfectious pneumonitis. Have to have a chest CT next week. Great. (not!) I am trying to be "in the present moment" and not worry about the future. So not thinking about the CT and what-ifs from here on today and this week, as best I can. Maybe the itchy scalp will feel better!
0 -
Well, I'm joing the Aromasin/Affinitor group. After 4 years Femara is no longer working. My bone mets are active again & I have 1 new one close to the spine L1 area.
Hope everyone is tolerating the SE's---not looking forward to achy joints & whatever else I get.
Terri
0 -
Linda the pneumonitis that drove me off Afinitor was seen on an X-ray by a pulmonologist. Cheaper than a CT. I don't remember that we did a ct at the time but it was affecting me so heavily we knew my time with Afinitor was done. I didn't have any progression just the miserable SE's.
0 -
The blood test I had yesterday when I went in for my first Xgeva shot showed that my platelets were low so I am off the Afinitor for a week until I can be retested. Very frustrated!
I really want this med to work but I have to be able to take it. Anyone else have their platelets take a dive while on Afinitor?
0 -
Pinkshirtnow, my platelets, hemoglobin and WBC s all dropped, but not to dangerous levels. I have had lots of spontaneous nosebleeds but they stopped fairly quickly.
Chickadee , did the pneumonitis resolve after you went off the Afinitor? How long did it take? My MO said she goes straight to ct because the chest X-ray reports always suggest a ct to confirm anyway! So it saves me one more trip, half a day, and several days delay to then get ct scheduled.0 -
I get blood work on Monday. I guess at that point I'll get an idea if the affinitor/Aromison is working. Starting to get a little nervous. I guess I'll find out how it's affecting my counts and platelets and if its bringing down my tumor markers. I started August 20th so I'm not sure if I've been on it long enough to show anything.
So far my side effects have been manageable. I haven't gotten any canker sores. The first couple if days I wrapped it in marshmallow, but after the 1st week I started just popping it in my mouth and drinking lots of water. I still get a headache once in a while and I really think its from the treatment. I also have a rash over areas where I sweat. Armpits, inside my elbows, behind my ears and under my bra strap. (I've been using aloe with lidocaine and it stops me from itching. I guess I'll need to discuss with my doc on Monday. I've been trying to avoid steroid creams that I know would dry it out quicker.). Another side effect I think I may be getting is dry eyes. They sort of feel a little funny but I don't know if its because I do to much reading on my iPhone.
Giving my best to everyone!0 -
It took almost a year for the coughing to stop. Recently it has snuck a few episodes back in. The pulmo guy said there was a small area of permanent damage. Recently I got so short of breath I couldn't walk more than a few feet, off to the Dr, X-ray and CT found a smal pulmonary embolism. Can't blame that on the Afinitor been off it now for 18 months.
Really sucks because I never smoked or ever had problems with my lungs, and look what treatment did.0 -
I guess I'll find out next week whether A/A has been working for me, as I'm getting a series of scans after being on the combo for 2 months. I'm not feeling all that optimistic, since my SEs seem to be worse than for most people--a fair share of nausea, including a few vomiting episodes (that, at least, ended over a week ago), diarrhea, and a body rash, which I showed my nurse-practitioner yesterday and am consecuently taking a brief break from Afinitor and reducing my dosage to 7.5 mg. Oddly enough, I haven't had any problems with mouth sores. I also caught the flu last week on my trip back from Scotland, and I'm still feeling a wee bit wobbly, not sure if it's from the flu, the SEs, or something else I'd rather not think about.
After a very pleasant year and a half on Faslodex and longer than that on Arimidex, I'm finding all of this rather discouraging. But I'll happily learn to manage the SEs if the combo is working.
This last month has been a hard one on me. On August 15, my oldest brother, a truly amazing human being, passed away after being diagnosed with an aggressive glioma at the beginning of this year. My vomiting and nausea actually began on the day I heard the news, so I wonder if some of the SEs are emotional/stress-related. Also, my trans-atlantic vacation to Edinburgh, Scotland, planned long before all this business, was physically taxing on me, coming when it did, even though I managed to have a reasonably good time and see some wonderful friends, as I always do in that wonderful country.
