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SagePatientAdvocates 
Senior Advisor 
Joined: Apr 15 2009 Status: Offline Points: 4748 |
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 Posted: Jun 21 2010 at 1:31am |
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Dear hummingbird,
welcome to out family. I believe TNBC Foundation is a wonderful resource.. My specific suggestion would be for you to seek a second opinion from a Breast Medical Oncologist (BMO) who is totally familiar with TNBC....Please understand, I am not saying your present oncologist is not familiar. Even if he/she is I would get some additional feedback from another facility. This is a huge decision you are making and I feel another mind may be useful... I would also check with your oncologist to see if FISH technology should be used to determine if your HER2/neu was truly negative. Here are some of the NCCN facilities around the country that may have TN savvy BMOs who may have some thoughts.. Others may disagree but I feel second opinions are truly important. If the second opinion reaffirms the first treatment plan you have the peace of mind that that brings and if a different plan is suggested you have some research/soul searching to do perhaps a third opinion. I know it seems like a lot of time/effort/money...and it is.. I think it is great that you are doing the BRCA testing...if you can ask about expeditied testing (if you are not doing so already)...the information is important and the sooner you have it the better, in my unprofessional view.. again, welcome and good luck to you..you shall be in my prayers and I am rooting for a negative BRCA result for you. all the best, Steve |
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Carol (Tenn)
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Joined: Aug 06 2009 Location: Paris,Tennessee Status: Offline Points: 2707 |
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Posted: Jun 21 2010 at 8:02am |
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Welcome Lindsey and Hummingbird, and hello again to Carol. (feel like I'm talking to myself, but that wouldn't be unusual
 )
I just wanted to chime in to tell you that there is life after tx. I just celebrated being a 2 year survivor and Lillie is 4 yrs down the road. We are both doing great! That's not to say that we don't have concerns from time to time. I think that is a given with cancer. But pushing forward in a positive mode is what is needed. I've heard people say on this site that you just have to get used to the "new you". That about sums it up. Obviously, things won't ever be the same but they will still be good. Just different.
Please come join us on the Spiritual Support thread whenever you feel the need. It's just a click away.
Love and Hugs,
Carol
P.S.
I really need to re-read before I post.....  Edited by Carol (Tenn) - Jun 21 2010 at 8:04am |
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St 2 Gr 3, A/C/T, DD
Radiation x35 Rec chest wall 07/09 Radiation x28 NED 10/24/11 NED 10/5/12 NED 03/15/13 |
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hummingbird10
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Joined: Jun 20 2010 Location: ohio Status: Offline Points: 418 |
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Posted: Jun 21 2010 at 4:31pm |
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Hi Donna, Steve, Carol, and All ---
Thank you all for the suggestions and links. I did receive the booklet from TNBC--
it is great. Steve, I am getting the FISH redone---have had 3 biopsies done ---all
came back the same----but I asked the oncologist if I could have the test done this
time on the tumor. I am going to get the genetic counseling that I requested and
want the BRCA testing (hope I don't have to fight to get that!).
From what I've read if I could choose an onc. and a center it would be Sloan-Kettering
and Dr. Hudis from what I've read on their site.
Is everyone getting this regimen in their chemo: Adriamycin, cyclophosphamide, Neulasta shot,
and Paclitaxel (all together called "ACT") ?
Is there anyone here who has Stage IIIA with node+? Thanks again to all who greeted me.
Thank God for this site. I have not found a support group yet and sure need one!
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Carol (Tenn)
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Joined: Aug 06 2009 Location: Paris,Tennessee Status: Offline Points: 2707 |
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Posted: Jun 21 2010 at 5:35pm |
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As you can see by my stats that is the chemo regimen that I followed. It's pretty much standard for triple neg.
It's good to see that you are taking control of your treatment. I wish I knew then what I know now! But I am doing great...and have no real regrets. Can't change anything anyway so why dwell on what might have been. Have a great evening...
Love and Prayers,
Carol
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St 2 Gr 3, A/C/T, DD
Radiation x35 Rec chest wall 07/09 Radiation x28 NED 10/24/11 NED 10/5/12 NED 03/15/13 |
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hummingbird10
Senior Member
Joined: Jun 20 2010 Location: ohio Status: Offline Points: 418 |
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Posted: Jun 21 2010 at 6:45pm |
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Thanks, Carol, it's good to know that someone has had the same chemo agents.
It's all so overwhelming, trying to learn what all this means.
