Newly diagnosed |
Post Reply 
|
Page 123> |
| Author | |
pawwjw 
Newbie 
Joined: Nov 10 2020 Location: PA Status: Offline Points: 14 |
 Post Options
 Thanks(0)
 Quote Reply
 Topic: Newly diagnosedPosted: Feb 16 2021 at 8:29pm |
|
Cindy,
Yep...I see my oncologist 2/22. From the research I've done, 83% of those who took Xeloda were still TN free at 5 years and 73% for those who did not take it. Overall survival rate for those who took it was 85% and 81% for those who did not take it. Hard to find info. I'd like to be prepared for my appointment on Monday. If anyone can help, please do. Hope you all are doing well Pam |
|
 |
|
|
CMDW
Groupie 
Joined: May 10 2020 Location: Michigan Status: Online Points: 46 |
Post Options
Thanks(0)
Quote Reply
Posted: Feb 16 2021 at 8:13am |
|
Yes, Pam, I am grateful. I would reply on your oncology team, but doesn’t it seem that if Xeloda is helpful to prevent recurrence that it should also increase likelihood of survival? I’m sure you are doing your research.
As always, wishing you and others on this site healing and long term survival. Cindy
|
|
|
66 at diagnosis. 3/2019, AC/T, lumpectomy, 30 radiation. Complete 12/19. IDC, grade 2-3, 4 cores .2-1.5cm, yellow lobulated fibroadipose, stage pT1b, NO
|
|
|
|
|
pawwjw
Newbie
Joined: Nov 10 2020 Location: PA Status: Offline Points: 14 |
Post Options
Thanks(0)
Quote Reply
Posted: Feb 15 2021 at 4:22pm |
|
Cindy,
Wow! How awesome you had a Complete Pathologic Response! That is great! I'll be having a conversation 2/22 with my oncologist about Xeloda. My tumor at surgery was 2mm. I've been reading about a low dose of Xeloda for TNBC patients after chemo, surgery, and radiation. Good evidence for lower reoccurrence but not significant enough for survival. Interesting...so we shall see. Anyone have any info on this? Pam |
|
|
|
|
CMDW
Groupie
Joined: May 10 2020 Location: Michigan Status: Online Points: 46 |
Post Options
Thanks(0)
Quote Reply
Posted: Feb 14 2021 at 11:08am |
|
Hi Pam-
I am not on Xeloda. My oncologist felt it was not necessary as I had a complete pathological response to the ACT. He is very respected in the oncology community so I did not question it further. It’s so difficult not to wonder about every pain or sensation. Sometimes my ribs hurt and of course I wonder if it’s spread to my bones. I mentioned in a prior thread that my gynecologist told me “Live from day to day, not from scan to scan,” and I attempt to do this-to sweep the dark thoughts away. I hope you can do the same! Cindy
|
|
|
66 at diagnosis. 3/2019, AC/T, lumpectomy, 30 radiation. Complete 12/19. IDC, grade 2-3, 4 cores .2-1.5cm, yellow lobulated fibroadipose, stage pT1b, NO
|
|
|
|
|
pawwjw
Newbie
Joined: Nov 10 2020 Location: PA Status: Offline Points: 14 |
Post Options
Thanks(0)
Quote Reply
Posted: Feb 14 2021 at 8:52am |
|
Hi Cindy,
Thanks for your response. Glad you are doing well. Your journey seems similar to mine with the exception of radiation # of treatments. I have heard that some women do experience stabbing pain after surgery so that is comforting. Mine started shortly after diagnosis and I have experienced this since 6/20. I haven't come across anyone who has had a similar experience. Are you on Xeloda now? Why or why not? That is a conversation I will be having with my oncologist 2/22. Pam |
|
|
|
|
CMDW
Groupie
Joined: May 10 2020 Location: Michigan Status: Online Points: 46 |
Post Options
Thanks(0)
Quote Reply
Posted: Feb 13 2021 at 4:34pm |
|
Hi Pam-
I too had ACT, lumpectomy and radiation (30) and would like to address the pain question. My surgery was 10/2019 and radiation completion 12/2019. I do no recall pain during chemo, but have tenderness/slight pain more than one year after completion of all treatment.. My right breast is the affected one and I find I tend to avoid contact (hug, floor exercise, etc.) with that side. I do occasionally have a stabbing pain. My doctors feel this is due to the physiological changes to the breast (including scar tissue in my case) which continue to happen for quite awhile. I know I, and many of us, worry or have concern about recurrence and when we have these sensations it is disconcerting. I am trying to be cognizant of the nuances of my body, but am also trying to live in the present. Best wishes to you and all on this forum. Cindy
Edited by CMDW - Feb 13 2021 at 9:40pm |
|
|
66 at diagnosis. 3/2019, AC/T, lumpectomy, 30 radiation. Complete 12/19. IDC, grade 2-3, 4 cores .2-1.5cm, yellow lobulated fibroadipose, stage pT1b, NO
|
|
|
|
|
pawwjw
Newbie
Joined: Nov 10 2020 Location: PA Status: Offline Points: 14 |
Post Options
Thanks(0)
Quote Reply
Posted: Feb 13 2021 at 3:39pm |
|
Jennifer,
The hardest decision I had to make was which type of surgery to have. I chose a lumpectomy + radiation on the recommendation of my oncologist and radiation oncologist. My breast cancer surgeon would not give me a recommendation. Survival rate is the same for both surgeries. I was told reoccurrence rate is lower for a lumpectomy because of the radiation after. There is research to support this. Chemo first reduced my tumor by 95%. At diagnosis, I was stage IIA, at surgery 1. If you have any questions for me, please feel free. Good luck! Pam |
|
|
|
|
pawwjw
Newbie
Joined: Nov 10 2020 Location: PA Status: Offline Points: 14 |
Post Options
Thanks(0)
Quote Reply
Posted: Feb 13 2021 at 3:25pm |
|
Hello!
