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SagePatientAdvocates 
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Joined: Apr 15 2009 Status: Offline Points: 4748 |
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 Topic: our new forumPosted: Oct 16 2012 at 10:29am |
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Dear all,
I am very pleased that the TNBC Foundation has decided to add this forum. It is a place where members can come to talk about all aspects of chemotherapy. Many here, will be starting your first treatment and have many questions and as always, I believe you will receive important information from the marvelous women who have been through it before or going through it now. Others will share experiences they are having on whatever chemotherapy protocol they are on and may have various insights/questions to share. You will see that certain women tolerate various chemotherapies with very little side effects and others have very difficult experiences. It is important that we all realize that we are all individuals and may have different reactions but it is important, I feel, for women to be aware of what others have experienced and question their oncologists about the various side effects. It is also a place to present new research, you may have seen, about promising new treatments. There will also be information presented about clinical trials. No one here will recommend that any woman enter a clinical trial instead of doing standard-of-care-approved therapies but I feel it is important for our community to be knowledgeable about new trials and be able to ask their oncologists about them. One of the important lessons I have learned is that it is important for a woman with TNBC to become more knowledgeable and if possible become an advocate for herself. This new forum, by making our TNBC family members, more knowledgeable will help in that process, I believe, and clinical trials may be an important part of that educational process. I am also hoping that there will be some discussions about supportive care services for women going through chemo such as nausea control, pain management, GI issues, hair loss etc. Hopefully this forum will help educate and support the marvelous women, and their loved ones, who are part of the TNBC Foundation family. my heart is with all here...I think it is very important to realize that TNBC can be very sensitive, at times, to various chemotherapies. We often don't hear about the women who are long-term survivors who have benefitted from chemotherapy. I hope some will return to this forum to write about their positive experiences. warmly, Steve p.s. just a suggestion, please and I am speaking as an individual not for TNBC Foundation. I have no formal link to the foundation. Originally, most of the activity on the forum was in the Talk section. Several women who first came to that forum were upset that there was talk about metastatic disease and TNBC Foundation wisely, in my opinion, started the Metastasis forum. I believe it has worked quite well and women with MTNBC can come to that forum and get support and information including what chemotherapies and/or clinical trials might be available for various metastatic conditions. I would like to suggest the new Let's Talk Chemotherapy be limited to women with women with TNBC rather than MTNBC. Again, if anyone, new to this forum, has MTNBC I believe the Metastasis forum will offer excellent support. For those with MTNBC, I just posted on the Metastasis forum about clinical trials for various metastatic disease. Edited by steve - Oct 16 2012 at 11:25am |
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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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NickiAngel
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Joined: Sep 09 2012 Location: Orange Co., CA Status: Offline Points: 10 |
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Posted: Oct 22 2012 at 2:43am |
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When I was diagnosed, we found it because the lymph nodes in my underarm were swollen and pressing on a nerve. I had also noticed some swelling and texture changes in my breast tissue. I was started immediately on A/C for 4 rounds (just finished my 3rd) and will follow up with Taxol.
After my 2nd round, my hair started to come out in clumps, so my husband helped me shave my head. I have battle nausea, but not right after chemo. It is usually at its worst 3-5 days after. I have had fatigue and bone pain. Although, I usually attribute it the bone pain to the Neupogen shots. I think my worst side effect so far has been the unbalance in my digestive tract. I have had almost every digestive side effect that you can have. Last week, I had an epiphany and started taking probiotics daily. This has been a tremendous help! Following my first treatment (within a few days), the swelling in my lymph nodes had gone down and was no longer pressing on my nerves. Today, my breast tissue is almost back to a normal texture and the swelling has receded also. So, it looks like this course of action is working. I finish my A/C treatments on the 24th, but will follow up as soon as I know what will happen with the Taxol. I hope this helps. :-)
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DX 8/30/2012 IBC (Left) prelminary stg III (BRCA1+)
A/C Chemo DD x 4 - 9/11/12 - 10/24/12 (Complete!) Taxol DD x 12 - 11/7/12 - 1/23/13 Bilateral Mastectomy & Oopherectomy expected |
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SagePatientAdvocates
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Joined: Apr 15 2009 Status: Offline Points: 4748 |
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Posted: Oct 22 2012 at 3:06am |
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Dear Nicki,
Thank you for sharing and I hope you continue to have good response to the chemo. The B and D on the keyboard are fairly far apart so I want to make sure that you have Inflammatory Breast Cancer and if so, are confident that you are seeing an IBC expert. Also are you confident your oncologist is familiar with the BRCA mutation? There is a book called Turning Heads about women losing their hair to chemo. If you feel it might be helpful to you I would be happy to send you a copy. I carry the BRCA1+ mutation and passed it on to my daughter who was diagnosed with TNBC years ago. She had AC+T as well. If you would ever like to talk privately I am sending you my contact info in a PM. I live in Los Angeles. Thank you again for sharing and good luck!!!! warmly, 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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NickiAngel
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Joined: Sep 09 2012 Location: Orange Co., CA Status: Offline Points: 10 |
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Posted: Oct 22 2012 at 3:33am |
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Thank you, Steve.
