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Debris View Drop Down
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    Posted: Apr 28 2011 at 7:09pm
Had the 3-month CT scan on Tuesday, and today (Thursday), went for my usual Avastin infusion.  Saw the PA, and found out that the scan showed "Large left axillary lymph node" increased from 6mm to 1.2 cm, and "a new upper high left axillary lymph node is identified, currently measuring 1.4 X 0.7 cm, deep to the upper left pectoralis minor muscle."
 
Also, in spite of all the radiation to the neck, the "1.1 X 0.9 cm left posterior cervical triangle lymph node appears marginally smaller 1.0 X 0.7 cm, and the prior subtle millimeter diameter carotid sheath lymph node appears marginally smaller 0.5 cm diameter."
 
Good news is that these are still relatively small, and that "multiple smaller subcentimeter posterior cervical triangle lymph nodes have resolved".  Extra good news is that there is no evidence of disease anywhere else! Smile 
 
So, today's treatment was cancelled.  The PA was uncomfortable discussing future treatments, as she felt (and I agree) that that is for the Oncologist to review with me. She ordered a PET scan for tomorrow morning, and then I get to see the Oncologist next Wednesday. 
 
However, she did suggest (and gave me the paperwork for), a clinical trial - ACORN  ALSSMBC0804, which is IXEMPRA plus SPRYCEL.  Anyone know anything about this trial or this combination of drugs? 
 
(I asked her about Havalen, and she said that that really was a discussion for me to have with the Onc. next week.)
 
So, another question: What is (your) opinion on the most aggressive way to treat this new situation?  I'd rather give it heck now, than do dribs and drabs, not achieving anything really, except side effects...
 
Thanks, as always, for all feedback.
 
God Bless.
 
Deborah.
4/12 Xeloda/Tykerb
2 Carboplatin
12/11 Dx IA
9 Gemzar/Taxotere Dx IBC:FEC
5 Ixempra/Sprycel
2 25 Rad
10/10 BRCA1-/2suv
9 NED
6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin
06/08 Dx DCIS 0/SN Rads/AIs
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tninalabama View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tninalabama Quote  Post ReplyReply Direct Link To This Post Posted: Apr 28 2011 at 9:18pm
Deborah,

I see that your scan was a mixed bag. I don't know about the drug combo, but clinical trials are a good way to go if your current regimen isn't working.

I take Abraxane, which is hard to deal with some days. I wish you luck.

Pam
Dx 11/07,stII bgr3,1/8+, metaplastic, recurrence 11/09, lymph dis 12/13+ 07/10, rad,x28 9/10,02/11 mets

BRCA neg
5-FMC since 03/12
PET 04/12,no progression
Bone scan clear 06/12
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 28 2011 at 9:43pm

Deborah, I'm on Taxotere and Xeloda til I get on the Parp trial.    I don't know about the chemo you mentioned.  What do we have to do to kill this beast in our bodies?????????????   Hopefully, you get more clarity with the PET scan.  I'm sorry the news wasn't better.

Lee xoxoxo

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 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 28 2011 at 11:18pm
Hi Deborah,

Sorry, but I don't know anything about this trial or the drugs used in the trial.  It looks like it's a Phase I/II clinical trial with an estimated enrollment of 56.  Here's the link from the clinical trials.gov

http://clinicaltrials.gov/ct2/show/NCT00924352?id=ALSSMBC0804&rank=1

Maybe ask your onc why this Phase I/II trial would be better for you than an FDA approved drug like Halaven. 

Wishing you a good PET scan tomorrow.

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 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 28 2011 at 11:25pm
Deborah,

Another thought - ask your onc about the BiPar EAP clinical trial of Iniparib, Gemzar and Carboplatin.  I'd want the onc to compare the different clinical trials and determine which one might be best for you, weighing the options of each chemo.