I was diagnosed with TN 6/20, stage IIA T2 N0 M0, Ki-67 100%. Genetic testing was negative. I began chemo 7/16 and finished 11/25...4 cycles of AC & 12 taxol. I tolerated chemo well with just fatigue and 10 lbs. weight gain. Did not have a complete pathologic response but close. Chemo decreased my tumor size by 95%. Tough decision for surgery. Survival rate is the same with a lumpectomy + radiation vrs. a mastectomy. Reoccurrence rate is slightly lower for lumpectomy because of the radiation. Had a lumpectomy 12/23. Presently, I am undergoing radiation. 20 treatments and I have 2 more left. No side effects. My struggle throughout this journey has been more difficult emotionally rather than physically. Because of the pandemic, I have very few distractions. My travel & social life has been limited. So, I spend too much time thinking. I have an appointment with my oncologist 2/22 to discuss Xeloda. I think if tumor was 1cm or less at surgery, Xeloda is not recommended. Of course, I want to do everything possible to prevent reoccurrence. My Ki-67 was 95% at surgery. That concerns me. Thoughts? I also am wondering if anyone has experienced slight pain throughout chemo and continuing after surgery throughout radiation...not continuous, just random stabs. Pam |
|
|
|
|
jenniferlcw
Newbie
Joined: Jan 08 2021 Location: Perrysburg, Ohi Status: Offline Points: 6 |
Post Options
Thanks(0)
Quote Reply
Posted: Feb 09 2021 at 5:33pm |
|
Hello, Azira. Glad to meet you! Yes, I tested negative for the BRCA mutations and other genes associated with breast and reproductive cancers. How is it going with Taxol? I’m hoping it’s better than AC as I have one more round of that before Taxol starts, and I’ve been pretty unwell with this last round.
|
|
|
|
|
Azira
Newbie
Joined: Sep 08 2020 Location: Malaysia Status: Offline Points: 1 |
Post Options
Thanks(0)
Quote Reply
Posted: Feb 08 2021 at 3:22am |
|
Hello Jennifer,
Have you got your genetic testing result yet? Just wondering if our genes really the cause of TNBC. By the way, I am Azira. From Kuala Lumpur Malaysia. 52 going to 53 this March 2021. I have 3 more rounds of Taxol to go.
|
|
|
|
|
kirby
Senior Member 
Joined: Oct 09 2007 Location: bay area,california Status: Offline Points: 1056 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 28 2021 at 12:14am |
|
DebbieW,
I went thru chemo as a single parent to daughters ages 9 and 13. I also worked. It was quite doable. I was able to have some flexibility with work. My neighbor recently went thru 9 months of tx for stage 2 her2 cancer. Her children are grown but she is the only help for her mother. She too worked all thru tx.
