bad pet scan result - please help!!! |
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ameg 
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Joined: May 15 2011 Location: New Jeresy Status: Offline Points: 71 |
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 Topic: bad pet scan result - please help!!!Posted: Nov 17 2011 at 10:25pm |
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I just finished 3 rounds of Doxil. Today my pet scan showed that the drug is not working. At the beginning when I was diagnosed I had A+C+ Taxol. When it reoccurred I had Toxteere and now Doxil. I'm frighten and frustrated. The cancer metastasized to the lung and lymph nodes. I'm also BRCA1 negative.
Any idea what I should do next?   
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Suze35
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Joined: Sep 20 2010 Status: Offline Points: 101 |
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Posted: Nov 18 2011 at 12:59am |
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I'm so sorry to hear of your PET scan, set-backs can be so hard. I don't have any words of wisdom for you at the moment, I know these amazing people will be along soon to help. I just wanted to offer my comfort as I'm in a similar situation and can empathize with you so much.
Hang in there. Best, |
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9/2010 Stg IIIa, AC+T and Carbo
July 2011-Xeloda+Avastin 9/2011 Stg IV-nodes, bones, liver 10/2011-Abraxane/Tig trial - Abx arm 11/2011-progression, Tig/Abraxane 12/2011-Off trial - Eribulin |
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LauraT
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Joined: May 05 2010 Location: Georgia Status: Offline Points: 739 |
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Posted: Nov 18 2011 at 7:48am |
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So sorry for the anguish you are going through. I have mets to the lungs and lymph nodes and I have been on avastin and taxol since June with good results. Sometimes avastin is paired with abraxane. Pink Warrior here is on that regimen for lung/lymph nodes and it's working well for her. Have you considered a clinical trial?
You will be in my prayers. Please keep us posted. Love, Laura
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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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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13509 |
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Posted: Nov 18 2011 at 8:18am |
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Ameg,
I'm sorry I don't have an answer for you. I agree with Laura that Kim (Pinkwarrior) is having good results with her chemo. Can you talk to your onc about possible clinical trials? What about the one with Tigatuzumab? Some people have had success with the platinums, like carboplatin or cisplatin. Here's a link to some clinical trials: |
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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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Barbi
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Posted: Nov 18 2011 at 9:35am |
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Ameg,
I can think of lots of things, but I'm not a doctor. Where are you treating and have you considered a 2nd opinion?? Sorry if you've told us this story before and don't feel like you have to do it again - just curious. You have MSKCC close to you as well as many others. UNC/Lisa Carey is not all that far, and MD Anderson is just a plane ride away. Don't we all sound like jetsetters?? Don't worry, we are all afraid when we have recurrence or metastasis. I was diagnosed with mets in August and I'm still afraid. But, at least for today, I'm not panicked, because I have a plan. So, remembering that I'm not a doctor...you might have some resistance right now to taxanes. If you choose to do a platinum drug (carbo, for instance) they may want to do it with gemcitidine or another drug as you've had one already with a recurrence. Clinical trials seem to me to be one of the best ways to get tested for these different characteristics that each of our cancers shows AND get access to some of these newer drugs that MAY provide longer periods of stability (and dare we say, remission). Although the tigatuzumab failed me, they are getting great results. In the meantime, you can sign and get tested for the androgen receptor, along with MANY others they are looking at! Don't get too down. Start researching trials on your own if needed, talk to the docs, think about the 2nd opinion and come here to vent and/or ask questions, get support! Love and prayers to you.
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10/10,age49,St3,gr3,5+cm,1 node,BRCA-,T+Cisplatin+Rad0001(or placebo),Lump 1+cm,AND 0/15,AC,rads finished 7/6/11.Mets bone, liver,mamm node 8/11,abrax/tigatuzamab failed.Started bicalutamide 11/16/11.