I do have Inflammatory Breast Cancer. It was found in my lymph nodes first. They did a punch biopsy which came back negative, but the results of the MRI showed the primary source of the cancer. I am limited in my doctor pool (I'm with Kaiser), however, I am very confident in my doctors abilities. They have been as aggressive as I have wanted them to be and started treatment prior to having all of the answers to all of the tests. We knew it was there, it was aggressive and TN, and we started chemo within 12 days of my lab results coming back. I would love to take you up on the offer for the Turning Heads book. I will get my info to you via PM. Thank you, Nicki |
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DX 8/30/2012 IBC (Left) prelminary stg III (BRCA1+)
A/C Chemo DD x 4 - 9/11/12 - 10/24/12 (Complete!) Taxol DD x 12 - 11/7/12 - 1/23/13 Bilateral Mastectomy & Oopherectomy expected |
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denise07
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Joined: Jun 26 2010 Location: pa Status: Offline Points: 997 |
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Posted: Oct 22 2012 at 10:18pm |
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Hello,
I just have to mention I was verylucky never once did I get sick from my chemo treatments, I had to take steroids 3 days before my treatments and then the neulasta shot the day after my chemo that was the tough one for me because every bone in my body ached for days but if that was my worst side affect I sure can live with that so for those of you who are interested and just starting chemo I will let you know what my chemo cocktail was I had and please don't mind the spelling but I can't get them all right so here it goes I had adryiamcin, cytoxin and taxatere 6 rounds every 3 weeks apart it was truely amazing I felt fine through all of my 6 treatments not even tired my onc was even amazed , as far as loosing my hair it did not bother me much because I knew it would grow back I was always more interested in my pathology reports I guess I was the odd ball when it came to loosing my hair but I would think of it this way rather the hair then my life, now my hair looks better then ever, so for everyone just about to start chemo please keep in mind not everyone gets sick everyone reacts different.
Hugs,
Denise
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DX Idc 10/07,st2,gr3,2/6 lymphnodes
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schatzel
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Joined: Oct 24 2012 Status: Offline Points: 5 |
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Posted: Nov 02 2012 at 10:18pm |
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I am scheduled for my first chemo on November 20th. It will be dose dense AC for 4 cycles, then Taxol for 4 cycles. I will need Neupogen. I am scared, but feel that it is my only chance to help prevent recurrence of the grade 3 cancer cells. Hair loss I can come to terms with, but bone pain is a little scary. I guess I will soon find out!!
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IDC stage 2, grade 3, TNBC with lymphatic vascular invasion.
Diagnosed Aug15, 2012 Lumpectomy Sept 25, 2012, |
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denise07
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Joined: Jun 26 2010 Location: pa Status: Offline Points: 997 |
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Posted: Nov 03 2012 at 12:58am |
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schatzel,
I had bone pain it was like having a bad case of the flu the shots are not fun but it is worth keeping the cell count up and fighting infection, but it is all worth of it because we are kicking cancers butt. I just noticed your diagnosis is almost the same as mine. It is a long journey but you will be just fine.
Hugs,
Denise
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DX Idc 10/07,st2,gr3,2/6 lymphnodes
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nancykind
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Joined: Mar 15 2012 Location: so adks, nys Status: Offline Points: 192 |
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Posted: Nov 10 2012 at 6:32pm |
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for schatzel - i had bone pain but the only really bad week was the week after my first taxol when i also got the neulasta shot. it was only for a few days. after that they decided i didn't need neulasta and the bone pain from the taxol was much more manageable. it still required some accomodations and wasn't fun, but it was definitely more manageable. after all you've been through i hope you find that it's just another short term challenge that you WILL overcome.
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Lg lump never visible on any films but found 9mm. Lump 1/25/12, DX 1/31@50yrs IIIC/TN/DCIS/INV, Margins Unclr, Ki67 40%,Gr2. MX L 2/24. 3.1cm total. 11/17nodes. AC/T 2xWk,33rads. 12/12 MX R. 9/13 NED!
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ging5771
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Joined: May 08 2013 Location: Kentucky Status: Offline Points: 2 |
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Posted: May 08 2013 at 8:32pm |
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I am new to the site and in a state of confusion and not sure what to do. I know what my gut tells me and I have my onc telling me something different.
I was diagnosed 11/12 and had a lumpectomy in december. Of course it is TNBC but I am stage I, node negative and tumor size 1.7 cm..I have had 30 rounds of radiation and now the onc is suggesting chemo, the TC cocktail. All along, my gut is telling me not to do it....my problem is that I am wired that I need info to make this decision and it is hard to find that info (statistics, prognosis, etc) on stage I , node neg TNBC. Can anyone shed any light on this for me?
