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AmyL
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Joined: Jan 21 2016
Location: Colorado
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Points: 237
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Posted: Jan 03 2017 at 9:31pm |
Hi, I've been off this forum for many weeks since finishing treatment in Oct 2016. Trying to settle in to my new "normal", but today I had my first post cancer mammogram. I was anxious all day about it, and as I sat in the exam room waiting for the tech to come back with my results, I was nauseous. Almost like what I imagine PTSD feels like. Thankfully, all was "good", but it reminded me that there are so many ladies out there just starting their journey. Never give up...keep thinking positive thoughts and remembering that there are cyber "friends" right here to help! I gained a tremendous amount of strength through the members of this forum. Never forget that TNBC is the disease that we HAVE. It's not who we ARE!
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Dx Dec '15, 1.1 cm, stage 1A, gr 2, TNBC, BRCA -, 1/16 lumpectomy with red/lift, 2/16 DD A/C x 4, Taxol x12, planed radiation summer '16.
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KimmyZ
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Joined: Jan 03 2017
Location: NH
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Posted: Jan 04 2017 at 6:52am |
Hi Amy, I'm new here, have been lurking for a while. I finished rads in late September 2016 and going for my first mammogram next week. I'm scared out of my mind. Your post really hit home with me. I'm so glad you got good news! Kim
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Dx 1/16 age 47. Tnbc IDC 1.5cm tumor, 1/10 pos node. Lumpectomy, 4 ACx4Taxol, 7 weeks rads w/boost. Finished treatment 9/16
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Renate
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Joined: Apr 30 2016
Location: San Antonio TX
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Points: 68
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Posted: Jan 05 2017 at 8:19pm |
Hi Amy,
Like you, I have been gone from the forum for a while...just too much going on. So glad to hear that it was good news. I finished 7 out of 12 Taxol treatments and opted to stop because of all the side effects. I am starting radiation next week. My Oncologist told me that they are getting away from doing a lot of scans because of too many "false positives". Now they have follow up appointments where he feels around to see if anything has changed. I find that a bit weird because I was never able to feel my tumor that was detected with the mammogram. Does anybody have any information about this? He is not even doing any tumor markers. My next follow up appointment is in May. I am debating if I should go back to MD Anderson after radiation for a second opinion. My doctor at MD Anderson is the one who referred me to my local Oncologist and the Cancer Treatment & Research Center in San Antonio is now part of MD Anderson so one would think they know what they are doing. I feel a bit stressed and don't want to start imagining things with any little headache or stomach ache I am getting. To make matters worth they found some tumors on my Pancreas during a CAT scan and I had an MRI of the Pancreas. The radiologist did not think it was anything to worry about but I am scheduled for another MRI of the Pancreas just prior to my May follow up appointment. I am trying very hard not to stress out and looking forward to getting past the radiation but it is hard.
Hope everybody is doing well.
Renate
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Dx: 2/12/16, TNBC, left breast&lymph, age 68, Chemo: 5/23 - 7/6/15 4 A/C, 9/26/16 Taxol 7 out of 12 only; Radiation starting 1/9/17 BMX: 3/4/16; Lymph node removal 4/7/16 Staging: Stage 3A, Grade 3;
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Lbsaeger
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Joined: Jul 05 2016
Location: Pittsburgh
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Points: 119
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Posted: Jan 05 2017 at 8:36pm |
Hi girls I just finished 4 AC and 6 out of the 12 taxol. My oncologist told me no more chemo because of the neuropathy that is getting worse. I had triple negative with a positive brca 1 gene. I had a 1.3 cm tumor that didn't spread to my lymph nodes. I had a double mastectomy first, then the chemo. Now I'm going to see an oncology gyne because I have to get a hysterectomy because of the positive gene, then finish the breast reconstruction. Oh and get rid of the port. I'm supposed to see my oncologist in a month. I can't get a mammogram to see if there is anything new. I'm worried about that. What other tests do they do? Lisa
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Diag on yearly;6-16-16; TNBC-Stage 1-Grade 3; BRCA 1+; Tumor size 1.1cm.; Neg lymph; Dbl mast with exp; 7-28. Hyster after 6 M chemo; Chemo 8/26; 4 doses AC every 3 weeks then Taxol x 12 weekly;
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Lbsaeger
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Posted: Jan 05 2017 at 10:00pm |
Hi Renate Can you tell me what side effects you had with the taxol? I had a terrible dry mouth and a lot of neuropathy in my toes and feet. My oncologist told me I was done and had enough with the three drugs. I'm worried about the neuropathy. Lisa
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Diag on yearly;6-16-16; TNBC-Stage 1-Grade 3; BRCA 1+; Tumor size 1.1cm.; Neg lymph; Dbl mast with exp; 7-28. Hyster after 6 M chemo; Chemo 8/26; 4 doses AC every 3 weeks then Taxol x 12 weekly;
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sfisher01
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Joined: Dec 04 2016
Location: Charlotte, NC
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Posted: Jan 06 2017 at 1:52pm |
Regarding Nausea...did they give you anti-nausea meds?
