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1st Chemo Experience

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amylynn View Drop Down
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    Posted: Mar 27 2009 at 9:32am

 Hi.  I just wanted to share my first chemo exeperience.  I started chemo on March 19, 2009.  I am doing a clinical trial and the first set of meds I  got was Avastin, Taxatore, and Xelode (pill chemo).  They were not able to access my port (which I had placed on March 6th) because they said it was still swollen and after they tried a few times, they went to the hand. 

 The day was long, I was there almost 7 hours.  I had to see the oncologist first and then treatment and also met with a social worker and dietitian.  I felt fine during the whole treatment and so far the biggest side effect was being tired.  I am starting to get a sore mouth from the Xelode, but hopefully that wont get to bad.  They tried to fit me for a wig, because they give you a free synthetic wig, but they said I still have to much hair ( I got it cut before chemo, but I guess it still needs to be shorter).  I guess when I go there next time we will try again.
 
 Anyway, my treatment plan is that I will have 8 rounds of chemo every three weeks and then they will have to stop before I have surgery which will be a bilateral masectomy and oopherectomy and then I will go back for another 10 rounds of chemo after I heal from surgery.  Its gonna be about a year of treatment. 
 
 Well, just wanted to let you know whats going on with me as I have not posted since I joined a few weeks ago.
 
Amy, 36
diagnosed 2/2/09
BRCA 1 positive
 
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Nancy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Mar 27 2009 at 9:53am
Amy,
 
Sorry about them not being able to access your port. Oh that must be so painful. All that surgery for nothing. It should not have been swollen after this amount of time. May I ask if an Interventional Radiologist put the port in? Surgeons are not trained specifically for this procedure, and many do not use a really good port and they are not placed properly.
 
My friend Tai's port was too deep and was put in sideways. Yep...that guy really knew what he was doing. NOT!!
 
So on the sore mouth. Tell your onc that yu want a script for the "Magic Mouthwash". Nip this in the bud 'BEFORE" the mouth gets so bad that you can not eat or drink.
 
Does you treatment center offer the free wigs or was that somewhere else that you went to get fitted. It is best to wait until you are beautifully bald as the wig will not fit properly. Also Amy...click on the TNBC News, Resources & Tips forum, and there is a topic ....Good wishes  where you can get an absolutely beautiful head scarf free.
 
Amy did you know that the women on the site who are 13, 16, 20, 22 years from dx had chemo for a year? There must be something to say for this, as then the cancer cells do not have a chance to regroup and they are flat out exterminatedBig%20smile 
 
Keep posting Amy...we love to hear from you.Wink
Many hugs,
Nancy
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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
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amylynn View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote amylynn Quote  Post ReplyReply Direct Link To This Post Posted: Mar 27 2009 at 10:51am

 A surgeon put it in and I am kind of concerned that its sideways because it doesnt really feel straight.  It was disappointing not to be able to use the port because the way it sounded like it should be able to be accessed right away.  Im not sure about the swelling, but Im gonna hope that was the cause because I really would be upset if the port doesn't ever work.

 Thanks for sharing those encouraging words about the long treatment.  I thought that it was extremely long treatment plan, but I talked myself in to believing that it was gonna be for the best in the long run. 

 My sore mouth is already limiting what I can eat (eating mostly yogurt and milkshakes), so thanks for that tip I am going to put a call in before the weekend, so I can that filled for the weekend. 
 
Amy, 36
diagnosed 2/2/09
BRCA 1 positive            
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amylynn View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote amylynn Quote  Post ReplyReply Direct Link To This Post Posted: Mar 27 2009 at 10:57am

Oh and the doctors office has a wig closet and they give everyone one free new wig, but with the hair that I still had the wigs were not fitting, so I figure by next treatment on April 9th I should be bald Shocked.

Amy, 36
diagnosed 2/2/09
BRCA 1 positive
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 27 2009 at 2:18pm
Hello Amy,
 
That is really nice the doc has a closet w/wigs.  That will save you a trip.
 
I'm sure sorry to hear about the sore mouth and hope you
got that rx.
 
I hope you'll continue to check in with us and let us know
how you are doing and all my best wishes your treatments
are not too rough and do the job.
 
Maybe by next treament you will be able to use your port.
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Mar 27 2009 at 4:53pm
Wow, Amy, that is a lot of chemo, far more than the standard.  If you don't mind saying, where are you being treated, and what are your circumstances (size, nodes,..)?  Which clinical trial are you in?  (Is this ISPY2?)

Very interesting.   You might just be the new wave in TN treatment.
Well, all the best to you. 

Love,
Denise
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Mar 27 2009 at 5:00pm
Denise,
 
Actually, the treatment many years ago, 13, 22 years ago was chemo every week for a year for the TNBC. That is what Rena had 22 years ago, and apparently many other women who are that far out from dx. Many of us are now questioning why they changed the treatment timeline.
 
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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Wendy2 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 28 2009 at 5:31am
Amy
 
I guess I'm not too certain about trials. Is this a trial because you are 'first line' because this treatment is what alot of women are and have been on. I did the Abraxane (another form of Taxotere) Avastin trtment and Xeloda is what will be next, if there is a next and I'm just wondering why this is a trial? 
That is a great bonus to have the wigs available to you - that's really a kind thing.
I had a surgeon put in my port - he does many - he is a "breast surgeon" and I have a power port - there is a topic on these and if you have to have yours removed and a new one put in, I'd research these - they are great. Good luck. God bless.
Wendy
dx 3/06 TN, taxotere/cytoxin x4; radiation x 40; mets. to lungs, lymph nodes 3/08 - to begin chemo 4/29/08 Abx/Avas., 9/08 Avastin maintenance, 1/09 - off meds to see if Avastin causing headaches
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