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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: May 08 2013 at 8:46pm |
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ging5771,
I have one question, did you have radiation before chemo? Usually chemo is given first after a lumpectomy. Almost always chemo is recommended for Triple Negative, even Stage 1. The grey area seems to be tumors less than 0.5 cm. As you can see from my signature my tumor was 1.5 cm, mastectomy, clear nodes, chemo and I still had a recurrence. Chemo is all we have to try and fight this beast. Triple Negative is more likely to travel through the blood or lymph system than other breast cancers. Chemo is used to treat it systematically in the hopes of catching any stray cells that might have escaped the tumor. I hope this answers some of your questions. Glad you found us and continue to post and ask questions. Donna
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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ging5771
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Joined: May 08 2013 Location: Kentucky Status: Offline Points: 2 |
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Posted: May 08 2013 at 8:49pm |
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Thanks Donna...Yes I had radiation prior to the chemo...and thanks for your input...any info I can gather only helps me to make the decision
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SagePatientAdvocates
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Joined: Apr 15 2009 Status: Offline Points: 4748 |
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Posted: May 08 2013 at 8:51pm |
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Dear ging-
what you are describing is considered, by many, standard of care for TNBC.
were you tested for the BRCA mutation? good luck! warmly, 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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Charlene
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Joined: Aug 14 2010 Location: Atlanta, GA Status: Offline Points: 613 |
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Posted: May 08 2013 at 9:43pm |
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ging5771
I think my original diagnosis was similar to yours. I was told chemo was recommended for an ER- tumor, greater than 1 cm. I had TC chemo, but I had it before radiation, which I believe is more common. I think I would get a second opinion at this point. You are now 5-6 months from diagnosis, so that could be a factor as well. Charlene
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DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads 3/14:NED |
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: May 08 2013 at 9:43pm |
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ging5771,
You may have already read this material, but if not, the links below provide some good information. Wishing you the best, Donna
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
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SagePatientAdvocates
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Joined: Apr 15 2009 Status: Offline Points: 4748 |
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Posted: May 09 2013 at 9:40am |
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Sorry ging,
I did not see your reply to Donna. I agree, RT, first is not standard of care. I echo Charlene's advice to seek a second opinion. If you can tell us what city you live in maybe we can suggest someone. Here are some NCCN locations- warmly, 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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arabella
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Joined: Jan 28 2013 Location: Alabama Status: Offline Points: 288 |
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Posted: May 09 2013 at 10:00am |
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ging, I was told by my onc that the window to have chemo was 3 months after surgery and window for radiation was one year after surgery. My surgeon stated to me that if you wanted to have chemo prophylactically you could do it any time. Go figure......
I'm with Charlene, as hard as it may be to do, I think I would try and go for a second opinion at this point. My diagnosis is similar to yours. I did have one round of TC and it was stopped because of very severe side effects. I was then offered 3 rounds of AC which I declined and my onc was okay with this decision. I then had 25 rads which I have recently finished. I will see my onc every three months for tests and consultations for the next three years....then every 4 months for the next two years.
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Dx TNBC 1/2013; age 63; 1.1 cm; Stage 1, Grade 1(?); lumpectomy clear margins; ALND -; severe SEs to first TC and treatment stopped; radsX25; BRCA -
Recur 6/2015 Mastectomy |
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Grateful for today
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Joined: Sep 21 2011 Location: U.S.A. Status: Offline Points: 1835 |
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Posted: May 18 2013 at 1:04am |
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ging,
Just wanted to send you some caring and positive thoughts. Hope you have been able to get the information you need .....and maybe the 2nd opinion...... to make the decision about your treatment plan whether to include chemo. The initial treatment plan for TNBC is so important. If you have already made your decision, please disregard the following. Not sure which state you are closest to that has a NCCN or NCI Cancer Center. The following info may help if you are still thinking of a 2nd opinion. The NCCN (National Comprehensive Cancer Network) Cancer Centers link: http://www.nccn.org/members/network.asp THe NCI ( National Cancer Institute ) Cancer Centers link: http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list2.html If you are still deciding, you might consider confirming with your oncologist how long you have to make the decision. Each person's situation can have different variables......just be sure you have the best info for your situation to make your decision. One does need to pay attention to one's gut feelings as you said......again just as long as one has good and sufficient information for one's gut to respond to. And yes, it is hard to gather and understand so much new information.......keep asking and gathering information that you feel you need to make your decision. There is a quote by TNBC expert, Lisa Carey, MD: "It is perfectly appropriate to consider not treating these patients [with chemotherapy], and I typically draw the line at a 5-mm tumor,” said Carey" http://www.cancernetwork.com/conference-reports/mbcc2013/content/article/10165/2131856 I read this to mean she would consider not treating with chemo the cut-off for not doing chemo as 5mm. Your 1.7 cm lesion would be 17 mm. Again, I acknowledge, each case has it's own set of variables ................and that is the reason having an oncologist explain all the pros and cons of chemo in your particular case is important. When one has questions and /or having trouble deciding, the 2nd opinion can be helpful. Please do know that once any one has gotten information and made their decision, their decision is respected. With caring and positive thoughts, Grateful for today.............Judy |
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