Brain Mets Sisters
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I had WBR for brain mets.....to many to count. They were almost all gone after 1 month, but some came back in a few months. I had SRS, on the new ones and started xeloda and tykerb. Just found out yesterday that all tumors have disappeared. I am currently NED. I know it may not last, but I'm going to enjoy it while I can. Love to all.
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kkrenz, yay! Wonderful news, congrats 🎉 🎈
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Kkrenz
What does SRS stand for? Is Xeloda and Tykerb oral meds? I haven't had WBR, I just had the gamma knife procedure done 12/5/18. Go back Monday for another MRI to see whats going on. Thanks for any info
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erkipper....SRS.....stereotactic radio surgery....I think. Someone correct me if I'm wrong. I had more radiation....but it was targeted on tumors, rather than whole brain. Yes, they are oral meds. I've had a hard time with them, but some people tolerate them very well.
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Kkrenz, glad to hear you are dancing with NED.
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Kkrenz wonderful news!!!! I’m cheering in your corner that it lasts. Mae is right on SRS...I had itfor my initial met and am hoping they can do it again for these new ones. One is in the center of my brain so I’m not sure how that changes my options. I know it’s not able to be touched with surgery. No place is good to get cancer, but it’s feels like the brain is just a deeper level of cancer violation for me.0
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I had brain mets from the time I was diagnosed and am currently doing SRS. I was also recently diagnosed with leptomeningeal metastasis from a lumbar puncture that revealed cancer in my spinal fluid. The neurogical symptoms are scary and it all seems so uncomfortable at times. Hoping for better days ahead.
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hopeinchrist, take a read back through this thread and look for posts from agness. She signs off as Ann. She had been through LM and her earlier posts are a treasure grove of knowledge on what she went through and treatments she took. She also receives drugs through her ommaya port in her head direct to her brain.
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Thank you so much mara51506! I will look back through her posts to see what information I can find. I really appreciate it!
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I meditated a bit , the first time I put the mask on it was too tight so they had to cut around my nose area into the plastic. Overall it wasn't that bad and it only lasted 6 mins per drsdion
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Hi everyone,
Thanks so much for this wonderful forum. It's been very helpful to me and my family during a crisis. This is my first time posting!
I'm posting on behalf of a close family member--let's call her Aly--who was just diagnosed with LM (one met in the outer membrane of her left brain and also in her spinal fluid) after surviving and thriving for 7+ years after a stage IV breast cancer diagnosis. Aly's cancer is HER2 negative, ER positive, and PR positive; she was diagnosed at age 21.
Aly lives in Tahoe and generally receives treatment there, but her primary oncologist is at UCSF so as soon as she was diagnosed we took her to San Francisco for guidance on next steps. Her Tahoe doctor recommended an ommaya placement immediately, but here UCSF doctor suggested enrolling in an immunotherapy trial in Boston. We've reached out to the trial doctors and it looks like Aly is eligible. We have an appointment in Boston on February 11!
The problem is getting her well enough to travel to Boston for the trial. Before the LM diagnosis two weeks ago, Aly was in great shape. Her breast cancer was under control with weekly chemo (Taxol) and we event took a fabulous trip to Belize over the holidays. Since her diagnosis, she has been experiencing debilitating nausea and headaches and has had two seizures. We've been to the ER twice (once in San Francisco and once in Tahoe) and despite lots of anti-nausea meds and anti-seizure meds she isn't doing well keeping food down. She was able to tolerate a LP to administer Methotrexate yesterday, but we're worried about how quickly this seems to be progressing.
Next steps might still be an ommaya reservoir, but this is a tough decision because the clinical trial has a 14-day wash out period. So my questions..
1. I am curious to hear experiences from folks who have treated LM with ommaya placement or intrathecally as part of a LP. Did either significantly improve symptoms quickly?2. Her original anti-
2. We're having lots of problems controlling nausea and seizures. Aly is on Reglan, Zofran, and Keppra with occasional Ativan. She also takes CBD when she can hold it down and is using peppermint essential oil, ginger, and other natural nausea remedies. Is there anything else we can do?
Thanks in advance,
Rachael
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rach, I don’t have any specific LM or Ommaya advice, sorry but just wanted to say, diagnosed at 21, damn. 🤬
Also, if she got the port, would she still be eligible for the trial? And, I’m surprised WBR hasn’t been recommended for the LM, or has brain radiation already been done?
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If she gets the port there is a 14 day wash out period to do the clinical trial so it might not make sense to do if the trial is the long term plan. I am just worried that her symptoms will preclude her from traveling without treatment.
None of the doctors we have seen have even mentioned WBR. Intrathecal chemo and the immunotherapy trial are the only two options that have been presented. Perhaps this is because her scans only show a single brain met? In addition to the Boston trial, we are also going to plan a remote consult with Memorial Sloan to get their take. We will be sure to ask them about WBR and other treatments. I have heard from some survivor friends that gamma knife surgery can be successful.
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rach, sounds like you have a good plan, hopefully that remote consult goes well. I asked about the WBR because I am under the impression that it is an option to address the LM. For the single brain met, you are correct about gamma knife so long as the met is within the size requirements. I’ve had gamma twice and found it fairly easy with the head frame fitting as the worst part.
