Afinitor/Aromasin
Comments
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I went to the pharmacist with my Afinitor. She got out 00 size and it fits perfectly! I even put my aromasin in the bottom. 2 for the price of one. If I can't order them, she told me just to have my oncol to right a script for them and she can fill them. Pretty easy. I'm ready to try it tomorrow at breakfast.0 -
Hi Tarhee
Reading your info give me a good idea to discuss with my Onc. I was in Taxol till sep 17 this year, but I had to stop bc I was feeling terrible, completely miserable, lying down the all week, till the next infusion was needed. So I decided that it wasn`t for me, then last week we analyze w the Onco, other options and he offered the combo Afinitor-Anastrozole, but as I read your experience it give me the idea, to first try the Anastrozole for a while and then start the Afinitor later. My body has suffered a lot this year since April when a got a cholestasis bc of the metastases gone to the pancreas who them grew some tumors that clog the exit of my liver duct, they needed to add a external catheter to get rid of the bilirubine which levels were very high. Then I was put in chemo, and since april I had lost 40 pounds, and of course I feel very tired. For what I was reading from others, it seems that SE's of Afinitor are also to make one feel tired, so it could be a good idea to just be in Anastrozole first.
Thanks0 -
Hello Ladies!
I just thought I would say hi. I just started the A/A combo this past weekend. I was diagnosed almost 7 years agp with Stage IV from the start. I have finally gone thru all the hormone treatments so I am now going back on Aromasin and adding afinitor. It has only been a few days and so far I am managing. I do think I am beginning to get more stiff which i guess is to be expected. I am having a partial hip replacement on October 25 so hopefully my side effects remain minimal. The surgery is needed as there are lesions on my femur neck causing me to be at a high risk of fracture.
Thought I should introduce myself since I have been reading this thread for a couple of weeks now.
Sherri0 -
Just wanted to update everyone on my A/A experience as I have been taking it since beginning of August. A few pages back, I commented that I was in the hospital for shingles in my eye/head. I am now taking a daily shingles pill (valtrex). Doing great with that now, and my PET/CT was yesterday. We were shocked to find out that my cancer has gone down over 50%! Almost gone in my femur/sacrum area and much smaller in lung. But my Onc was really shocked at how I had no mouth sores at all and maybe the valtrex is keeping them at bay?? As the mouth sores are a variant of herpes simplex, so who knows? Onc said he was definitely going to investigate that further, but to stay on the valtrex along with the A/A until my next scan in Jan 2014 - 3 whole months to not worry, what a concept!
Also just fyi, I take the A/A at night after dinner along with my 2nd calcium pill, usually about an hour before bed. Sometimes I wake up with a mild stomach ache, but not enough that I can't go back to sleep. And yes I do get joint pain, headaches, acne, all of the other s/e. They just come and go, just like all the other s/e from all the other meds in this journey...0 -
Benjnate, thank you for posting such positive experience. I have been on Aromasin alone since July and added Afinitor in Sept. I am going to a scan this Friday. Keeping my fingers crossed.0 -
Hansaim, I so hope you get great results too. I'll keep my fingers crossed too.0 -
Ok Day 3 for me with the A/A combo and the Xgeva shot Have to say Yes I have had the headache and mild joint pain and like you benjnate a bit of an upset tummy but this combo is so doable so far And I truly hope I get as good of results when I have my next scans as well, actually went to the Onco today for the monthly shot and ck up and other than high calcium and a bit dehydrated she said keep doing this and we shall see how it works I understand its probably to soon for all he SE's to show but still hoping they are minimal, love hearing all the great feedback I must say.
Deb0 -
Hi, all,
I am no longer on A/A, but I wanted to let you know about the lingering effects. Someone asked pages back, if the A/A causes high blood pressure and diabetes, do those conditions go away when you go off it?
Well my onc said it was too new a drug to tell, but I found out today that I am no longer diabetic and don't have high blood pressure anymore. So for those of you who are wondering, I thought I would pass this info along. Don't know if everyone would have those results, but I am SO glad to not be diabetic anymore!0 -
Raro,
That's really good news.