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Renate
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Joined: Apr 30 2016
Location: San Antonio TX
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Posted: Jan 06 2017 at 2:09pm |
Hi Lisa,
I was doing pretty well up to Taxol #6 with the cold gloves & booties. At #7 the Neuropathy in my feet became very noticeable, my eyesight was getting really bad and I had a lot of diarrhea. At this point I decided to stop the Taxol because quality of life is more important and nobody could tell me if having 7 or 12 would really make a difference. No need to be a hero unless there is a good reason. I am so glad I stopped because all the neuropathy symptoms went away and I am convinced if I had taken just one more treatment I would have had permanent damage. My eyesight is still really bad and I cannot drive at night but I was told to wait a while longer before I have my glasses changed because it can take up to 2 - 3 months for the Taxol effects to subside.
I am hoping that you stopped soon enough to where you don't have permanent neuropathy.
All the best
Renate
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Dx: 2/12/16, TNBC, left breast&lymph, age 68, Chemo: 5/23 - 7/6/15 4 A/C, 9/26/16 Taxol 7 out of 12 only; Radiation starting 1/9/17 BMX: 3/4/16; Lymph node removal 4/7/16 Staging: Stage 3A, Grade 3;
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Lbsaeger
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Joined: Jul 05 2016
Location: Pittsburgh
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Points: 119
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Posted: Jan 06 2017 at 2:34pm |
Renate Wow. It seems like my eyesight changed too. Is that a symptom of Taxol? My sixth taxol they only gave me 80%. This time I went he said no more. I was shocked and was already hooked up for chemo. I went back in to ring the bell! I was so full of emotions. You said the neuropathy went away after 3 months? I hope so. My hands just started to get some. What stage were you? Lisa🌺
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Diag on yearly;6-16-16; TNBC-Stage 1-Grade 3; BRCA 1+; Tumor size 1.1cm.; Neg lymph; Dbl mast with exp; 7-28. Hyster after 6 M chemo; Chemo 8/26; 4 doses AC every 3 weeks then Taxol x 12 weekly;
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Lbsaeger
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Posted: Jan 06 2017 at 2:36pm |
I had zofran and compazine. The compazine made me antsy so I couldn't take it.
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Diag on yearly;6-16-16; TNBC-Stage 1-Grade 3; BRCA 1+; Tumor size 1.1cm.; Neg lymph; Dbl mast with exp; 7-28. Hyster after 6 M chemo; Chemo 8/26; 4 doses AC every 3 weeks then Taxol x 12 weekly;
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Renate
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Joined: Apr 30 2016
Location: San Antonio TX
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Posted: Jan 06 2017 at 3:10pm |
Lisa,
When I mentioned the 3 months I was talking about the eye issues. As far as the neuropathy is concerned I don't know. I was told that once the neuropathy symptoms start it is best to quit because otherwise it may not go away. So I quit as soon as I felt the first tingling in my feet.
Hope yours will go away and your eyes will improve as well.
Renate
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Dx: 2/12/16, TNBC, left breast&lymph, age 68, Chemo: 5/23 - 7/6/15 4 A/C, 9/26/16 Taxol 7 out of 12 only; Radiation starting 1/9/17 BMX: 3/4/16; Lymph node removal 4/7/16 Staging: Stage 3A, Grade 3;
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Lbsaeger
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Posted: Jan 06 2017 at 3:14pm |
Oh. I had it since the first treatment but it went away before the next. It has been staying for the last 3. Rhanks❤
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Diag on yearly;6-16-16; TNBC-Stage 1-Grade 3; BRCA 1+; Tumor size 1.1cm.; Neg lymph; Dbl mast with exp; 7-28. Hyster after 6 M chemo; Chemo 8/26; 4 doses AC every 3 weeks then Taxol x 12 weekly;
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AmyL
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Joined: Jan 21 2016
Location: Colorado
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Points: 237
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Posted: Jan 06 2017 at 11:00pm |
Hi Lisa and Renate, So nice to hear from you again Renate. I struggled with my WBC count on Taxol, so treatment was prolonged to get all 12 treatments in. The tips of my toes are still numb after almost 6 months, but that's all of the negative effects I have. I also still have soreness in my breast from the radiation, but only when I stretch my arm out or up. I see my radiation oncologist next week, but I think this is normal.
