Affinitor and Aromasin

[Selmac]

Anybody on Affinitor and Aromasin. Dr wants me on it. After reading se I'm scaeed.

[amp1dc]

I took Aromasin and Affinator for about 5 years ... Due to changes on my CAT Scan, in Nov., 2017, my oncologist recommended Ibrance and faslodex. I experienced no side effects on either treatment!

[Selmac in reply to amp1dc]

Thank you. I was on Ibrance and Faslodex for 6 months. Didn't work for me. What scares me is the steroids. I have problems with taking it. Rapid heart rate. I feel like I'm having a heart attack. Can't sleep even with ambien.

[Kats2 in reply to Selmac]

Selmac,

I was on Afinitor and Aromasin this past fall for 4 months. At first my dosage of Afinitor was 5 mgs which I was tolerating. Then, my Oncologist jumped me up to 10 mgs, the highest dose. The middle dose is 7.5 mgs.

Well, at the beginning of the 4th month I began to get swollen feet, swelling of my lumpectomy breast, some shortness of breath, and my rings were tight on my fingers. For some reason, my Oncologist didn’t make much of this and had me continue with this dosage.

8 days after my appointment with him, I really was having shortness of breath! He prescribed Prednisone to take over the weekend, then had me get a chest x-ray and see him on Monday.

I did, and it showed pleural effusion of my left lung, the lumpectomy side. I other words, I had edema, a build-up of fluid caused by the Afinitor.

I had to go to out-patient and have this fluid removed with a syringe. My breathing has returned to normal now, and my Oncologist thinks he had me on too high of a dose of Afinitor. I got switched to Ibrance with Letrozole.

I’m on my 4th month of Ibrance. My tumor markers have gone down dramatically.

I have off/on lack of appetite, low energy, and just a blah feeling. Also aches and pains here and there which slow me down more!

I see the Oncologist next Thursday. We’ll discuss all this, and maybe some changes will be made in how I take the Ibrance. I don’t like this sleepy feeling that I get every day.

Selmac, just remember that all chemo drugs have side effects. Some people can tolerate them just fine, others not at all. Find out what dosage will be given to you of the Afinitor. Ask that the highest dosage NOT be given at the beginning!!!

Good luck! Keep us posted as to what is decided. Best wishes. Kats2

[Selmac in reply to Kats2]

Thank you

[meshare]

Hi, I’m on both. I experience no side effects at all. In comparison to chemo it’s so much easier . At the start I was given a mouth rinse as a preventive measure for possible mouth sores but never really needed it.

Hope it works well for you,

Good luck

[alicehblack]

I just finished my 2nd month on A/A. I was on Ibrance/Faslodex before that. I think that A/A has been the easiest medicine I have been on to date. My face broke out but that is really starting to clear up. I had a headache the first couple of weeks, but that left. Ibrance left me so fatigued and this doesn't do that at all. I do get short of breath and my oxygen level falls below 90 when I go up hills or lift anything remotely heavy but it comes right back up to a good level very quickly. I have been on 10 mg from the beginning. I highly recommend this combo.

[barbarac76]

Hi. I was on Afinitor. I started on 5mg. After one month, my oncologist increased the dose to 7.5mg, which caused my liver enzymes to increase dramatically. I also had many mouth sores. My onc took me off the Afinitor completely for a few weeks until my liver numbers returned to normal. THen, I stayed on 5mg for a year. After a year, my onc gradually increased my dose to 7.5mg (started with 7.5 every third day, 5 on other days). Eventually, I made it back to 7.5mg. After two years when I was on 7.5mg everyday, the lining of my lungs became inflamed. Had to stop Afinitor.

In summary, my side effects were elevated liver enzymes (AST, ALT, ALP) when the dose was too high, mouth sores, and insomnia.

[Kimr2081]

Starting these on Thursday or Friday along with one other drug that is similar to Ibrance. Will let you know how I am doing next week.

[Selmac in reply to Kimr2081]

I'm starting was. We'll have to let each other know.