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jloon
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Joined: Jun 26 2011 Location: Vancouer, BC Status: Offline Points: 38 |
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Posted: Nov 18 2011 at 12:14pm |
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After AC/T failed me (completely) I went on to Gemcitibine/Cisplatin and Avastin - had an excellent response. It's only scary until you find a plan and I know you will. xo Jackie
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Dx 5/10 IDC stage 3 age 38. AC/D chemo. Dble Mast 11/10. No rads- mets-started Gem/Cis/Avastin. 2/11 NED. 6/11 Mets - started Gem/Carb/Iniparib- progression 11/11 Abraxane w/Avastin
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btstark2003
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Joined: Apr 24 2010 Location: St. Louis area Status: Offline Points: 426 |
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Posted: Nov 18 2011 at 10:55pm |
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Hi Ameg,
I have a chest wall metastasis - the tumor was 5x3 cm when I found it in early August, and it has now shrunk down to 2.7x1.9 cm after 6 infusions (3 cycles) of gemcitabine + carboplatin. My doc, Matt Ellis, think it's a good response and we'll keep going on gem/carbo for another 3 cycles. Side effects are minimal. You need to see a top notch breast cancer medical oncologist or two if you haven't already, and get their opinions on what to do next. And do it quickly. I agree with others that since you are close to MSKCC it would be a good choice. I live in St. Louis and I flew to Raleigh-Durham, NC to get a 3rd opinion from Lisa Carey at UNC cancer center. I thought she was great. Keep us posted. Hugs, Beth
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2008 Stg1 TNBC, LX, FEC+T, rads
2010 2.5cm tumor BRCA-, BMX,CMF 2011 LN mets, Gem/Carbo, surgery, rads 2012 lung mets, PI3Ki/taxo 2013 anti-PD-1 2014/15 Xeloda, IMMU-132, eribulin Aug 2015 Keytruda |
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ameg
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Joined: May 15 2011 Location: New Jeresy Status: Offline Points: 71 |
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Posted: Nov 20 2011 at 12:00am |
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Thank u all for responding.
I spoke so far with 2 doctors and I'm planing to speak with other 2 this week. One of them is from MSKCC. We spoke so far about one option which is gemcitabine + carboplatin like u said but one of the Dr. thought that the side effect of the combination will be hard on me. Maybe just gemcitabine alone. You said that the side effect was minimal. What did u feel? How often did you do it? I was told that at this point it will be a good idea to start a new family of drugs b/c it seems that the cancer is not responding to the A/T family. My SUV got lighter and couple of the tumors got bigger since my last test, 3 months ago. I mentioned before that they found a few more in the lymph nodes. The Dr. said that the cancer is progressing slowly but the fact that the treatments are not working scars the hail out me. |
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13509 |
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Posted: Nov 20 2011 at 12:13am |
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Ameg,
I had Gemcitabine and Carboplatin when I was in the clinical trial for Iniparib (BSI-201). Sometimes the platinums (like carbo or cisplatin) do well with us TN's. I found the side effects to be minimal. I continued to work through treatment and found that fatigue was the biggest side effect. If I wasn't working, I think it would have been much easier on me as I could have gotten more rest. I had some issues with elevated liver enzymes also. I didn't lose my hair. For me, it was much easier than Cytoxan and Taxotere. 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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Pink Warrior
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Joined: Dec 11 2009 Location: Missouri Status: Offline Points: 374 |
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Posted: Nov 20 2011 at 7:37pm |
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Ameg,
I agree the recurrence and mets is a very scary situation. I was down with recurrent pneumonia with my lung mets and the pneumonia just about took me out. I was started on Abraxane and Avastin back in September for the hilar and mediastinal nodes in my lungs and also to the skin/chest wall mets. We saw an immediate response in the chest wall/skin and it's almost clear now just after 2 full cycles. I'm still coughing with the lung mets but I'm able to have quality of life and get around again without a wheelchair. There is hope. Hang in there.
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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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ameg
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Posted: Nov 20 2011 at 9:54pm |
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I'm trying to set an appointment for a second opinion with a Dr. at Cornell breast center. A friend of mine highly recommended them. Meantime my Dr. said he will get back to me with a plan.
Thank you all for your encouragements!!! |
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ameg
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Posted: Dec 03 2011 at 10:41pm |
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I saw a few doctors for second and third opinion. I also checked clinical trials and finally after very tense 2 weeks, I started Gemzar yesterday.
There is a new clinical trial opening around Jan-Febr for TNBC. I hope I will be able to get in. First the doctors were thinking to do Gemzar with Carboplatin but they thoght it will be too much for me, and it will effect the bone marrow. In that case they were afraid I wont be able to get on the trial. I hope we did the right decision by going with single agent. I want to go back to work (I'm a teacher) but I'm afraid to get sick with all the little kids. The onc said I can, but I'm not sure how I feel about that. I will have another treatment this week. After checking the white blood cells they will let me know if I need Nulasta. I was told that Gemzar doesn't effect the WBC so much. Is this accurate? Any idea? |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Dec 07 2011 at 6:00pm |
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Hi Ameg, I am hoping your treatments go as smoothly as possible for you. I personally do not have experience with Gemzar but here are a couple of links re blood counts.