|
|
|
kirby
dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
|
|
|
|
SagePatientAdvocates
Senior Advisor 
Joined: Apr 15 2009 Status: Offline Points: 4656 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 26 2021 at 9:14pm |
|
Dear Namay,
I have helped women in Canada before and the system can be very different than in the U.S. It also can be frustratingly slow and scheduling can be a challenge. In the U.S. the primary advisor is generally a Breast Medical Oncologist who is hopefully familiar with TNBC and s/he normally calls the shots as to whether chemo comes first or surgery. From my experience most surgeons will advise to have surgery first but that may not be the most advisable course especially with TNBC. Most surgeons, from my experience, are, often not experts in TNBC. In my unprofessional opinion you should get a second opinion from a Breast Medical Oncologist who is a TNBC expert. I may be able to help you get a consult via Zoom, in the States, if you are open to exploring it. Please send me a PM and I will send you my phone number and email or you can write me at info@sagepatientadvocates.org I am happy to do a Zoom conference with you. There are no charges. And if you decide to do the surgery first the biggest problem is that, because your tumor is removed, there is nothing left (hopefully) to see if the chemo is working or not and if you do neo-adjuvant chemo at least you know if your tumor is responsive to chemo. I will not give you medical advice as to what to do but I believe I can help you get a telemedicine consult in the U.S. with an excellent Breast Medical Oncologist who is savvy about chemo. If you decide to go ahead with your surgery without the benefit of a second opinion, I and everyone else here, I am sure, will be wishing you the best of luck. warmly, 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
|
|
|
|
|
Namay
Newbie
Joined: Jan 22 2021 Location: Canada Status: Offline Points: 2 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 26 2021 at 6:34pm |
|
thanks Donna- tumor was 1.7 Cm on ultrasound and showed no lymph involvement. Biopsy done on Dec. 30. No staging just Invasive Ductal carcinoma TNBC . Lump is palpable on skin surface about 12 o’clock about 1.5 inches from nipple. I’m in Canada and I don’t get a consult apt booked with oncology until two weeks after surgery. I am awaiting bil mastectomies with immediate reconstruction. Now debating on forgoing reconstruction if it will speed the surgery up.(no date yet). Would break my heart though.
|
|
|
|
|
123Donna
Senior Member
Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13398 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 22 2021 at 6:59pm |
|
Hi Namay,
Can you give us a little more information on your diagnosis? Stage? Tumor size? Any nodes infected? Location? Etc. If we have a little more information, we may be able to understand your situation. Here is a great source of information on breast cancer: 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 |
|
|
|
|
Namay
Newbie
Joined: Jan 22 2021 Location: Canada Status: Offline Points: 2 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 22 2021 at 6:45pm |
|
Hello my name is Nathalie and am from Alberta, Canada. Recently diagnosed with TNBC and don’t understand why I am getting my mastectomy first in a couple of weeks as so many get chemo first. It worries me as I want the cancer out ASAP. I don’t understand why I wasn’t even given the option
|
|
|
|
|
DebbieW
Newbie
Joined: Jan 20 2021 Location: Malaysia Status: Offline Points: 4 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 22 2021 at 9:21am |
|
My oncologist has arranged for 6 sessions of chemo (3 rounds of FEC, then 3 rounds of FEC + Docetaxel every 3 weeks) followed by 20 sessions of radiotherapy.
1st chemo starts 6 Feb. Have arranged it to be done on Saturdays so as to minimise any disruption to my work and my children's school schedule. Pray the side effects will be manageable. Debbie
|
|
|
|
|
tjpecknh
Newbie
Joined: Dec 18 2020 Location: NH Status: Offline Points: 7 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 22 2021 at 7:39am |
|
I will be having surgery first (Monday) as my tumor is <1cm. Once pathology comes back I'll decide on if I'll have systemic chemo before radiation.
Terri
|
|
|
|
|
SagePatientAdvocates
Senior Advisor
Joined: Apr 15 2009 Status: Offline Points: 4656 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 21 2021 at 1:57pm |
|
Dear Amrit,
The other remedy for painful mouth sores is 'magic mouthwash.' Here is an article from Mayo Clinic that helps explain- https://www.mayoclinic.org/tests-procedures/chemotherapy/expert-answers/magic-mouthwash/faq-20058071 Anecdotally, I have seen it help more women than not. Your local pharmacist should be familiar or medical oncologist. with my love to all here, 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
|
|
|
|
|
Amrit
Newbie
Joined: Nov 27 2020 Location: Fayetteville AR Status: Offline Points: 6 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 21 2021 at 10:21am |
|
Dear Jennifer, I finished 4 rounds of AC, am still recovering from the 4th treatment. Next, I start weekly Paclitaxel. One thing I want to share about Adriamycin infusion is that when the nurse gives the infusion through a syringe, I used to chill my mouth with a few ice cubes. I did that for all 10 - 15 minutes during the infusion, and avoided drinking anything warm for another 30 minutes. Once I had a bit of throat irritation, so instead of drinking the melted ice, I used to just spit it our in a bag. This probably helped me in avoiding mouth sores. Hope you are drinking a lot of water after the infusion to flush out the drugs and avoid urinary irritation. Wish you all the best for your treatments! Amrit
|
|
|
|
|
DebbieW
Newbie
Joined: Jan 20 2021 Location: Malaysia Status: Offline Points: 4 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 21 2021 at 2:24am |
|
Steve,
Thank you very much for your warm welcome and kind offer. I have sent you a PM. Am truly glad to be a part of this community. Thank you for having me. Debbie |
|
|
|
Topic Options|
Post Reply
|
Page 123> |
Tweet
|
| Forum Jump | Forum Permissions You cannot post new topics in this forum You cannot reply to topics in this forum You cannot delete your posts in this forum You cannot edit your posts in this forum You cannot create polls in this forum You cannot vote in polls in this forum |