I'm feeling a bit down, so if anyone wants to wish me encouragement or good luck, they get a gold star from me for the day.
0 -
My side effects were pretty awful and the scan came back stable. It was the side effects that drove me off Afinitor and not the effectiveness.
0 -
Thanks, Chickadee!
I'm hoping that's the case with me, and that the lower dosage will make my SEs manageable. I'm also wishing you kinder SEs with your present and future treatments.0 -
Pinkshirtno, Was it because of side effects that you changed from 10mg to 5mg Afinitor? You say you threw up for the first few days after starting the lower dose, so just wondering if you had a break between the 10 mg and the lower dose? How long were you on the 10 mg?
I have one mouth sore, I think I bit my lip, but it seems to not be healing very quickly. Ugh, it seems if it's not one thing it's something else, but I'm trying to just live one day at a time.
0 -
has anyone had issues on A A of not being able to sleep ........ it had been about 5 weeks since i began and the last 8 days have not been able to sleep more than 3 hours and that is usually from 4=6 or 7 ...I HATE it as then i am down all day exhausted .....
anyone else having issues
0 -
Hugs Inky. I lost my forty seven year old brother ten years ago from a heart attack. He appeared to be the picture of health and there was no heart disease in the family. I miss him every day. Be kind to yourself and know you are not alone.
So far I have been on a/a for a month. My only side effect is a very dry nose. No scans for two more months.
Love and hope to all.
Nancy0 -
I have been on a/a combo for over 2 months and I love it I have no back pains or other achs except for some mouth sours but I could deal with them and sours in my nose. Which by the way really suck... I keep trying to pick the sours it looks like I am picking my nose. But I could deal with it. I will take sours over pain. I don't get my scans till December. But I hope my tm are getting better.....
0 -
lindatwo-
I was off the 10mg for about 10 days before I started the 5mg. The mouth sores got to me. I had huge mouth ulcers and I couldn't eat. The vomiting I talked about wasn't with the Afinitor but with the Xgeva shot. I also started a Fentanyl patch at the same time so it could be that also. I'm still taking zofran because my stomach is a bit off and I really hate vomiting.
I'm off the Afinitor again right now because of low platelets. I also am going to start radiation for a small brain met next week so I have to be off. I hope I can get back on track soon so I can find out if this medicine will even work for me. I'm on steroids ahead of the radiation and that isn't any fun right now.
Just a bit down right now.
Linda
0 -
Thank you all for sharing. I am somewhat encouraged by your comments. I will be starting the A/A as soon as insurance is checked, etc. The office nurse gave me a printout about both and the side affects listed seemed awful if I got them all, so I was scared. Most of you seem to be dealing with the SEs so I am hopeful.
Thank you!
0 -
I had my Onc appointment yesterday. She didn't like my rash in my elbow and armpits. She sent me to a dermatologist and now I have steroid creams. Hopefully it helps. I'm at Sloan and she hasn't seen my reaction to affinitor, but she said I can continue on treatment and hopefully the rash goes away. I feel like even before I went yesterday it was starting to get better. So maybe it's just a flare up or maybe it's a side effect from that affinitor triggered from a vaccine trial I did last year.
As for my blood work! I'm so happy! 1 TM dropped by 25% and the other one went up 1 point. Also my liver function numbers that were starting to rise on Xeloda dropped. So now I'm cautiously optimistic that it may be working. I just need to get this rash under control.0 -
Hi girls, happy to find this thread as I am on day 4 of 10mg daily. The girls who got side effects, was it very long before they appeared if you dont mind answering?. I ate some peanut m&ms tonight and should not have had something so sharp as I can feel my tongue is a little strange now, what a stupid thing to do!. I hope we all do well and can manage side effects. Love Gail
0 -
LilSchatzie, I get frequent rashes from the Afinitor, and have since I started it. They're itchy but seem to go away in a day, only to reappear somewhere else. I call it my "travelling rash". When the itching is too much I use Fenestil gel, which helps.
Leah
0 -
I sometimes get the rash, too, but it comes and goes like so many of the SEs from Afinitor. Anti-histamine tablets keep the itching under control for me.
0 -
Thanks ladies for the tips on rash's. the steroid cream I had really cleared it up.
0
