Brain Mets Sisters
Comments
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Darn it kikomoon, I was really hoping for an easy fix (relatively speaking). Perhaps there are some trials or immunotherapy options to regain control up there? I’m wishing you the best moving forward.
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Kikomoon,
So sorry to hear that you are seeing progression a year after WBR. They should be able to do gamma knife on the spots that have returned. I've had gamma knife twice since WBR but they were just a few tiny ones that regrew where there had been previous tumors. I think they can gamma knife a large number of tumors. I think that LFF had gammaknife on 50+ tumors.
Hugs, Susan
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Everybody with HER2 positive plus sign is messed up. Hopefully mods get it fixed.
Ki-moon, I'm so sorry about the Mets. I had mine grow back in 2018 and had 5 rounds of rads. There are still radiation options along with surgical should the need arise.
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thank you Mae, Susan, and Mara.
My local MO has said we can try Enhertu, that there is evidence that is crosses the BBB. However, the Doctor at MDA says the Tukysa is the best and does not seem to want to talk much about Enhertu. But my thought is that if Tukysa is not working, why would I stay on it and not try something else? What good is the rest of my body if my brain is overcome by Mets?
So I am stuck with listen to the older Doctor with years of experience at a world class facility or take a chance on the very young woman just starting her career. I meet with her this Wednesday. I will also wait to see what can be done with rads before making any decisions
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I don't actually understand the wisdom of keeping you on the same treatment. If you have not already, really press the doctor for the reasoning on keeping you on the Tuksya if it has not stopped progression. You need the doctor to be clear on why this is suggested. I would also be asking about radiation options as well, not seeing that in your posts being suggested. Nothing wrong with going over spots even after WBR. Drugs are great but nothing wrong with some back up as well.
In my own case, my RO has stated that if I need more radiation where my mets were located, even though it was done, she would consider only since it looks like that area of the brain is mostly healed.
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Kikomoon, I’m sorry to hear of the progression. It is heartbreaking and frustrating. I hope one of those doctors can come up with a plan to move forward with.
My one met has been quiet since SRS in 2020. My MRI in December stated it was barely detectable - shrunk to 2mm. Now my latest MRI on April 13 showed it more than doubled in size and there is edema surrounding the area. My RO thinks it may be “radiation changes” vs. progression. Is he talking about necrosis? He wants to follow up in a couple of months to get a better idea. He told me it is very deep in my cerebellum and does not want to risk surgery at this time, but also I can’t do more radiation if it is necrosis because that would only make it worse. I truly hate this 😡
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Kikomoon, I’ve had a pretty similar situation with progression on Tukysa but not after WBR (which I haven’t had yet). I asked my MDA MO and neuro rads onc why they don’t recommend changing? I was told that some progression doesn’t man it’s not working and that it may be preventing more significant progression and that Tukysa wasn’t meant to prevent new mets but to increase the time between progression and keep mets minimal and treatable with radiation preferably. When I asked about Enhertu, my MO said she wants to keep that for when there’s progression in my body but for now the current combo is tolerable and working, even if it’s not complete prevention.
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myshadow, I am really sorry what you are going through as well. I truly truly hate this diseases too.This just plain sucks.
MDA called today (Saturday!) and got me in to see the brain Mets team this Thursday. I think we will just drive in for that and go home. I miss my cats. We are in Galveston for a little getaway but I seriously just want to be at home with my cats.
Mara, I am open to re-radiation if it makes sense. Unfortunately I had “numerous” (too many to count) Tiny Mets when they first caught them which is why we did WBR. And I think the problem is just too many are back. Maybe they can just zap the biggest ones. I will see what the “brain trust” says and also talk with my local MO this week.
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Illimae,
I love your statement "some progression doesn't mean it's not working and that it may be preventing more significant progression".
I was seeing dramatic shrinkage on the ARX-788 trial but my last scan showed continued dramatic (50%) shrinkage of my liver tumors but progression in my lungs. Just spoke to the trial oncologist and she said she thought I should stay on the trial. Talk to my MO on Monday so will see what she says. My tumor markers have also moved way down to below the normal threshold.
kikomoon,
Hoping your MDA team will figure something out. Keep us posted.
Also wanted to update those who are not on LFF/Liza's Caring Bridge site. Her son posted yesterday that she amazingly is still alive after being off of food and water for seven days. However, she is no longer responsive. They think she will pass soon. He also said that she is on a Morphine drip and seems to be "peaceful and relaxed". I'm glad for that.
Hugs, Susan
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Mae, we must have posted at the same time. I’m pretty sure Tukysa bought me some time, and I do feel it would be faster progression without it. Will see what the brain team says. Did you meet with the the brain Mets team when you had your gamma knife?
Susan, thank you for the update on Liza. Im glad she is peaceful. I also hope your MO can shed some light on your situation. Boy, I’m sure we could all do without this mess of a disease. To say the least
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Kikomoon, I met my neurologist and neuro radiation oncologist for my initial brain mets, since then it’s just my neuro rads onc, Dr. Yeboa (except when I had a craniotomy).She discusses any unusual situation or new radiation with the tumor board, after 4 years with her, she knows what I will deal with and what I wish to avoid, she then speaks on my behalf. I just love her. I had a lepto scare that shook me and she brought me back from the edge, saying that she’s fully invested in me, will have a next plan and will take care of me with whatever comes down the road, it means so much.
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LFF's son posted on the Caring Bridge site:
Liza died this morning at about 3:45. Eamon was with her when she passed. Corwin and I were here shortly after. She was very peaceful and comfortable at the end. I'll be bringing the girls in to see her this morning and say our goodbyes.
So heartbroken I can't really express my feelings right now.
See you on the other side, Liza!
