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SusanE1104 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SusanE1104 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 18 2010 at 2:17pm
I hoping for the best for you, Donna.  I know what you're going through, not only with the scan results, but with your mom too.  I'm sorry it's hitting you all at once.  I'm glad you can depend on your husband now.
Susan
Susan 62 1987 Stage 1   1/09 Stage IV bilat. mast. liver mets BRCA1+ Taxol & Avastin
8/09 NED
12/09 liver mets Taxol/Avastin
4/10 liver mets
11/22 Parp Car/gem
parp failed
2/2011 Ixempra
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Nov 18 2010 at 3:08pm
Dear Donna,

prayers and +++++ vibrations continue...

sorry about your mom..

in your corner,

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 Morgan513 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 18 2010 at 4:14pm
Thinking about you Donna!  Sending good vibes your way!
 
Lorrie,DX 04/08, Stage 2A Medullary, N0, M0; Lumpectomy, Chemo (TC x4) and Radiation. Enrolled in Bisphosphonate Phase III study.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote hhhh Quote  Post ReplyReply Direct Link To This Post Posted: Nov 18 2010 at 4:21pm
once again, wishing u the best today donna. good luck.
Daughter of one of the most amazing women in the world...

she was diagnosed 8/2010, had lumpectomy, TAC X 6, rads.

52 yrs, stage 2A (3cm, no nodes), triple neg, grade 3
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Nov 18 2010 at 5:05pm
Donna, I'm thinking about you all day.    Whatever happens, we're here for you.  But I'm guessing that about now you are hearing words to put your mind at ease.   If so, I hope you kicked your Dr in the shins for not calling you the day before yesterday.
love,d
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 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 18 2010 at 8:56pm
Well I wish I could give you good news, but it is what it is.  I have a local/regional recurrence in the internal mammary node.  Yes, it's very rare to get an isolated recurrence in the node.  My onc believes it was from the original tumor and that there were probably a few cells in the node and was never picked up on the original MRI.  The chemo wasn't effective wiping it out or allowed a few cells to remain to grow again.  The encouraging part is that it's about 14 months post chemo or 17 months post surgery and the cancer is still very small.  She said it wouldn't have been caught on a CT scan and we were fortunate for it to show on the PET.

So here's the recommended plan of action.  She wants to throw the big guns at it and enroll me in the clinical trial of Iniparib in Combination with Gemcitabine/Carboplatin.  After chemo, of which we'll do periodic scans to see if the node clears up, I'll have radiation to the node.  The parp trial is the lottery so there's no guarantee I'll get in right away.  However, I think we can still do the chemo and add the parp when I get chosen from the lottery.

I'm getting a second opinion also.  I'll be calling tomorrow to arrange for it.  Depending on what I decide, I most likely will start chemo again in a couple weeks.  This time I'll need a port and most likely will lose my hair again.  Yuck.

So my dear brilliant friends, any suggestions, ideas, questions to ask? 

I know you'll all be here for me and help pick me up when I need it most.  Right now I know I'm not thinking all that clearly.  My dh and sons took the news worse than me.  My hubby has been by my side through all this and I'm more concerned how it's impacting him.  I think I was prepared for it and this past month of waiting was the most tortuous time, similar to the first dx.  I'm actually calmer now I have an answer.  I knew the moment my onc walked into the office and looked me in the eye what the diagnosis was.   She spent a good hour with us answering all our questions.  She truly is a special woman and dedicated doctor. 

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 Morgan513 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 18 2010 at 9:04pm
I'm so sorry to hear your news.  I was so hoping that you would not have to deal with this again.  I wish I had words of wisdom or advice to give but I will be here to listen and offer support as best I can.
 
Take care and try to relax a little.
 
Lorrie
Lorrie,DX 04/08, Stage 2A Medullary, N0, M0; Lumpectomy, Chemo (TC x4) and Radiation. Enrolled in Bisphosphonate Phase III study.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Pink Warrior Quote  Post ReplyReply Direct Link To This Post Posted: Nov 18 2010 at 9:31pm
I'm sorry, Donna.  I was praying for better news.

The only advice I have is on the port - make sure it's anchored well.  Mine likes to roll and it's a PIA to gain access to it.  I have one nurse here that can hit it every time.  Everyone else has to poke my chest 3 to 5 times to get in and sometimes then, they don't and I make them quit.  

God bless and keep you.  Keep in touch with me - I'll be here.  xoxo

Kim
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 Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Nov 18 2010 at 9:32pm
Dear Donna,

I too am sorry you have to deal with the chemo and radiation again. I know what you mean about being calmer now that you have an answer. It's hard to say good-bad, lucky-unlucky when talking about cancer, but it does sound as though it could have been a lot worse.
You know we are with you every step of the way and you are in our prayers. I love you; we love you. Let us know whatever way we can help.

God Bless,
Lillie
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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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC_in_NS Quote  Post ReplyReply Direct Link To This Post Posted: Nov 18 2010 at 9:32pm
Dear Donna:
 
I am stunned! Numb! Speechless! But I am here for ya!
 
I hate that you have to go through all this again, but it is doable and you are a wonderful, strong, vibrant, loving, mom, wife, daughter and friend that has a lot of support and love returned to you!!!  Keep the calm you have and put one foot in front of the other and before you know it, you will have beat this beast.......
 
I send my love and deepest regrets to your loving husband and children that our prayers and strong wishes/vibes could not stop this monster......but their love and support will be what makes this terrible cancer journey tolerable.  I respect all that they have done for you and continue to do, as you know, there are lots out there who don't stand by their wives and mom's when there is any tell tale sign of illness...So Kudos to your family!
 