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suec
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Joined: Jun 10 2009 Location: jacksonville, fl Status: Offline Points: 240 |
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Posted: Dec 10 2011 at 9:06pm |
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hi, ameg, gemzar plus avastin worked for me for about four months before i had to move on to other regimen. the side effects were minimal compared to carbo and taxol. good luck, suec
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tnbc 3b: partial mas 5/06; 6 rounds FEC; 36 rad; 05/09-mets to bone; xeloda, avastin, zometa; gemzar & avastin; rads to hips; 8 mo on methotrexate+5fu; 5/11 mets to liver/lung; halevan fails;carb&Abrx
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btstark2003
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Joined: Apr 24 2010 Location: St. Louis area Status: Offline Points: 426 |
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Posted: Dec 10 2011 at 10:51pm |
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Hi Ameg,
I have been on gemzar/ carboplatin for 16 weeks (8 treatments so far) and am doing great on it. My tumor has shrunk by about 50% so far. Side effects are minimal - i have moderate fatigue and feel a little sickish on days 3 and 4 following each biweekly infusion. My hemoglobin, hematocrit and platelets have been dropping slowly but steadily, but if they get too low i will just have a transfusion and carry on with the treatments. I am still working full time. Gem/carbo is like a walk in the park compared to the other chemo regimens i have had. My doc and nurses say most people tolerate it pretty well. 
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2008 Stg1 TNBC, LX, FEC+T, rads
2010 2.5cm tumor BRCA-, BMX,CMF 2011 LN mets, Gem/Carbo, surgery, rads 2012 lung mets, PI3Ki/taxo 2013 anti-PD-1 2014/15 Xeloda, IMMU-132, eribulin Aug 2015 Keytruda |
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ameg
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Posted: Dec 11 2011 at 12:49am |
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The only thing is that I'm on Gemzar alone and I'm not sure how effective it is by itself without the carboplatin.
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btstark2003
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Joined: Apr 24 2010 Location: St. Louis area Status: Offline Points: 426 |
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Posted: Dec 12 2011 at 12:18am |
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Hi Ameg,
Sounds like you have gotten advice from several good docs and you are following it and that's all you can do. Try not to spend your energy worrying too much if you can, but remember to think positively as much as you can and envision the Gemzar and your immune system cells working together to kill all those cancer cells. As for working, personally I feel that my work takes the focus off of me and my cancer and as long as I can carry on with my normal life, I feel like I am winning. So if you enjoy your job and the kids maybe it would do you good to try to work. This time of year, you cant really avoid being exposed to cold and flu bugs unless you hole up in your house and become a hermit. Remember, January is just around the corner and hopefully you can get into the clinical trial that your docs are recommending then! Be strong Ameg, you can do this! Beth
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2008 Stg1 TNBC, LX, FEC+T, rads
2010 2.5cm tumor BRCA-, BMX,CMF 2011 LN mets, Gem/Carbo, surgery, rads 2012 lung mets, PI3Ki/taxo 2013 anti-PD-1 2014/15 Xeloda, IMMU-132, eribulin Aug 2015 Keytruda |
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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: Dec 19 2011 at 9:19pm |
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Just found out today that my PET scan of 12/13/11 showed two hot spots that look like tumors - one in chest wall, one in breast lymph tissue. Is lymph tissue the same as lymph system? I meet with onc a few days after Christmas and wonder how much how I should tell my grown children and siblings. One tumor looks to be 2cm and one is 1.8. I am still a bit in shock.
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DX4/10IDCSt2Gr3BRCA-Lump4/30/10, port,A/Cx46/14/10;wklyTaxol8/10ended 11/10/10.Rads35xbegin 11/10. LumpRBreastB9
2/2011,MammoOK 8/11 PET-metsIntlMamryChain12/11Xeloda,IMRT8wks;5/12 Mets,Stage4 |
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Barbi
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Posted: Dec 19 2011 at 10:21pm |
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Dear Sister,
So sorry about your PET Scan, but they are not perfect tests. I would say lymph tissue is the same as lymph system, but one node does not make systemic mets. This is an awful time and an awful wait for this kind of news. I am saying a prayer for b9 for you and for you to be able to let go some of the anxiety you are surely experiencing right now.
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10/10,age49,St3,gr3,5+cm,1 node,BRCA-,T+Cisplatin+Rad0001(or placebo),Lump 1+cm,AND 0/15,AC,rads finished 7/6/11.Mets bone, liver,mamm node 8/11,abrax/tigatuzamab failed.Started bicalutamide 11/16/11.
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kidzrn
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Posted: Dec 19 2011 at 11:06pm |
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Carbo, taxol and avastin did the trick for me and depending on insurance and/or income you can still get possibly get avastin. Been working well for me for over 3 1/2 years....Best wishes and prayers Christi
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christi
2006,TNBC,Gr3 dbl mast, 4AC/4T {NED 4/07}, Lung Met 4/08, Carbo, Avastin, Taxol/Taxotere (CAT)x4, Lung Surgery 9/08, then Avastin every 3 wks until 2012...NED since 2/09 |
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