Is anger part of the reaction? Recently I'm been feeling like I could break all the dishes in
my kitchen (for example). Is this a common reaction (the anger, not necessarily breaking
all your dishes). Maybe I need a punching bag (but not with my left arm). Any ideas?
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dmwolf
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Joined: Jan 22 2009 Location: Berkeley, CA Status: Offline Points: 3619 |
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Posted: Jun 21 2010 at 9:00pm |
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A lot of us get angry. And sad, and scared, and anxious. Breaking some dishes might be just the thing. Do you have any you hate? You could toss them against the wall outside. Yelling in the car is good too, and of course a good long cry.
love, Denise |
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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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Twin Sister
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Joined: Jun 21 2010 Location: Gulf Coast AL Status: Offline Points: 81 |
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Posted: Jun 21 2010 at 9:10pm |
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I had lumpectomy surgery for Stage 2, grade 3 0/3 node IDC at the end of April. After the surgery I found a lump on the same breast. The doc said it was dye used to check out nodes and it would dissapate. It seems even larger to me now. I have had one chemo treatment (Andri/Cytox) and have more scheduled for every two weeks. Is it normal to have that lump of dye so long after surgery?
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Twin Sister
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Joined: Jun 21 2010 Location: Gulf Coast AL Status: Offline Points: 81 |
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Posted: Jun 21 2010 at 9:12pm |
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What do you mean "fail" with first two chemos? How did you know? Do you have a port? Does it always ache?
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hummingbird10
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Joined: Jun 20 2010 Location: ohio Status: Offline Points: 418 |
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Posted: Jun 21 2010 at 9:23pm |
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Thanks, Dmwolf, I may just take the suggestion with old plates against the back of the garage wall outside. Actually the "anger" was very like the PMS I used to get. Had a hysterectomy so couldn't
be that now, but it sure was similar in intensity.
I'm supposed to get a port soon. How is that experience?
Has anyone lost weight during chemo?
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Jun 21 2010 at 9:31pm |
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Twin Sister,
I don't remember having any lump from the dye, but I had a mastectomy. Maybe it's scar tissue, but I'd definitely have your onc or surgeon take a look at it to make sure it's nothing to worry about. Donna |
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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hummingbird10
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Joined: Jun 20 2010 Location: ohio Status: Offline Points: 418 |
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Posted: Jun 21 2010 at 9:34pm |
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Question to anyone here ....
Has anyone had radiation under their arm following an axillary dissection?
What were the issues as to whether or not to radiate this area? Thanks.
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Lillie
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Joined: Jul 10 2009 Location: Eastern NC Status: Offline Points: 3616 |
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Posted: Jun 21 2010 at 9:41pm |
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Hi Hummingbird,
I did lose weight during chemo (10 lbs.) I had no appetite and food tasted horrible. I made myself eat and I also drank ensure and boost to keep my energy up, but over the 4 months of chemo I lost weight. As soon as I finished my treatments my appetite came back and food was good again. Love in Christ, Lillie |
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Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED |
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Serenitity
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Joined: May 24 2010 Location: New Jersey Status: Offline Points: 89 |
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Posted: Jun 21 2010 at 10:06pm |
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Hi Hummingbird
I had 28 rads directly to my left breast incision(7 cm tumor) and surrounding area and axillary incision site, /clavicle and sternum superficially....had an easy time of it. Radiation burns occurred over clavicle and sternum. Ointment (aquafor ) is given to me to use 6 times a day. Area under arm recieved treament well, just don't wear tight bras and tank tops. Loose clothing is best....
Antibiotic ointment with zinc for the oozing superficial burns. Not a bad thing just tender and rather messy if you don't tape a gauze over it.
January ended, and now breast is having "radiation recall" so skin is changing and breast becoming a little heavier. Bra support very important. Good Luck girl.
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aka Happy Go Lucky
member since April 22, 2009 |
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mamawof4
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Joined: Jan 14 2010 Location: Lebanon, Ohio Status: Offline Points: 49 |
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Posted: Jun 21 2010 at 10:13pm |
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I had my radiation inturnal and now my breast has what they call thickening. I hate how it feels and how heavy it is. I just wish I knew how long it will feel like this. Anybody got any idea?
