Residual disease following neoadjuvant chemo
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Topic: Residual disease following neoadjuvant chemo
Posted By: christina1961
Subject: Residual disease following neoadjuvant chemo
Date Posted: Jul 21 2011 at 7:40pm
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Hi, I recently completed 6 cycles of TAC followed by a uni MX and ALND. The pathology report showed that my original 2.5 x 2.3 x 1.3 tumor was reduced to 2 x 1.7 x 1.3 with IDC and DCIS remaining in the tumor (still do not know percentage of each.) I also had two positive nodes, the largest was 9 mm with no extracapsular extension; 16 nodes removed. I had NO vascular invasion, basal subtype and am BRACA neg. I had extremely clean margins - the closest was 2.5 cm, no skin involvement. I am 50. I am having radiation within the next few weeks. The oncologist does not want to do more chemo. I already have some neuropathy in my left hand with numb index finger. There is a clinical trial in NC that would require traveling 7 hrs round trip once a week that involves cisplatin and parp inhibitors that I am considering. I am supposed to receive info through the mail on the trial shortly.
Can anyone else please provide their experiences with neoadjuvant chemo and residual disease. I am staged 2a. I know some others who have been given more chemo following less than a complete response however they are Stage 3 b or higher. I also am frustrated because I do not know how much DCIS was left and how much the chemo reduced the cellularity of the mass. The mass became much softer and smoother during chemo and felt much smaller - the onc thought it was only 5 mm. Thanks so much. ------------- 2.5 cm TNBC, BRCA-, diag. 2/11, neoadj chemotherapy, uni MX, y2cm,2/16 nodes, RCBII, tumor retested 5-10%ER+,PR-,Her2-, rads, clin trial eribulin 10/11-2/12, tamox. |
Replies:
Posted By: 123Donna
Date Posted: Jul 21 2011 at 8:29pm
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Christina, If I were you, I'd get a second opinion about more chemo. There was still residual cancer after 6 treatments. Wishing you the best. 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 |
Posted By: mainsailset
Date Posted: Jul 21 2011 at 9:51pm
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Have you had radiation? In this business we are in of fighting TN, the better informed & the more aggressive the better. It's my understanding from reading here that the PARP trials have not produced what we had hoped for in results. There are other trials out there. In this instance, it might be a good idea to go for a 2nd opinion with a doctor that specializes in TN and can give you some insight on the viability of the different trials out there to get you the best match if that is how you decide to proceed.
Where are you may I ask? I was in a similar position of having to drive long distances to get treatment and with that kind of commitment it's worthwhile taking the time to thoroughly understand your options. From the way you frame your situation and question it's pretty obvious how thorough a person you are so I'm thinking that the more information you can pull together the better you'll feel about how to proceed.
Please keep in touch ------------- 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 |
Posted By: christina1961
Date Posted: Jul 21 2011 at 10:31pm
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Thank you both so much for your responses. I have not had radiation yet, but am scheduled to begin shortly and am going to request (if not offered) axillary as well as the standard. The oncologist I use is part of a group that is frequently involved frequently with clinical trials for TNBC. I am looking forward to my appointment with the oncologist to discuss the path results. The original pathologist (core needle biopsy) had recommended retesting the tumor bed for estrogen positivity so that is one thing I want to request along with an analysis of how much IDC vs DCIS was left, and the cellularity of the tumor bed. I am in SE TN. ------------- 2.5 cm TNBC, BRCA-, diag. 2/11, neoadj chemotherapy, uni MX, y2cm,2/16 nodes, RCBII, tumor retested 5-10%ER+,PR-,Her2-, rads, clin trial eribulin 10/11-2/12, tamox. |
Posted By: 123Donna
Date Posted: Jul 21 2011 at 10:37pm
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Christina, I'm not sure where you're getting treated, but there is an NCCN facility in Tennessee: Vanderbilt-Ingram Cancer Center. If you are not currently going there, this would be an excellent choice for a second opinion. We have a couple of members on this forum being treated there and maybe they'll comment. The following is a link to the NCCN Guidelines. Page 106 lists the member institutions. http://www.nccn.com/images/patient-guidelines/pdf/breast.pdf - http://www.nccn.com/images/patient-guidelines/pdf/breast.pdf ------------- 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 |
Posted By: dmwolf
Date Posted: Jul 21 2011 at 11:27pm
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Hi, Christina. Were the lymph nodes positive after the chemo, or did you have positive ones before chemo but none after chemo? For me, this would probably be the deciding factor. With negative nodes after chemo, I would probably forgo more chemotherapy. With positive nodes after chemo, I would consider doing more chemo. Though the travel would put me off as well. I might try to find a way to be treated locally, say with a platinum drug like carboplatin plus something else (not sure what...maybe a PARPi if I could get it, maybe something else). When you do the radiation, be sure they capture the axilla area and chest wall. There's a survival advantage to irradiating both areas if nodes were ever positive. I'm sorry you are dealing with residual disease and the decisions that come with it. It sucks - I bet you're scared, as I was when I didn't have a pCR. I too had significant residual disease after neoadjuvant chemo, and didn't do follow-up chemo aside from participating in a bisphosphonate clinical trial. As far as I can tell, I seem to be in decent health 3+ years out, so try not to despair. Not having a pCR definitely increases our odds of recurrence, but things can still turn out well, even without additional chemo. Though from what I've seen, if your nodes are positive after chemo, this does additionally raise recurrence risk even beyond just having tumor left in the breast, so I'd be serious about getting additional opinions and exploring doing more chemo. A platinum drug is the most likely to help, as many women who have cancers that are not sensitive to adramycin or taxane are sensitive to platinums. When I switched from AC to Carbo-Taxotere after the AC did NOTHING to my tumor except maybe feed it, I found that the carbo worked much better. The 6 rounds of Carbo-T I did after failed AC might be why I am still NED (as far as I know...it could be lurking quietly), though maybe I had one of those cancers that are neither responsive to many drugs nor dangerous. It's impossible to know what camp we each fall in. Anyways, as someone who faced residual disease after neo-chemo, I thought I'd pipe in with my sympathies. We are here for you. 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. |
Posted By: 123Donna
Date Posted: Jul 22 2011 at 12:16am
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Denise, So good to see you back! We missed you and your brilliant mind. Have you recovered from your adventurous vacation? Christina, Here's the link Denise was referring to: http://forum.tnbcfoundation.org/radiation-rni_topic8602.html - http://forum.tnbcfoundation.org/radiation-rni_topic8602.html I just completed wbi (whole breast irradiation) and rni (regional node irradiation). ------------- 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 |
Posted By: LauraT
Date Posted: Jul 22 2011 at 5:14am
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Christina, You've received some excellent advice here. I, too, had residual disease after neoadjuvant TC but with clean margins and no lymph node involvement. According to NCCN Guidelines, I did not need radiation. I was given a choice to have more chemo but the opinions of several oncologists were divided as to whether or not I should have it. Because I was Stage I with no positive lymph nodes, I chose not to have additional chemo. I don't know if it would have made a difference, but within 10 months of my surgery, I had lung mets show up on a CT scan. Everyone is different and everyone's cancer responds differently, so it's hard to make real comparisons. But I would encourage you to get a 2nd and maybe 3rd opinion. Let us know how you are and how else we can help. You will be in my thoughts and prayers! 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 |
Posted By: TNinTN
Date Posted: Jul 22 2011 at 10:28am
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Hi Christina, I would echo Donna's comments about seeking a second opinion at Vanderbilt. My wife, Susan, is being treated there by Dr. Ingrid Mayer who is well versed in TNBC and is a member of the NCCN breast cancer guidelines panel. Susan has received excellent care at Vanderbilt and we love Dr. Mayer. We live in Knoxville, but find the round-trip drives to Nashville well worth the time. Martin ------------- Wife age 53@dx TN IDC Stage IIA 7/10; BRCA1&2 Neg; BROCA Neg; LN Neg; taxol+cisplatin+/-RAD001x12(clinical trial); lumpectomy 12/10;ACx4; 33 Rads complete 4/11; NED 5/5/11 |
Posted By: christina1961
Date Posted: Jul 22 2011 at 12:43pm
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Thank you, Donna, Denise, Laura, and Martin! I have decided to try to get a second opinion from Vanderbilt. It would be much easier to drive there than to Asheville if more chemo is recommended. I see the oncology surgeon today, and will see my oncologist here in about a week. I will keep everyone posted. Thanks so much for relaying your personal experiences and for your prayers. ------------- 2.5 cm TNBC, BRCA-, diag. 2/11, neoadj chemotherapy, uni MX, y2cm,2/16 nodes, RCBII, tumor retested 5-10%ER+,PR-,Her2-, rads, clin trial eribulin 10/11-2/12, tamox. |
Posted By: tania
Date Posted: Jul 22 2011 at 1:13pm
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Hi Christina - Sorry you are having to wrestle with this decision. I participated in the neoadjuvant trial using gemcitiabine/carboplatin and PARPi at Stanford. I had a very good response, but not complete. My oncologist had a measurement to assess "residual cancer burden" and corresponding prognosis. This was developed at MD Anderson, but It has been replicated elsewhere. I also consult at UCSF and they use this measure as well. It has apparently been used across many different drugs, tumor types,etc. with consistent findings. You may want to ask your doctor to have the pathologist grade this for you. I have the paper from MDA if you are interested, just send me your email address. If your hospital is unfamiliar I think that Stanford could do it. The statistics from this might really help you with your decision. It is calculated using tumor bed, remaining cellularity, nodes and % DCIS to give you a score of RCB 1, 2 or 3. RCB 0=complete response. Interestingly RCB 1 has the same if not slightly better (although not sure if is statistically different) prognosis than pCR.
I echo what Denise mentioned about a platimum based drug. My doctor who was intrumental in the set up of the PARPi trial seems to think the active agent in this may be more the platinum than the PARP. Many women, not all, have had a great response on this trial. Had I not participated in the trial, Hope Rugo at UCSF would have mixed in platinum along side the standard drugs for me, based on research she is following. With AC not giving you what you hoped for, this may be a good choice if you move forward.
