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Post Options Post Options   Thanks (0) Thanks(0)   Quote Pink Warrior Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2011 at 1:40pm
Oh Linda - I had that horrible burning with the A tx and it was less with the E.  Once I switched onc's, my new one told me it was mucositis and he sympathized with understanding.  Mine was a result of over dosage though and the ulceration went from my throat to my pooper shooter.  I compared it to someone pouring gasoline down my gullet, then giving me a gasoline enema and lighting a match at both ends.


Dx:10/09,IDC Stg 2,Gr 3,TN
BRCA 1&2 -
Partial DD EC/AC
Local recur 11/10
BMX 12/10 Right proph
TC x 4 Rads x 33
9/11 Skin mets, mediastinal & hilar nodes
Abraxane/Avastin
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Pink Warrior Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2011 at 2:14pm
I wanted to post this video - not sure if I have before.  I know that I've shared it on my Facebook.  

My 15 year old son, Joshua, sings this song to me.  I raised him as a single mother for many years and I didn't think we could be better friends or any closer - until I was diagnosed last year.  He's my angel and my baby boy and I love him with everything I've got - one of the things that this disease could never take away.

A little insight into the song, the lead singer's brother has battled leukemia and he wrote this song for him.


I hope you enjoy it as much as I do.  I can't watch it without crying.  The message is positive and powerful and also reminds me of how much all the ladies and gentlemen are here for each other - picking each other up when we fall, through the good and the bad, never losing hope and never giving up.
Dx:10/09,IDC Stg 2,Gr 3,TN
BRCA 1&2 -
Partial DD EC/AC
Local recur 11/10
BMX 12/10 Right proph
TC x 4 Rads x 33
9/11 Skin mets, mediastinal & hilar nodes
Abraxane/Avastin
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TracyAMac Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2011 at 4:03pm
Kim, that is a beautiful song your son sings - and how nice that the two of you are so close

That's a good question about A - I will ask him when I see him in Feb. Iit has been around for ages and is still very popular.  I had it for 9 months along with Methotrexate and Cytox. 30 years ago (no steroids, anti-nausea or Neulasta meds back then!)  My onc. still uses A  - I think he wanted me to feel better about not being able to get it this time around by citing the research study. 

Tracy in Toronto
TN&non-TN tumors April/10 Gr3&2;1 metaplastic
Rmast.1/9 nodes w/isolated t.cells
Taxotere&Cytoxan x6
Bone cancer 1980 age17;surgery&chemo AC+Methotrexate
BRCA-ve
On hormone therapy & Metformin Trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2011 at 4:43pm
Kim....Hug
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote abcmom Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2011 at 6:48pm
Thinking about you Kim!  Hang in there sweetie, we love you!
 
Keri
Diag 11/06/09 @ 40; Diag w/ TNBC Stage IIA, Grade 3 12/01/09 Node Neg. Dble MX with Recon 12/09 (twice)
Chemo 1/13/10 Chemo done 4/22/10 More recon surg 07/10, PET/CT Scan clear 07/10 NED 07/11
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LRM216 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2011 at 8:14pm
Geez, Kim, that had to be horribly painful - I am so sorry.  God, the things we go through to stay alive and fight this beast!
 
Your son's song is absolutely beautiful.  How bittersweet that this child, and that's what he still is, has to shoulder this with you.  How painful it is for our children and must be so frightening to them, no matter what we try to tell them.  I girls are adults, but I raise my 15 yr. old grand-daughter, so I know from where you are coming.  Her mom, my youngest daughter is in and out of hospitals all the time, for many serious medical conditions that sometimes go all awry on her.  She's presently in the hospital getting her feeding tube in her stomach changed and they are trying to stabilize her brittle diabetes, which she has and goes all over the damn charts, no matter what she does.  She had her pancreas removed about 5 years ago - so became an immediate brittle diabetic.  I am also a widow and have to work full time, so getting this cancer was just what I needed!
 
Anyway, to get back to your son, you must be so proud and rightfully so.  He will keep you strong and fighting - they need us so.
 
Hugs,
Linda
Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg
4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2011 at 8:20pm
Kim,

Great song.  I'm so glad you're close to your son - aren't they wonderful?  Having two sons I've found them to be caring, wonderful and very protective of their mother.

My bf cousin is battling leukemia.  She had a recurrence after 13 years, which they said they've never seen for her type.  The past few months she's undergone intensive chemo and just had a bone marrow transplant from a donor that matched perfectly.  They are hoping it will cure her this time.