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dx 4/9/09 with stage 2a grade 3,one node cancerous, lumpectony,10 radiation treats via mamma site,8 chemo treat with 4 a/c and 4 iexempra thur clinical trial finished 11/25/09 PALB2 gene+
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Serenitity
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Joined: May 24 2010 Location: New Jersey Status: Offline Points: 89 |
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Posted: Jun 21 2010 at 10:51pm |
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mama I know what u mean...everyday is a new adventure. It's the new normal. |
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aka Happy Go Lucky
member since April 22, 2009 |
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hummingbird10
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Joined: Jun 20 2010 Location: ohio Status: Offline Points: 418 |
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Posted: Jun 22 2010 at 7:21pm |
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Serenitity, thanks for all the rads info. It's better to have some info before
going through it (imho). What is "radiation recall"?
Went to p.t. today, they said I didn't have lymphodema. I was surprised as
my arm hurts and is somewhat swollen. But I got exercises and learned the massage
techniques, so nothing else for that so far.
Anyone out there know when PARP inhibitors are going to be available with an Rx?
Thanks, you guys are the best.
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Serenitity
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Joined: May 24 2010 Location: New Jersey Status: Offline Points: 89 |
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Posted: Jun 22 2010 at 7:33pm |
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Hey Hummingbird
these things I learned the hard way:
no shopping bags or purses hanging from that arm ever!
loose clothes and no bras worn while undergoing rads!
keep all the area under in the armpit and breast rubbed with good emollient like aquafor during all the weeks. not on the mornings of the rads tho..... After showers dust with corn starch.
lots of water to drink.
No deodorants or chemicals specially in the armpit.
hold arm up and massage towards your heart to get the edema going (if you swell)
if you have sternum and clavicle rads, that takes healing many weeks with antibiotic ointment.
Radiation recall (6 mo later) is swelling inside around your breast incisions /maybe with edema and skin looks different and heavier. like an orange maybe bras now are a must for me I have 46DD's so I can't do braless anymore..
 ........good luck chica!Hugs,
Karen
I don't know about parps as I took avastin with ACT. Edited by Serenitity - Jun 23 2010 at 11:04am |
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aka Happy Go Lucky
member since April 22, 2009 |
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hummingbird10
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Joined: Jun 20 2010 Location: ohio Status: Offline Points: 418 |
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Posted: Jun 22 2010 at 9:18pm |
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Hey Karen,
Thanks a ton for all the info. I'm going to get the Aquafor tomorrow--my skin is so dry (was dry
before the surgery, too). I am wearing this after surgery camie, but the "poof" is about an A/B,
and I'm a C/D but the bigger size poof really cut into my armpit area, so I'm looking a bit weird
at the moment. I have to remember to drink more water. I like the idea of the corn starch--that
should be calming.
Karen, I'm intrigued with the avastin comment. Was it in a clinical trial? And did you know if you
were getting it for sure or not? My onc. showed me a trial with avastin, but it is a double blind, and neither he nor I would know if I was getting it along with the ACT.
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Serenitity
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Joined: May 24 2010 Location: New Jersey Status: Offline Points: 89 |
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Posted: Jun 23 2010 at 11:11am |
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Hi Hummingbird
In answer to your question, yours sounds like my trial:
I was in a double blinded clinical trail for avastin cal;ed ECOG 5103 , it was a phase lll part of this drug trial. I knew right away that I was receiving it as my bp was off the chart when I was receiving blind bag. 174/100 They monitor bp all thru the infusion.
The trial has been resumed now. was stopped briefly. you would know if u are receiving it.
Have you been scheduled for chemo yet or rads first?
Karen
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aka Happy Go Lucky
member since April 22, 2009 |
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Carol (Tenn)
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Joined: Aug 06 2009 Location: Paris,Tennessee Status: Offline Points: 2707 |
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Posted: Jun 23 2010 at 11:53am |
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I absolutely hate it when I've typed a long paragraph and the site just refreshes on it's own and all is lost.
With chemo brain that's not a good thing because I lose my train of thought and all is gone.
I mentioned that I lost weight with chemo, about 20 lbs but gained it back when the foul taste in my mouth was gone. I had a problem with Thrush so that didn't help matters either.
I had radiation twice. The first time was a large area but it didn't include my underarm. My tumor was on the lower left quadrant very close to the chest wall. The second time it was more centralized treatment. It was directly on the area where my recurrence was.
As far as burning was concerned, I didn't burn very much with either treatment. Probably with your treatment on such a sensitive area is why it burned so much.
Well, that's my two cents worth. Plus I'd like to invite you all to visit us on the Spiritual Support forum whenever you have the chance or feel the need. We're just a couple clicks away!
Love and Prayers,
Carol
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St 2 Gr 3, A/C/T, DD
Radiation x35 Rec chest wall 07/09 Radiation x28 NED 10/24/11 NED 10/5/12 NED 03/15/13 |
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