With an RCB of 1, and having started at stage 1c with no lymph nodes, I still opted for an adjuvant round of TC x4, just to be sure, since there is not long term data on the trial drugs I took. I had opinions all over the map, from absolutely do no more to go full blown ACT, but ultimately made the decision that I thought would give me the best peace of mind. For me the additional risk of toxicity was overshadowed by the possible benefit. This is a highly personal decision and for me was the hardest in this whole journey. I finished chemo yesterday and with it behind me, am glad I did it. For me, with BRCA and an aggressive tumor, I didn't want to give this thing as second chance at me!
To also echo on the radiation ... Stanford made immediate clinical recommendation changes based on the ASCO finidings on the 1-3 nodes. Two women who I went through this with thought they would not do radiation but the data was compelling enough and the recommendation strong enough that they both are doing it.
I thikn in most cases doctors like to prescribe any additional chemo before moving to radiation as the fnkal step., at least in the women that I know.
Good luck with this and know we are all sending support and positive thoughts your way.
Tania ------------- DX 10/2010. 1.5cm, no nodes, grade 2. BRCA1+ Neoadjuvant chemo gem/carb/parpi trial. Bilateral mastectomy 4/2011 Adjuvant chemo 4X TC - 5/11 - 7/11 |
Posted By: christina1961
Date Posted: Jul 22 2011 at 6:20pm
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Tania,
Thank you for the information. The MD Anderson residual tumor burden calculator was something I came across in my research. I was very frustrated because my final pathology report did not address the % DCIS/IDC or the remaining cellularity of the tumor bed. I now have an appt scheduled at Vanderbilt as soon as I can get in (middle of the month) - the radiation oncologist is going to see me two days later, do a planning session the following day and get me set up to start radiation the following week in the event that I do not get more chemo or they want to do the chemo following radiation. I feel certain the additional pertinent factors in the pathology will be requested by Vanderbilt so I am not requesting it now. I was leaning toward radiation based on what I had read even if I had had no positive nodes. I agree, I do not want to give this stuff a second chance at me. Congratulations on finishing your chemo!!!
I feel much better about all of this! I've had so much trouble getting to sleep at night the last few nights; hopefully tonight I will get a good night's sleep. It's back to work full force next week; I got the driving ok from my surgeon today. ------------- 2.5 cm TNBC, BRCA-, diag. 2/11, neoadj chemotherapy, uni MX, y2cm,2/16 nodes, RCBII, tumor retested 5-10%ER+,PR-,Her2-, rads, clin trial eribulin 10/11-2/12, tamox. |
Posted By: christina1961
Date Posted: Jul 22 2011 at 6:21pm
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Martin,
I am going to Dr. Mayer, by the way! Thanks again for the recommendation. ------------- 2.5 cm TNBC, BRCA-, diag. 2/11, neoadj chemotherapy, uni MX, y2cm,2/16 nodes, RCBII, tumor retested 5-10%ER+,PR-,Her2-, rads, clin trial eribulin 10/11-2/12, tamox. |
Posted By: TNinTN
Date Posted: Jul 22 2011 at 6:45pm
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I'm so happy you were able to get an appointment with Dr. Mayer. We know several of her other patients (including some posters on this site) and we all think she is wonderful. Please give her our best and let us know what she recommends.Martin & Susan ------------- Wife age 53@dx TN IDC Stage IIA 7/10; BRCA1&2 Neg; BROCA Neg; LN Neg; taxol+cisplatin+/-RAD001x12(clinical trial); lumpectomy 12/10;ACx4; 33 Rads complete 4/11; NED 5/5/11 |
Posted By: mainsailset
Date Posted: Jul 22 2011 at 9:39pm
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Christina, don't forget to up your doseage of Vit D3 in prep of the radiation! ------------- 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 |
Posted By: christina1961
Date Posted: Jul 23 2011 at 12:40am
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Mainsailmet,
I haven't heard about the D3 recommendation. I had begun to supplement it prior to surgery and was told to quit taking it. I suppose I can start taking it again now. ------------- 2.5 cm TNBC, BRCA-, diag. 2/11, neoadj chemotherapy, uni MX, y2cm,2/16 nodes, RCBII, tumor retested 5-10%ER+,PR-,Her2-, rads, clin trial eribulin 10/11-2/12, tamox. |
Posted By: christina1961
Date Posted: Jul 23 2011 at 12:58am
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The only thing I'm a little nervous about is that I have to wait until the middle of next month to see Dr. Mayer and I could probably start radiation the first week of August. How long is recommended between mx and radiation? ------------- 2.5 cm TNBC, BRCA-, diag. 2/11, neoadj chemotherapy, uni MX, y2cm,2/16 nodes, RCBII, tumor retested 5-10%ER+,PR-,Her2-, rads, clin trial eribulin 10/11-2/12, tamox. |
Posted By: 123Donna
Date Posted: Jul 23 2011 at 1:25am
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Christina, Please read the following links/threads about the importance of Vitamin D. Most of us are deficient when diagnosed with Triple Negative Breast Cancer. I was watching the Dr. Oz show on Thursday. It was a rerun about Cancer. He said the #1 Vitamin to prevent cancer was Vitamin D. http://forum.tnbcfoundation.org/vitamin-d3_topic5338_page24.html?KW=Vitamin+D3 - http://forum.tnbcfoundation.org/vitamin-d3_topic5338_page24.html?KW=Vitamin+D3 http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4807927&trail=20#1 - http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4807927&trail=20#1 http://www.vitamindcouncil.org/health-conditions/cancer/breast-cancer/ - http://www.vitamindcouncil.org/health-conditions/cancer/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 |
Posted By: TNinTN
Date Posted: Jul 23 2011 at 7:26am
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Susan had surgery on December 9, then a second round of chemo which lasted until February 3rd (the first round didn't dissolve her tumor completely either), then started radiation in the middle of March. ------------- Wife age 53@dx TN IDC Stage IIA 7/10; BRCA1&2 Neg; BROCA Neg; LN Neg; taxol+cisplatin+/-RAD001x12(clinical trial); lumpectomy 12/10;ACx4; 33 Rads complete 4/11; NED 5/5/11 |
Posted By: mainsailset
Date Posted: Jul 23 2011 at 11:34am
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Generally radiation is set for about 6 weeks after a mast...but it will always depend on the healing of the patient and the surgeon is the one who will determine when you're ready. You can double team things a bit by having your first visit with the radiation onc, your initial xrays and tatoo, but that's about as much as you can overlap.
The D3 not only helps us with TN in general, it helps the radiation be more effective and in my case helps diminish the side effects of radiation. There are a ton of threads here on D3 and it's surely one of our best tools. ------------- 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 |
Posted By: rigatonismom
Date Posted: Jul 23 2011 at 12:28pm
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Hi Christina,
I have a simular story to yours. I had A/C-T with less than Cpr. I had 3/22 nodes positive at surgery. I have finished radiation with axillary node boost and electron radiation of the mediastinal area. I am going to start a clinical trian next month that is a two arm study with Cisplatin for both arms and then a PARP for arm B for an additon weekly infusion for 6 months. I too am apprehensive because of the residual disease. My onc is part of an NCI group and found this trial for me. The trial number is Hoosier Oncology Group BRE09-146:PARP Inhibition after Preoperative Chemotherapy in Patients with TNBC or ER/PR+, HER2 Negative with Known BRCA1/2 Mutations
You might look at this one. Another woman has started it at my facility and is doing well.
Nita ------------- DX 09/10 TNBC Stage3c, grade3, Tumor 2.7cm, chemo started 9/29/10, AC x4, Taxol x12, lumpectomy 4/11/11-tumor .6cm, 3+/22 nodes, radiation x 30 finished 6/30/11.Clinical Trial Cisplatin,PARP 8/23/11 |
Posted By: 123Donna
Date Posted: Jul 23 2011 at 12:41pm
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Nita, Here's the link to your clinical trial: http://www.clinicaltrials.gov/ct2/show/NCT01074970?term=Hoosier+Oncology+Group+BRE09-146&rank=1 - http://www.clinicaltrials.gov/ct2/show/NCT01074970?term=Hoosier+Oncology+Group+BRE09-146&rank=1 The purpose of this trial is to evaluate 2-year disease-free survival in this patient population treated with single agent cisplatin and patients treated with cisplatin in combination with PF 01367338 following preoperative chemotherapy. Side effects and tolerability of this treatment in patients with residual disease following preoperative chemotherapy will also be observed and characterized.
------------- 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 |
Posted By: TNinTN
Date Posted: Jul 23 2011 at 1:14pm
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Since Susan had another round of chemo after her surgery it was quite a bit longer after surgery before radiation started. Mainy's time frame of 6 weeks or so was what was used for Susan only it was after the end of the second round of chemo rather than after surgery. Seems like I remember them saying 6 - 8 weeks was their goal. They felt (and were right) that it would take 6 weeks for her to recover enough from the chemo to be strong enough to start radiation. ------------- Wife age 53@dx TN IDC Stage IIA 7/10; BRCA1&2 Neg; BROCA Neg; LN Neg; taxol+cisplatin+/-RAD001x12(clinical trial); lumpectomy 12/10;ACx4; 33 Rads complete 4/11; NED 5/5/11 |
Posted By: rigatonismom
Date Posted: Jul 23 2011 at 1:15pm
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Thanks Donna. After reading some of the other posts about the platinum drugs, I'm glad I signed up for this one. I will probably start in late August. I know I have to have another MUGA scan. We are taking a short vacation to Napa Valley for a little breather before we start again.
Nita ------------- DX 09/10 TNBC Stage3c, grade3, Tumor 2.7cm, chemo started 9/29/10, AC x4, Taxol x12, lumpectomy 4/11/11-tumor .6cm, 3+/22 nodes, radiation x 30 finished 6/30/11.Clinical Trial Cisplatin,PARP 8/23/11 |
Posted By: 123Donna
Date Posted: Jul 23 2011 at 1:31pm
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I love Napa Valley. We visited there last June. Enjoy!