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Dx Dec '15, 1.1 cm, stage 1A, gr 2, TNBC, BRCA -, 1/16 lumpectomy with red/lift, 2/16 DD A/C x 4, Taxol x12, planed radiation summer '16.
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Sunny day
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Joined: Oct 20 2016
Location: Pennsylvania
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Posted: Jan 07 2017 at 12:27pm |
Thank goodness for all the positive people and views on this site!!! It's so true, we all get down but we need to pull ourselves back up and live our lives to the fullest! A positive attitude makes all of this a little easier, prayers and faith in the good Lord help tremendously!!! I also had neuropathy in my finger,toes,and feet. My doctor lowered the dose of taxol and I finished all 12 doses. 4 months after my last taxol,my neuropathy is completely gone.! Hopefully this is some encouragement for others that are experiencing neuropathy.
Edited by Sunny day - Jan 07 2017 at 12:38pm
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Umchic
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Posted: Jan 07 2017 at 12:41pm |
Hello All,
I am here in support of my sister and aunts who have both been diagnosed with TNBC. One of my aunts was diagnosed in the early 2000's and has since lost her battle in 2004. My other aunt was diagnosed in 2013 or so and was able to catch it early enough. She had a double mastectomy and did not do any chemo. As far as I know, she has not had any reoccurrences. My sister was diagnosed at the age of 27 and is now in stage 4 with mets to her lung, liver and possibly other areas.
The main reason I am here is in support for my sister (social media @imamberrachelle) as she continues her fight. In particular, I will be looking for support outside of the traditional chemo and radiation that is typically prescribed. My family is fortunate to have great contact with my physicians and a local support network that are helping to prescribe the best treatments. Unfortunately, these treatments are not working and I am seeking support for alternative treatments (i.e Phoenix tears, holistic therapies, vitamins, etc.)
Since then, I have had many eye opening experiences and have been supporting my sister by providing her with phoenix tears, turmeric, apricot seeds, chorella pills, tea leaves from outside of the United States and any other things we can get our hands on to help in her journey.
To make a long story short, I am looking for anyone who has treated or is treating TNBC with holistic therapies and has seen success. I am attempting to provide proof to those who do not yet believe that this path should be seriously considered by my family and others who may be in a similar position. If you do not believe this path is best or know someone who attempted holistic treatment that was unsuccessful, I want to hear from you too.
Thanks to all in advance. You will hopefully be seeing me more around here in the next month or so!
Edited by Umchic - Jan 07 2017 at 1:11pm
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Here in support of my sister @imamberrachelle
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gordon15
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Joined: Jun 22 2015
Location: San Diego CA
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Posted: Jan 10 2017 at 7:44pm |
My wife has not exclusively tried foods as a remedy for Stage 3A TNBC, so we rely more on science, to date, after PET scans. We sprout brocolli seeds and eat well,. ..I don't know what non-chemo options are a good option for your sister. She is lucky to have your guidance and support. Wish we had more answers.
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wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16 PET scan stable 9-2016/ 1-2017
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Concerned Mom
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Posted: Jan 12 2017 at 5:34pm |
Hi, I am the mom of a 42 year old just diagnosed with Triple Negatve Invasive Ductal Carcinoma involving at least 1 lymph node. After much research, needless to say I am scared! She feels it growing almost daily and yet they still have to do an MRI, and waiting on genetic testing. Any suggestions To help her pain, (she has a lot) and she's not suppose to take ibuprofen. Also, a family member is pushing us toward holistic approaches that supposedly have shrunk tumors, like tumeric and pepper, Frankincense oil, etc. Does anybody have any thoughts on that? I agree that she needs good nutrition before and during treatment, but supplements can interact badly with meds. Thanks! PS this mommy needs positive stories right now!
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gordon15
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Posted: Jan 12 2017 at 6:17pm |
Concerned Mom: my wife has had cancer in both breasts, but her PET scan came out "stable" today, this is the 2nd PET/CT since she finished her therapy which I tried to abbreviate at the bottom."Stable" means it's not changed since the last PET scan, and they don't see any new cancer growth. We'll take it for sure.
IDC plus one or more lymph nodes involved is not a death sentence, my wife had/has it. She had (2) nodes cancerous but chemo killed it. I don't know if your daughter feels any lump growing daily, my wife's came about in a hurry, but she had/has a "metaplastic" TNBC which is fast growing.
