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Finally some good news

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Craig76 View Drop Down
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    Posted: May 17 2011 at 6:56pm
Well my friend went in for a Pet last week and after a year and two months we finally received some good news.  The chemo she is on (Gemzar/Carb) has worked pretty good to this point.  She had a spot on her lung and a t-12 bone...both have gone down to tiny spots...she had cancer in some lymph nodes along the middle of her chest...the cancer in those have gone down as well.  I know we still have a fight but to finally get some good news...wow...it is such a relief!!!!!SmileSmileSmile  Time to go celebrate this weekend!
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dmwolf View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: May 17 2011 at 7:11pm
That's wonderful!!
Thanks for letting us know.  You're a good friend.
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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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: May 17 2011 at 8:35pm
Craig,

Good news indeed!  Can you refresh my memory?  Is your friend getting Iniparib also or just the Gemzar/Carbo?

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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Charlene View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Charlene Quote  Post ReplyReply Direct Link To This Post Posted: May 17 2011 at 9:13pm
Craig,
 
Glad to know that you got some good news.  Definitely do some celebrating this weekend!
 
Charlene
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED
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Craig76 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Craig76 Quote  Post ReplyReply Direct Link To This Post Posted: May 17 2011 at 9:23pm
She was not on a parp...her oncologist and the second opinion both agreed since she tested negative for that gene it probably would not do her much good. 
 
I thought about you today Donna.  Just as a heads up, I know you are on rads and you had gem/carb.  Well, she did rads and had a pet scan a month later and then started her chemo.  After she started chemo, her left side where the cancer had originated had some pain that got steadily worse.  These past couple of weeks have been hard.  It got to the point where she could not use that arm to get ready for work in the morning or even lift a cup at times.  We thought it was the burnt tissue and nerves trying to heal after having a heavy dose of radiation.  She went to her oncologist who sent her to her primary care doctor.  They did x-rays did not find anything. Well this last pet showed that whole right side (the area they did rads) to be enflamed.  There is no cancer there (thank goodness) but the combo of the gemzar and the radiation caused it.  You would have thought the rads would have been out of her system by then but that was not the case I guess.  Her onc said it is rare and she had only seen it happen twice before, but something to keep in mind I guess and to watch for. Her old oncologist had mentioned that gem and rads do not work well together but did not elaborate.  This might be what she was eluding to.
 
Thanks everybody!  I hope this chemo continues to work for her.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Charlene Quote  Post ReplyReply Direct Link To This Post Posted: May 17 2011 at 9:29pm
At the beginning of my journey, I asked my medical oncologist why they do chemo before radiation.  He said that sometimes there can be complications in the area that was radiated, if chemo is done after radiation.
 
Charlene
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 17 2011 at 9:32pm
Craig,

The rad onc basically said the same thing to me.  She wanted me to wait about 4 weeks before beginning radiation because she said we need to get the "gemzar" out of your system.  Gemzar and radiation don't work well together.  I'll have to keep an eye on this in case I get a similar situation.  Thanks for the heads up!

I hope the inflammation goes down and she starts feeling better.  At least the scans are clear!

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 mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: May 17 2011 at 10:20pm
Craig, that is truly wonderful news, it's been a long hard slog and it's just a huge weight lifted to hear the good news.
 
I'll add to your good news and say that my sister, who's metastatic to spine & lung got the news after a year of struggling that she is officially in remission! Wahoo!
 
So, for all of us who were in real need of good news, this is a good day and we can believe in miracles again!
 
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 Craig76 Quote  Post ReplyReply Direct Link To This Post Posted: May 18 2011 at 9:29am
Yeah you would think four or five weeks would be long enough for the radiation to leave your system but that was not the case with her.  We were just happy her scans were clear in that area, the radiation did do its job and it did a better job than expected. Now the chemo is doing its job as well.  Interesting Charlene.  I never really questioned why they did things in a specific order, but I see now there is a method to their madness.  I know they do rads with chemo at times, I wonder what it is in chemos like gemzar that cause complications.  She is going in tomorrow to talk to her onc about that lymph node that still has cancer in it and to talk about the inflamation so I will keep you posted on that.  Mainsail, that is awesome news!  Yes this day was a boost to us and many others hopefully.  Your sister needs to go celebrate this weekend also!  I am truly happy for her!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TysMom Quote  Post ReplyReply Direct Link To This Post Posted: May 18 2011 at 12:24pm
This is wonderful news!!  I am on Gemzar / Carbo so this really makes me feel good.
 