------------- 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 |
Posted By: jloon
Date Posted: Jul 23 2011 at 1:36pm
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I agree with Donna and would definitely get at least a second, if not a third opinion about the chemo. Everyone is different but if I were you I would be as aggressive as possible, while you still can. You are lucky that you are only stage 2 now and the first chemo was doing something. The new information coming out about the 6 subtypes of TNBC explains why different people are having different responses to different treatmensts. For example, I was diagnosed stage 4 when I started Cisplatin and Gemcitibine - it literally kicked butt on my cancer whereas some TN people have little response. My biggest advice would be to make sure you are being regularly monitored with good scans to ensure that the chemo IS working. If it's not showing a good response, then stop and try something else. Don't waste anytime hoping it will start to work. ------------- 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 |
Posted By: christina1961
Date Posted: Jul 23 2011 at 2:36pm
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Thank you, Nita. That is the same trial I stumbled across in my research but the closest location to me was over a 7 hour round trip. That's why I decided to seek a second opinion within my own state. I did talk with the trial director who was extremely nice, and they are sending a packet to me on the trial.
Jloon, thank you. I'm so sorry you are dealing with mets. I do feel lucky that I am stage 2 right now and want to do everything I can to ensure the best outcome. I really hope a platinum drug will be recommended because I am basal subtype. ------------- 2.5 cm TNBC, BRCA-, diag. 2/11, neoadj chemotherapy, uni MX, y2cm,2/16 nodes, RCBII, tumor retested 5-10%ER+,PR-,Her2-, rads, clin trial eribulin 10/11-2/12, tamox. |
Posted By: bonsi77
Date Posted: Jul 23 2011 at 5:12pm
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Christina: My mom had a similar situation to yours. She was dx TNBC Stage 2b/3a and at time of DX her tumor was 4.5cm x2.5cm and she had positive nodes. After 4 rounds of AC DD and 4 rounds of taxol DD she had a BMX. The pathology came back with some residual disease left in 3 of her lymph nodes and unmeasurable amount in her breast. Due to the fact that her chance of recurrence was high since she did not achieve PCR we opted for her to get some additional chemo. Her Onc was on the fence about it saying he does it on a case by case basis in these situations. My mom handled the first round of chemo well and had minimal side effects so he opted to give her additional chemo. She did 4 cycles of Gem/Carbo. Once that was done she went on to have 28 RADS and she did get RADS to her axilar area as well. Personally I think if you can handle the extra chemo get it as I think the best defense against this beast is to hit hard the first time around. My mom handled the additional chemo well and we can only hope that this helped her chances of it not coming back. I wish you the best of luck in whatever you decide. Diane ------------- My Mom DX 7/13/2010 at age 61 TNBC Stage 2B/3A - 4.5cm tumor 3/19 nodes . Chemo AC x4 DD, Tx4 DD. BMX 12/10/10. |
Posted By: MsBliss
Date Posted: Jul 23 2011 at 6:44pm
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Christina, Why did they tell you to quit taking vitamin D? It does not add any surgical hazard and it is very important to get your levels up...it helps with all aspects of treatment and recovery. |
Posted By: christina1961
Date Posted: Jul 23 2011 at 11:29pm
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Thank you for sharing, Diane. I am ready to do more chemotherapy- I agree, I want to do all I can now.
Ms. Bliss, I don't understand why they wanted me to stop taking it but the hospital nurse wanted me to quit taking it prior to the surgery. I am starting back tomorrow morning. I am probably going to start on 2,000 units a day for now - the doctor only had me on 800 units a day and my levels were really low - I think it was 18. I'm going to ask about being put on 10,000 units weekly if my levels don't improve quickly. ------------- 2.5 cm TNBC, BRCA-, diag. 2/11, neoadj chemotherapy, uni MX, y2cm,2/16 nodes, RCBII, tumor retested 5-10%ER+,PR-,Her2-, rads, clin trial eribulin 10/11-2/12, tamox. |
Posted By: SagePatientAdvocates
Date Posted: Jul 23 2011 at 11:47pm
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Dear Christina, good luck to you!!!!! I think you have received excellent advice from Martin... If you can manage it I would also suggest a visit to Dr. Edith Perez at Mayo Clinic in Jacksonville. I know Vanderbilt is an easier trip for you but you don’t have to have your treatment at Mayo just get a third opinion there. http://mayoresearch.mayo.edu/staff/perez_ea.cfm - http://mayoresearch.mayo.edu/staff/perez_ea.cfm 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 |
Posted By: mainsailset
Date Posted: Jul 23 2011 at 11:50pm
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Christina, be sure that when you talk with your onc that he doesn't give you a script for the 50,000 units. That's the wrong stuff, been there, done that, it's not the right one for us. If you are indeed at 18 you may want to go over to the D Council website or the Linus Pauling Institute where you'll fid that the 2,000 IU daily won't really raise your levels to where a cancer patient needs them to be. Also, the D3 needs to be taken along with a CalMag supplement. I was on 8,000 IU a day for nearly 6 months before my levels got to 50. It's not a quick process as you will discover for yourself.
Best of luck. M
------------- 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 |
Posted By: 123Donna
Date Posted: Jul 24 2011 at 12:20am
Please read these links that I posted. I wish I knew the importance of Vitamin D when I was diagnosed. It wasn't until after surgery and starting chemo that I found this forum. The wonderful ladies here were the first to educate me about Vitamin D3. My levels were 19 when first tested, very deficient. It took supplementing with Vitamin D3 (not D2) of about 7,000 to 8,000 ius for over 6 months to get my levels up. It is the #1 supplement that will actually enhance chemo and radiation and help you recover from surgery. Many times nurses and doctors are not trained in nutrition and to be safe before surgery, they'll tell you to stop taking supplements.
------------- 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 |
123Donna wrote:Posted By: christina1961
Date Posted: Jul 24 2011 at 2:21am
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Thank you, Steve. Dr. Perez looks wonderful! I don't know if I can manage the trip within the time frame - but if no addn chemo is recommended, I will probably do my best to manage it! I was just near Jacksonville recently- it is about a 8-9 hour trip. Donna, That is interesting to learn about Vit D- I need to really increase my dosage. I'm afraid I am probably going to have to go to a GP to get any supplemental D3 prescribed or do it on my own. My onc just is not convinced that more than 800 units daily is warranted. Is there any particular brand of Vit D3 available over the counter that is rather concentrated? The brand I have is 400 unit tablets. ------------- 2.5 cm TNBC, BRCA-, diag. 2/11, neoadj chemotherapy, uni MX, y2cm,2/16 nodes, RCBII, tumor retested 5-10%ER+,PR-,Her2-, rads, clin trial eribulin 10/11-2/12, tamox. |
Posted By: SagePatientAdvocates
Date Posted: Jul 24 2011 at 9:40am
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Dear Christina, just in case you want to see Dr. Perez...she is very difficult to get to see, quickly..plus, she may be on vacation. I can try to help, if you wish...send me a PM please if you would like me to write to her. 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 |
Posted By: LRM216
Date Posted: Jul 24 2011 at 10:37am
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Mainy:
While I love my onc, and she is always on top of things, and has a great rep for treating Triple negs, at the end of my chemo, my Vit D level was a 5!!!! She immediately put me on the 50,000 units script and then I continued after that with 3,000 units a day of D3. It brought my levels up to 36. I have questioned her many times about how I felt it should be higher. She always tells me that it is fine at that level, yet I read that so many gals oncs want them in the 50's. Mine always refutes this. My last Vit D reading was 32 (in early June) so she put me back on the 50,000 unit script (have 3 more pills to take - one a week). If this isn't what I should be on, as I read on your post above, what is it I should be on. You stated that the 50,000 unit script is not the correct one to be on. Please enlighten me as to what I should be taking, as I feel very strongly about this, and will insist that it be changed, no matter what her personal belief is. I googled, but I haven't come up with anything other than what she has me on. Help, please, my dear Mainy.
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 |
Posted By: 123Donna
Date Posted: Jul 24 2011 at 11:22am
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Linda and Christina, The 50,000 units the doctor prescribes is Vitamin D2, not D3. Your body needs D3 and you can buy it over the counter. I get mine at Sam's Club or Costco. I've bought Vitamin D3 in both the 5k and 2k bottles. If you read the Vitamin D Council's website and the Edges-Cam, it is safe to take up to 10k units a day. Many people on this site take 5k Vitamin D3 a day. After chemo I tested 19 for Vitamin D level. My onc put me on the presciption for 50,000 units (Vitamin D2). Thanks to Nancy and others on this site telling me about Vitamin D3, I never took the script and instead bought 5k of Vitamin D3. For a 150 pound person to increase their Vitamin D level by 10 points, they must increase their intake by 1k ius a day. Remember it takes time to get your levels up. So it's a good idea to be tested every few months until you get your levels to the 50's or 60's. The Edges-Cam says the desired level is above 60. This is from the Vitamin D Council website: In order to receive the most health benefit from increased levels of vitamin D, the proper cofactors must be present in the body. Vitamin D has many cofactors, but the ones listed below are the most important. Magnesium should be considered the most important one of all.
------------- 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 |
Posted By: mainsailset
Date Posted: Jul 24 2011 at 11:50am
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Linda,
It makes my face get wet to think of you and now Christina have not been able to get good information on the D3 which will so clearly enhance your chances of a progression free life. Donna's right with her links, they are the best place to start.
I have been on the 8,000 IU of D3 for 2 years now. I cut back to 4,000 IU a day in late July and then August when I am out in the full sun for over an hour (I'm not wandering around in my bikini so I take the 20 minute recommended and up it to the hour, haha!) In the morning I take a the 4,000 gel caps, together with a Cal Mag pill.
When I was doing radiation I ended up having a grand relationship with my radiation Onc, who initially was pretty uninterested in the whole Vit D thing but when he had to undergo my yakking everytime we met, read my articles with me and then, in his words, saw that I was in the lower 5% of side effects despite the 7-8 hr drive each day, he got curious and to his credit at the end of our journey together he was highly recommending the D3 supplementation for every one of his patients.