Terri0 -
baseball fan, I think I'll be starting Aromasin/Affinitor next week. I'm just starting to go through these posts, so I'm asking a question about a post from February. What is Magic Mouthwash and where do you get it? Do you have to have a prescription?0 -
Mary, Yes he mouthwash requires a script from your doctor, Mine was filled at our local Wal-Mart. I haven't needed it thus far however my doctor thought it would be best to have it on hand just in case as well as a script for nausea meds which again no real big issue however I have only been on it 4days. Hope it continues to be this way and for you too!!!0 -
well I am frightened for the first time sine being diagnosed stage 4 July 2012. I had onc appt yesterday and my tumor markers have doubled from 32 to 72 since the last blood test in June. I don't know if this means progression since having abraxane chemo and going on aromasin/affinitor, but they were stable prior to this. Also my kidney test was up and she is not sure if it's dehydration but wants me to increase my fluid consumption to see. Kept asking me if I am vomiting, which I am not appetite has been fine, no more mouth ulcers just fatigue and terrible bone pain. I am having a ct in the next few weeks to see what's going on, if anything and this is the first time I have been worried for a long time. I mentioned my sore elbow so she is having that looked at also and now I am thinking I probably should have said about my sore foot but was thinking it was a pulled tendon or something. I am very itchy in my neck band lower spine and don't know if it's from afinitor or activity. I hate this, I have not slept all night and am now feeling quite sick from it. Anyone else had markers rising so quickly? when I had a bit of progression but not too bad , but she put me on abraxane as a safety measure, so I was thinking I would be doing quite well now I have finished. Hopefully thet have risen without progression, but that sounds unlikely. Love Gail0 -
Australia, My Onco said when mine were high and then jumped that my Pet Scan showed improvement and that Tumor markers were not all that reliable for most she also said that at first they may be but things change and then not, so much or vice versa at first they may not give an indication and then all o the sudden they may and that it can go backwards and forth so she checks them Yes however she relies more on the Pet/CT Scan , Not sure if this alleviates any fears but, I hope so and I will keep you in my thoughts and prayers0 -
Thanks Deb for a bit of reassurance. It seems strange they would jump so much, but I guess any Change worries me these days. My skin is itching like crazy and it must be worse with nerves I would say. Gosh to feel normal again! Love Gail0 -
Gail,
For what it's worth, I had a big jump in at least one of my tumor markers (CEA, from 23 to 50) after I first started A/A, but then my first scan showed major regression, and finally my TM's took a big dive south. But the drop in my TM's didn't occur until 2 months or so after I started A/A. So it's quite possible that the same thing is happening to you--perhaps the TM's are indicating a tumor flare because the combo is actually working. I so hope that is the case! A/A can also cause itchiness, so try to have faith in this treatment for now and try to get some rest (A/A can cause insomnia as well, and I personally take Xanax when I can't sleep these days). Hugs and love, Ingrid0 -
thank you Ingrid, I hope it is a flare, sounds good to me lol! I usually have a late night so don't have any trouble sleeping when I finally go to bed, but who knows what will happen, cancer is very unpredictable.love Gail0 -
thanks Raro for letting us know your situation, it's invaluable info when so little is known about this drug. And Laura, so thrilled for you, wonderful news! Love Gail0 -
I just hope its all good news for all of us and hope things get better for you and soon Gail
Hugs, Deb0 -
thanks Deb, I hope you do well also, it's great having support when you don't know much about a drug. I am feeling better today, holding onto the good tumor flare lol. I don't know how the ladies with all the acne in he ad and face cope with this. I just have a red lump on neck, arm, back with a faint red rash and they drive me nuts with the itching, particularly the neck one. The chemist gave me some Lanacane C which helped for a little while. Maybe the old calamine lotion would be better? Something cold on them seems to help. I hope these go away like the mouth ulcers have, then thing would be pretty good, especially compared to doing chemo again!