However, I am starting radiation tomorrow for a small spot on my t-spine.  Wondering if I should delay it.  Problem is my onc hasn't told me how many rounds of chemo I will be doing.  Any advice anyone?
44 at dx
TN IDC Gr3/St 3 1/17 nodes+
5cm tumor removed 3/12/10
Taxol weekly for 12 weeks FINISHED 7/21/10
9 Avastin FINISHED 9/1/10
DD A/C 4 tx-FINISHED 9/15/10
BI-MX 10/6/10
BRCA 1/2 neg
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Craig76 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Craig76 Quote  Post ReplyReply Direct Link To This Post Posted: May 18 2011 at 2:20pm
Well I am not a doctor Ty's Mom, but her oncologist said it was quite rare that the chemo and radiation reacted the way they did.  She had only seen two previous cases that did that.  At the same time she did wait a month before starting the chemo so there was only a limited amount of radiation in her body.  Hmmm...I don't know.  I am so against any sort of waiting period when dealing with this disease. I just do not like the idea of this junk gaining strength or having free time to spread, but that is just my opinion.  Personally, if I were in your shoes I would ask your oncologist about the risks  of doing it now versus later and weigh your options.  If you are still unsure maybe a second opinion if possible would help in your decission.  Those second opinions about treatment plans are so valuable in my opinion.  Hope that helps and good luck with your treatment. :)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 18 2011 at 6:11pm
Tysmom,

I think if your doctors support the radiation while getting chemo, then I'd do it.  I met a woman with lung cancer in my rad onc group.  She's getting chemo and rads at the same 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 Craig76 Quote  Post ReplyReply Direct Link To This Post Posted: May 19 2011 at 3:33pm
So she met with the onc today to go over in detail the results of her pet scan.  Her met on the t-12 bone is all but gone.  When first found it had a 26 rating (not sure what that means) that went down to a 3.  The lung met has not activity and has shrunk.  The only concern now is that lymph node in the center of her chest.  It seems the gemzar/carb did not have much effect on it if any.  I am wondering if it is because the nodes are quite small and not as accessable.  But the ruling is to get her off the gem/carb and try xeloda since the cancer in the node was not affected.  Has anybody been on this combo? There is a chance that since there is only one real spot of cancer that is active that they might radiate that node during the chemo treatment.  Overall a good pet scan.  One active spot left...

Edited by Craig76 - May 20 2011 at 1:22pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: May 19 2011 at 4:19pm
Dear Mainy,

What wonderful news about your sister. I am rejoicing with you and her.

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 - 11/2015-9 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: May 19 2011 at 6:08pm
Lillie, thanks so much, yes there is great joy throughout the whole family. I thought I would share here because it just means so much to hear about the successes!
 
Craig, my sister was on a Gemzar combo, she found she had serious side effects and ended up going off it. The lesson we learned was that it is sometimes a good idea to cut the Genzar doseage and work with the patient to find a tolerance level. Some women here had the doseage cut by half and that seemed to be much more tolerable. My favorite term to tell a doctor is please give me pediatric doses...
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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Craig76 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Craig76 Quote  Post ReplyReply Direct Link To This Post Posted: May 19 2011 at 6:51pm
Mainset~  Yes that is good advice.  I like that and I will keep that in mind.  I think she was cut mainly because the one spot was not affected so she wanted to try something else on her.  But yeah I will keep that in mind if she has serious side effects from future treatments.  I didn't really think of that...pediatric doses...thanks. :)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 19 2011 at 7:03pm
When I was on Gemzar/Carbo they cut both doses a few times until we found the right level. 

We love to hear good news stories.  It gives us all hope!

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 Martha Quote  Post ReplyReply Direct Link To This Post Posted: May 20 2011 at 5:30pm
Craig,
I read an earlier post from you that because your friend was BRACA negative, the PARP wouldn't work for her. I am currently on Gem + Carbo + Iniparib. I had 4 nodes light up like Christmas trees in my Feb 11 scan. Three of the nodes were "small" and along my chest (medialstinal), the 4th behind my pectoral muscle. After 3 cycles of treatment, my scan showed NO NODEs along my chest....and the pectoral area was smaller and less dense. This is my 3rd chemo regimen in almost 3 years. I have only had 7 months of "NED" following the 2 previous treatments ( 1.TAC - six cycles followed by 28 radiation tx; 2. Ixempra + Xeloda -5 cycles). I was only able to tolerate 5 cycles of the Ixempra + Xeloda.  MDA recommended 6 cycles. The side effects were pretty rough - specifically, hand-foot syndrome and severe neuropathy in my feet. I'm still taking neurontin for the neuropathy. I ended that chemo in June, 2010. This chemo regimen is really tiresome and my blood counts keep dropping...but other than that, not too bad. We plan to do 6 cycles total - then scan again. If the pectoral node is still present, I will have surgery to remove it, but stay on iniparib to keep the cancer away. I just finished cycle 4 this week. Just thought I'd share what I experienced. Not sure there is enough data to say BRACA negative patients won't benefit from iniparib. That is my reason for being on this trial....to get longer than 7 months of NED.
Hope the radiation pain gets better - for all who are experiencing that. I had the burnt tissue, but no significant pain. Guess I was lucky.
Warm Hugs,
Martha
Dx 10/08;mastect 11/08; T2/N1/M0;TACX6;rads 5-6/09; recur 11/09;recur 3/10; xeloda + Ixempx5;recur 1/11; gem + carbo + iniparib 2/11; BRCA1/2 -; dx prog 1/12; Havalen Mar Apr 12;Abraxane, May-present.
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