If you're supplementing and still that low (cancer patients need to get up into their 60's for a level) then you indeed need to bump your intake. It scares me that you are still that low, I'm now gonna buy a golf club to start swinging!  ------------- 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 |
Posted By: 123Donna
Date Posted: Jul 24 2011 at 12:46pm
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Here's the link to the Linus Pauling Institute. http://lpi.oregonstate.edu/infocenter/vitamins/vitaminD/index.html#function - http://lpi.oregonstate.edu/infocenter/vitamins/vitaminD/index.html#function ------------- 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 |
Posted By: LRM216
Date Posted: Jul 24 2011 at 3:07pm
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Mainy and Donna:
Thank you both, a lot, for enlightening me. I too have been taking the D3 on my own all along, but was totally unaware that these new pills she has me on were D2. I am actually appalled that she would not be on top of this. I have been taking a Vit D3, 2000 units pill everyday on my own since chemo ended, along with my calcium pill (1 two times a day) with each cal. pill having 600 mgs. of Vit D3. I will immediately - today - stop her pills and begin uping my own VIT D3 intake to the 5,000 units per day.
Can't thank you enough, and Mainy, maybe it's I that should buy the club and start swinging it at the onc! ------------- 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 |
Posted By: MsBliss
Date Posted: Jul 25 2011 at 6:25pm
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Christina, please give serious attention to what Donna and Mainy said re Vitamin D. I have said it before and I will say it again: Any oncologist who ignores low vitamin D levels in his/her patients is massively uninformed. IMO, it is a form of malpractice. |
Posted By: DianeEE
Date Posted: Jul 25 2011 at 8:44pm
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Hi Everyone,
I have to say that reading the posts about residual disease has made me more than a little worried. I was diagnosed in November 2010. The MRI said that the tumor was 3.2 cm with a small "feeder" tumor off of the main tumor. I did neoadj. chemo. (ACT) for 6 total treatments which ended April 22. I had a bilateral mastectomy and a preventative oopherectomy in May (I am BRCA2 positive). The tumor measured 5.1 cm when they removed it. I had 2 positive lymph nodes out of 14 taken. I had clean margins but the chest wall margin was only 1 mm. I had a small portion of my pec. muscle removed to get the clear margin in that area. My oncologist said that there wasn't any more chemo. that she could give me at that time. I have now moved on to radiation and have finished 22 treatments out of 36. They are hitting the chest wall, clavical lymph nodes and underarm area extra hard.
But, now that I read the earlier posts, I wonder if we should have done another type of chemo. drug. I was really surprised by the fact that the MRI said it was 3.2 cm initially and it ended up being 5.1 cm when it was actually removed, especially since I went through all of that chemo. The surgeon said that, perhaps the MRI did not measure it correctly as we both felt that the tumor felt smaller than it did when I was first diagnosed.
I am tentatively planning on starting the Metformin trial after radiation. But, now I wonder if I should also consider the PARP trial that was mentioned earlier. I hate to start another round of chemo. But, I'd rather kick this now than have it spread.
Any thoughts on my situation? The surgeon & onc. said that as long as I had clear margins and go through the 36 rounds of radiation, that should do it. If you have clear margins but a larger than expected tumor, is it still considered residual disease? ------------- DX 11/2010 age 43,BRCA2+,6 rounds TAC,bx mast/ovary removal 5/2011,TNBC tumor 5.1 cm,02/14 nodes positive,37 rads,Cisplatin&PARP trial.Recurrence 2/2012,TN IBC,Abraxane didn't work, Ixempra & Xeloda |
Posted By: mainsailset
Date Posted: Jul 25 2011 at 10:30pm
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Diane, I had several MRI's CAT's during and after chemo, as well as ultrasounds, and I noticed different conclusions on almost all of them...some of the conclusions were simply inaccurate and the onc and I had to revisit them. So there is that aspect of what could be going on with your results.
But your comment that your tumor grew during chemo and your onc said that there wasn't any more chemo that she could give you after your surgery has me scratching my head. I had a bit of a dustup with my onc before surgery as he wanted me to leave my port in so that we could have the option of continuing chemo.
After I finished radiation we did another CAT scan and blood tumor workup to give me a good idea where I stood. Also, as Denise has commented, the lymph nodes tell a story that will guide you on your decision making...if they were clean or not.
What we all see here on an all too regular basis is a medical person or even ourselves that under estimates the tenacity of TNBC. In other words, you may be onto something with your attitude of better safe and sorry...2nd opinons are a good thing believe me. ------------- 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 |
Posted By: 123Donna
Date Posted: Jul 25 2011 at 11:50pm
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Diane, I agree with Mainy. I'd get a second or even a 3rd opinion about getting more chemo after you're done with radiation. You're still at a point where you can ask these questions and get additional treatment if necessary. I'd consider the size of the tumor and 2 positive nodes as a reason to consider additional treatment. As we've learned TNBC can be a tricky beast and doesn't play by the rules. 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 |
Posted By: christina1961
Date Posted: Jul 26 2011 at 1:47am
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Diane,
I'm sorry you are going through this dilemma also. It is my understanding that residual disease is remaining tumor and/or lymph nodes positive for cancer following the neoadjuvant chemotherapy - pre-surgery.
I feel better that I am getting a second opinion - of course once I'm told that second opinion I'll have another hurdle, but for now I feel a bit more peaceful about it all. My advice is if you want to get a second opinion, act fast - because I called last Friday and the first available appt I could get was Aug 16.
Wishing you all the best. ------------- 2.5 cm TNBC, BRCA-, diag. 2/11, neoadj chemotherapy, uni MX, y2cm,2/16 nodes, RCBII, tumor retested 5-10%ER+,PR-,Her2-, rads, clin trial eribulin 10/11-2/12, tamox. |
Posted By: tania
Date Posted: Jul 26 2011 at 2:36am
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Diane - I completely agree with Mainy that I don't understand an oncologist saying there was nothing else chemo could offer after seeing tumor growth on ACT. I too would urge additional opinions about adjuvant chemo. ------------- DX 10/2010. 1.5cm, no nodes, grade 2. BRCA1+ Neoadjuvant chemo gem/carb/parpi trial. Bilateral mastectomy 4/2011 Adjuvant chemo 4X TC - 5/11 - 7/11 |
Posted By: dmwolf
Date Posted: Jul 26 2011 at 6:33pm
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Diane, I meant to respond also. Having positive nodes after chemo is unfortunately a big risk factor for recurrence among TNs, so it probably makes sense to at least get other opinions and check out the trials for this situation. We are on the vanguard of treatment, having had neoadjuvant chemo. Studies are just starting up to answer questions on what to do with people like us, with residual disease after treatment. Since you already had an anthracycline and a taxane, if you do decide to tack on some more treatment, you might want to do a platinum drug. Since you are BRCA2+, the ideal would be carboplatin with one of the specific PARP inhibitors, like ABT-888 or Olaparib (not BSI-201). It sucks to think about having more treatment, I know, but it could make the difference to do it now. BUT, we should emphasize that (as far as I know) there is no good data out there backing up doing more chemo after neoadjuvant treatment. The studies simply haven't been done. Which of course means that there is no right or wrong answer, only guesses. You can make a case for not doing any additional chemo as well. I don't envy you the decision. Good luck gathering more information and mulling all this over. 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. |
Posted By: 123Donna
Date Posted: Jul 26 2011 at 8:51pm
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Denise, Do you know if there are any studies out there supporting doing additional chemo if you are NED? Even though I'm currently NED and just finished radiation, I've asked 2 oncs about doing additional chemo to help prevent a recurrence. Both of them said there is no justification for giving additional chemo if you are NED. I just worry about any isolated or circulating cells. 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 |
Posted By: mainsailset
Date Posted: Jul 26 2011 at 11:54pm
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Donna, I'll ask Connie as she had mentioned this sometime ago and my feeble brain seems to remember someone here last winter talking about it.
------------- 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 |
Posted By: DianeEE
Date Posted: Jul 28 2011 at 2:51pm
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Thanks everyone for your responses. It has been so helpful. I am investigating the clinical trial that was mentioned here--it is labeled "NCT01074970, BRE09-146, PARP Inhibition for Triple Negative Breast Cancer (ER-/PR-/HER2-)With BRCA1/2 Mutations" on the clincialtrials.gov website. It appears as though I qualify and it might be a good way to get another round of more chemo. I am about 1.5 hours from South Bend, Indiana, one of the treatment locations. I haven't pursued a second opinion yet. And, I might not if I decide to do this trial. Although, I did post the question on the John Hopkins website. They have a forum where you can ask their oncologists their opinions. They stated that since I'm in the "curative paradigm" that there are no studies that show I would benefit from adding additional platinum drugs. Of course, they have not examined my chart, but it is another opinion. So, I'll keep you posted. If I do decide to do this trial, I can't start until at least 2 weeks after I'm done with radiation. My last radiation treatment is scheduled for August 12. Again, thanks for the input. I would've never investigated doing further treatment if I hadn't read this info. I feel empowered by knowing that I might be able to do something else to prevent recurrence.
Diane ------------- DX 11/2010 age 43,BRCA2+,6 rounds TAC,bx mast/ovary removal 5/2011,TNBC tumor 5.1 cm,02/14 nodes positive,37 rads,Cisplatin&PARP trial.Recurrence 2/2012,TN IBC,Abraxane didn't work, Ixempra & Xeloda |
Posted By: tania
Date Posted: Jul 28 2011 at 5:41pm
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And there are no studies that show you wouldn't benefit from additional Platinum drugs....
So glad you were able to look into the trial and can make an informed choice about this. Good luck and let us know! ------------- DX 10/2010. 1.5cm, no nodes, grade 2. BRCA1+ Neoadjuvant chemo gem/carb/parpi trial. Bilateral mastectomy 4/2011 Adjuvant chemo 4X TC - 5/11 - 7/11 |
Posted By: DianeEE
Date Posted: Jul 28 2011 at 6:28pm
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Exactly right, Tania. It's frustruating that they don't seem to know what to do with people like me (and others like me). So, I think that the best bet might be the trial. I have an appointment to talk to my oncologist about all of this on the 17th. Will keep you posted on any new info.
Thanks again for all of your support, everyone!