Love, Susan
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She always made me less fearful of brain mets before and after brain mets diagnosis. She will be missed here. My condolences to her family and friends and everyone here.
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I remember that, years ago, we used to argue a lot about WBR vs. multiple-tumor gamma-knife. She was so tenacioius; I would get irritated. At the same time, I admired her intelligence and willpower. Then we met in person when she was on a trial at UCSF. We loved each other immediately and remained close until her surgery. She somehow balanced having cancer with being super dedicated to her kids, working, and raising money for the American Cancer Society.
I still can't believe she's gone. Between the boards and my support group, I've had to deal with lots of deaths. Some are especially hard.
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Susan - Ive thought about you and LFF a few times today and just wanted to extend my condolences. She was so so strong and practical about everything and I know you have got to be hurting to have lost such a close friend. I hope you can find peace and comfort and continue on (i know you will!).
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My condolences to LFF’s family and friends. I didn’t “know” her, but I always admired the way she took everything in stride - and just did what she had to do in order to pursue the things in life she really cared about. Her attitude was everything.
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I was sad to hear about LFF's passing as well. When I first was dx with breast cancer and did a lot of reading on my particular IBC dx, I always feared getting a brain met. Seeing LFF, Susan and Goodie dealing with it for so long brought down that fear some even after my own dx. She went through an awful lot and my feeling and from reading was she was able to continue to push and enjoy her life as much as possible which is amazing. My condolences to her family friends and friends here as well.
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Thanks sondraf!
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Susan, I know in reading that you and LFF certainly did have a good friendship beyond this site which must have been wonderful. I really did follow along both with your experience early on with brain mets to hers as well. I don't go too much further back because treatments are so different and many people are gone but both you and LFF made me much less fearful and I will forever be in your debt as well as hers.
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Thanks, Mara. I'm so happy we were able to help you. When I was first diagnosed metastatic with brain mets, etc. eight years ago I read through this thread from the start. The women were so wonderful and had such a close and supportive relationship. By the end, I realized that most of them were already dead when I started reading. One person who was still alive at the time was K-Lo, who started this thread. I remember her every time I open this thread. She was a funny, quirky woman.
Hugs, Susan
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Sending our thoughts and love to all you here!
Prairiesea, what have you decided? Did you get back to finish the semester?
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I hope it is okay for me to post here. I was dx in April with a brain met. After a PET scan prior to surgery, it was found I also have a met to the lung and two nodes in the chest.So far, the initial pathology suggests it’s from a primary lung cancer, not the breast, but my CA27-29 is high, so my MO has ordered further genetic testing to make sure I get the correct dx.
I am scheduled for the imaging and planning of upcoming Edge Knife radiation to my brain. I had one mass, large at 4.2cm. I won't know how many sessions until next week, but so far they think around five. I am about four weeks from the resection. It was in the occipital and parietal lobe area, so the upper back part of my head. What are some things I can do to prepare for this? How long should I anticipate side effects?
Many thanks, and I am sorry for everyone.
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waves2stars, I’m not familiar with “edge knife” but I have had gamma knife several time and one fractionated rads (3 sessions). I can’t think of any prep to be done but can say that most people find single and minimal radiation treatments pretty easy with only a minor headache or soreness the next day or two. Good luck!
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Wow, that is great news! I'm used to headaches now. But you didn't experience cognitive difficulties? I am concerned I will experience confusion again, like after surgery.
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waves, no cognitive issues with my radiation and recovery has been just a day or so. I think issues tend to come up when the radiation is a longer duration and larger area. There may be more side effects with a larger tumor but 5 sessions sounds pretty good.
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Thanks, this is very encouraging in my generally discouraging situation.
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Waves, I had whole brain radiation and for a few weeks while the brain was inflamed, I was unable to follow books or TV shows. That all came back faster with some exercise once I felt up to it. I can honestly say I don't feel my memory is any worse than it was before all the brain stuff.
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Thank you, Mara, for sharing! My memory hasn’t been great, anyway, ha ha! I have a hard time sorting out the name of the weekday it is (You know, that day before hump day….Today is the last day of the work week.) At least I’m 90% certain it’s 2022! I can live with that
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My final pathology of the brain mass and lung biopsy concluded my mets were lung cancer, but because of the ca27-29 and I had an 8% weak “smudgy” ER+ In the brain mass, my onc is giving me a treatment plan that will work for both breast and lung cancer until the genetic profiling comes back. Other markers could go either way for lung or breast. They are classifying me as stage 3b non-small cell lung cancer with a single stage 4 met, with curative intent. I will have concurrent brain radiation (five rounds) with chemo (4 rounds) which will be premetrexed, Carboplatin and pembrolizumab. They are working lung radiation in somewhere, too. I had my planning session today, and an additional mri to make sure they removed most of the mass and it hasn’t grown back already. I want to game end whatever cancer is in my body but this plan sounds like it will be tough.
I’m worried I will find out in a few days it has come back in the brain and they will trash this treatment plan and I will be back to square one. I don’t know what typical wait times are from resection to rads or chemo, so I am scared this is taking longer than it should. This process has been a nightmare at the facility I’m at, so I’m hoping to at least start chemo there then switch to MDA once I get through their initial processing. Maybe switching facilities during treatment is a worse nightmare than what I’m currently dealing with. I am pretty shell shocked right now, and I can’t even imagine how much grit it has taken for all of you live through it again and again. Thank you so much for publicly sharing your stories because it has definitely helped me understand, be realistic, and yet a little hopeful.
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Waves, I've been going to MDA from the very beginning, 5 1/2 years ago and can say that it is a well oiled machine meant to be as beneficial and trouble free as possible. I've recently moved 10 hours away and allow a local onc to handle the routine infusions but MDA will always be my primary and I appreciate them so much more now that I see what smaller facilities are like. It's totally worth it, good luck!
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