If she has pain, there could be some pressure on a nerve, some members here have posted about that.
My wife was 58 when she got IDC (not Triple Neg) with lobular cancer(ILC) in her other breast Stage 2B. We have not been a believer in natural remedies, although as her PET came out stable today, we think followup diet and exercise contributed.
My wife had genetic testing, but in her case, there wasn't time to mess around with that because she was over 60 yrs old when she had this TNBC discovered in late 2015, the doctors don't think over 60 yrs old, the gene tests are that important. They wanted to attack it immediately with chemo.
I know younger women benefit from gene testing, because the ovarian cancer risk is linked. My wife is BRCA neg, androgen neg, but they did find some mutations and have targeted drugs if she has a recurrence, she is seeing a doctor at Moores Cancer cntr in San Diego/UCSD.
I don't think any holistic approaches are going to shrink a tumor, but I'm not a doctor, and I would not recommend it. I would ask others, but the problem with that and genetic testing is that it takes time, and oncologists have pretty much said chemo has a better affect if started within 30 days, the studies show, especially if any lymph nodes involved, the outcome is better if the patient makes a decision with the oncologist within 30 days, and also studies show, if you have chemo BEFORE surgery, there is a better outcome if any chemo after surgery is started about 30-45 days after surgery, I think that is because any microscopic stray cancer cells need to be killed that might be in the system.
hope this helps, I'm not a doctor. G.
Edited by gordon15 - Jan 12 2017 at 6:33pm
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wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16 PET scan stable 9-2016/ 1-2017
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Concerned Mom
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Posted: Jan 12 2017 at 8:28pm |
Thanks for your input, and I tend to agree with you about common sense nutrition. 👍🙏
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*Nancy
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Posted: Jan 22 2017 at 10:45pm |
It's been a long time since I have posted. I am almost 7 years since diagnosis in March 2010. So much has happened, good and bad. I am in the process of losing the big toenail on my left foot; they tell me it is a long-term complication of the chemo. There is minimal pain (so far) and there is nothing they can do. The nail bed is dead. I still have the lymphedema in my left arm. In the first 2 years after the end of treatment, I had maybe a dozen cases of cellulitis each year. I was constantly seeing my PCP, taking antibiotics and going to physical therapy with the lymphedema specialist. I then consulted an infectious disease specialist. Long story short: no infections over the last 1.5 years. In early May of 2016, I had my routine diagnostic mammogram...and they saw something. I was scared. My team immediately set me up for a biopsy that very day. I didn't tell anyone what was happening. The next day they called with the results: I had microcalcifications that had developed in the scar tissue at the sight of my original tumor. They were clustered only there. No malignancy. (I also had a follow-up mammogram in November and there was no change - everything was good.) My 2nd daughter got married in late May. None of my family ever knew that I was recovering from the puncture of the biopsy. (I did finally tell them all in mid-summer.) My 2 sons moved into their own apartment in late July. (I have 6 children.) After having kids in the house for 32 years, my husband and I finally had the house to ourselves. (The food and water bills have gone down dramatically.) The hardest event in 2016 was that I lost my 54-year-old brother to cancer in early January, a little over a year ago. He had 2 bouts of lymphoma, skin cancer, jaw cancer and esophageal cancer. The surgery to correct the jaw cancer left him unable to swallow for 1.5 years. (He had to have a g-tube.) The esophageal cancer ended up being too much for him. I was by his side when he died. He was my biggest support, since we had both battled cancer. I miss him so much. His name was John.
I have spent time reading and catching up here. I see many familiar names and a lot of new ones. I am encouraged by all of your stories when I read about your hopes and successes. Much of what you talk about are the emotions and questions that I had too. Being a survivor changes you. It makes you a better person. Life is so precious that to empathize with others is to acknowledge our united humanity. Thank you all for your courage. It is contagious.
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Dx March 2010, age 54, 5 mm tumor, Stage Ia, Grade 3, 0/3 Nodes, Ki-67 70%,
Lumpectomy April 2010, TC x 4, Rads x 33, Treatment completed Sept 2010, NED 06/17
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SagePatientAdvocates
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Joined: Apr 15 2009
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Posted: Jan 23 2017 at 12:22am |
Dear Nancy,
Thank you for sharing your lovely, but difficult, story with us. You have my sincere condolences for the loss of your brother.
I admire you.
warmly,
Steve
p.s. have you been genetically tested? A lot has happened, regarding cancer mutations, since your DX in 2010. I am a patient advocate and if you would like to talk about this please send me a PM and I will send you my contact info. There are no charges.
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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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