Diane ------------- DX 11/2010 age 43,BRCA2+,6 rounds TAC,bx mast/ovary removal 5/2011,TNBC tumor 5.1 cm,02/14 nodes positive,37 rads,Cisplatin&PARP trial.Recurrence 2/2012,TN IBC,Abraxane didn't work, Ixempra & Xeloda |
Posted By: dmwolf
Date Posted: Jul 28 2011 at 7:37pm
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Good luck, Diane. Please let us know what advice you get and so forth. This is new territory for all of us. 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. |
Posted By: KarenC
Date Posted: Jul 28 2011 at 10:34pm
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Hello all, I also participated in the PARP inhibitor/cisplatin/Gemzar Phase 11 trial recently at Stanford and asked to stop one cycle early because my nodes were not shrinking at all. I am still angry that the doctor would have had me continue when clearly there was no indication of response. The reports I read about PARP inhibitors is that they failed to meet expectations in the phase 111 trials. I am BRACA neg. I had double mastectomy two days ago ( removing the healthy breast was my choice) came home yesterday. Feel good and can walk both arms above my shoulder but of course it hurts some. The surgeon said to start immediately to keep muscles loose and before discharging me he gently raised my left arm above my head and said I could not injure the surgical site by raising the arm that high. The left arm has the positive nodes, and I will get the path report tomorrow, perhaps, when I get the dressings changed. The surgeon originally told me he would just remove "level 2" nodes, but said after looking at my hard axillary nodes in the OR he went to level 3- took a supraclavicular node. He said I have a "bad cancer" and will have a long road ahead of me of radiation and more chemo, although my onc. said maybe I was just resistant to chemo and there is no research supporting giving more chemo after neoadjuvant chemo, surgery and radiation . She will see me again when the path report comes in and I am afraid she will say there is nothing more she can do after radiation. She is Stanford trained and has been practicing a few years, so of course I feel she has reasons backing this statement about no research, but i see that many of you have had chemo twice. Has anyone had cisplatin/gemzar first and different chemo when that did not work? What was the chemo? Also- has anyone out there had one or more positive supraclavular nodes? I am assuming that indicates some metastasis. What chemo were you given? I think it is time for a second opinion at UCSF. Thank you all for being there. No one in my family knows just how serious things are for me ( mother is 90 and kids are teens) and I appreciate being able to be totally honest here and in my support groups. Thanks, Karen |
Posted By: dmwolf
Date Posted: Jul 28 2011 at 11:08pm
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Hi, Karen. I'm sorry you are dealing with a failed chemo. It just sucks when we have that information, but like Diane and others have said, it does give us an opportunity to consider doing more. You haven't had the standard of care yet, right? (no AC and Taxol ?) Just because the cancer wasn't sensitive to platinum's w/gemzar doesn't mean it won't be sensitive to either Adriamycin and/or Taxane. In your shoes I would do the standard of care now, weekly Taxol for 12 weeks followed by dose dense AC for four cycles, every two weeks. This should give you the best possible odds of getting out of this mess without recurring later. We are with you, Karen. You can count on us. 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. |
Posted By: KarenC
Date Posted: Jul 28 2011 at 11:22pm
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Thanks D, I am certainly open to more chemo-anything! I have my wig at the ready. Would the standard of care chemo start now or after radiation ? |
Posted By: 123Donna
Date Posted: Jul 28 2011 at 11:26pm
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KarenC, I'm so sorry the chemo didn't work on the nodes. The supraclavicular nodes are part of the Regional Lymph Nodes. http://www.breastcancer.org/illustrations/i0056.html - http://www.breastcancer.org/illustrations/i0056.html Please read the article Mainy posted in this thread: http://forum.tnbcfoundation.org/radiation-rni_topic8602.html?KW=RNI - http://forum.tnbcfoundation.org/radiation-rni_topic8602.html?KW=RNI When you talk to your Radiation Oncologist before radiation ask them about whole breast radiation (WBI) and regional node radiation (RNI). You may get this treatment with having a positive supraclavicular node. I had it spread to a internal mammary node. I met with 3 radiation oncologists before treatment and all 3 recommended WBI and RNI. They said if you only hit one regional node area that you tend to end up chasing the nodes with recurrences. So the theory is you hit them all at once. I was in the Iniparib/Carbo/Gemzar trial and is seemed to work on the node. I think the idea of you getting a second or even a third opinion is a great idea. I don't know why they wouldn't do chemo after the surgery or radiation. For women that do not get neoadjuvant therapy, we usually always get chemo after surgery. So if your tumor did not shrink at all then how is that different from those of us who didn't have chemo first? We get adjuvant chemo to hopefully mop up any remaining cancer cells. These are just my opinions and I hope nothing I've said will upset you. I just think TNBC doesn't play by the rules and we have to treat it aggressively. So glad your recovery from the mastectomy is going well. I couldn't lift my arm that high right afterwards. I hope the rest of the recovery goes smoothly. 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 |
Posted By: dmwolf
Date Posted: Jul 28 2011 at 11:33pm
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Good question - I don't know whether it's better to have chemo before or after radiation. My inclination would probably be to have the chemo first, then irradiate later. That way, your treatment would be more like what most people get, just with an extra dollop of chemo in the very beginning before surgery. Donna's advice on radiation is good. I'd probably do the T/AC and then follow that with the radiation protocol she had. It's a long haul, but worth it if it is just one crummy year out of a long beautiful life. Good night everyone, 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. |
Posted By: MsBliss
Date Posted: Jul 29 2011 at 12:31am
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Dear Donna, Since additional chemo is not recommended for you, maybe you can do some elective things that are pretty potent. Are you still following a supplement and life style protocol? Us tnbc girls get uber benefits from sulforaphanes, curcumin, D3, green tea, and the rest of the Edge CAM goodies.....oops, posted before I was finished....and don't forget the blueberries! Yum. Many hugs, Bliss |
Posted By: tania
Date Posted: Jul 29 2011 at 2:04am
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Hi Karen - I participted in and know quite a number of women from the Stanford trial. Any adjuvant chemo has always been recommended before radiation. I am surprised that any of the docs there would have kept you on the protocol if there was no indication it was working.
Taxol followed by AC is probably the most aggressive, although my Stanford doctor has shown me some research that suggests Taxotere/cytoxan is as if not more effective with less harsh potential side effects/toxicity. Although I did have a good response to the trial I opted for 4x TC.
Try and see Hope Rugo at UCSF. She is very familiar with the trial and has a number of us that consult with her while being treated at Stanford.
I will send you a PM and we can talk and I can put you in touch with others in the trial whose situation is most similar to yours, if that would be helpful.
Hoping you will get good news with the pathology report. ------------- DX 10/2010. 1.5cm, no nodes, grade 2. BRCA1+ Neoadjuvant chemo gem/carb/parpi trial. Bilateral mastectomy 4/2011 Adjuvant chemo 4X TC - 5/11 - 7/11 |
Posted By: 123Donna
Date Posted: Jul 29 2011 at 7:45am
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Bliss, You are always so good to remind us about Edges-CAM and lifestyle changes and how they really benefit us. I do most of Edges-CAM, but I haven't started the Co Q-10 or Feverfew. I'm trying to follow the more anti inflammatory diet. I haven't gotten back to exercising. I started walking after finishing radiation and ended up with an acute infection and radiation pneumonitis. Now about the sulforaphanes! It was the one vegetable my sons loved since birth so we at broccoli, cauliflower, brussel sprouts or spinach at every meal. When they were young they thought they were dinosaurs eating trees (broccoli). Hey it worked because its their favorite veggie now that they've grown. So I was really upset when I got breast cancer and still read all the reports about how it prevents cancer. It didn't help so much with me:) 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 |
Posted By: Barbi
Date Posted: Jul 29 2011 at 8:46am
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Karen, I had supraclavicular nodes as well as nodes in the back of my neck that lit up on PET scan prior to my chemo. I also had positive axillary nodes. My doctors wouldn't remove the supraclavicular or neck nodes as they said they "don't chase nodes". Although I think the type of chemo will certainly depend more on your cancer and you reaction to the chemo, I had, taxol/cytoxin?(whatever the standard is there)/cisplatin as well as possibly RAD0001(study), followed by lumpectomy with a small amount of residual disease left in the breast only, followed by AC, follwed by rad to breast, axillary and supraclavicular nodes and now am in the metformin trial. God - don't we go through a lot here - I never wrote it all down before. My last PET scan was negative (except for a little lung stuff they are not concerned with, but watching). Good luck in your research and decision making.
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Posted By: Suze35
Date Posted: Jul 29 2011 at 11:06am
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I don't post here often but read everyday, and thought I'd share since I fit this topic so well. I ended up with quite a lot of disease left at surgery - I did traditional AC and had a 50% reduction according to MRI, then started Taxol and Carboplatin. My palpable masses started to melt away, and by week 8, nothing could be felt. Unfortunately, the cancer figured things out and by the time of surgery 7 weeks later, I had a tumor 6cm x 3.5cm in my breast and 5 out of 9 nodes positive. A post-surgical PET scan showed 3 more nodes - 2 of them infraclavicular - so I went back for more surgery. We agreed to do more chemo, but my doctor wanted me to do radiation first - in fact, my BS, RO and MO all said rads first. Before radiation, two supraclavicular nodes popped up. I ended up doing 9 weeks total of radiation, all four fields plus extra on the supra node. I don't know if I'll come to regret doing rads first, but what is done is done. I have now started on Xeloda with Avastin. My last abdominal CT scan and brain MRI was clear (just a month ago), and I will have another PET in October to see where I stand. My MO is hoping that with NCCN support and already being on Avastin, my insurance company will continue to approve it. I will also be doing Zometa and Metformin. I agree with Donna - to me, it is no different than getting adjuvant chemo after surgery (well, my rads came first), with a little extra in the beginning. My MO is concerned about toxicity and blood cancers, but I told her if I'm here in 10 years to worry about that, I'll deal.
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Posted By: mainsailset
Date Posted: Jul 29 2011 at 12:58pm
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Suze you might want to go ahead and read the archived threads here on Zometa. My sister's been on it and swears it's really helped her bone mets, but the threads on Biophosphates raises a concern.
