Aphinity Trial Pertuzumab

Hi - I am in California too and have just signed up for the trial. My sister told me about this group - yahoo!  I haven't started any treatments yet but am so anxious/nervous about all of this.  How are you doing?  I am looking forward to hearing from you both , and hope ladybug1 that the diarreha is better.

Hi - I just found out I start Chemo Tuesday - July 10! I am soooo happy to be starting.  I know exactly how you feel - this down time is crazy - and then I read way too much on the internet and get bonkers - or more bonkers as the case may be - LOL.

I am in Northern California - near Oakland.  Where are you going on your road trip.  I want to get away - maybe I can after I get the 1st treatment.

I hope we all get Pertuzamab too !!!!! 

Hi - good to have you girls in the group.  I'm going to be getting Taxotere/Carboplatin and Herceptin and... of course the study drug or imposter.  I'd  REALLY appreciate hearing about any side effects you are getting or any tips.  Hang in there.

First chemo last Tuesday - did OK Wednesday and Thursday, then Thrusday night and yesterday BIG time nausea - not fun - but got a different med - Zonegran and Antivert and seem much better today. My head is starting to feel like it does when you have a really tight ponytail so maybe my hair is getting ready to go. No diarreha but haven't poohed much either. So glad to have 1 down.  How are all of you?

Hi ~ So good to hear from you Soltantio~  I had my first chemo July 10. Same drugs as you and will do 1 treatment every 3 weeks - so my next one is this Tuesday.  My hair is beginning to come out  luckily I have very thick hair so despite the fact that it looks like a small rodent came out in the shower I still look OK.  I had shoulder length hair then got it cut REALLY short but it's still very weird to have it come out. 

How's your shortness of breath? That's scary sounding. I am a little nervous about round 2 but at least I know what to expect... they changed my nausea meds to Zofran as Reglan did NOT work, and I am getting hydrated Thursday which should help too. I'll let you know.

Take good care everyone,

M 

Hi - got through the second one OK - interesting was that I got nauseous when they were giving me the test drug - my friend the oncolgy nurse said it could be anything - but I wonder if it means I'm getting Perjeta???? Also found out that I haven't been tested for the genetic component of this because staistically I don't have a high change of that. Hello???? I didn't have a high risk of getting BC either.  My husband says not to do the test because then we'll live in the uh-oh land but I have a daughter who is 24 and I think I should do it for her... and for me to because it sounds like the treatment would have been different - i.e. prophalactic masectomies - oh my... thoughts please???

Yep - the whole thing sucks.  I had a 2nd hydration yesterday and feel more human today - but I can't get rid of this weird taste in my mouth and tastes are changing  I recommend hydration - it gets a bunch of fluid in you so that you get rid of all that crud. And it's easy - just install and voila - sounds like an ad - LOL.

I will try to find out when they are going to let us know if we got the test drug.  How did you find out the study's only half full? I think I heard something about 13 years then we'll know... that seems OK - I'll be getting close to 70 then - yikes... when did that happen? 

Hi the link worked Soltantio, thanks! Interesting that my C drug is Cytoxan ... Seems like everyone else is on different one?



I am TCx6 and HPx12 and I guess the P could be either the Pertuzumab or the Placebo.



My onco told me it is double blind as well. I'll be like you Soltantio, busy comparing side effects but I bet even that won't be definitive, since everyone is different! I start next Weds. It has been intense jumping through all of the fiery hoops to make it but I am glad I did.

Hi all ~  I posted Soltantio but I guess I neglected to actually hit the right button to have it show up - go figure....   Anyway I hope everyone is doing well. I am doing pretty good this week. I HATE seeing myself without hair!!!!! It is so weird. And I also HATE wearing the stupid wig or the "obviously you are going through chemo scarf". I have decided that these are for other people's comfort (for the most part) and I guess for me so I don't have to deal with stupid questions or sympathy from someone who doesn't know me.

I have learned that Ativan is a drug for all occassions - nausea and anxiety and it works! Also Reglan and Zofran seem to work for nausea too.  As for protein I am craving it - Flor tortiallas with mozarella cheese is my go to food.  When I begin to get hungry I make it quick and it works.  I have been walking which has felt so good - just to move. And I actually have had more energy which makes me feel human and not like a slug

I haven't been constipated and things have been moving so feel REALLY good about that.

Take care Test Sisters!!!

CVM 

Got my start date today- Sept 5! Holy cow this drug trial has alot of rules!  I had my echocardiogram rescheduled (apparently earlier than was 'supposed to' per trial protocal, so it made them have to hurry up and get me ready.... They still have to send my tissue sample from surgery off to Milan to be looked at there for the official trial stuff and now they have to hurry quite a bit more than they thought they would.  Oops!  At least I have a date now  

How long is it taking for the chemo?  I am looking at the schedule and it looks like it is over 6 hours

Hi d ~ Soltiano is right  - it takes forever the first time - mine was started about 10 and we got out there about 6. The second time was faster.  Don't you think you should be able to accompany your tissue to Milan?  I do - it only seems right.... LOL

It's good to have you join our group - that I know none of us EVER wanted to be a member of.

S - how are you doing?  I am getting sort of nervous about round 3... and then what comes next as far as symptoms. I have been SO sleepy - ugh - and I know I need to walk - but REALLY????? Anyway... hope you are doing OK.

M 

Hi - Good for you swimming - yea!!!!  I am impressed - you are a tough cookie.  I, on the other hand, feel like a slug.  I took that shot Neupresta (?) instead of Neuprogen and it made me feel SOOOOOOOOOO nauseous.... ick!!!!!!!!!!

Funny about  your nurse e-mailing you about that stuff. Mine has been incommunicato lately - a little too uncaring though if you ask me. Not that I need her 24/7 but a little check in would be OK. I guess it's either feast or famine (did I spell that right????)

Take care~

Marilyn 

It really is strange on how differently each onco approaches ... I had the Neulasta shot the day after my chemo and then had awful bone pain (despite starting on Claritin the day before chemo) and taking it for about 10 days in total. Tried to manage the pain with advil but eventually had to take my pain med to deal with it.  Might be worse because I have arthritis, just not sure, but it stunk. Was glad when it started to ease off about 5 days out!

Biggest side effect for me with the chemo has been the runs (yippy skippy) and I am just using imodium to manage it.  Have lost 11 pounds since chemo and my blood counts on labs last week were a little whacked but no clue what it all means yet.  Assuming I go back for more this Weds  

NOOOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  I want us both to have it.... and who knows, right?  I have no idea if I'm getting it or not. Everything effects everyone in a different way. DO NOT fret.  The important thing is that having it, or not, that we beat the crap out of it so it NEVER wants to visit us again.