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dawncoskren
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Topic: Newly diagnosed Posted: Jul 28 2013 at 11:26pm |
Thank you judy. I agree. I will check. I thought I would get 4 and 4 also. I wonder if I misunderstood.
What is the secret of keeping track of what everyone is going through. You are so good at remembering where everyone is in their treatment. I. Always impressed.
Wishing you the best. Sending hugs
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DX 6/14/13 TNBC-IDC 7/15 BRCA 1 Positive 7/16 double mastectomy 7/23 Post surgery Pathology- Stage1,tumor 2cm nodes clr. 8/16/13 4 A/c and 4 Taxol 1/6/14 implants 3/13/14 ovaries and tubes removed
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Grateful for today
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Posted: Jul 28 2013 at 10:58pm |
Dawn,
Wondering if the onc meant a total of 8 chemos ( ACx4 and then Taxol x4). Usually there is a nurse working with each onc. Maybe consider calling the onc or onc's nurse just to clarify the total number of chemo sessions versus the number each of AC and number of taxol................. Think this question is a reasonable one to clarify now.
With caring and positive thoughts, Grateful for today..............Judy
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Rocklady,
Think you started your TC x6 around June 27. So thinking you have 2 TC down and 4 to go. Hoping any side effects have been manageable with tweaking of your post chemo meds. Just wanted to send some caring and positive thoughts to you.
Grateful for today............Judy
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dawncoskren
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Posted: Jul 28 2013 at 11:35am |
I was hoping someone could help me understand treatment a little more. I saw a dr. on 7/24 they said my treatment would be 8 A/C and 4 Toxol. They made it sound very standard so I have decided to get treated closer to home . Still a Dana Farber Doc but a general oncology rather than one that deals with just breasts. After a little research it seems it isn't as standard as I thought. Of course I will ask the doc on 8/13 which is my appt in NH. I was just wondering on the thoughts of all these wonderful and knowable people I have spoke with on this site. Thanks for any info :)
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DX 6/14/13 TNBC-IDC 7/15 BRCA 1 Positive 7/16 double mastectomy 7/23 Post surgery Pathology- Stage1,tumor 2cm nodes clr. 8/16/13 4 A/c and 4 Taxol 1/6/14 implants 3/13/14 ovaries and tubes removed
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Grateful for today
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Joined: Sep 21 2011
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Posted: Jul 27 2013 at 8:14pm |
Gail, Just noticed on the Forum Home page, that today is your Birthday. Sending the Best of Birthday Wishes for health and all good things. Grateful for today...................Judy --------------------------------------------- Lauralind, Hope you are doing "OK" on the taxol. You may have already seen the thread on Taxol treatment...if not, here's the link: http://forum.tnbcfoundation.org/taxol-treatment_topic11073_page1.htmlSorry to have read your need to get a new surgeon due to the sudden and unexpected death of the breast surgeon you had chosen. Life is precious. Hoping with Dr. Lisa Carey as your med onc it might make it easier to get onto another's surgeon's schedule. With caring and postive thoughts, Grateful for today.............Judy --------------------------------------------------- Lisa L, Realize you are not "newly diagnosed"............in April of this year you posted you are a 7 1/2 survivior. which was so good to read. Noticed on the Home Forum page that today is also your Birthday and wanted to leave some Birthday Greetings for you, also. Wishing you the Best of BIrthday Wishes for health and all good things. Grateful for today................Judy
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GailF
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Joined: May 17 2013
Location: Plymouth, MA
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Posted: Jul 20 2013 at 1:49pm |
Hi Lauralind,
Sorry to hear you didn't feel well with the AC. I have been very lucky with the Taxol so far.... and the tumor has shrunk! My eighth week coming up, then two break before I start AC.
And the news of your surgeon, that is tough. Where are you located?
One day at a time...
GailF
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DX IDC TNBC 5/13 age 52, Stage II, Grade 3, 3.5cm, Taxol x4 6/3/13, A/C x4 8/26/13
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Lauralind
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Posted: Jul 18 2013 at 3:11pm |
Hi Gail,
Sorry its taken me so long to respond. Man oh Man I was sooo sick with AC it was a very hard road for me. I just had my first dose of Taxol a week ago and while I have some not so fun issues, so far its better than AC.
In the meantime, the breast surgeon I picked and LOVED died suddenly and unexpectantly. Was very sad, so now Im back to figuring out who I want and how the schedule will fit etc.
Hope you are doing well, I ll be better now about showing up here
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4/26/13 TNBC left breast 3.0 now 4.0 cm, positive node with multiple axillary inflamed nodes on pet scan. Stage 3 grade 3, genetic negative
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dawncoskren
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Location: NH
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Posted: Jun 23 2013 at 10:40am |
Gail I live in NH. My surgeon is at Elliot breast health at rivers edge in manchester nh. I haven't decided on my oncologist yet. I was going to wait to see what stage I was ..