------------- 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 |
Posted By: Suze35
Date Posted: Jul 29 2011 at 1:34pm
| Thanks mainsailset - I will do that. I am only supposed to get it every 6 months at the moment. But I want to be fully informed. |
Posted By: mainsailset
Date Posted: Jul 29 2011 at 1:43pm
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Suze, I posted a new thread a bit ago on the report from MD Anderson on them. ------------- 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 |
Posted By: MsBliss
Date Posted: Jul 30 2011 at 3:43pm
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Dear Donna, I LOVE your story about your sons' turning into dinosaurs! Brontosaurus style eating! Remember the Flintstones?? I'm like you. I didn't do the feverfew and a few other recommendations. I couldn't integrate all of the recommendations from all of my sources; it became overwhelming. Still, the theory regarding sulforaphanes and tnbc is tied to the amount needed to be taken, which is substantial. Theoretically, the amount of sulforaphanes you need on a daily basis to have a positive effect on tnbc is at least 60mg, preferably 120. I never took that much. It is just too expensive, and I love to eat the cruciferous stuff too. Here is one study. Again, who knows whether it is really doing anything, after all, they were injecting the compound into mice. Poor little things. This study reminds me of why the FDA is trying to "medicalize" supplements and take them off the market. Big Pharma is interested in these compounds.
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Posted By: Grateful for today
Date Posted: Jan 06 2012 at 12:44am
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Hi Karen C and / or others in the Stanford and/or Kaiser area,
Karen posted on "Poor prognosis" 1/5/12 10:51: ....................."The doctors at Stanford and Kaiser are starting to give additional chemo after mastectomies to patients with residual cancer who had chemo before surgery (neoadjuvant). The usual standard of care was not to give more chemo after neoadjuvant chemo, but my cancer coordinator said this has changed in their practice. I will be getting Xeloda pills on radiation days per the Stanford onc who said this drug makes the cancer cells more receptable to radiation."................................ Is there more info you can share about the Stanford and Kaiser MD's using chemo for residual disease after neoadjuvant chemo? - Are all the oncologists doing this? - Are they treating all residual disease? - Are they treating all residual disease the same? Residual disease. RCB (residual cancer burden). RCB 0 RCB I RCB 2 RCB 3 with RCB 0 and 1 having low risk for recurrence. RCB 2-intermediate risk. RCB 3-high recurrence risk. The RCB found on some pathology reports. You may not have info on all questions. Any additional information appreciated. Also, if others from other areas/centers have any thing else to add on this, please post. Thank you. With caring and positive thoughts to all, Grateful for today...............Judy P.S.: Wasn't sure to put this on " Poor prognosis" ......or "clinical trials". This forum seemed best place to post this question. P.S.S.: For additional info on RCB-residual cancer burden: http://jco.ascopubs.org/content/25/28/4414.full.pdf+html - http://jco.ascopubs.org/content/25/28/4414.full.pdf+html This link does work......I had to try it more than once.....just wait, then click a second time. There is a place.....mid-page 1 for "full text" which includes the appendix. Note: This article: The patient total sample was only 382 patients. The chemo was not dose dense (every 2 weeks). |
Posted By: Grateful for today
Date Posted: Jan 06 2012 at 1:08am
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Addendum to above:
"Residual disease. RCB (residual cancer burden). RCB 0 RCB I RCB 2 RCB 3 with RCB 0 and 1 having low risk for recurrence. RCB 2-intermediate risk. RCB 3-high recurrence risk." ...is per the article in the link by W.F. Symmans, MD. Judy |
Posted By: christina1961
Date Posted: Jan 06 2012 at 1:25am
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Thank you, Judy. I have read this many times but each time I get something new from it. I was told I had a RCB 3.2 (based on MD Anderson's calculator)- it looks like on this study that 3.2 would be right at the cut off between RCB II and RCB III. I hope that is correct because it is more positive than what I have been thinking all along. I would love to the answers to the questions you posted. I was in search of additional chemo after I found out about my residual cancer burden and I could not find anyone to give me anything outside of a trial. BTW, I didn't qualify for the cisplatin Parp trial due to the 5-10% ER receptors. ------------- 2.5 cm TNBC, BRCA-, diag. 2/11, neoadj chemotherapy, uni MX, y2cm,2/16 nodes, RCBII, tumor retested 5-10%ER+,PR-,Her2-, rads, clin trial eribulin 10/11-2/12, tamox. |
Posted By: rigatonismom
Date Posted: Jan 06 2012 at 8:57am
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To get on the Cisplatin/PARP study, my clinical trial nurse had to ask the pathologist to retest and re-evaluate because my original path report said I was "minimally positive" on pr. the pathologist did the re-exam and called it negative because it was 1 or 2%. Nita ------------- DX 09/10 TNBC Stage3c, grade3, Tumor 2.7cm, chemo started 9/29/10, AC x4, Taxol x12, lumpectomy 4/11/11-tumor .6cm, 3+/22 nodes, radiation x 30 finished 6/30/11.Clinical Trial Cisplatin,PARP 8/23/11 |
Posted By: mainsailset
Date Posted: Jan 06 2012 at 10:14am
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This article just popped up in my email box http://onlinelibrary.wiley.com/doi/10.1002/cncr.27376/abstract;jsessionid=AC3D160AFF1AED573CDAB9A20130E630.d03t02 - http://onlinelibrary.wiley.com/doi/10.1002/cncr.27376/abstract;jsessionid=AC3D160AFF1AED573CDAB9A20130E630.d03t02 which it would seem to me to underscore the way we answer the question of lumpectomy vs mast. Residual disease, the article says, is a burden specifically of TN so it would seem more weight should indeed be given to after surgery chemo as well as a mast. What I didn't see is a discussion in the article about whether the patients studied underwent radiation which certainly would have an impact. Whatcha think? ------------- 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 |
Posted By: rigatonismom
Date Posted: Jan 06 2012 at 11:56am
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Hi Mainy, What I have had in my head is that if we have a recurrence, it is usually distal or to another organ not just the lymph nodes. Of course, Donna's was to a node that wasn't too far away. That node wasn't removed with the Bi-MX. Interesting questions though. Nita ------------- DX 09/10 TNBC Stage3c, grade3, Tumor 2.7cm, chemo started 9/29/10, AC x4, Taxol x12, lumpectomy 4/11/11-tumor .6cm, 3+/22 nodes, radiation x 30 finished 6/30/11.Clinical Trial Cisplatin,PARP 8/23/11 |
Posted By: 123Donna
Date Posted: Jan 06 2012 at 12:32pm
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Mainy, Thanks for posting the study. The article was on tumors removed after a lumpectomy. It doesn't talk about radiation, but I would assume that most TN's would have radiation after a lumpectomy. The bigger question might be what areas are most associated with local failure and if those areas were radiated. It is my understanding that radiation is mostly to the breast area and axilla nodes, but often times not to any of the regional nodes (RNI). I'd be curious to see a breakdown by treatment type and where the local failure occurred. I agree with you this brings up a bigger question for us with TNBC on lumpectomy vs mastectomy. I'm glad we're seeing more studies with breakdown by bc type. Maybe in the future we'll see more detailed studies for TN alone by surgery type, chemo, radiation, etc. to help us identify better treatment approaches instead of this one size fits all approach. 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 |
Posted By: mainsailset
Date Posted: Jan 06 2012 at 1:16pm
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Donna, yes with a 51% TN evidence of unclear margins vs the 32% in the others it does lead one to definitely add weight to going the full mast the first go round. It's disconcerting to think of having a lumpectomy, not having clear margins but not knowing it for a period of time so that the then untreated cancer cells are unleashed until the reexcision takes place. Just for fun and clarity here's the definition of reexcision http://www.breastcancer.org/treatment/surgery/lumpectomy/reexcision.jsp - http://www.breastcancer.org/treatment/surgery/lumpectomy/reexcision.jsp
It also occurs to me that it is not unheard of for a TN to be an early stage and have the oncologist recommend the lumpectomy route but because of the early stage the onc would not be inclined to recommend radiation. Color me a worrywort but since I've been the recipient of incorrect path reports I can't help but worry that one would have a lumpectomy, followed by an inaccurate path report declaring all clear and a decision not to do radiation...followed by a recurrence.
------------- 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 |
Posted By: 123Donna
Date Posted: Jan 06 2012 at 2:26pm
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Also just from my personal experience, I know that TNBC can travel easier through the lympahtic and blood. In my situation the sentinel nodes were clear after the surgery, but later my recurrence showed that some cells had in fact traveled to a regional node (internal mammary node). It shows you that TN cells don't always travel through the sentinel nodes. My original MRI before surgery showed all the nodes (local and regional) to be clear, but as we know MRI's don't pick up isolated cancer cells. We need more TN research as to the benefits of radiation on both lumpectomy and mastectomy and to what areas, local or regional nodes areas. I think additional research will help shed light on this important discussion. 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 |
Posted By: KarenC
Date Posted: Jan 06 2012 at 2:27pm
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Hello all, Judy, thank you for your questions. I wish I could answer all of them, but I can only tell you of my experience. Since I had residual disease after the Gemzar/Carb/Parp trial , the doctors at both hospitals recommended ACT for me, then rads. When I spoke to the trial coordinator last week she said this was becoming more common now in their practice. I will ask my non-trial onc when I see her in two weeks why she offered more chemo. My RCD is 3 and I was open to anything they suggested- however I don't know if others with lower RCDs are offered additional chemo. Is it correct that the subtypes of our cancer predicts how and what we will respond to? Karen ------------- 2/25/11 BX Lft SNode/TN.Trial of Gemzar/Carb/Parp 3/31-6/31.BMX 7/11.Clear mrgns,6/30 nodes.TaxolX12,DD A/CX4 done1/3/12.25 Rads/Xeloda/bolus pad done 2/28/12.PET-7/12 BRCA-Ki6720%.Stg111a,gr3,RCB3 |
Posted By: christina1961
Date Posted: Jan 06 2012 at 2:31pm
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Mainy,
Thank you for posting the study. Experiences from this support group led me to seek the benefits of radiation. I had a four field radiation experience which I believe treated my axilla as well although it never was red or sore.
