Starting Afinitor and Aromasin, what to expect?

Hi Hope.  Just found this board.  I am on afinitor and aromasin, among many other drugs including perjeta/herceptin.  I started on the afinitor in June.  I have been on aromasin for the past two years.  How much of the afinitor are you taking?  I take the stronger dose, but only every other day.  The only side effect that I've had from the afinitor is the big D.  No mouth sores.  I was taking the afinitor every day, but when I started on the perjeta/herceptin combo, my onc decreased the afinitor to every other day.  The good news is that as bad as the D problem has been, it has been getting better.  Not nearly as bad as it was initially.  Hang in there.  It's suppossed to be a great drug. 

I've not yet had Faslodex, but I know that my onc is saving it in case I need it in the future.  Did you have any weight gain on the Faslodex?

Hi LuAnn.  I don't find the afinitor drug that difficult, only the GI issues and its not all the time.  I really don't have the tiredness.  Since you are Her2nu+, have you taken herceptin? 

I will search for the thread.  I just happened to come onto this one, but will search for the one you mention.  If you find it, please post the info.

Thank you Susan. Interesting. I take the afinitor at night also. I usually don't have much problem in the morning. My big D issues start in the early afternoon and may or may not continue the remainder of the day. I think the fact that I'm on perjeta has made the problem worse. For right now, I'm taking the 10ML every other day and the aromisen every day. The perjeta side effects are suppossed to decrease with time, so I'm hoping to increase the afinitor then. I also find that taking Ativan at night helps to calm my stomach a bit. How long have you been on afinitor and have you had positive results?

oh and positive results you asked too. i had 40 plus nodes for my recurrence, had double free ram 11 years ago. the xeloda brought all nodes back to normal size but like i said didnt last, so 5 more popped up, on a/a i have 2 small ones not changing and no mets anywhere else and i have been stage 4 for 1 /12 years now. so yes, i think the meds are doing there job..extending my life, with quality!

I think you should celebrate. Certainly I can't be the only one who is living with mets for 11 years. Yes stage 1V since 2001 and have been able to work, exercise and carry on my life pretty much as normal. My onc keeps saying that he thinks he can keep this under control for many more years and I hope he's right. Right now it has been a bit difficult with the perjeta, even more than the afinitor. The last few days have been good in that the big D has been much better, so maybe it's true that the side effects get better in time. I really do hope to increase the afinitor. There are so many drugs for ER+. Have you been on Femara? That was the best one for me. Gave me five years with normal Tumor Markers. I haven't had the Faslodex and hoping to keep that for the future as much as possible. Anyway, I think the positive attitude and the exercise really helps.



Hope hang in there. The afinitor did get better for me. Before I was on the perjeta I was taking every day. My big problem was the D. I did lose some weight, but was not too unhappy with that. My appetite is less, but I still do crave food sometimes.

Hi Paola2. Yes big D is diarrhea.  I do find the afinitor causes that problem for me.  But that has been the only major issue, so I guess not too bad.  Actually I find that black tea helps the problem much more than green tea.  I do drink green tea and realize the health benefits, but when the problem is bad, black tea and banannas seem to work best.  Of course we're all different.  Yes mushrooms are so healthy and good to have as much as possible. 

Hi Susan.  Haven't had the headaches, only GI issues, so I guess we're all different.  I was on tamoxifen for four years, then switched to Arimidex after my bone mets in 2001.  That worked for two years, then Femara for five years, which was great.  I was also on Xeloda/Tykerb.  The Xeloda worked for about 5 months.  Everyone I've spoken to has had a similar experience in that it just doesn't last that long.  Too bad, because it was an easy drug to take.  Have not had the faslodex yet.  He did mention it about two years ago, but I think he's saving it.  I don't want to use all my options unless necessary.  Believe it or not, I am back on Tamoxifen.  My onc said that he's seen where it sometimes works again after not taking for many years.  Since I'm her2 +, I'm waiting for the new TDM1.  It's always good to have several drugs on the table and have a plan.  I'm hoping to be able to up the Afinitor soon and stay on my current plan of Afinitor/Aromisin and Herceptin/Perjeta for as long as possible.   Positive energy going out to everyone!!!

Well just to give you another boost, I have had mets since 2006 and still doing very wiell with little disease and decent QOL.

Hope, so glad that you are feeling better.  I fouind also that the afinitor took a while for me to get used to.  I'm only taking it every other day now since I started on the perjeta/herceptin, but I am beginning to feel better and less of the D from the perjeta, so I'm hoping after my next consult tomorrow, we have a plan to get the afinitor back up. 

LuAnn, great news that you are doing so well.  I love to hear positive stories also.  What are you currently taking?  I see that you are triple positive like I am, so just curious what you are doing. 

pearlady, right now I am on afinitor/aromasin.  I worked my way through all the AI's along with hercoptin for over 5 years.  In January it progressed into my lung.  We used navelbine/herceptin for 6 months and it cleared up all of the progression.  We switched to afinitor aromasin because I hated navelibine and was experiencing alot of s/e.  My onc figured I would want a breat and since I did so well on AI's before he has high hopes this will work for quite a while for me.  I always know that navelbine is sitting there waiting for me if I ever need it again... 

my insurance copay for drugs is around 30%. and since afinitor is $21,000 for 90 days i'm not going to be able to handle $7,000 every 90 days. i haven't heard from insurance as to what they're going to pay but my onc did say they would help me sort it out with the patient advocacy group for the drug company. i'll let everyone know how it goes

Susan, so sorry about your headaches.  Is that from the afinitor?  Isn't there anything that you can take?  I can't send ice but am sending positive thoughts and energy. 

Ejnova.  Wow I didn't realize the afinitor was so expensive.  My co-pay is much less than that and I honestly didn't realize the price of the drug.  I hope that the patient advocacy group can offer support.  It's ridiculous.  Between the pharmaceutical companies and the insurance companies, its become so difficult.  Best to you and please let us know what happens.

Hope. just wanted to check in with you to see how you are feeling?  You had said that you were starting to feel better.  I hope that is continuing.   

the cost is a $20 co-pay for me. my ins has been great. sorry cant help with that.

headaches...dont know cause. when i started on the combo i started w/headaches. but also a lot of muscle tightness, neck, shoulders, jaw, and upper back. think the headaches are coming from that. allergic to advill and such. my thought was the aromisen while killing hormones, is also getting rid of the "relaxing" agent that is in hormones. doc and i working on it, but only ice seems to help. need an anti inflammatory that i am not allergic to i think.  actually did try benedryl, and that helped a little..work in progress i guess. hope everyone is having  good day today. hugs to all

Hello everyone,  My mom is scheduled to go on this combo shortly.  My dad just called to tell me that this will cost them $2000 a month.  Dad is 77 and mom is 73, so fixed incomes.  Apparently our govt has taken great pains to exclude alot of the cost from medicare coverage.  Does anyone have any tips about getting aid or help with the cost of this drug?  I can't believe how outrageous the cost is.  Thank you