Aphinity Trial Pertuzumab

Felt really good today - went to lunch with a friend, had a massage and felt pretty normal - yea!!! What sucks is knowing that next week at this time I won't

I wish we all knew if we were getting Perjeta or not - it's just plain scary having cancer and then getting the bonus round with the Her2 thing - and not really understanding how the treatment we're getting being in the study will impact us long term.

Who wanted to be in this club anyway?????? 

Just had #2 yesterday. Feel pretty blah today. I had 1 day of big D last cycle, constipated the rest of the time, so who knows. My research nurse said she hasn't had anyone on the study with any noteable side effects. Guess we just cross our fingers!

Hi - I don't know about the Tamox - I'm thinking maybe July when we're all done with the Herceptin/P regimen. I am so tired lately - I'm wondering if it's all those lovely chemicals finally doing their thing on me. Have you thought about what happens next? What I mean is for months the treatment has been the primary focus and then once the chemos done there's the rad, but it seems like it'll be less of a big deal on our poor systems - it's all sureal - still. But emotionally I think I am doing better. I don't cry as much - just once in a while - anyway...I am so glad that you are doing OK. I think about you. Are you still working? That's amazing - I don't think I could.

Take care-

Marilyn 

Interesting - I too have had the racing heart thing. I really notice it when I have a lot of salty stuff - the first time was when my friend was visiting and we ate out more than I normally do. I wish I knew if I was gettign Perjeta and I know you all do too. Is your hair gone? Mine went and now is coming back - the whites are the longest and I even had to shave my legs yesterday. I went to the acupuncturist and I think it really helped last time. Today I had a lot of energy - not so much yesterday - do you think it was the Muga? I will get the results probably Monday when I see The Oncologist. WHen I've tried to get him to tell me the likelihood of recurrence he never has said just basically that we're going after it like it was a big deal and it's not - easy for him to say.  I am going to this group and there's a young woman (34 I think) who has stage 4 and she has 3 kids - so scary. It is sooo good to have you to "talk" to.

Write soon I hope....

Marilyn

Actually dog (Oso) was VERY scared of me afterwards. I had to coax him over with treats - but now he is back to normal.

I just reread my pathology report - and fund mixed (good/bad) info on line about prognosis. UGH. Iknow I shouldn't do this but the dr won't tell me ANYTHING. Oh BTW he will be gone for the next month+ so I am seeing other doctors. WOndering if I should just switch as I've only seen him about 2 times out of 5.  This will be chemo #5 on Tuesday - so I'm only one ahead of you. The may decrease the dosage which makes me nervous too. I want the WHOLE thing.  What do you think about changing doctors?

Wow - I am having a BLUE day - I hate these - I know I am supposed to grab life by its' tail and live every moment - instead I feel like crawling up in a ball and crying - Just did a little of that and decided to see what was going on here. Doesn't it just suck? I think I will go and either paint or sew. I feel like I do need to make every moment count and then I get so tired... I think I either want someone to say yes this will get me or I am home free until a ripe old age where I'll pass in my sleep. I know this is impossible - but I want to have a direction. Maybe I need to make my own??? How do you handle your BLUE moments?

I just saw an oncologist today in Chicago who offered me the chance to participate in the Aphinity trial. They are obtaining my tissue samples to send to Italy to see if I am a good candidate. If I am, I will need to start treatment by November 9.

Hi i living in Ireland and saw your posts. Currently i seem to have most of the side effects just after one treatment.

Nose bleeds

Diarrhea

metal taste in my mouth

Heart palpitations

hair loss- getting it shaved this saturday

No nausea or problems with fatigue. Still working every day, second treatment tomorrow.

Fingers crossed it will go better than first one as my heart hit over 220 and they had to stop treatment for 24hours.... long day that was.

Hi Mary Claire~ I am so sorry to hear about your problems with your first chemo not a great way to start.... but I will send you good thoughts that the next one will go better and that this was your body saying what the heck are you doing to me?

My hair went pretty much after the 2nd chemo and is now sprouting! Its encouraging to see - like blossoms after the winter.

I hope you will write us - we are a good group and I have found the compansionship incredibly helpful.

Take care,

Marilyn 

Getting ready for #3 tomorrow.  Then I will be half done!  Yipee!

#3 has been much easier on me than 1 &2.  Right now I am dealing with mild acheyness and cardboard tongue. 

Soltantio- do you actually HAVE hair to wash???   I have had lightheadedness when I have been too active- like yesterday after grocery shopping, I had my mom drive us home because I didn't feel like I could drive.  I have also had ear ringing...  as for the bathroom- you may have just gotten out of bed too quickly- that has happened to me often, without chemo- but the chemo probably just made it worse.

I finally found out that I was approved for the Aphinity Trial and started treatment two days ago. So far only side effects are rash on face and neck and headache. My chemo nurse feels that the symptoms could be related to the Decadron. Only other symptoms are mild abdominal cramps and fatigue. One chemo treatment down, 5 to go.... Waiting for the loss of hair bothers me more than anything else right now - kind of sounds vain, but it bothers me more than the surgery and reconstruction!

Hi - it sounds like the Neulasta to me too. Can you do Neupogen instead? It's 5 shots instead of one but I think the side effects weren't nearly as bad. And the onc. told me to take Claritin so I did a half hor before the shot and there were no side effects except low back on the 5th one.

I am done with the chemo part and will start on just the Herceptin and study drug (hopefully it's the real deal) next week. It'll be interesting to see how that goes. I miss my hair sooo much - feel pretty good otherwise - tired but that is manageable. What are you taking for the nausea?

I went to the radiologist yesterday and go on the 28th to get set up - tatoos (oh boy) and measurements. I really liked him he gave me ots of info so I feel relieved about the side effects which sounds like there aren't a whole lot and the info I got from the internet is old. 

Take good care-

Marilyn

CV- Yeah!  No more chemo!!! You will have to let us know how you feel after just the herceptin/pertuzemab.

Yep I thought so too - but it was only a short time and I have felt perfectly fine since - so who knows. I will be interested to see how your goes. I go in for my rad set up Wed.