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Guidance

Printed From: TNBC Foundation
Category: TNBC Forums
Forum Name: TNBC Metastasis/Recurrence Users
Forum Description: A place to discuss metastatic disease
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=13309
Printed Date: Aug 17 2019 at 9:00am
Software Version: Web Wiz Forums 12.01 - http://www.webwizforums.com


Topic: Guidance
Posted By: TNBCmom
Subject: Guidance
Date Posted: Mar 10 2018 at 9:32am
Hello, first time posting. My mom was diagnosed with TNBC in right breast after noticing a lump. The did A.C. then taxol. She then had eight mastectomy. Followed by radiation. It was about a year then started having chest pain. Took her in to er on Dec 5 2017. They did by ct scan and found a mass which eroded some of her sternum. They also found multiply lung nodules. They started her on halaven 2 on 1 week off. Her pain has gotten better. She went in for a repeat ct scan Friday March 9. We haven't heard results yet. But if it has worsened what is the best step for her? I am just so overwhelmed help me



Replies:
Posted By: mainsailset
Date Posted: Mar 10 2018 at 4:10pm
Hi and thank you for posting. I've been in your shoes (I had Tneg while both sisters who were older had recurrences) and I have to say it's debilitating and it's just really hard to be strong as well as to simply think straight!

You might start off by asking her oncologist if there are any trials that your mom would qualify for that he offers. Also, I can get you a link if you want to the NIH clinical trial page that lists all the trials offered across the country. While that may seem intimidating here's why I suggest it. Your mom's treatment will probably follow the lines of standardized lines of treatment based on analysis of the spread. You/she are not locked into the standard protocols.

A clinical trial, (I prefer the Phase II or III because they've already passed the first level of muster) allows a patient to receive a cutting edge experimental drug, usually in conjunction with a more standardized chemo. That's important because it means she'd be treated with the tried and true chemo but the experimental should act like a booster. Because the pharma who developed the drug wants it to succeed they generally offer the drug at no charge (so you don't have to fight your health care provider) and they also require scans and blood work above and beyond the norm.

Also, it's a good idea to get your mom into fighting shape. Have her Vit D levels checked, her bone density, her adrenals checked and then start her on some Vit D with CalMag supplement. These are things that can help her body fight. She also may feel more comfortable taking an anti anxiety med.

btw, it's pretty commonplace for a caretaker to need to take an anti anxiety med as well. The point is not that you're not strong but that you need to reach out for every bit of a boost and to keep your focus. Don't take it for granted that you don't need help yourself, ask for help at every step!

Best,
   Mainy

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dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear


Posted By: TNBCmom
Date Posted: Mar 10 2018 at 4:32pm
She has severe neuropathy in hands so we were told she wasn't a good candidate for trials. She is refusing anti anxiety meds. I am on some. I returned to college and i am not able to concentrate. I just feel helpless. Thank you so much for your advice


Posted By: rstar
Date Posted: Mar 10 2018 at 6:01pm
Hello there

First of all, the fact that her pain has decreased is a sign that she's probably responding to chemo and thats good. Id ask her oncologist to test your mom for Brca to see if she can benefit from the usage of a parp inhibitor. Olaparib was just approved by the FDA for metastatic breast cancer.


Posted By: mainsailset
Date Posted: Mar 10 2018 at 6:25pm
Hmmm, I'm having a hard time understanding the correlation between a trial drug (and they are a broad spectrum) and a standard protocol drug...in fact that comment might annoy me enough to schedule a 2nd opinion.

Yup, Halaven lists neuopathy as a side effect:

http://chemocare.com/chemotherapy/drug-info/halaven.aspx" rel="nofollow - http://chemocare.com/chemotherapy/drug-info/halaven.aspx

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dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear


Posted By: parrynd1
Date Posted: May 07 2018 at 6:13pm
One thing I have learned is that you may not be able to help the situation you find yourself in BUT you can control your thoughts (mostly). No matter how bad the situation is someone out there somewhere in the world does have it worse so when I start to think of all the negative I take a breath and force myself to acknowledge the positives in the situation or I stop treating the pending information as worse case facts. Spending time being upset over what you donít know yet doesnít help. Facts are gold and spending your emotional balance on the what ifís works against you and does take a toll. If all else fails a hot bath and something that smells good works wonders!

Itís not easy thing to do and this may not work for everyone, but has helped me and my family immensely through my own fight.

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Dx 9/016 Age 28, 3c, Grade 3, 1/5 Nodes, BRCA -, KI-67 >90%, I-Spy 2, DD A/C, Lumpectomy w/ 3 nodes removed, TC, Rads
2/2018 recurrence + brain & lung mets, Craniotomy, SRS, IPI-549, Opdivo/Avastin



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