Donna
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2011 at 8:24pm
Dear Kim,

May G-d bless you and your marvelous son..

Had me crying, too...

When my daughter was dx I told her “if I take your cancer I would take it in a heartbeat” and she said “I know Daddy, I know.”  I wish I could save her is the line from the song that rips right through me..I used to walk the streets of Manhattan thinking that 46 years ago..knowing I couldn’t but wishing, nevertheless...

Just beautiful, Kim...G-d has blessed you with this child and he has been blessed to have you as his mom.

hugs,

Steve
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote overwhelmed Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2011 at 8:38pm
TracyAMac,
Thank you so much for this!  I have agonized at time that I decided to be part of a trial where I got TC and Avastin instead of TAC.  I have questioned what I have done to myself in light of the results of the Avastin trials.  I haven't let myself give up on Avastin, but I have been concerned from the beginning that I didn't get Adriamycin.  When the initial FDA concern about Avastin came about in July I was scared.  Yet someone on this site reassured me and said that they had heard that the Taxotere and Taxol were thought to be most important in treating TNBC.  I still don't know if I made the right decision when deciding to participate in this trial, but you have given me some reassurance that bypassing Adriamycin may not have hurt me since I did get Taxotere.
 
Lori
DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TracyAMac Quote  Post ReplyReply Direct Link To This Post Posted: Jan 05 2011 at 12:01am
Hi Lori.
As has been said on this site so many times before, we and our dr's are never sure how each of us will respond to various drug protocols and so many factors affect our outcomes, but I am glad the articles re Taxatere gave you some reassurance. I was scared about not being about to have A for my BC, but I have confidence in my onc. who is always up on the research and speaking at conferences. I hope you don't regret participating in the trial - they are so important to all of us and hopoefully you also recevied extra monitoring for having been in the trial.

Tracy in Toronto
TN&non-TN tumors April/10 Gr3&2;1 metaplastic
Rmast.1/9 nodes w/isolated t.cells
Taxotere&Cytoxan x6
Bone cancer 1980 age17;surgery&chemo AC+Methotrexate
BRCA-ve
On hormone therapy & Metformin Trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote EileenF Quote  Post ReplyReply Direct Link To This Post Posted: Jan 05 2011 at 6:21am
what a beautiful song and what a wonderful relationship you have with your son.  It is easy to understand why you are so proud of him and  you should be very proud of yourself for raising such a caring son as he is a reflection of you
7/09:IDC,stg 3,Grade3, pos lymph;chemo ACT;12/09 lumpect n lymp disect;1/10 bilat masect/tis exp; rad cmpltd 4/10; 11/10 stg 4 lungs chest axil mets & parp trial;3/11 IBC diag;
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Post Options Post Options   Thanks (0) Thanks(0)   Quote overwhelmed Quote  Post ReplyReply Direct Link To This Post Posted: Jan 05 2011 at 7:21am
Tracy,
I know that trials are so important.  Most of the time I don't regret being involved in this trial.  When I started I was so excited to be put in the Avastin arm.  That was a month before the FDA reported the new trials and the concern over the results.  I still believe that Avastin works very well for some and not for others.  It makes me wonder if there isn't a particular subtype that hasn't yet been identified where Avastin works well.  But, we know from this site that women are doing well with it.  I also believe that they have no real idea yet if Avastin works for early breast cancer.  That is the trial I am in.  I wish the results of this trial weren't years off.  But, stage 3 clinical trials take a long time.
 
Thanks again!
 
Lori
DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TracyAMac Quote  Post ReplyReply Direct Link To This Post Posted: Jan 05 2011 at 8:55am
Lori, I can relate to your feelings about these long term trials - I guess we should benefit now from those of us who did earlier trials though it seems there has been few if any long term TN studies and certainly none I can find re Metaplastic TN other than studies related to prognosis. I was told that in the case of the Metformin trial I am on, they would consider "unblinding" the study if the first couple of years show great results. It is a double blind study with 50% on placebo so I don't know if I am even getting M but I am having a few mild side effects so hope it is the real thing and not just my hopeful mind!  Also, I was told that if anything better comes along before  the 5 years is up, or if I have any major problems while on it my onc can find out if I was on it and take me off the trial if needed.
Tracy in Toronto   
TN&non-TN tumors April/10 Gr3&2;1 metaplastic
Rmast.1/9 nodes w/isolated t.cells
Taxotere&Cytoxan x6
Bone cancer 1980 age17;surgery&chemo AC+Methotrexate
BRCA-ve
On hormone therapy & Metformin Trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Pink Warrior Quote  Post ReplyReply Direct Link To This Post Posted: Jan 05 2011 at 12:38pm
Update

Day 3 - Weak. Woke up with a horrible headache which I blame on the Neupogen.  He had given me Neulasta with the last chemo but opted for Neupogen this time.  The headache is all but gone now that I've been up moving around a couple of hours.  

