Scalp metastasis update: Hello dear... - SHARE Metastatic ...

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Scalp metastasis update

Marthasvineyard
Marthasvineyard
14 Replies

Hello dear ones - Dx June 2018 with bone Mets. Had bone and CT scan last week and met onc today. Scans confirmed recent dermatologist biopsy sign of Mets in scalp/alopecia quarter size bald spot. But she says previous Mets in sacrum and vertebrae are stable. She thinks the scalp Met was there before I started ibrance in September. Says hair follicles for bald spot are growing. Blood tests show cancer markers continue to decline from over 300 to 93. I don’t mind saying the new info about my scalp really threw me. I’m trying to rally emotionally now.

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SophSP

Hello Martha,

That must have come as quite a shock. But now you have more information on what is going on, that will hopefully mean you can move forward. Do you know what is coming next? I hope there is a new treatment plan in place to target the new metastasis. It's good to know the other metastases are under control.

Take care,

Sophie x

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Marthasvineyard

Onc says continue with ibrance and letrozooe since they are bringing tumor markers down

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SophSP

That's good news! I wish you all the best. x

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13plus

I can imagine being thrown off by the scalp mets dx but reassuring that your markers continue to drop! Focus on the positive :) - you also have the good news that the hair follicles are growing in. That’s great!

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laurac1014

Yup I’m keeping a hat ready. 🕵🏻‍♀️ glad to hear your bones are stable! 🦴

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LynnFish

Hi Marthasvinyard...Wow, I can totally understand being thrown by the scalp mets...that's just not something we expect...but on the flip side, gosh, those tumor markers! What a drop, congratulations :)

I actually had somewhat similar experience early on, i.e. a bit more than six months into Ibrance/Letrezole treatment I had a scan reveal a bunch of "new" tumors. My doctor said something similar, e.g they were probably already there, but too small to detect , when I first started the treatment. Like you, my tumor markers were down, so it just took a bit of time for everything to mostly heal, and I maintained that happy state for more than three years...:) Wishing you even more time than that! :) Lynn

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Snowcone16

I was diagnosed stage 4 on January 30. I was stage 2 for the 20 months before. I had BC show up on Pap smear. In March I had a small pink bald spot. I assumed it was now skin cancer. Biopsy confirmed it was scalp met. And since the scraping for biopsy, I’ve had a scab that mutates shape for several months now. I use it as a litmus if my meds work. So far, it hasn’t shrunk! 😕.

When I followed up w oncologist last month, he was filling in for my dr. He said “we would see scalp Mets more frequently 20 years ago”. Not sure what to think...

I’ve been stable in bones but have new liver Mets. None of the meds have worked so far...onto a 3rd. But I know my combination is coming soon! My friend had 18 months of failed meds and now she is 2 years+ NED. She had lung and brain Mets too!

❤️

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Wolverine19

Hi snow cone, I also am stage 4 with a scalp met. I am very curious about your friend who went to Ned after medications failed for 18 months. What medications did she take that she went Ned? That is fabulous!

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Snowcone16

I tried to get details from her today. She isn’t as well versed on med names as most of us. Her first 18 months were chemotherapies. Now she is on hormonal meds.

I’m the opposite as they did just about a year of hormone meds. Now that I’ve had the tumor sequencing done, we can see I have a mutation that makes me hormone resistant (although still hormone positive status). But, I’ll hopefully be starting in the MATCH trial in 30 days.

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Wolverine19

All the best with your trial, snow cone. I also have not had chemo, but was diagnosed at stage 4. I chose only hormone therapy as I am afraid of chemo and the long term problems it can cause as well as side effects. But we may look into chemo down the line if I stop responding to the hormone therapy. My doctor thinks the Anastrozole I am on has probably stopped working, will get a scan again in February. Prior to that I was on tamoxifen for about 8 months when I recovered after being very sick upon my initial diagnosis. So if the Anastrozole stops working, it may be exemastane next or everolimus. So far I have been happy that I chose this route and not chemo, since my initial diagnosis was metastatic.

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Snowcone16

I was stage 2 in 2016. I had an oncotype test performed and it said I had a 15% chance of recurrence. Chemo lowered that 1-2%. I chose not to do it. I’m not opposed to it at this point. However, even my oncologist has been like “let’s try this approach first. If it doesn’t work then you always have the chemo as option”. So this trial will be my 4th non-chemo trial.

But sometimes they confuse me and refer to Ibrance or afinitor as chemo too. But, I figure that’s hormone.

🤗

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Wolverine19

I think some of the hormone therapy pills originally were used as part of a chemo regimen. Then over time they began using some of them alone as hormone therapy , there does seem to be some overlap.

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13plus
13plus
in reply to Snowcone16

It is confusing but iBrance is, in fact, a chemo. I had assumed it was not and wondered why they sent it in a bag marked “CHEMO”, so I did some digging. I was a little dismayed to realize it is chemo.

I think the story of your friend is very interesting. That chemo didn’t help her but the hormone treatment did! I wonder why they chose to try it in that order. Seems backward . At least she has NED now, that’s fantastic

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spouseM

Hi Martha

What a mixed bag. The scalp met, sounds scary, but the markers! Wow, such a difference. My very best to you. Michelle

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