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jenniferlcw View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jenniferlcw Quote  Post ReplyReply Direct Link To This Post Posted: Jan 20 2021 at 8:02pm
Hello, Amrit. I'm glad to meet you! How are you doing with your AC treatment? I am doing 4 rounds of AC every 2 weeks followed by 12 consecutive weeks of Taxol. I'm not sure about my surgery decision yet. I look forward to learning more about how you are doing.

Hang in there,
Jennifer
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jenniferlcw Quote  Post ReplyReply Direct Link To This Post Posted: Jan 20 2021 at 8:08pm
Thank you, Andrea! I appreciate how you shared your decision to get a bilateral masectomy. You're right about Claritin. I am taking Claritin and Pepcid for bone pain (both suggested by my CNP) and so far it's doing the job. Right now I find myself going back and forth on the surgery decision (lumpectomy v. masectomy, to reconstruct or not), even if my tumor shrinks quite a bit. 

Take care,
Jennifer
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jan 21 2021 at 12:15am
Dear DebbieW,

Donna has given you an important reference.

Have you had genetic testing?

I know it may be impossible for you to travel with your circumstances and Covid but I think it might be useful to get a second opinion. There is a very good Breast Medical Oncologist in Singapore who is an expert in TNBC. I don't know if she is doing any video conferences but I can try to find out.

If you would like to speak please send me a PM and I can set-up a Zoom conference. There are no charges but I am not a medical professional and the second opinion would come from the oncologist in Singapore. 

welcome to our TNBC family.

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
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DebbieW View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote DebbieW Quote  Post ReplyReply Direct Link To This Post 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
 
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Amrit View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Amrit Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tjpecknh Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote DebbieW Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Namay Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2021 at 6:45pm
Hello my name is Nathalie and am from Alberta, Canada.  Recently diagnosed with TNBC and donít 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 donít understand why I wasnít even given the option Shocked
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post 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

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Namay View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Namay Quote  Post ReplyReply Direct Link To This Post 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 oíclock about 1.5 inches from nipple.  Iím in Canada and I donít 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.  
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post 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
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Azira View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Azira Quote  Post ReplyReply Direct Link To This Post 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.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jenniferlcw Quote  Post ReplyReply Direct Link To This Post 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? Iím hoping itís better than AC as I have one more round of that before Taxol starts, and Iíve been pretty unwell with this last round. 


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Post Options Post Options   Thanks (0) Thanks(0)   Quote pawwjw Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote pawwjw Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CMDW Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote pawwjw Quote  Post ReplyReply Direct Link To This Post 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
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CMDW Quote  Post ReplyReply Direct Link To This Post 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.

Itís so difficult not to wonder about every pain or sensation.  Sometimes my ribs hurt and of course I wonder if itís spread to my bones.  I mentioned in a prior thread that my gynecologist told me ďLive from day to day, not from scan to scan,Ē 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
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