New Posts New Posts RSS Feed - Disappointed with results so far
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

Disappointed with results so far

 Post Reply Post Reply
Author
ClareSim88 View Drop Down
Newbie
Newbie


Joined: Dec 08 2020
Location: UK
Status: Offline
Points: 2
Post Options Post Options   Thanks (0) Thanks(0)   Quote ClareSim88 Quote  Post ReplyReply Direct Link To This Post Topic: Disappointed with results so far
    Posted: Dec 08 2020 at 7:19pm
 Hi,

my mum was diagnosed with triple negative breast cancer in July. Her tumour was 5cm and 2 positive lymph nodes under arm.

She had 9 x weekly PC chemo and has had 2 x EC chemo, with the last one being this week..

She had an mri scan after the 7th weekly PC chemo and today she received the results.

Sadly, the scan only showed a 5mm shrinkage of the tumour. There was talk of the volume within the tumour reducing , but not too sure what this would indicate.

It could have been worse news, but we are very disappointed as we were hoping for more shrinkage after 7 weeks of chemo, especially as I had heard that triple negative cancer responds well to chemo.

We were hoping for a complete response, but maybe we won’t get that now?

Anyone experienced anything similar? 

 Thanks x

Back to Top
SagePatientAdvocates View Drop Down
Senior Advisor
Senior Advisor
Avatar

Joined: Apr 15 2009
Status: Offline
Points: 4688
Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Dec 09 2020 at 12:35pm
Dear Clare,

Thank you for writing. I am sorry your mum did not have a better result. 

Unfortunately, there is some TNBC that seems to be chemo-resistant at times. 

I am a patient advocate working on a volunteer basis for SAGE Patient Advocates(SAGE), a non-profit foundation, and I have helped several hundred women on this site over the last 11+ years. I am not a medical professional and I will not give you/your mum medical advice but I am hoping I can be a useful resource for you. There are Breast Medical Oncologists, in the UK, who are experts in TNBC and hopefully I can help secure a consult, IF you are interested.

There are no charges to you/your mum, from myself or SAGE.

Please send me a PM and I will be happy to invite you to a Zoom conference or have an email conversation. Will also send you my phone number.

sometimes I don't receive PM so you can also send me an email at 

contact@sagepatientadvocates.info

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
Back to Top
clifford1 View Drop Down
Newbie
Newbie
Avatar

Joined: Jul 16 2012
Location: Decatur Georgia
Status: Offline
Points: 32
Post Options Post Options   Thanks (0) Thanks(0)   Quote clifford1 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 12 2020 at 3:13pm
Steve,

You are the best for offering to assist Clare.

Also, you are one of the few individuals who will express that some subtypes of TN are chemo resistant. Also, I appreciate it when you shared information on getting your tumor tested. These are the messages that patients are not getting or hearing. I get it. Patients want to be positive and want to have positive outcomes. That is why I pray daily that research focuses more on TNBC subtypes. We need targeted treatments for the different subtypes.

Thank you for all you do.

Back to Top
SagePatientAdvocates View Drop Down
Senior Advisor
Senior Advisor
Avatar

Joined: Apr 15 2009
Status: Offline
Points: 4688
Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Dec 13 2020 at 12:58am
Dear Clifford,

I feel truly blessed to be a Patient Advocate and your kind words re-invigorate my efforts.

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
Back to Top
123Donna View Drop Down
Senior Member
Senior Member
Avatar

Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13430
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 13 2020 at 12:34pm
Clifford1,

I ditto and agree with everything you said.

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

Back to Top
 Post Reply Post Reply
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 12.01
Copyright ©2001-2018 Web Wiz Ltd.