I'm sorry you have this also I know you will do grea and kick its butt.
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GailF
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Posted: Jun 23 2013 at 12:04am |
Hi Laura,
Just reaching out to see how you are feeling. I was diagnosed shortly after you. My first chemo treatment is with the Taxol and was wondering how you are handling the AC.
One day at a time....
Gail
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GailF
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Posted: Jun 22 2013 at 8:13pm |
Hi Dawn, Yes, I was diagnosed with TNBC last month, stage 2. The oncologist at The Faulkner told us about the clinical trial. I am in the trial but I was not chosen to be have the protocol with the MM1 drug. You can go to the Merrimack Pharmaceuticals website for information.
I just finished my first cycle, 3 weeks of Taxol and continue with three more cycles (12 weeks). Where are you being treated?
Gail
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dawncoskren
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Posted: Jun 22 2013 at 4:40pm |
Hi Gail, I'm new to all of this. It sounds like you are Stage 2? I thought they didn't know that until surgery? Where did you go to get offered a trail?
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dawncoskren
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Posted: Jun 22 2013 at 4:35pm |
Hi Donna, How do you get into a trail like that?
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GailF
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Posted: May 24 2013 at 9:45pm |
Good evening, Had another good visit at The
Faulkner yesterday for screening tests.
The wonderful nurses had some trouble getting blood and suggested
putting in a port. I had a CT
scan, ECHO, and an EKG.
The research nurse called today to
confirm that my oncologist wants the port in so I will have that done next
Friday. My first infusion will
be on Monday, 6/3. I will have
another needle core biopsy, and an ultrasound of the lymph nodes and then the
first chemo.
Donna, the research
study is a Phase II clinical trial to evaluate a drug called MM-121, an
anti-ErbB3 human monoclonal antibody. The main purpose of this study is to compare the
combination of MM-121 plus paclitaxel followed by doxorubicin and cyclophosphamide. Merrimack Pharmaceuticals is supporting
this research study. Linda, as I am armed with a definitive attack plan, I feel less anxious. As I meet the wonderful compassionate people on my team, I feel calmer. I know that this will be a long road but I look forward to the positive experiences with the medical staff, other patients, their families and all the blessings that come with this crazy experience. And yes, this site is one of those blessings. One day at a time... Gail
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MLindaG
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Posted: May 20 2013 at 11:27pm |
Gail, There is something comforting about getting your info explained and talking with the oncologists and having a plan to fight this disease!! I'm glad the appointment went well and you have a plan in place. I tried to focus each night on positive affirmations and positive thoughts of my white cells eating up the cancer. I remember everyone questioning why they wouldn't do surgery first and the explanation of the surgeon made so much logic and as my tumor shrunk (Didn't notice any change until around 9 weeks) and eventually was gone I realized how good it felt to know that the chemo was doing its job. I think it would also be good to know if it wasn't working so they could pick something else to attack it. I found the nurses at the Chemo center to be fantastic.......so caring and helpful. For most of my infusions I had my Sister with me and would help me to keep my mind off of it all. We always had a magazine we were looking at or a project to discuss. (When you are from a large family there is always something going on!! LOL) We tried to keep things light. You'll meet all types of people with all types of cancers. One day it was a 21 year old with testicular cancer........a 65 year old who was told he has 6 months to live....... I got advice from both the nurses as well as some of the patients. As you go through the process you start to be the one giving out advice to the newbies! LOL I met a women who went to the same college as I did at the exact same time and was in my major........we laughed as we probably were in class together!! 40 years ago! LOL So many wonderful positive experiences with patients, patients families, volunteers and staff. It was truly amazing! While I would never wish this on anyone.........there are blessings that come from it. This site is another one of those blessings!! Thanks to everyone who posts their experiences and helpful suggestions it is much appreciated.
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Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.
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123Donna
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Posted: May 20 2013 at 10:49pm |
Gail,
Do you know the name of the clinical trial you are joining? Is this the trial? Cisplatin and Paclitaxel With or Without Everolimus in Treating Patients With Stage II or Stage III Breast CancerRATIONALE: Drugs used in chemotherapy, such as cisplatin and paclitaxel, work in different ways to stop the growth of tumor cells, either by killing the cells or by stopping them from dividing. Everolimus may stop the growth of tumor cells by blocking some of the enzymes needed for cell growth and by blocking blood flow to the tumor. Giving chemotherapy together with everolimus before surgery may make the tumor smaller and reduce the amount of normal tissue that needs to be removed. It is not yet known whether cisplatin and paclitaxel are more effective when given together with or without everolimus in treating patients with breast cancer. PURPOSE: This randomized phase II trial is studying how well cisplatin and paclitaxel work when given together with or without everolimus in treating patients with stage II or stage III breast cancer.