I may go to opera in the park at dusk which would be nice and helps having a distraction. We are very lucky on the Goldcoast having lots of free opera in the parks and you just take your chair and wine and cheese and makes for a great night out. Love Gail0 -
Hi, Ladies. Well, my PET scan showed something new in my lower left abdomen, which has confused the MO and so he has ordered a CT scan with contrast, hoping to figure out what and where it is. In the meantime, he's having me start on Afinitor/Aromasin. I'm pretty bummed and pretty scared of the side effects, but hopeful about the results. From reading the posts, it seems that most of you have had a good response to these drugs. The MO said these drugs are the last ones before chemo, so I'm hoping for a long and happy relationship! The good news is that my bones were actually better--no new mets and the old ones are healing. I'd appreciate any advice about dealing with the side effects. I thought the nurse would talk to me, but no one did. I asked the doctor about the magic mouthwash, but he said to wait and see if I had mouth problems. I see him again in two weeks.
Mary0 -
I'll be the first to welcome you MaryLW to the A/A world. We got plenty of S/E's here, but personally I would take A/A over Arimidex as at least my joints don't constantly freeze up on A/A. You'll read a lot about mouth sores but maybe you will be one of the lucky ones. It's funny how much more I am texting since I got mouth sores as it hurts to talk at times! But there is stuff out there for them and if I am too lazy to run upstairs to use the ointment, I pay the price. The advice I would offer is to take meds at night to lessen stomach issues, and I swear an Activia yogurt a day has helped. My resistance to illness has really been hit, so I would also recommend taking a look at your schedule and trying to get rid of any activities or events you don't really have to do. And I do hope you are on the A/A board for a long, long time with great results!0 -
thank you, Laura, that all sounds like good advice. My white count is already low, so I think I'll need to be especially careful. Do you take the Aromasin and Afinitor at the same time?0 -
Yes, I do, along with my evening calcium pill. Never had a problem taking both at once.0 -
Good, I'll try that. I'm starting with the 5mg Afinitor pill, so I'm hoping I'll tolerate that ok. I'll see the doctor again in 2 weeks. My CT scan is scheduled for Thursday, so hopefully I'll find out what this new malignancy (I guess) is.0 -
Ok ZI have been on the A/A combo about 2 and a half weeks so far so good actually a bit achy but nothing that stops me as far as mouth sores nope a bit of a raw feel to my tongue but again not bad hope all thats just starting it have no SE's or mild ones like me !!0 -
GOOD NEWS,
I started A/A end of July , and my PET scan came back NORMAL !! so back into remission I go (for now anyways)..SO I would suggest that everyone try hard to keep going through all the crappy side effects................ and the kicker would be if in fact the Afinator changes the make up of the cells so in the future I can go back on femara as I got 2 great years with that !..
mind you , had no mouth sores, but Afinator has made me a type 1 insulin dependent diabetic , but hey its worth it to be stable !!!!!!!!!!0 -
Rosie that's wonderful news! I'm so glad for you. Happy Dance!
Raro posted a few weeks ago that she, too had become diabetic and had high BP from the Afinitor. She had to change tx and about 6 weeks after she was off the A/A her BP was back to normal and she was no longer diabetic. So there's that to keep in mind.
Leah0 -
I am having a real tough time with myself over candy. Specifically chocolate candy, those little snack-size bites that come in big bags to give out for Halloween treats. They sit in a dish by the door, waiting for Oct. 31, and I just cannot pass them by. Well, I DID pass them by as I walked past them to get to the BIG bag that had my favorites. I KNOW Afinitor can cause diabetes, and yet I still eat the candy, along with ice cream and any other sweet thing that is available. I never did this before to this extent - maybe it's just 'cause I can taste sweet and not other flavors. I used to crave salads, fresh veggies, and now they don't have much flavor, I crave sweets. Somebody, yell at me to get over myself and eat healthy stuff again! Thanks!0 -
I'm starting Aromasin today and Afinitor tomorrow. I just got a call from the To Go Pharmacy that is delivering the Afinitor in the morning. It's going to cost me $906.58 each month. I just am so upset. I was feeling really depressed before about the progression, and now I feel guilty as well, for spending so much money. God, I feel terrible.0 -
Mary, ask your pharmacist to check into getting it at a lower cost from the company. I have a high co-pay for Afinitor, but my pharmacist was able to get that reduced to $25 each month through some program that Novartis has to provide financial relief. I don't know much about it because the pharmacist has taken this on and I am VERY grateful to him for tracking it down to help as much as possible with the $$$.0
