Afinitor 1st Script

[Lisa-n-AZ]

So not sure why my first script for Afinitor came in and is only a 14-day supply? I had been on Ibrance for 40 cycles and just failed to ask my MD today. I'm just in the 21 on 7 days off thought process.. I looked on line and did not see a break or off period for Afinator. Will I need to fill this script twice a month? Please enlighten me

Thanks

Lisa

[Arisgram]

I started 4 weeks ago. I was given a box with 4 foil packets, each with 7 tablets. It's odd you only received 2 weeks worth.

Andi

[Red71]

It looks like they often test for blood levels after 14 days o see if they need to decrease your dosage or change it’s timing. Maybe they didn’t want to give you more pills than that until they knew for sure it was the right dosage? I would call and ask.

Elaine

[Barbteeth]

That’s peculiar...ring the pharmacist as you should have a months supply

Barb xx

[Scandia68]

Hi Lisa

Why have they given you afinitor? I was on Ibrance for 2 years before just moving on to xeloda, they never gave me afinitor.

[Lisa-n-AZ]

Scandia

Best I can answer is that fighting Liver tumors and Afinitor was next on my list. I just had this conversation with my Onc on Monday. In the que if Afinitor doesn't work is Gemcitabine, or Abraxane , or maybe a trial, or maybe something new. Not sure why Xeloda is not on my list.

Chemo Log:

Numerous - Zometa Treatments

Feb-Apr 2017, 3 cycles Adriamycin/cytoxan

Apr 17-Mar 20, Ibrance/Letrozole

Mar 20 - July 20, Ibrance/Fulvestrant

Aug 20-Current, Afinitor/Exemestrane

Keep up the fight.

Lisa

[MacroMom]

Thanks for your Chemo Log, it’s so helpful to compare notes. I’m fighting liver Mets too, currently on Abraxane which seems to have worked well for 5 months, fingers crossed it keeps working a bit longer. Afinitor is one of my next options, also Gemcitibane, Piqray and Eribulin. Are you starting Afinitor with Exemestane? Hope it works wonders for you!

[Lisa-n-AZ]

Interesting I had not heard of Eribulin, I will add it to my list for research. My friend in on Piqray and currently NED, this is not an option for me as I do not have Pik3Ca mutation.

I s started Afinitor with Exemestane Monday. I have a scan in 60 days, fingers crossed.

Thanks

Lisa

[ChrisVict]

Lisa

How are you doing on this because I’m starting tomorrow. Please give any helpful

Info. Hope it’s working and side effects are at minimum.

[Lisa-n-AZ]

Chris,

Hello, I had CT yesterday. So good news no progression! My blood work is better than on the Ibrance, except, for my liver counts (ALT AST). The liver is where my cancer came back something like 6 tumors. The ALT/AST are double the high limits, but my doc says we are ok until they are triple. This could be the damage from the tumors or caused by the Afinitor. Going to run blood work again in 2 weeks-might have to reduce dosage.

Now for side effects. Fatigued, but not sure if that is just from 3.5 years of chemo, first was IV Red Devil. My last bone scan did not show any new bone tumors but did reveal numerous degenerative tendon tears in my pelvic/butt/hip area. Which explains my pain when walking, sleeping, and sitting to long. My doc said all the chemo has aged my body 20 years. I teach and do agility with my dogs, now that the hot summer is over....I will be back on the training course try to get some muscle strength back to compensate for the tendon damage.

Mouth ulcers, yes. Usually only 1 at a time. The first couple of weeks it felt like my tongue too big for my mouth. I'm using the Dex mouth rinse. Not sure if it is related to not but I have had 2-UTIs. and now have angry hair folliculs (Folliculitis). Getting ready to start my 3-script of antibiotics in 2 months. I take Afinitor in the evening after dinner, I find that that help with planning life around bathroom visits. Spend some time in the bathroom in the mornings. I try not the plan appointments/events to early in the day.

Staying strong and positive is the best advice I can give. Continue to ask lots of questions, and educate yourself, we have a long battle.

Lisa