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1 new member - 2 questions!

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Topic: 1 new member - 2 questions!
Posted By: pinetree
Subject: 1 new member - 2 questions!
Date Posted: Dec 28 2008 at 11:22am

Hi! I was glad to come across this TNBC site and have enjoyed reading many of the forum discussions so thought I'd join in the fun and hope I can give back as much as I will receive!   I am 3 weeks into recovery from my bi-lateral mastectomy w/reconstruction - doing great!  I can write more personal information later, but thought I'd keep this post to the two questions I have that I could use some feedback on to help with my onc appointment tomorrow. I start chemo in approx. 2 weeks.    

First -  I would be interested in feedback from others on how you approached clinical trial involvement decisions?   I have been provided info on participating in the ECOG E5103 Research Study which is a Phase III  dbl-blind Trial of adding Avistin to the AC & T regimend.  At this point, I do not know if I would even be selected to participate, but the general information indicates I would likely be considered.  I am apprehensive on participating due to the stated information that Avistin's likely side affects include risk of high blood pressure and blood clots.  In addition, I've come across some stats that although Avistin has been shown to prolong recurrence, this only to be a  matter of months - not years.
 
Second - work!  With the dose-dense AC + T regimend I would appreciate feedback on which week-day other  women have scheduled their chemo treatments  to maximize the "good" days for work vs. your "sluggish" days for weekends for recovery.  Is there a general rule that "X" days after chemo you feel good, and "X" days after chemo you feel bad?  I had first considered chemo treatments on Friday's, but possibly mid-week would be best?  I work M-F.   My employer will support me no matter how many days I need off, but this is a concern of mine. 
 
Thank you so much!


-------------
Melissa
Lumpect. 10/28/08,
DX 11/3/08,
Meddulary Invasive TNBC
BRCA1/BRCA2 Neg, 0 nodes
12/8/08 Bilat Mastect
w/reconstruction
Jan 09 will begin
AC every 2wks x 4
T every week x 12
ST 2/Gr 3



Replies:
Posted By: Nancy
Date Posted: Dec 28 2008 at 1:55pm
Hi Melissa,
 
I cannot answer your question as to the Avastin, but the info that you have on the med is correct. I have posted links on the med as has Pam (trip2).
 
I can tell you that my daughter Lori had her chemo on Friday and did not go to work the following Monday or Tuesday. First chemo she went back on Tuesday, and thought she woud not make it through the day. After that, she did not go back until Wednesday.
 
It is the 2nd or 3rd day usually when the meds really start to kick in. However, her chemo was every 3 weeks, so that meant that she really did not miss that much work. Lori teaches second grade and had just been offered the position one week before diagnosis.
 
This is your time Melissa, and you really have to take care of your body. Perhaps you will be able to go back on a Monday after Friday chemo. Lori said that it was the 9th day after chemo that she started feeling "somewhat" better. Lori is a runner, and walks ,runs or bikes daily, and works out at a gym 3 times a week. Physically she was in super shape when dx. The chemo took it's toll on her.
 
The chemo and rad tips are on the last page of the TNBC News, Resources & Tips forum. You might want to print them out.
 
Welcome to the site and please know that we will be here for you every day.
Hugs,
Nancy
 
 


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: CarynRose
Date Posted: Dec 28 2008 at 1:58pm
Dear Melissa,
 
Avastin is such a new drug that they really don't know how long it will prevent recurrence.  Right now, the stats are saying months, but those are relatively old stats.  I will tell you that they are having great success with Avastin and TNBC in advanced BC (like mine).  Whether or not I'd do a clinical trial is an individual decision.  I know a number of women who are doing it.  I can tell you that the HBP wasn't bad for me.  The nose and tushie bleeds were the most pain, but it was worth it to keep me in remission for 11 months.    At this point, I haven't done any clinical trials -- I kid that I'm not that altruistic just yet and I suppose if a time came when there were no other options for me, I'd do it, but as long as there are options to keep me alive and healthy, I'll do those.
 
As far as work goes, I can tell you that you will want to be flexible with yourself.  You might start out willing and able to work, but as chemo goes on, its effects are cumulative and can wear on longer, so what you would think of as a treatment, say on a Thursday and crashing on the weekend could last full on into the following week. 
 