My surgeon recommended a mastectomy for me following neoadjuvant chemo. He said sometimes it was hard to tell where the cancer was if it had fragmented due to the chemo. I checked with a couple of his other patients and he had recommended lumpectomies for them so I knew he wasn't just a "mastectomy guy." He is also a very cautious, conscientious oncology surgeon and strongly patient oriented. He wasn't pushing radiation, though, but I wanted it with the two positive nodes found. ------------- 2.5 cm TNBC, BRCA-, diag. 2/11, neoadj chemotherapy, uni MX, y2cm,2/16 nodes, RCBII, tumor retested 5-10%ER+,PR-,Her2-, rads, clin trial eribulin 10/11-2/12, tamox. |
Posted By: Lee21
Date Posted: Jan 06 2012 at 2:52pm
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Donna123 and Mainsailset, Regarding the paper from Cancer that was cited, I am wondering what the typical time lapse between initial and re-excision is. Assuming the typical sequence of surgery->chemo (reversed if neoadj)->RT, I would imagine the timing of re-excision would be before adjuvant therapy. The paper is fairly limited in its scope. I posted the abstracts to 3 papers addressing the role of RT in TNBC. See under TNBC met/recurrence->people who did not respond to ACT. ------------- 12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant 1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30 11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm |
Posted By: Lee21
Date Posted: Jan 06 2012 at 2:55pm
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One more tidbit I thought I would pass one. I was told by one of the surgeons that occasionally, a sentinel node could be in the internal mammary chain but these nodes are not accessed during standard surgery because it would involve opening up the chest cavity.
------------- 12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant 1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30 11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm |
Posted By: 123Donna
Date Posted: Jan 06 2012 at 3:05pm
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Lee, My tumor was in the upper outer quadrant (11 oclock position away from chest wall). What makes my recurrence a little bit different is the recurrence was to the inner mammary node (inner node, center of chest under rib cage). So while usually the cells will travel to the nodes closest to the tumor, it's not always the case as in my situation. It just shows how dangerous TNBC can be. 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 |
Posted By: Lee21
Date Posted: Jan 06 2012 at 4:13pm
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Donna That is disconcerting. Did you get a MRI at the time of diagnosis? Perhaps your tumor was multicentric. I know there is a lot of disagreement between centers regarding the role of pre-op MRI. I guess it is possible that there were mets to the inner mammary node at the time of diagnosis. But of course, that is all conjecture. From your signature, it didn't seem like you had RT initially. The location of the internal mammary nodes may be too deep for RT anyway without doing a lot of damage to other organs such as the heart. I am concerned about RT to the heart -- my lesion is on the left and there is a recent report showing a significant increase in coronary stenosis in women receiving RT particularly on the left side. If your lesion was on the right, perhaps you were spared. Lee ------------- 12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant 1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30 11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm |
Posted By: 123Donna
Date Posted: Jan 06 2012 at 4:23pm
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Lee, Yes I had an MRI preop, just after diagnosis and right before my surgery. The nodes all looked normal on the MRI. My tumor and recurrence was on the right side, but I too was worried about RT and damage to other organs. I ended up having a type of RT called IMRT. You might want to check IMRT and see if there are any studies showing the benefits on damage to other organs like the heart, lungs, etc. It's so scary that we have to choose a treatment knowing there could be potential long-term side effects down the road. 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 |
Posted By: rigatonismom
Date Posted: Jan 06 2012 at 5:21pm
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HI Guys, I had a lumpectomy after neo-adjunct chemo. After surgery I had a 5 port radiation. We have an MD Anderson Radiation here so I felt I was getting the best. I had one port that was whole breast two ports (one from the front and one from the back) that got the lymph node area(Regional Node Iradiation) and then 2 ports that were an electron radiation therapy for the mediesinal nodes. I'm not sure if this adds to or just clouds the water. Nita ------------- DX 09/10 TNBC Stage3c, grade3, Tumor 2.7cm, chemo started 9/29/10, AC x4, Taxol x12, lumpectomy 4/11/11-tumor .6cm, 3+/22 nodes, radiation x 30 finished 6/30/11.Clinical Trial Cisplatin,PARP 8/23/11 |
Posted By: debB
Date Posted: Jan 06 2012 at 5:24pm
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Hi Lee and Donna,
Lee- I am currently doing radiation and the RadOnc said that insurance will cover IMRT for rumors on the left to avoid the heart and he got them to cover it for my tumor on the right because he said my lungs came up high. Sounded odd to me but he got it covered! As far as the internal nodes go, I have always been concerned about them, partially from reading Donna's info, but because that area has ached on me since part way thru chemo. My MRI read as normal and they never palpated any nodes to be concerned about, but my final path showed that it had made it to one node and chemo had killed it. I did not map to internal nodes for sentinel nodes as they thought I might with a medial tumor, but it is still worriesome! The RadOnc zapped all of my local nodes, including the internal ones because the CT scan he did for planning showed enlarged nodes not only in the axillary nodes, but internal and super and subclavicular also. We know they can be enlarged even from the trauma of surgery but he was willing to do it and I would rather be safe than sorry! Deb ------------- Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial |
Posted By: mindy555
Date Posted: Jan 08 2012 at 5:52pm
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This is such a good thread. I hope we keep it alive with new and updated information. I know at the time of surgery I'll have residual and want to know how to best handle the situation. I'm on my 4th round of FEC with 2 more to go. The most remarkable shrinkage (by ultrasound) was in the beginning. TN is a persistent little devil. Off subject.. my last local onc examined my breasts. This was Tuesday Jan 3rd, same day as I was to have 4th round of chemo. She felt what I was pretty certain about... a 30-yr old silicone implant encapsulation. She was alarmed and wanted to put the chemo off, saying maybe the FEC wasn't working and I needed to change. Knowing my history, this comment surprised the hell out of me.. especially after enough MRIs and ultrasounds to know my case. I said "No, I want my chemo today!" I felt that a 90% reduction on FEC after failure on Taxol was compelling enough to continue all 6 rounds. I asked if she thought an ultrasound after would be beneficial though. She said no, it would just muddy the issue. HUH? I called that night, left a message for my fave nurse to set up an ultrasound. Even though I was pretty certain about the encapsulation, I didn't want to go 3 weeks in worry. The ultrasound was set up..I was right about the encapsulation causing what felt like thickening and possible tumor.. The shrinkage of my actual cancerous tumor was only 3 & 4 mm from the last ultrasound on 12/12. This told me it was slow-go from here with only 2 treatments left. At that rate and with still over 1 cm at the largest point I reasonably don't expect a cPR. I've read only 1/4 of women achieve such anyway. Nobody has even mentioned radiotherapy. I have a consult with an MDA surgeon on the 25th. The first one was so brief. Honestly, I think both of my oncologists are off in some ways.. The one here is starting to make me scratch my head and wonder.. the one at MDA has lost interest in my case. I'm willing to go elsewhere for more opinions. I have no idea where this ramble is leading, other than I have a lot to learn on my time-line. I'm thinking a lot about adjuvant therapy. My current MDA oncologist mentions it only in a setting of "if this thing reoccurs and clinical trials"...She led me to believe there were no trials for residual tumor participants. Or maybe that's what I assumed. I've learned so much from you all. One for BRCA 1 positive might be fitting. Thanks for letting me drone on about these thoughts I've been having for a while now... and anticipating my next steps. It helps to put it down in writing. ------------- Dx July 2011 56 yo Stage I IDC,TN,Grade 3 Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia Daughter also BRCA1+ Mass grew on Taxol FEC 6x better BMX 3/19/12 pCR NED BSO 6/2012 |
Posted By: christina1961
Date Posted: Jan 08 2012 at 6:51pm
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Mindy,
I've had a lot of time on my hand the first few days after my infusions and I have entered all types of residual tumor scenarios into the MD Anderson calculator. What I found was that the remaining tumor bed can be quite large, but even one positive node with 2mm of cancer really increase the RCB. (You may already know this because the weighting is explained in some of the studies; I'm just not math savvy enough to understand it.) If you have no positive nodes and a 1 cm tumor bed, even with 100% cellularity, you might be a RCBI (try it and see.) I've thought I was a RCBIII all this time (because they told me I was 3.2 RCB) but careful reading of studies, and entering my data into the MD Anderson calculator revealed that I am a RCBII (granted, at the upper end, but I'll take whatever positive news I can get!)
I'm glad they are doing ultrasounds with you - I got no ultrasounds, only clinical exams and since the expectation was that I was having a pcr or near pcr, I was emotionally devastated when the surgery was done and the remaining tumor was nearly as big as it began. It should be a minimum standard to do ultrasounds throughout in my opinion.
