Residual disease following neoadjuvant chemo |
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rigatonismom 
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Joined: Sep 22 2010 Location: Albuquerque, NM Status: Offline Points: 266 |
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 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
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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
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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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 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.
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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TNinTN
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Joined: Apr 25 2011 Location: Knoxville, TN Status: Offline Points: 311 |
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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.
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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
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rigatonismom
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Joined: Sep 22 2010 Location: Albuquerque, NM Status: Offline Points: 266 |
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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
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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
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Jul 23 2011 at 1:31pm |
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I love Napa Valley. We visited there last June. Enjoy!
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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jloon
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Joined: Jun 26 2011 Location: Vancouer, BC Status: Offline Points: 38 |
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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. |
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Dx 5/10 IDC stage 3 age 38. AC/D chemo. Dble Mast 11/10. No rads- mets-started Gem/Cis/Avastin. 2/11 NED. 6/11 Mets - started Gem/Carb/Iniparib- progression 11/11 Abraxane w/Avastin
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christina1961
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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.
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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.
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bonsi77
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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
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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.
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MsBliss
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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. |
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christina1961
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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.
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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.
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SagePatientAdvocates
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Joined: Apr 15 2009 Status: Offline Points: 4748 |
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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. all the best, Steve
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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mainsailset
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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
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dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear |
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123Donna
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Posted: Jul 24 2011 at 12:20am |
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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.
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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christina1961
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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. |
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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.
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SagePatientAdvocates
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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
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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LRM216
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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
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Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
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123Donna
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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. |
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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mainsailset
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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!
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dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear |
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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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 |
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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LRM216
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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!
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Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
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