I had a different type of chemo, but I got it on Thursdays.  I was fine on Friday, due to some great premeds and steroids,  and worked (at first).  Then Saturday, I did a few loads of laundry and at 10:30 am, it would hit and my body would just STOP.  It would restart on Monday morning. 
 
However, as the treatment went on, I'd need to have treatment on Wed in order to come in on Monday and then have to take off Fridays.  Eventually, I went on short term disability because, frankly, my health was more important than my job.   
 
Oh, also, there will be days that you'll have to go in for injections of neulasta and/or blood tests, so there is no hard fast rule.  
 
I can tell you that my cousin went through it and eventually worked 3 days a week and was off 4.
 
OK, I'm rambling.....
 
Hope this helps.
 
Caryn


-------------
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10


Posted By: cweed
Date Posted: Dec 28 2008 at 2:19pm
Hi Melissa,
 
I think it is different for everyone but I had my chemo on Mondays (dose dense, so every-other week).  I usually felt the brunt of it Wednesday - Thursday and was slugglish other days but usually better by Monday.  I could schedule my good week and bad week for activities.  Doing it on Monday was nice because I never really had a weekend where I felt like I couldn't go do things.  That was actually a pretty nice respite.
 
Whatever you do, let yourself rest.  I worked through chemo and also had a very understanding employer.  I came and went as I pleased and worked some from home.  I was very fortunate.  Keep in mind that you will need some mental down-time too so don't push too hard.
 
Keep the faith, keep moving forward and you will do great.
 
 


-------------
Cathy, Winter Park FL
Dx 12/05
3 tumors, triple negative, 6+CM, 0/13 nodes, stage 2b
Double mast
AC+T, dose dense
radiation
NED!!


Posted By: pinetree
Date Posted: Dec 28 2008 at 4:54pm
Thank you Nancy, Caryn & Cathy for your quick responses and good information.  The prospect of chemo and the decisions to be made during this journey is difficult for me to comprehend; but am thankful for the caring support of women like yourselves, who are supporters and survivors of TNBC women.  You offer sound information to help with my education.    Thank you for caring.   

-------------
Melissa
Lumpect. 10/28/08,
DX 11/3/08,
Meddulary Invasive TNBC
BRCA1/BRCA2 Neg, 0 nodes
12/8/08 Bilat Mastect
w/reconstruction
Jan 09 will begin
AC every 2wks x 4
T every week x 12
ST 2/Gr 3


Posted By: krisa
Date Posted: Dec 28 2008 at 8:03pm
I had chemo on Thursday and a neulasta shot on Friday and crashed on Monday.  There was no way I could have worked and I admire the women who worked through chemo and/or had children at home to take of.  It was all I could do to take care of me.


Posted By: Cheryl51
Date Posted: Dec 29 2008 at 5:08am
I found it was sometimes hard to predict how I would feel after chemo.  I know that the day I got infused I had to go home and pass out.  But I did continue working.  I got some meds for nausea that got me through.  I also found that focusing out on others helped me cope with the whole damn thing!
Best of luck,
Cheryl51


-------------
Diagnosed 3/07, Stage IIB, Grade 3, 2/10 nodes positive


Posted By: Diane in AZ
Date Posted: Dec 29 2008 at 6:22am
Hi Melissa,
 
My chemo was given on Wednesday afternoons and it took about two days for everything to "sink in."  By Friday after lunch things would start downhill but I was able to get through half a day at work and go home before I started feeling really wiped out.  Of course, I think they just told me at the beginning when I was going to have chemo (not when I wanted it) but it turned out pretty good having it on Wednesdays.  That way, I had the weekend to rest up and perhaps Monday also.   For me the first week was the worst, then you start climbing out.  And you have your low blood counts from 7-12 days as I recall.  Your doctors will give you everything they can to make things easy for you, from nausea drugs to pain meds to "Magic Mouthwash" if your mouth gets sore.  I was able to work most of the time.  With me, I ended up in the hospital the first three times with infections but that doesn't happen to everyone.  I've heard of many women who go through chemo and don't miss a day of work.  I hope you're one of them.  At any rate, good luck in the coming weeks.  Be strong and focus on the light at the end of the tunnel.
 
Best Wishes,
 
Diane


-------------
Diane

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all



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