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I am sorry to hear about Aly. I would suggest reading back through this thread for Agness/Ann's posts. You may have to go as far as 2016. She has so much info on her own experiences and treatment of her own LM that I could not possibly post all she has contributed.
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I’m so terrified. Just met with my onc this morning and in addition to liver and bone, I have six spots on my brain. One is 3.6 cm and causing sporadic dizziness but don’t have any other symptoms. I meet tomorrow morning with my radiation onc to get my radiation plan. I am so not ready to die but Mets in the brain scares the crap out of me!!
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Hang in there, ladinred26. Brain mets are a scary diagnosis but treatable. You will feel a lot better once you have a plan to attack the mets.
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ladinred26, we hear ya, it feels like the end but many of us are outliving the estimates you find on the internet, seriously, don’t look at those. As Goldie mentioned, having a plan will turn things around. From what you’ve described, I assume either whole brain radiation (WBR) or a combination of Cyber Knife to the 3.6 cm lesion and possibly Gamma Knife to the smaller ones would be the treatment options. The Cyber and Gamma treatments typically have much less widespread side effects, I’d prefer it if possible.
Goldie, looks like 4 years with brain mets for you, that’s awesome. I wish you many more 😀
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I was DX with a brain met almost 3 years and still going. I had WBR and local radiation a year later. While treatment can be tiring, once it's done, you feel a massive improvement. Don't bother reading survival stats, keep up with brain met studies when looking at new drugs though. Make sure you do NOT look at brain cancer sites. I made that mistake and scared the shit out of myself. The following link is good. Talks about current treatments etc. https://www.brainmetsbc.org
Like others said, once you have a treatment plan, you will feel better.
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rach,
My wife tried immunotherapy too late. She had a seizure in Apr 2018 (seizure only) then a few more Jul 2018 (losing control one one side of her body). We did not try immunotherapy until Dec 2018. By then, it was too far along and the initial treatment almost killed her. We are now out of treatment options.
Double check with the SF Onc, but I believe would be best to try immunotherapy (as it would cause swelling) ASAP. You would need a biopsy first, though, to identify what the tumor is susceptible to. Also, SRS (also causes swelling) along with immunotherapy seem to work better. The biopsy may also tell you what other drugs would work later.
Good luck, plus that was smart to reach out to MO in the SF area, my wife only worked with 1 Mo locally.
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Lindalou,
Great to hear from you! It's been a long time.
I haven't had any nasty side effects on Alpelisib though I have spoken to others who have had horrible side effects and had to leave the trial. My blood sugar levels (Hemoglobain A1c) went up a lot so I went on a Keto-ish diet to help control it. That seems to have brought my blood sugar back to a normal range. My fasting glucose levels have been very good so they are not concerned. Check out the Alpelisib thread I created. More information there.
Hugs, Susan
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ladinred26 I also just found out today I have "numerous" spots on my brain...(already have chest wall, lymph involvement, and sacrum) ....this seems so much more scary, have not really been scared until now. I went it for mapping for radiation on my chest, then went to have an MRI due to light flashes in peripheral vision...when the dr calls 2 hours later, you know it isn't good. So tomorrow it's back for mapping on my brain, and change of plan...
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@illimae: That is encouraging to hear about gamma knife. Thanks for sharing!
@hhfp: I am so sorry to hear about your wife.
@mara51506: I'll look for those posts tomorrow. Thanks!
Aly was admitted to the ICU in Reno today and although she has not had a seizure she is still nauseated and is now starting to lose vision. So far the team of doctors at Reno seems great. We're holding tight and trying to get some rest.
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Delvzy so sorry to hear ur dx. How truly scary. I had my first wbr today. As one brain Mets sister to another, sending u a massive hug!!!!
Dina I agree with ur thought process. I wasn’t truly scared until I hear 6 nodules in the brain. I was thinking I can kick these tumors’ asses. It just two spots in the liver and inmy spine and pelvis.
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Illimae
My RO said that Radiosurgery was not an option for me that the standard of care is WBRT. But from what u said and other articles I’ve read, Radiosurgery could be an option for the large tumor.
I want to do some research but I’m so damn tired I can barely keep my eyes open.
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Maybe a second opinion would help. I’ve heard most insurance covers it and it might make you feel better about choosing the treatment options.
I’m hoping to be able to do SRS to my 2 new spots, but don’t see the RO till next week. I did get in to talk with a Neuro Onc today and he recommended adding Gemzar to my Halaven. Also restarting Avastin for vision ‘swelling’ issues and they want me to see a neuro-ophthalmologist. Sometimes I think they just like to poke at me and wonder at all the weird stuff I have going on. What is an ophthalmologist going to do about ‘swelling’ induced vision loss? I guess we will find out...I try to keep an open mind.0 -
hhfp my thoughts and prayers go out to u and ur wife.
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Ladies 1 wasdiagnosed with LM over my entire brain lining and into my spinal fluid, I had WBR straight away which worked. Dry tell. My Onc said that immunotherapy only works if you are not ER and PR positive as the cancer cells hide. I am having chemo once per week and I can easily walk and run 3km
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Anne have I read correctly that we have both LM
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Hi Delvzy, I also have LM. How long ago were you DX?
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