Here's a full list of clinical trials for Metastatic Triple Negative Breast Cancer:

http://clinicaltrials.gov/ct2/results?term=metastatic+triple+negative+breast+cancer 
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 mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Apr 29 2011 at 1:10am
Donna has a good point. Why a trial if Halaven is available? If a trial is being considered, what about the new trial for Tigatuzumab that the TN Foundation is helping to fund?
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 29 2011 at 10:44am
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 Debris Quote  Post ReplyReply Direct Link To This Post Posted: Apr 29 2011 at 6:47pm
Thank you, Donna and Mainy for the clinical trial suggestions, and everybody for your good wishes.
 
I had the PET scan today, and will see the Onc. on Wednesday.  I am planning to write up my list of questions for him over this weekend, and these suggestions have given me an excellent starting point!
 
Have a great weekend, all.
 
Deborah.
4/12 Xeloda/Tykerb
2 Carboplatin
12/11 Dx IA
9 Gemzar/Taxotere Dx IBC:FEC
5 Ixempra/Sprycel
2 25 Rad
10/10 BRCA1-/2suv
9 NED
6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin
06/08 Dx DCIS 0/SN Rads/AIs
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Apr 30 2011 at 4:37pm
Hi, Deborah.  It sounds like you are playing cancer whack-a-mole, luckily just in lymph nodes.  Sorry the news wasn't better, but like you said it's a very good thing that many spots disappeared and that it is confined to a few lymph nodes.   

From all that I've read and heard about, I'm not a fan of Ixempra.  That drug is wicked toxic in the three week dosing, and still pretty toxic in the lower weekly dose version.   Could you remind us of what chemo's you've had so far?  Then we can help you reason through the options.

I agree with Donna that Halaven might be the way to go.  The fact that you got to NED with Taxol means that your cancer was very sensitive to Taxanes, and probably still is.  Halaven attacks the same pathway as Taxol but from a different angle.  I think it is very likely that your cancer will be sensitive to it.   It might even still be sensitive to Taxol - I wouldn't be surprised.  There's a woman on Inspire that keeps driving her cancer back to NED with the same treatment.  She'll have NED for some months, then it will pop back up again, I think also in lymph nodes, then she does the same chemo and sees it all melt away again, only to repeat the cycle.  She's done this three times.  Though common wisdom is that once someone has been on a drug and progressed, that person's cancer is resistant to the chemo.  Maybe it is different if the cancer is driven to NED, or maybe the common wisdom doesn't take into account that the cancer will continue to evolve with the next treatment, which may re-render it sensitive to the last treatment that worked. 

Anyways, good luck and please keep us posted.

Much love,
d


Edited by dmwolf - Apr 30 2011 at 4:39pm
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 EileenF Quote  Post ReplyReply Direct Link To This Post Posted: May 01 2011 at 2:03pm
D   what is the chemo cocktail the woman on Inspire is using?  I have just started the Xeloda and want to ask further about Halaven as my cervical lymph nodes are very tight with swelling but not causing breathing problems yet
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 LauraT Quote  Post ReplyReply Direct Link To This Post Posted: May 01 2011 at 5:37pm
Deborah - Sorry that your scans weren't all clear and showed some progression, but on the other hand, glad that some nodes were resolved. I hope that you can find the right chemo that will knock those bad boys out. It sounds like there are some good options out there for you. Praying that your onc will have wisdom in finding the best for you that will give you results with least side effects. Your optimism is so inspiring! You know that I'll be thinking of you and keeping you in my prayers.
 
Love,
Laura
DX 10/09 @44, Stage I IDC tnbc, DCIS other side, Neoadjuvant TCx4, Bilateral Mastectomy w/Recon 1/10, 1.2cm 0/7 Nodes, 5/11 Mets to Lungs/Lymph Nodes, Avastin/Taxol, 10/11 Bone Mets, Xgeva
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Debris Quote  Post ReplyReply Direct Link To This Post Posted: May 01 2011 at 6:19pm
D, your coherent summing up of the situation and possibilities, plus the great suggestions from Donna and Mainy, have served to underscore my own intial reaction to the suggested trial.  (It was because I did not feel right about it, that I posted here, to see what others thought...)  Because I had very manageable side effects last time around, it would be good to try the same regimen again, if possible.
 
