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TNBC Rash?

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KarenGanss View Drop Down
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    Posted: Jul 10 2021 at 1:02pm
Hello all -

My mom (age 64) was diagnosed with Stage 4 Triple Negative Breast Cancer in May 2020 (spread  to lung and lymph nodes).  She originally received abraxane/pacitaxel chemotherapy along with atezolizumab immunotherapy, but the abraxane was discontinued due to a re-occurring rash. My mom had No Evidence of Disease with a strong positive reaction to treatment, but a couple short months later, the lump in the breast had re-grown. Currently, she is on a capecitabine oral regiment, but the same rash seems to have re-occurred that she had originally with atezolizumab and abraxane.  It usually is red, all over her body, and sometimes itches.

The doctors do not know now, what is causing the rash.  I'm wondering if others on this forum have any experience or ideas related to TNBC rashes.  It seems to get worse, or reoccur when we are actively fighting the treatment with chemotherapy, and then subsides/heals when we back off.

Any ideas are welcomed, thank you in advance!

Karen
Boulder, Colorado
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jul 11 2021 at 8:24pm
Dear Karen,

I am not a medical professional and cannot tell you the cause of Mom's rash. One thing you might want to do is have Mom seen by an Inflammatory Breast Cancer (IBC) expert.

Some hallmarks of IBC can be breasts that are warm to the touch, discoloration on the breast, enlarged breast, inverted nipple. IBC is a clinical diagnosis and from my experience they will need to see Mom in person.

Here is a forum on IBC that contains certain links explaining IBC. 70% of women who have IBC have TNBC. The converse is not true.

I know several IBC experts as I have helped many women over the last 17 years with IBC even though it is a very rare (estimate 2% of all breast cancers). The experts in IBC may have someone to suggest in Colorado?

If you would like to talk with me please send me a PM and I will send you my phone number or you can email me at info@sagepatientadvocates.org

There will be no charges from SAGE Patient Advocates or myself and I work as a volunteer
for SAGE. Also SAGE does not accept monies from oncologists, cancer centers or drug companies for referrals.

Sad to read Mom has metastatic disease.

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 KarenGanss Quote  Post ReplyReply Direct Link To This Post Posted: Jul 13 2021 at 9:44am
Steve -

Thanks for your quick and detailed response.  My mom has an appointment with her doctor next week and I will be sure to ask about IBC.  Her symptoms don't match up with the ones you describe, but if indeed there is a chance, I may reach out to you individually.

Have a great week, I appreciate your help.

Karen
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jul 13 2021 at 9:55am
Dear Karen,

Thanks for your kind words. Please let us know if Mom's physicians are able to figure it out and please make sure they are experienced in IBC. IBC is so rare that many oncologists miss it. And as you say Mom's rash doesn't seem to indicate IBC.

My daughter experienced a persistent rash, on her breast, and took several courses of antibiotics and eventually the source was figured out by an Infectious Disease Specialist (IDS). She used to walk barefoot on the lawn in her backyard and she had developed Lyme disease.

You might want to consider Mom seeing an IDS.

Good 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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