TNBC - Chemo? - Hair Loss? - PET Scan?

Luah,

Thanks for the info.  You kind of verified my own thoughts that chemo IS in my future as I do have node involvement, tumors exceeded 1cm and I have no major health issues that would prevent my receiving chemo.

Your info on the hair loss also helps me greatly.  In fact, just after I read your post I called my Hair Stylist and scheduled an appt for this Friday to go in and get that short hair cut which seems to be what a lot of women do to "take control for themselves" over the hair loss issue.  I was incredibly surprised at how fast you were able to wear your natural hair after chemo; from what I was seeing online it appeared that women were posting their hair growth to be about 1-1/2" to 2" 7-12 months following end of chemo. So you give me great hope.

Thanks again for your input - it is greatly appreciated (I also posted my questions on the Chemo discussion Board hoping as many woman as possible would see it and offer their responses).

winnieg - Actually, I am not well into chemo!  I just had my PET Scan done today as well as EKG.  I just finally met w/MO last Monday and chemo starts in 2 days - Thurs 9/26.

I know, obviously know about the PET Scan as I had it today.  And I know I will have hair loss due to my chemo regimen (listed as public below).

I've started a nice collection of caps/hats/scarves and have a fitting for wig on Friday.  Although I don't know that I'll wear the wig too often as I've read a lot about scalp sensitivity - so I have my alternatives already in place.

I opted for no port - then I started getting info from ladies at other threads of how toxic the Adriamycin is - well, I'm still trying it via IV and if I need a port, I asked for info on an arm port (that others also have talked about).  Then someone popped in to tell me about a PICC Line.....Talked w/nurse at MO and the arm port IS the PICC line but very bothersome in that it is partially external and requires daily flushing.  Although I had been adamant I was not going to allow anyone to cut into my chest again so soon (it took 6 weeks to heal from BMX!!!); I'm not going to be so foolish and stubborn and burn my veins if they are having issues administring chemo - I'll get the darn chest port and be done with it.

I too have my hair sylist on call to shave me at day 10 as I'm told the AC is like clockwork and I can expect the hair to start coming out in clumps on day 14 - I want to preemptively shave before that happens.  Got a short haircut 3 weeks ago to get used to not having longer hair ..... so I feel I've prepared as best as possible. 

Thanks for the info!  I hope I sail thru mine!!!!!!!!!!  Gosh, I really HOPE I do!

winnieg - thanks for your experience about IV.  I hope my experience goes as well.

About a funky wig - you know, I'm a real wallflower.  But, I think once my hair falls out....being a wallflower is going to be difficult.  I think it's just natural that people look (unless, of course I opt for the wig full-time).

So I'm wondering, too, if it might not be time to "show off" a little w/perhaps an inexpensive funky wig once in a while?  Who knows?  So many changes, in such a short amount of time, and all our lives have been alterted in ways we never imagined....so like you said, why not have some fun with it!

Thank you as well for that thought of the day.  I'm keeping that in my mind for the days ahead!  Truly I am - I think that's a reminder I needed to have (I've always loved that quote but had forgotten it!)

Thanks again,

Lisa

EllenKC - I have to tell you, you look fantastic!  I'm so happy you did it....you know, so many years having to be concerned about professional appearances.  Now you don't have that worry, you entertained a bit of a funky look, and you went for it!  Might I also add the face that goes with the awesome hairstyle if very beautiful as well!

I read a posting you had on another thread and wanted to extend my sympathies on the loss of your husband.  I, too, am TNBC which is what lead me to the other thread that had the info. 

I started chemo, finally, yesterday after 3 delays.  I was supposed to begin 9/26 but issues came up w/concerns on PET Scan and ECG, then surgery to remove another lymph node and needing time to recover.....but I finally got chemo started. 

You are starting chemo rather soon after surgery - 20 days?  Did you have a quick recovery from surgery?  I think it's great that you get to start next week...the way I see it is if we set our minds that it's the best route to take for our situation, the sooner we get it started the better.  I wish I had not had to wait so long, but that's in the past and I finally started so that's all that matters.

You know, you read so many things at the different threads here and get so much conflicting info at websites and from medical professionals....I was told that hair loss was like clockwork and began specifically on day 14 after first treatment (I have a diff regimen than what you have).  But I also have  contacts on BCO that are nearly 4 weeks and just now beginning to lose their hair.  Then there are the websites that say "between day 2 and 21....." - really?  Think they could narrow that down a bit?  I'm just curious as to why you say "3 weeks left with hair" and what you are basing that on.  Granted, I only know what I read so you very likely could have received info that makes you confident in the 3 week time-frame.  I'd just like to know if it has something to do w/your regimen or if you were told that or what?  And are you OK shaving your very beautiful hair sooner than what might be necessary?  I'm torn on what to do - my plan had been to shave it all off on day 10 following 1st chemo but now I'm not sure another lady who has gone for almost 4 weeks!

Well, I guess it goes with everything else we have to deal with.....what happens to one person does not necessarily happen to others and there and no firm answers in many things!

Keep in touch with us on how your chemo goes.  And I just love the "wild" look you chose; it complements you very much!

Lisa

Ellen,

I'm having some issues w/chemo.  Strangely enough, I left chemo feeling exactly the same as I felt going in.  No change, not SE's to complain about, no "weird" taste in the mouth when they flushed the port, nothing.  Last night, however, I started feeling sick to my stomach which I found weird since they gave me, what seemed to me, massive amounts of anti-nausea meds in my IV prior to chemo.  And I took the oral anti-nausea as directed as soon as I got home.  Well apparently feeling sick to my stomach just before bed was far from just my imagination - I awoke at 1:00am and have been up since feeling very nauseated.  Took the meds I was directed to so it seems perhaps I need a diff anti-nausea med for at home.  I'm waiting for the infusion center nurse to call me back to discuss. 

I've also developed swelling in my legs - no clue what is up with that except maybe water retention from steroids?  Have a call in to my PCP and awaiting nurse to call me - hoping one of them can tell me what's up with this.

I'm exhausted, cranky, feel like I could vomit, my head is killing me, and I have to get my Neulasta injection this afternoon so my mood is not likely to improve.  Oh well, that's why I scheduled my chemo on Thursdays - gives me the weekend to deal w/what should be the worst days and hopefully be recouperated enough by Monday to return to work.

Didn't mean to sound like I was complaining there; I'm not.  I had hoped to eek by with few side effects and given what I am dealing with....they really are few when you look at everything that COULD happen.  I'm thankful for not having any of the really bad stuff so please don't take it as complaints.  Just setting the stage for how my first time went.  And I'm dose dense so I get to do it all over again in 2 weeks yippee!  And if SOMEONE would call me back, I might get a change to my meds so I would feel a little better.  But hey, haven't we all gotten used to the waiting game at this point - I know I have.

I think that's great what your hairdresser offered.  I'm fortunate that way too; my hairdresser owns the shop and told me to call her cell phone to bypass her employees.  She will have me come in any evening I choose and shave me in private, when it's dark out, so I feel as comfortable as possible.  We all know we have friends in this world, but I tell you what, these little gestures mean so much to those of us dealing w/cancer and treatment, that I cry when I think of all the wonderful, kind, and thoughtful things those around me have done to try to make my life a little easier in these times of dealing w/such a horrible disease. I am truly a very blessed woman.

Let us know how your first chemo goes.  You take care, Ellen!