(I had Taxol + Avastin from June/July through December 2010.  In Sept was declared NED, in Jan neck nodes were hypermetabolic, but everywhere else was still NED.  Stopped Taxol in January (for neuropathy), continued Avastin.  Had radiation in February/March for neck nodes.  In April, situtaion as per above.  Interestingly, my CA 27.29 came down from 866 to 33 during this same time frame.)
 
I'm re-reading all my CT/PET reports from the beginning, and can see that there has been improvement in the fact that the number of nodes involved - which was "too many" for surgery or radiation - has reduced significantly, for which I am grateful.  (I understand a little more, now, what the reports are saying.  At the begining it was like a foreign language!) 
 
Thank you Laura, and all, for your support.
 
Sending good thoughts your way, Eileen.
 
Deborah.
 
4/12 Xeloda/Tykerb
2 Carboplatin
12/11 Dx IA
9 Gemzar/Taxotere Dx IBC:FEC
5 Ixempra/Sprycel
2 25 Rad
10/10 BRCA1-/2suv
9 NED
6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin
06/08 Dx DCIS 0/SN Rads/AIs
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Debris Quote  Post ReplyReply Direct Link To This Post Posted: May 05 2011 at 5:58pm
Hi D, just wanted to let you know the update.  Well, I went to the Onc all armed with my questions, and before I could get to them, he basically answered most of them just in his discussions of the scan results.  He gave me his suggestions and preferences for my treatment options including those similar to what you sugggested, but said he'd ultimately go whatever way I wanted to.  He went to make a call to the radiologist, to confirm the fact that radiation was not an option for the Axillary nodes (too deep, too near veins/nerves).  While he was out, hubby and I discussed it more (having done so before the appointment too, of course.)  The question came up, do we trust this Dr on his treatment guidance, or not?  When he came back in, we asked him for his "final" recommendation, and without hesitation, he said "If it was me, no question I'd go with the clinical trial."  So, we agreed to do so.
 
Stangely enough, before the appointment I was very unsure of the way forward, and how I was going to handle it.  (I do trust, and like, my Onc.  He is very agreeable to getting a 2nd opinion if ever I need it, and though he is very brisk in his manner, he is also very human.)  After we made the decision, I was amazingly calm.  I know that part of that is just having a decision made, but now, I put my future in the Lord's hands, and in my Onc.'s skills.
 
So, I am about to embark on a new (and potentially harsh) chemo regimen.  I thought I'd start a thread here on TNBC for that clinical trial, and post updates (and questions...) for anyone else that might go this route.
 
Thank you so much for your insight.  I hope you will still be as helpful and forthcoming with your information, as I go though this trial (literally and figuratively speaking).
 
God Bless.
 
Deborah.
 
 
4/12 Xeloda/Tykerb
2 Carboplatin
12/11 Dx IA
9 Gemzar/Taxotere Dx IBC:FEC
5 Ixempra/Sprycel
2 25 Rad
10/10 BRCA1-/2suv
9 NED
6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin
06/08 Dx DCIS 0/SN Rads/AIs
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: May 05 2011 at 7:15pm
Deborah,  I'm so glad you've arrived at a treatment plan you feel good about.  Trusting one's doctor is so important.   It sounds like your gut has informed you on the best way to go.  Of course I will always do whatever I can to help - you can count on me.
Much love,
d
*I remember one woman on Inspire who had the weekly version of Ixempra and didn't have too many side effects.  Importantly, it worked really well for her too.  I'll be hoping that you have the same great results.
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: May 05 2011 at 9:29pm
Deborah,

I'm glad you were able to come to a decision.  Sometimes we just need to listen to that little voice inside of us telling us which path to choose.  I like your idea of starting a new thread about the trial and keeping us posted.  Our members will be able to learn from your experience. 

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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