[Kimr2081]

Definitely. Right now the switch from one anti-depressant to the other is horrible. I know its only been one day but am pretty nauseated and about to jump out of my skin!! Geez, just one more f'ing thing to deal with. When is enough, enough!!

[Selmac in reply to Kimr2081]

I'm only taking Xanax. Meant to say I start Wednesday. Noticed my messssge said was. Spell check. I told my husband this is it for me. If this doesnt work im done. He said it's not ok but he understands. I really am just about finished fighting.

[Kimr2081]

Not there yet but am so freaking overwhelmed. I don't know if you saw that I am starting these meds through a trial at UCLA and have to have a bunch of scans and tests and am actually leaving shortly for a liver biopsy. Right now I am just over it but hope to pull myself together again shortly. Right now for me since i have so much to do for the trial that a day doesn't go by that i don't have a reminder that I have cancer. Sorry for the frustration and thanks for letting me vent!!

[Selmac in reply to Kimr2081]

Vent all you want. It helps. It is hard seeing other people making plans and looking forward to vacations and stuff. You do have a lot going on. I'll keep you in my prayers.

[Kimr2081]

Thanks. I am so exhausted right now or I would give you a detailed update. Thanks for your prayers and you are in mine. Going to tomorrow to pick up the new medication. Will fill you in later.

[Kimr2081]

Hi there, I started on these two drugs plus one other drug similar to Ibrance as part of a clinical trial (I think I might have mentioned that) last Thursday so today is day 8 and no side effects so far. I am hoping it stays like this but will have to see what prolonged usage results in. Trying to stay hopeful. I think one of the drugs you are taking (and me) can cause mouth sores. They have given me a prescription mouth wash to use 3 x a day. Easy treatment just hard to remember the 3rd one in the middle of the day. Keep us posted on how it's going.

[Selmac in reply to Kimr2081]

Hi Kim 2081

So far I'm doing well on it.I don't know if side effects will increase. I have used the special mouthwash in the past and am using it now 3 times a day to try to prevent any mouth sores from starting. It seems once I get a mouth sore it's bad and takes so long to heal. We'll try to keep each other posted.

[Kimr2081 in reply to Selmac]

Yes let's do and good luck!!

[Kimr2081]

I know it's been awhile but wanted to update you. So I started on the trial (Affinitor, Aromasin, & Ribociclib (which is similar to Ibrance) two weeks ago tomorrow. The trial is the use of the 3 drugs together. I feel good which I am thankful for. Not sure what any long term side effects may come about. I go for blood work tomorrow and then to the doctor on Friday. I have to have some EKGs as one of the drugs can affect your heart. The first few months of the trial I have to be at the doctor every 2 weeks. UGH. Thankfully, I love my doctor and his staff and its close to home. The doctor appts run 4-5 hours. Will have to see what that is all about. Feel like a science project but if it works it will be worth it.

The transition from one anti-depressant is getting much better. On top of everything else that sucked. Oh and i had to have another liver biopsy as the one I had in September when they found the cancer had metastasized didn't have enough tissue leftover for the trial. So that one was a piece of cake. No pain at all. This last one, if I could have punched the doctor in the face I would have. It hurt like hell and my side hurt for over a week. It was the same procedure but done a little differently. Holy moly!! So glad all that prep work is done.

How are you doing Selmac? Hoping and praying all is well!!

[Selmac]

Not too bad so far. A few mild side effects but nothing terrible. My nose is getting red spots on it. Don't know what that's about. I've been praying for you. Sorry about the biopsy. When I had a bone biopsy done the dr fractured my hip and I had to have a hip replacement. I love my Oncologist but wonder about some drs. Thanks for checking in.

[Selmac]

Kimr2081

Saw my Oncologist today. He did a gene test on me and it said I am on the best treatment right now for me. Hoping and praying for all of us.

[Selmac]

Kimr2081, how are you doing. Started my second month of the Affinitor and Aromasin. Doing really well except the red sores all over my face. The Oncologist called me in a prescription for it. So far it's not clearing up.