Even though my reconstruction options are probably more limited, I am glad I had radiotherapy - but I had two positive nodes. I'm also glad I had ALND. I recently listened to an interview with Eleftherios P Mamounas, MD on "Research to Practice" (which has an iPhone app) about ALND. I highly recommend listening to the available interviews on Research to Practice. There is "Breast Cancer Update, Issue 3, 2011 with Dr. Joyce O'Shaughnessy - the interview regarding ALND is in the Breast Cancer Update, Surgical Ed., Issue 1, 2011 section. ------------- 2.5 cm TNBC, BRCA-, diag. 2/11, neoadj chemotherapy, uni MX, y2cm,2/16 nodes, RCBII, tumor retested 5-10%ER+,PR-,Her2-, rads, clin trial eribulin 10/11-2/12, tamox. |
Posted By: Grateful for today
Date Posted: Jan 08 2012 at 7:06pm
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Hi Mindy and all,
This is what I understand about abbreviations...cCR...pCR: cCR: clinical complete response (prior felt mass on exam is no longer felt) pCR: pathologic complete response (no cancer cells found on pathology when neoadjuvant preceeded surgery) (Sometimes a partial clinical response is abbreviated......have seen different abbrevaitions. Not sure which is correct....so won't post.) It is well to be aware before surgery of the following: One can have a cCR (complete clinical response by clinical exam) and not have a pCR. Do not know how often the above occurs......it is a possibility to be aware of......and discuss with one's MD if one has questions. Hope all who have a cCR do have a pCR........but currently this has not always been the case. Agree with Mindy this is a good topic to keep active as new perspectives and info become available. Currently, neoadjuvant chemo does not always results in a pCR. For SOME of the newly diagnosed , the issue of residual cancer burden after surgery that was proceeded with neoadjuvant chemo will be important. There are current clinical trials on RCB (Residual cancer burden) whose outcomes will be important. Mindy, think it is smart to be thinking about radiotherapy. When you get that info from your MD's you can start anticipating your next steps and decisions. With caring and positive thoughts to all, Grateful for today................Judy |
Posted By: Grateful for today
Date Posted: Jan 08 2012 at 7:23pm
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Mindy,
An addendum: When I posted above, forgot that some places do not do radiation therapy consults until after surgery results known. Forgot you have not had surgery yet. On the other hand, a preliminary discussion of radiation therapy can be initiated at any time. You know yourself best.....whatever would be most helpful for you. Hope I didn't confuse things for you. Judy |
Posted By: mindy555
Date Posted: Jan 08 2012 at 8:00pm
christina- You wouldn't believe how often I play with that calculator.. :) Thanks for your comments. All important.  Judy- That's okay. Donna suggested I speak with radiology at MDA. I know there's much left unanswered until we get closer- though I want to be armed with enough information to make an informed decision when the time comes depending on my circumstances. I don't think it's right that a TN woman has to wait for a reoccurrence before she's given proper attention. This certainly doesn't mean it won't happen anyway. God knows TNs need more research anyway. Why not with residual tumor adjuvant therapy, too.... So many mysteries with this disease and subtypes. Seems to me there's no reason to not be more proactive right now. I really am starved for more information and knowledge in various scenarios to approach this with my best shot when the facts "are in." I don't know if I'll achieve this, but I'll certainly try. Oh, also one poster mentioned a couple of institutions going outside the box of standard of care by giving chemo during radiation. I'm assuming in pill form? I was glad to read this. Will try to find the post, or if it's yours or know where it is, direct us. Thank you both and ALL. Love, Mindy ------------- Dx July 2011 56 yo Stage I IDC,TN,Grade 3 Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia Daughter also BRCA1+ Mass grew on Taxol FEC 6x better BMX 3/19/12 pCR NED BSO 6/2012 |
Posted By: christina1961
Date Posted: Jan 08 2012 at 8:16pm
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Mindy,
The eribulin trial I am in allows radiation during the chemo. The chemo is given in infusions. The trial opened up the last two weeks I had radiation so I didn't do it concurrently although I could have. ------------- 2.5 cm TNBC, BRCA-, diag. 2/11, neoadj chemotherapy, uni MX, y2cm,2/16 nodes, RCBII, tumor retested 5-10%ER+,PR-,Her2-, rads, clin trial eribulin 10/11-2/12, tamox. |
Posted By: rigatonismom
Date Posted: Jan 08 2012 at 8:56pm
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The clinical trial I am on is for residual after neo-adj chemo, surgery and rad. Everyone gets Cisplatin -4 infusions over 3 months. Half also get a PARP.Nita ------------- DX 09/10 TNBC Stage3c, grade3, Tumor 2.7cm, chemo started 9/29/10, AC x4, Taxol x12, lumpectomy 4/11/11-tumor .6cm, 3+/22 nodes, radiation x 30 finished 6/30/11.Clinical Trial Cisplatin,PARP 8/23/11 |
Posted By: KarenC
Date Posted: Jan 09 2012 at 2:18am
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I will be getting Xeloda in pill form, about 1,000 mg twice a day, each day of radiation. What is the MD Anderson calculator , and is it available for any user of the MD Anderson website or is it for MD Anderson patients only? KarenC ------------- 2/25/11 BX Lft SNode/TN.Trial of Gemzar/Carb/Parp 3/31-6/31.BMX 7/11.Clear mrgns,6/30 nodes.TaxolX12,DD A/CX4 done1/3/12.25 Rads/Xeloda/bolus pad done 2/28/12.PET-7/12 BRCA-Ki6720%.Stg111a,gr3,RCB3 |
Posted By: Grateful for today
Date Posted: Jan 09 2012 at 9:57am
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Hi Karen and all,
The MD Anderson calculator for RCB (residual cancer burden) can be used by any one. Find at: http://www3.mdanderson.org/app/medcalc/index.cfm?pagename=jsconvert3 - http://www3.mdanderson.org/app/medcalc/index.cfm?pagename=jsconvert3 Article on RCB by W.F. Symmans and all: http://jco.ascopubs.org/content/25/28/4414.full - http://jco.ascopubs.org/content/25/28/4414.full THE RCB calculator is used to determine risk of recurrence after breast cancer surgery that was preceeded by neoadjuvant chemotherapy. In order to use the calculator, one needs to have a copy of the surgical pathology report. (path after neoadjufvant) Things to keep in mind (regarding Symmans article): The RCB class can be: RCB:0 RCB:I RCB:II RCB: III The RCB class is for the risk of distant recurrence in 5 years. (RCB:0 and RCB:I = low risk. RCB:II = intermediate risk. RCB: III = high risk) Some path reports will have the RCB information on it. Recognize the difference: Residual Cancer Burden: This is the number that is calculated from the path info. Residual Cancer Burden Class: The RCB "number" determines the RCB "class". RCB:0 RCB:I RCB:II RCB: III Example: the RCB could be 3 but the RCB class would be RCB II. ( RCB Class II with an intermediate risk of distant recurrence in 5 years) The article http://jco.ascopubs.org/content/25/28/4414.full - http://jco.ascopubs.org/content/25/28/4414.full noted above: Retrospective study. Included ER positive and negative and unknown (ER status). Included HER2 positive and negative and unknown (HER2 status). Total patient population: 382 patients. 241 patients who had T-FAC. 141 patients had FAC. Chemotherapy was not dose dense (not every 2 weeks). Cannot find any reference that radiation therapy was considered in the risk of distant recurrence (If anyone does find radiation consideration, please post.) If you had a pCR (pathologic complete response), this calculator would give: RCB:0 RCB Class: pCR. Low risk for 5 year distant recurrence. I have tried to present the above information as accurately as possible. If anyone has any corrections or questions on the above, please post. If you are looking at this information and articles for the first time, you may need to read a few times. With hopeful thoughts. Grateful for today...............Judy |
Posted By: KarenC
Date Posted: Jan 09 2012 at 12:23pm
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Judy, This is very helpful, thank you so much. I have a greater understanding now, and more questions. I will read the articles carefully as soon as the chemo "mists" clear in a couple of days. Did these patients have any radiation after surgery ? (I understand that you cannot find any reference that radiation therapy was considered in the risk of distant recurrence. ) Since ER and HER status was both neg and pos in the pt population, how do we with TNBC best interpret the results ? ------------- 2/25/11 BX Lft SNode/TN.Trial of Gemzar/Carb/Parp 3/31-6/31.BMX 7/11.Clear mrgns,6/30 nodes.TaxolX12,DD A/CX4 done1/3/12.25 Rads/Xeloda/bolus pad done 2/28/12.PET-7/12 BRCA-Ki6720%.Stg111a,gr3,RCB3 |
Posted By: mindy555
Date Posted: Jan 09 2012 at 10:17pm
Karen- It was your post I was referring to above. I thought this to be innovative treatment. Here's the link.. the last post in the thread I believe... http://forum.tnbcfoundation.org/topic9462_post95271.html - http://forum.tnbcfoundation.org/topic9462_post95271.html ------------- Dx July 2011 56 yo Stage I IDC,TN,Grade 3 Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia Daughter also BRCA1+ Mass grew on Taxol FEC 6x better BMX 3/19/12 pCR NED BSO 6/2012 |
Posted By: mindy555
Date Posted: Jan 09 2012 at 10:29pm
Nita- I wish you so much luck on this clinical trial! This is the type of trial I'd love to participate in after surgery. I'd like to know the benefits of going straight to adjuvant therapy then radiation vs. radiation then adjuvant therapy. Did they require you have past radiation to participate? Maybe more rhetorical and you don't have to answer. I think I saw your trial posted and can find it. I'd love to be apart of the half that gets PARP too, due to my BRCA positive status. Wishing you all the BEST! Mindy ------------- Dx July 2011 56 yo Stage I IDC,TN,Grade 3 Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia Daughter also BRCA1+ Mass grew on Taxol FEC 6x better BMX 3/19/12 pCR NED BSO 6/2012 |
Posted By: Barb060111
Date Posted: Jan 09 2012 at 10:52pm
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Mindi, There is another clinical trial (ABCDE) that is provided after standard of care is completed. It is randomized so half participants may get no treatment other than diet and exercise. It uses Avastin which has shown more positives in those who are BRCA +. I will probably be participating in the same trial as Nina. I meet with them again this week. Met with them once before prior to my radiation. Every oncologist I met with (at UPenn, Fox Chase, Dana Farber, Georgetown) all recommended radiation after surgery. Barb
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Posted By: debB
Date Posted: Jan 09 2012 at 11:41pm
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Hi Mindy,
I was one of those people who had a cCR and they thought a cPR until the final path...that was devastating since everyone seemed to be so sure and they were all but dancing in the halls. Still a great response, no doubt, but upsetting after I had an MRI, mammo, and ultrasound, none of which found the bugger...always makes me wonder if it was regenerating itself already... I am assuming that you are still planning on the mastectomy, and I am not positive, but I think the literature is more mixed for radiation afterwards, but think there were some very recent posts showing benefit. The PARP study Nita mentioned is the one that I will be starting next month as well. It does require that you do your radiation first with a minimum two weeks off before starting infusions. I like it because either way, you get Cisplatin. The PARP is the randomized part, but would be fabulous for you with the BRCA+ aspect. I did just look at it briefly and didn't see a participating center anywhere near you at all. However, the infusions are only every three weeks if you were willing to travel for it. The downside is if you get the PARP arm, you have to be there three days in a row for infusions, BUT, the follow-up is now in pill form. My original onc was against additional chemo, but the second opinion was all for throwing everything at it now, saying we only get one chance at a cure. By the way, I did ask about the residual tumor burden calculations and he really didn't seem to think they had a place in the clinical setting, for whatever that is worth. I know you will look at all your options and examine them upside down and backwards before you tell those pesky ol' docs what you want them to do!! ;~) Deb ------------- Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial |
Posted By: Barb060111
Date Posted: Jan 10 2012 at 12:25am
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Deb, My Onc said the same thing about RCB in the clinical setting. Barb
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