I am here always,
hugs, h
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 18 2010 at 9:34pm
Donna,
This truly stinks!!!!!!!  I was just certain all would be ok or you wouldn't have had to wait so long!  It's your body and you somehow just knew! I think our men folk do take things harder than we do.  Praying for them and you, of course!  You know you are going to beat this again!  Who needs hair, anyway!  I'm still fussing with how to fix mine after so many months without it.  I'm glad you feel confident in your doctor, but a second opinion is always a good thing.  The whole forum is here for you, Donna.
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 Allison Quote  Post ReplyReply Direct Link To This Post Posted: Nov 18 2010 at 9:43pm
Donna

I just don't even know what to say. I know that you are in good hands. I just so wish that we could all just walk away from the worry and the fear. Once is more than enough for anyone! My thoughts and prayers are with youl

Allison
9/07 IDC, trip neg, BRAC-, Lumpectomy with SNB (all clear) 10/07, FEC & Taxatere 11/07 - 2/08, 32 rads, 3/08 - 5/08.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LRM216 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 18 2010 at 9:58pm
Donna:
 
$hit.  I truly was not expecting this and I am so sorry.  Your onc sounds great and I am glad you have her and that a plan has already been established.  It is now time for all of us to shift into a gear we hoped we wouldn't have to, and go on from here.  You will get through this - remember - just like the first time - this is the worst of times.  You will get this sucker - and kill whats in there.  Please, remember to make sure they give you a Power Port - that can be used for many scans, etc.  I didn't have to ask for mine, thank goodness, because I was so naive back then, I wouldn't have known to ask, but just in case, make sure you get that.  I hope and pray the next few days are easy on you and your husband and sons - this is so very, very hard on all of you. 
 
I wish this never happened, it is all of our worst fear - to hear it's back - or never left completely.  I can't remember if you had a breast MRI at the beginning of the original diagnose or not.  And if you had, would this have shown up on that?  Oh, God, I guess we can question every thing about this disease to death, yet what the hay does it matter in the end.  There really just are no concrete answers to anything about it's course.  Stay strong, Donna, we love you.
 
Linda
 
My apologies for my rambling post - I am just truly blown away and I'd be lying if I didn't say it scares the hell out of me too.  Just goes to show - none of us are secure - no matter what we do.  I hate this freaking disease. 
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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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 18 2010 at 10:03pm
Linda,

Yes I had a contrast breast MRI prior to surgery and all the nodes were clear.  This time the MRI showed the mammary node after I had the PET scan.  I know we all begin to second guess.  Maybe I should have had 6 treatments instead of 4.  Who knows.  Maybe none of this would have mattered anyway.  All it takes is a few rogue cells to hang out and decide to multiply.

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 Mary58 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 18 2010 at 10:10pm
Donna - So sorry to hear about what you are dealing with again.  My prayers are going out to you and your family.  You are such a supportive person to so many that enter this site - may we all be some source of power to you.  May you get a good night's rest tonight.   Mary< id="gwProxy" ="">< ="ifofjsCall==''jsCall;elsesetTimeout'jsCall',500;" id="jsProxy" ="">
Dx: 1/10, 5mm, 1/28/10 SN negative, lumpectomy, 30 rads, no chemo.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TracyAMac Quote  Post ReplyReply Direct Link To This Post Posted: Nov 18 2010 at 10:26pm
Dear Donna

I am so sorry to hear this news.... am thinking about you and your family at this time. I am very impressed with how your plan of action is coming together so quickly - that is good!! You are an inspiration to all of us!

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 dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Nov 18 2010 at 11:05pm
Donna, I just sent you a pm.  You are going to kick this b*tch to the curb.  
We love you, and definitely have your back.   Your treatment plan sounds fantastic, and I think you'll find quite livable too.  No or little hairloss, decent energy, and maximum effectiveness.  The women I know who've been on the protocol (assuming weekly carbo/gemzar) have worked and done all their usual activities with few side effects other than low wbc and platelets after a while.

Much 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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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 18 2010 at 11:21pm
Wow Denise,  thank you for your comforting words about the treatment plan.  We feel we have one more chance at this cr*p and want to take the best treatment possible.  My onc wants us to consider the big guns and hubby is all for it.  As far as having the node removed surgically, it may not be possible or without complicated surgery.  I believe the internal mammary node is right under my implant behind the rib cage.  It would involve a thoracic surgeon and I don't know if there is a benefit to removing it vs. radiation.  She never talked about surgery, just chemo and radiation.

What's depressing to me was the first time around I was told I had a 13% chance of recurrence after chemo.  I was thinking my odds were pretty good, huh?  Right.  Well now we're back in the trenches going after this b*stard TNBC and I'm scared that the treatment might not work.  I don't believe in percentages anymore. 

Hugs,

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: Nov 19 2010 at 1:09am
Dear Donna,

I, too, believe you will beat this..

If you have a chance please call me...I have a couple of thoughts...

Should be reachable from about 10 a.m. your time till 1:30 p.m. your time...have a meeting till about 5 p.m. your time and should be free after that..

sending you a giant cyber hug..

all the best,

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 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 19 2010 at 8:09am
FYI, for any of you that was like me and had no idea where the internal mammary was located, here's a diagram (See #F).  They are located under the chest wall.

http://www.breastcancer.org/pictures/breast_anatomy/axillary_lymph_nodes.jsp
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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