Mild nausea.  Loose stools.  GAS!!  Had gas cramps early this morning - all lower abdomen, almost like menstrual cramps.  I was able to sleep through them though.

Can't find a soul to come and sit with me, so it's just me and my 4 year old again today.  Half tempted to pull my 15 year old out of school but I keep pressing on thinking I'll make it til 3:00.  

While this is tough, it's not as bad as the Epirubicin.  By day 3 on that, I was down for the count and there was no getting up except to hit the bathroom and then right back in my recliner.  I certainly wouldn't have been at the computer.  I felt really good last night, so this morning was a bit of a surprise.

xoxo
Dx:10/09,IDC Stg 2,Gr 3,TN
BRCA 1&2 -
Partial DD EC/AC
Local recur 11/10
BMX 12/10 Right proph
TC x 4 Rads x 33
9/11 Skin mets, mediastinal & hilar nodes
Abraxane/Avastin
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Post Options Post Options   Thanks (0) Thanks(0)   Quote abcmom Quote  Post ReplyReply Direct Link To This Post Posted: Jan 05 2011 at 12:54pm
Oh, Kim, I am sorry to hear this.  Hugs to you!
Diag 11/06/09 @ 40; Diag w/ TNBC Stage IIA, Grade 3 12/01/09 Node Neg. Dble MX with Recon 12/09 (twice)
Chemo 1/13/10 Chemo done 4/22/10 More recon surg 07/10, PET/CT Scan clear 07/10 NED 07/11
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 05 2011 at 1:10pm
Kim what a bummer to wake up to these troubles.  One thing you might try to do is drink one of those protein drinks like Ensure or Special K, generic tastes the same to me.  They can really help the tummy, chemo can be so hard on our tummies.
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mjhoover@gmail.com Quote  Post ReplyReply Direct Link To This Post Posted: Jan 05 2011 at 1:36pm
Hang in there Kim! You side effects sound hard, but keep telling your onc and onc nurses about them and be sure to address them early (like taking Zophan at the early sign of nausea). I waited too long one time and ended up getting IV fluids and nausea meds since the nausea was too far gone. I even tried the Phenegren and it didn't help much! We are with you as you struggle through this! MJ
7/08 IDC L Br, mast 1/16 node +,St 2 gr 3, 6 rounds TAC
7/10 Mets to lungs, nodes abdomen BRCA-
8/10-1-11Abraxane/Avastin
7 11 3.3 cm tobrain sstem/rt cerribellium WBR 15 rds
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Post Options Post Options   Thanks (0) Thanks(0)   Quote overwhelmed Quote  Post ReplyReply Direct Link To This Post Posted: Jan 05 2011 at 2:01pm
Kim,
I'm so sorry you are sick with no one to help you.  These side effects stink.  I do hope they pass soon.
 
Lori
DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 05 2011 at 4:26pm
Kim,
Are you on Zophran or Emend?  One of them gave me headaches, but I never figured out which one since I took them both at the same time for 3 days after chemo.  I hope that your teenager is home soon to help out with the little one.  I had almost non-stop diarrhea on chemo no matter what  took, but I never got dehydrated because I was able to drink 2-3 liters of water daily.  Praying that tomorrow is a better day.
Lee in Denver
dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote overwhelmed Quote  Post ReplyReply Direct Link To This Post Posted: Jan 05 2011 at 5:46pm
Aloxi, which I was given with chemo can also cause headaches.  I had one that lasted for days.  So, they switched the anti-nausea med they gave me with chemo and I didn't get any more.  I also heard that Phenegren can cause headaches.  I'm not sure about Zofran.  I don't recall hearing about that one.
 
I hope that as the day wore on you began to feel better.
 
Lori
DX ILC TNBC 3/10 at 50, Stage IIb; Grade 3; 5.1 to 7 cm,SNB neg;TC-6 rnds, 30 rads, Avastin-18 rnds, BRAC 1&2-
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