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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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123Donna
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Posted: May 20 2013 at 9:35pm |
Gail,
I'm so glad you had a good visit and they spent so much time answering your questions. Personally, I think you are doing a wise thing entering the neoadjuvant clinical trial. With this disease, I believe you need to throw everything at it and hope it destroys the beast. The time between diagnosis and the beginning of treatment is the worst. Once you have a plan in place, it's easier to move forward fighting this cancer. It's the waiting around and unknowing that's the hardest part. Wishing you the best. Keep us posted.
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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GailF
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Posted: May 20 2013 at 9:11pm |
Hi all,
Thank you for your comforting words of support.
Just got back from my day in Boston at Dana Farber. First, they had to rule out a very small cyst on the other breast with an ultrasound and it was determined to be benign . Met with the oncologist and sat and talked (with my sister taking notes) for almost two hours and she answered all our questions and gave me lots of information. I love it when they draw diagrams because I retain information better when it is visual. I do have a copy of my pathology report. The oncologist and surgeon recommend the chemo prior to surgery. It was very important for me to find out any options for clinical trials and it turns out that there is one that I would be a great candidate. The research nurse came in and joined our group to discuss the particulars on this trial, which will involve two additional biopsies. The biopsies are not a concern for me.
I have the protocol information and consent forms to start the trial and will go forward and sign them. I will be scheduled this week for the screening tests this week and start the first chemo infusion next Tuesday, once a week for 12 weeks, then a different chemo for 8 weeks, once every other week.
I am just so relieved to have a plan in place for this first step. I am very happy with my oncologist and also the wonderful research nurse. The facility is comfortable with such lovely competent people. I know that I am in good hands.
Today was a good day.
One day at a time....
Gail
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Lillie
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Posted: May 19 2013 at 8:50pm |
Hello Gail,
Just wanted to welcome you to the site. You have received so much good information from some of the sisters, so I will not add to the list.
Just know that we are here for you and for each other. As you said, it is great to have a Support Group who have experienced, or are experiencing what you are going through now. WE UNDERSTAND. I am glad to hear that you have a good support system with you in MA.
I look forward to future posts from you and God Bless your journey.
Love,
Lillie
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Dx 6/06 age 65,IDC-TNBC Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED
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GailF
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Posted: May 19 2013 at 8:26pm |
Judy,
Thank you for all that great information. I have my list of questions to discuss at the appointment with the oncologist tomorrow. I'll post my findings after my appointment.
One day at a time...
Gail
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Grateful for today
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Posted: May 19 2013 at 6:55pm |
Gail, Glad you found this website. You will find many caring and knowledgeable women and men here. You are already ahead on this challenging journey.......being able to say "Day at a time" when just diagnosed shows your strength and ability to deal with this diagnosis. Be assured most (if not all) are overwhelmed and anxious when first diagnosed. Yes, the thread on choosing your treatment team/questions to ask has lots of great information. You will have many questions on your list to ask your physician. You might like to consider including the following with your questions: - What are the pros and cons of chemo first? - What are the pros and cons of surgery first? - What are the pros and cons of each chemo option? - What are the pros and cons of each surgery option? - Confirm/request a referral to a Certified Genetics Counselor for a BRCA* test consult. - Confirm that a Vit D3 ** test has been done. (At some centers, one might be told, a VIt D3 test is not necessary. Consider stating that you are aware that some TNBC have low VIt D3 at diagnosis and you would want a plan to increase your level if you should be low.) - How do I contact you for any questions after my appointments? - How much time do I have to make my decision? *On BRCA testing: http://forum.tnbcfoundation.org/very-important-news-re-tnbc-brca-testing_topic8458_page1.html?KW=BRCA**On Vitamin D3: See especially page 26 http://forum.tnbcfoundation.org/vitamin-d3_topic5338_page26.htmlAnother thread has some good videos from Sloan-Kettering on support for newly diagnosed: http://forum.tnbcfoundation.org/support-for-newly-diagnosedvideos_topic9641.htmlWith caring and positive thoughts, Grateful for today.............Judy
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SagePatientAdvocates
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Posted: May 17 2013 at 10:21pm |
Dear Gail,
just wanted to welcome you and let you know we are here for you.
Dana Farber is an excellent place for treatment.
Dana Farber is normally very good about it but if you are < 60 please please make sure you are tested for the BRCA mutation.
good luck to you!!!
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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