Aphinity Trial Pertuzumab

Hi chatsworthgirl - your question is great.....and probably just not studied yet.

What I understand is that treatments are only given that are researched based for the type of cancer. That is why people enter clinical trials to study effects of different drugs/treatments on different stages of cancer. Perjeta is FDA approved only for metastatic cancer currently and the Aphinity trial is to study the effectiveness in early stage HER2 breast cancer - that is why we will be followed for so long. It takes so long for the FDA to approve new treatments, even if they might work better to begin with - very frustrating and a big numbers game.



I haven't posted for a while. I just finished HP #11 today - treatments are no problem without chemo! The soles of my feet, toes, and fingertips are bright red still. Neuropathy is still there and annoying. My hair is all coming back nice and thick - soft too. I even have to shave my legs again. My second try at an expander on the left has failed and I will be having a TRAM flap procedure to make a left boobie - right will be silicone. nothing like spending the summer recuperating from surgery, but I get a tummy tuck out of it ... I decided I will stop - no nipple reconstruction, none needed!



My fingernails aren't too bad, but toenails will break off if I try polish, so I am. Just leaving all my nails ugly for now until they get better - just keep them short. Good to hear from everyone!

chatsworth, one thought is that the chemo they give us at first is more toxic than the later stuff, the idea being that it can totally knock out the cancer.  If you have mets, your body can't tolerate the toxicity so the other ones are more tolerable for ongoing treatment.  I don't know if that's true but that's my guess on the subject.

nurse, glad you're doing so well.

jeb, I am having some serious brain fuzziness issues of my own, but not quite for the same reason -- I have a sleep disorder and the drug that I found super helpful for that apparently does not interact well with tamox -- low likelihood of a potentially serious interaction.  So I am trying something else and struggling to get up at 10 a.m.....  and fuzzy minded all day long.  not good.

Thank you, Jane. Well, I have survived the (almost) first 3 weeks. On Monday, I go for my next chemo session. Do the side effects get better (less) or more? Sorry you are having the insurance difficulties.

Hey Madeleine

I live in Maine; not so close to FL! I experienced a gamut of side effects as my body tried to recover from the chemo drugs. The nausea and diarrhea waxed and waned throughout the 4 month period. The side effects that stayed constant for me were a terrible taste in my mouth for about 10 days after each infusion and bone pain with a slight fever after each neulasta shot that lasted for about 3 days. The bone pain became manageable with the use of Claritin and I just got used to the terrible taste. Another side effect that caused trouble after my first infusion was panic. I got some medication for that and started seeing a counselor. The whole thing is so scary; you have to take care of your mental health!

I see that you are about 6 weeks post surgery. Your body was still trying to heal from that when you got your first chemo infusion. It is a lot of insult and injury for a body to absorb but our bodies are very resilient and it will get better! I used to to give my body pep-talks!

I had my last HP infusion on Tues! I feel so relieved to be done, I did not like being hooked to that IV thing for hours at a time. I am a bit disappointed about my new nail problem. I lost part of my thumb nail at work last night and the rest look like they might come off. Ugh. But I have good energy and hair so I will deal with it. I guess my body needs another pep talk!

I am almost one year ahead of you in the journey and I have faith that you will be OK. Being on the trial will insure that you will get good health care and you have a good prognosis. Try not to over think it, just take things as they come. Jane

Take the Clartin in the morning and keep taking it for about 5 days. It really helps. My taste buds are fine now.

Hi - I hope that the Claritin helps - it did for me.  As for tastes coming back - they did!  For me I know it was within the month after the final chemo. SO hang in there - life will get back to "normal". 

Take good care of you!

Hi Madeline - How are you???? When you say the last post on this site - do youmean on the Aphinity one?  I think you should put the cursor on the last number shown and it shouldtake you to the last post...  I haven't talked with anyone - besides this group - that has done the trial.  I think it's so good to do it because I think/hope they will take special care of us. Did the Claritin help?  Are you giving yourself the shots?  I couldn't do it - my husband or daughter (she's a nurse ) did.  Take good care ~

My taste was usually close to normal by the 3rd week. It completely returned to normal a month after my last treatment.

Thanks for starting this up Ladybug! I am in the Aphinity trial too and wondering about what others are experiencing. Not a blogger but joined when I saw one poster decrying the low participation rate. Thought I was getting the pertuzumab because of the nail problems I had. A few lifted quite a bit. That and my blood pressure has been a bit lower, which is a good side effect! Just checked my feet and the soles are a bit red.  

Wow!!!! That gives me chills!  Thank you so much for sharing this.  I see you live in Illinois - I wonder if it's closed everywhere - guess I will "Google" it. Yea us!!!!  Take good care of you - I know there will be chllanges ahead but you can do it!

that is interesting.  I was told awhile back that they weren't taking any more node negative women.

Oh and I should have popped in but I'm DONE!  Last H/P was on 7/26. 

Is a drop in blood pressure a sign?  Mine has always been low.  I did have a few incidents where I got up in the middle of the night to pee and practically fainted, and there was a loud buzzing in my ears.  I don't know what that's about and never got an explanation.  It happened again last night, which is pretty weird, because the prior times it happened was during chemo so not so surprising.  I also feel like I am fighting off some kind of stomach flu, and not fighting it off very well.  Ironically, I didn't get sick the entire time I was on chemo and I think this is the 2nd time PFC when I've had a bug of some kind.

I think I'm in the placebo group.  Oh well. 

Nurse, your intel says that we will find out after all the data has been collected?  What does that mean do you think?  I got the feeling we wouldn't find out for years and years, because I guess they would be concerned about a placebo affect in terms of a recurrence.  Which seems like a stretch to me. 

Sorry, I think I may have misunderstood my oncologist. I asked my research nurse about finding out about getting the Perjeta vs placebo once the study was published and this was her response:



"Great question. Unfortunately it is not likely that you or we will ever find out. There are two instances in which the pharmaceutical company typically agrees to unblinding. Those are:



1) if it would be imperative to a treatment decision down the line

2) you experienced an unexplained side effect in which case it would be helpful to know if you received the drug



Hope that helps."

my research nurse also told me that most likely I would never know- unless I had a reaction during a tx, OR had a reoccurance.

I wanna know!

exactly-I hope none of us ever has a reason to find out!

wow, 2025 is the end date?  I think it's kind of nuts -- I guess it's about the placebo affect.  Frankly I can see that making a difference with respect to side effects or even to some small degree recurrence in the first few years, but 10 years from now my belief as to whether I did or did not get the pertuzamab is going to affect whether I have a late recurrence?  Makes no sense to me.

Did anyone in the group have noticeable side effects?  Does anybody feel like they clearly got it or did not get it?  My SEs were pretty minimal all the way through, so I am thinking I was in the placebo group.