Progression in brain 6 months after WBRT 😔

Hi,

This is not the post I wanted to be writing but I'm learning that we don't control the narrative on this disease.

So, brain mri I had in May which was a month later than was supposed to be, not sure the reason but my oncologist did request it at same time as body CT which I had end of March and warranted the treatment change from kadcyla (TDM1) to enhertu. Finally had a catch up last week with oncologist about mri and there are 4 areas showing progression, apparently not significant progression, not enough for oncologist to have wanted to have started me on tucatanib rather than enhertu (apparently tucatanib is more efficient at crossing the blood brain barrier). Currently I am feeling better than I have in months, my back ache has gone, no longer taking pain relief for it, this is since starting enhertu which I've had 2 rounds of now.

I've done some further research in the last few days and I've found that actually enhertu was reported (findings from clinical trial) as being a very effective systemic treatment for the brain so my hopes are raised after initially feeling very flat following appointment.

I am my oncologists first and only patient being treated Currently with enhertu, 1 other lady in same clinic, as it is not long since approved on NHS.

I did ask whether the 'rogue' areas could possibly be treated with gamma knife in light of me having had WBRT and it's something that can be put to the specialist team if the next scan is still showing progression.

I remain hopeful and am grateful to be feeling well, practically 'normal' even.

I wish you all well, thanks for reading xx

[Hidden]

Hi cazlav -

I'm so sorry about the progression!

As unsettling as this might sound, do you know if the tacutanib is infused directly into the brain?

I was recently dx'd with leptomeningeal metastases, which turned out to be a misdiagnosis, but in that process I saw a spine/brain specialist who mentioned a drug that is infused directly into the brain. What I "heard" was "takutiku" but reading your post makes me believe it was "tacutanib".

Assuming this is the same drug, I'll mention that I was *very encouraged* by his description of this treatment. He said that he had several women w/ MBC who were doing very well on it with monthly infusions, two years in. He indicated that it's not a particularly difficult treatment, once you get past the potential weirdness of the brain infusion.

I hope that you and your doc find some *very effective* treatments to address this issue...

Best,

Lynn

[Hidden in reply to Hidden]

Hi Lynn, thanks for replying. Tucatinib is given as infusion into arm or port if you have one and is also prescribed with capecitabine and trastuzamab. Not heard of one directly to brain but now I'm curious!!

[Hidden in reply to Hidden]

Hi again, caslav -

My brain/spine onc just happened to phone me, so I asked him to give me the *real* name of that brain infusion chemo he was discussing w/ me....(I said "I'm asking for a friend"!) It's Topotecan. I of course have no idea if it's even potentially a treatment for you, but, as mentioned earlier, when we thought I might be in need of something, he brought this up as what he would recommend for me/something he's having success w/ for MBC brain mets...

Take care!

Lynn

[Hidden in reply to Hidden]

Oh that's interesting, thanks for that x

[stardust1965]

Progression is not what we want to hear but it seems you are getting the best care available and advocating for yourself. To hear you are feeling well (almost normal) is great news!!

[NPmary]

Glad you are feeling well despite the report.

[Winner123]

Sorry you are showing progression, it's horrible we know. Susie just had gamma knife, SRS on Brain. We are also UK NHS. It was a bit of a battle, the QE in Birmingham initially said they would do it, then retracted that. We inquire with the Royal Marsden privately, they said yes and moved us to NHS for the treatment. It's a bit of a fight but you can do it. Hope this helps. XXX ♥️

[Hidden in reply to Winner123]

Hi, thanks for replying and giving hope. I would definitely seek a second opinion on the SRS if my next MRI still shows progression. Hope your wife is doing well.

[Andersl in reply to Hidden]

To have Gamma Knife (SRS) the nodules need to meet the criteria... I don't know the maximum size but make sure you have the next scan on time or as soon as possible if you have symptoms so you don't miss the opportunity. I had Gamma Ray last year. It's been very successful

[life8888]

I am so sorry to hear your news, but hopeful that the new treatments work for you!!! I'm finishing my WBRT today and am so thankful for the info you share to guide me and others like me. Wishing you all the best!!!Please stay strong and know that you are in our thoughts!

[Hidden in reply to life8888]

Hi, how have you found it? Great to get to the final one, take it easy over next few weeks x

[life8888 in reply to Hidden]

So exhausted 😪. Just want to sleep! But can't because of the steroids 😰. I've been walking 2 miles for the last few days, and that really helps me. But man these last two days are wiping me out!

[Hidden in reply to life8888]

Sounds familiar! Once the steroids end just give in to the fatigue, you need the rest. I bounced back sooner than I anticipated, I napped every day for a few weeks just to get me through and I never have a day time nap!Wish you well x

[life8888 in reply to Hidden]

Will nap!!! Thanks 😀

[mariootsi]

I hope you continue feeling well! Sending hugs and love!

[BluHydrangea]

So sorry to hear of your brain Mets. Going through the MRI is trauma enough! I think it is exciting about your treatment— a new drug— and I am hoping you will see a big improvement soon. Best wishes to you!❤️

[Missmaddie615]

So sorry to hear of your progression, but I’m so happy to hear that you are feeling “almost”normal -That’s half the battle! I have heard wonderful things about enhurtu -May you be able to stay on this for a long time! Be kind to yourself- Blessings to you!