Molecular testing: Curious if anyone... - SHARE Metastatic ...

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Molecular testing

ndastrogal profile image
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Curious if anyone has had molecular testing (Caris or Tempus) on their tumors or tissue. And if so, did it result in a treatment that your cancer responded to? I'm in the process of having it done and very curious what it will tell us about my cancer and if it does in fact lead to a more specific treatment. Thanks.

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ndastrogal profile image
ndastrogal
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Merma profile image
Merma

Yes, I had it. It resulted in me being put on Ibrance despite having endometrial cancer - not breast cancer. I got almost 6 years of pfs - after having the original diagnosis and 2 recurrences and surgery, radiation, and chemo within 2 years. I recently had a 3rd recurrence and radiation. Now waiting to see what we’re going to do systematically.

Felt fine enough to swim in a masters artistic swimming competition 2 weeks after being cleared to swim again!

ndastrogal profile image
ndastrogal in reply to Merma

That's so interesting .. thank you for telling me. The swimming is great. Best of all to you.

ANNIE6449 profile image
ANNIE6449

I’ve done the Caris testing with my first diagnosis and again when I had progression. My integrative GP stressed how important it is for targeting the best treatment plans. In both cases the testing showed which meds were most likely to be effective, which ones were least likely, and which “might” work on this particular cancer. It takes out a lot of the “guesswork” for knowing which route to take. There are so many treatment options today it is mind boggling (and wonderful at the same time)! But it is important not to waste precious time with a therapy that is less than optimal for your specific cancer. I was particularly impressed to find out that most of the options on my current plan were not even available at my first diagnosis in 2018!!

ndastrogal profile image
ndastrogal in reply to ANNIE6449

Thank you, good to read. It is amazing how quickly the treatments change and how targeted they are getting. Can I ask your diagnosis and what treatment they suggested? I was diagnosed with metastatic breast cancer in 2019 and have been through 5 treatments. Hopefully for a good option for the next line.

ANNIE6449 profile image
ANNIE6449 in reply to ndastrogal

Lobular in the right axillary area in 2018. Metastasis to one spot on left scapula in 2020. Completely controlled by Ibrance and letrozole for almost 2 years, then significant progression so switched to Kisqali. Sadly that only worked for about 9 months. Now have Mets in 4 new bones and 2 or 3 lymph nodes. Latest Caris suggested capecitabine (generic for Xeloda) plus 5 other possibilities. Onc started me on least invasive treatment then will see how it works. Just finished first month on it. Consult with orthopedic oncologist on Monday and first blood tests to check how it is working on Wednesday. 🤞

Weirdest thing to me is that the only place I’ve never had the breast cancer is in my breasts!

ndastrogal profile image
ndastrogal

That is pretty strange. I did well on ibrance and xeloda but other 3 were disasters. Very curious what testing will show. All the best to you.

muzzatron profile image
muzzatron

Hi Oz here. For my partner 2 years remission, NED on Arimadex, Ibrance standard of care for ER+, HER2 - . Mets in liver, some bone, 5 days rad.

Liver biopsy plus sample sent for genomics testing. Biopsy sample more reliable than liquid? blood testing.

Tomoxifen until genomics came through advising mutation and switched to Fulvestrant where we had a adverse reaction. We would have been on an ineffective drug.

Comprehensive report 40+ pages! treatment options, mutatations and excellent 54min Skype with Sydney onc. Across all trials.

Sacked Melb onc as if outside comfort zone they stick to the standard of care still charging the same as the leading oncologists. Oncology is a tough gig, highly complex stressful occupation but we need better.

Very upbeat report on BC treatment in Australia.

dailytelegraph.com.au/newsl...

muzzatron profile image
muzzatron

Update A/Prof new oncologist’s secretary blew us away as she said he said NO! after reading patient records he does not do second opinions! Must be beneath him to follow genomics consulting oncologist. The other secretary welcoming at first. Looking at the public system now as at least experienced. Not as fragile egos hopefully.

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