Help progressed to Brain Mets and fighting for the right treatment
Hi All,
Been lurking on the stage 4 forum for some time. Now I need help.
I live in the UK and attend UCLH where treatment seems to adopt a more cautious approach.
Originally on Breast 09 trial but randomised and receive standard of care😢
6 rounds Doxetaxel and H & P. Over 2 years later and progression to Brain Mets.
Upper respiratory infection and blockage in right ear led to Edema and they thought I was having a stoke. My speech was affected.
Well Ct MRI and nuclear planner scanning said several lesions the main concern being front left lobe 3 cm.
They changed the plan last minute and said to start on TDXd to see if it shrinks in 2 months then revisit Gamma.
I am not a happy 🐰. In fact I’m furious.
my question to those who have experience with Gamma and TDXd will they zaps a 3 cm tumour and what are the risks involved later down the line with Necrosis?
This is time critical and Emperor Nero fiddles whilst Rome burns.
I would very much appreciate your thoughts. Especially Illimae and Curious.
Comments
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Hi @stirfry and welcome to Breastcancer.org. We're so very sorry for the reasons that bring you here, but we're really glad you've found us and decided to post. You're sure to find our community a wonderful source of advice, information, encouragement, and support — we're all here for you!
A few things: we've moved this post to the Stage IV forum to better help you get answers from the audience that can help. Also, we'd suggest you post in the Brain Mets Sisters thread where we have a wealth of knowledgeable members managing a similar diagnosis. Also, our free weekly MBC virtual support groups have a number of folks who have previously managed or are currently dealing with brain mets, if you'd like to join and get face-to-face support.
Additionally, we encourage you to @ mention members to tag them in your posts so they'll get a notification when they've been mentioned and know to respond. We'll tag @illimae and @curious for you!
We hope this helps and that you find answers and support here. Let us know how else we can help!
—The Mods
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Thank you. So much
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@stirfry Hi there! I understand being angry, this whole thing sucks but if Enhertu was recommended first, I would have encouraged you to push for it. When I started Enhertu 3 years ago I had 2 old previously gamma knifed mets and 4 new ones, Enhertu got rid of them all in about 9 months. Gamma knife is scary, claustrophobic and a little painful if your hospital uses the metal frame but it’s doable. I still dread it but no longer freak out after having it 7 times in the last 8 years. The procedure itself it very much like a brain MRI and the recovery is easy, just rest for day or two. I did have twinge pain afterwards a couple times but it was like zaps of nerve pain and didn’t last. Enhertu is tricky and side effects are inconsistent, so I found it difficult to manage but it’s worked so well for me that I just keep trying. Fatigue was terrible in the beginning but after a few good scans, I got a dose reduction to 80% and that has helped a lot. My best advice for Enhertu is to be ready for anything as far as side effects are concerned. I’m always free to answer questions and if you need a quick reply, tag or message me. I wish you excellent luck 😁
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Hi Illimae,
Thank you for coming straight back to me. I know that you are not without your own problems. I always knew the risk of progression but it was a shock when in happened. I will start TDXd (Enhertu) a week on Monday but am scared that it will not shrink the tumour quickly enough. Then I might need surgery.
I have asked for a second opinion about Gamma Knife, which I hope to get an answer to this coming Thursday. Gamma Knife sounds scary but I understand it’s normally done first and they are saying they will revisit in 2 months. It seems that now Enhertu can be given at the same time. I was told that Gamma knife could leave me unable to speak or write. I have a gut feeling my best chance is being denied.
The sticking point seems to be the size of the main tumour at 3 cm, and how long waiting for treatment. Will keep everyone posted. I have decided to push for Gamma as well, but might be denied.
Thank you so much
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@stirfry Knowing what I know about Enhertu now and how it works on me. I would want to try it first and have another MRI in 2 months, if you and your neuro oncologist are comfortable with that. A 3cm met is big and would require a larger area of radiation than is ideal, so even shrinking by a 20-30% would be helpful. I guess it really depends on how fast the tumor grows and what symptoms it’s causing to determine the urgency but it’s been my experience that both work really well and at similar time frames with significant results at 3-6 months from the start. I appreciate you keeping me posted, this situation seems like a tough call.
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Well a Nurse got back to me by phone to tell me the Second opinion from the Royal Marsden was in agreement with UCLH that Enhertu was the way to go at this stage. Like Illimae said a 3cm tumor is big. I also spoke with my Oncologist who is a trials doctor and all about the drugs. She said why fry your brain when you don’t have too?
I had been told to expect Gamma Knife and had prepared myself, so I felt a lifeline was being denied. I felt better when the second opinion was the same and I didn’t have to make a choice.
I guess we will look again in two months time, the first Enhertu treatment will start on Monday.
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Hi StirFry,
Sorry I've been out of town but I'm grateful Illimae jumped in because I have no special insights regarding brain mets, I do think that its more complicated, at least in liver, to radiate the larger tumors, so it makes sense to start with systemic therapy and see how that goes.
I have read that Her2-.PDL-1 bispecific antibodies are in development for immunotherapy, these would directly target PDL1 inhibition to Her2-positive tumors, which could be more effective in treating brain mets, and Her2-vaccines are looking very good in development, so there are other potential systemic treatments as well.
Please keep posting, here's hoping for an outstanding first response!
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@stirfry I appreciate the update and I’m glad you feel better. I had more than 2 years with no progression on Enhertu after dealing with new mets and several gamma knife procedures every 6mo-1yr before it. I’m so grateful for how well it’s worked and am hopeful you get similar results.
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Thank you cure-ious for your support and well wishes. It’s been 9 days since my first infusion. I am currently staying in my second home in Cornwall. I find It’s good for my mental health to get away from everything. Illimae I guess the jury’s out and I have to find patience. No major surprises yet. Will keep you posted further down the line.
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