Brain Mets Sisters
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Becs,
Good luck with your new trial!
Hugs, Susan
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latest brain mri results- all threatened spits gone. 10 new spots.
Disease obviously not controlled in my brain.
Looking into new options. Maybe even the CAR T trial someone mentioned.
A bit discouraged, but still fighting.
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trying again-
Latest mri results: all treated spots gone. 10 new ones. Cancer not controlled.
Looking into options. I can continue to do gamma knife to my small spots that show up but at some point insurance won’t pay for that. And it is obviously a stop gap. I’ll kerp doing it for my family but am in search of something that will control the cancer.
Feeling discouraged but not giving up.
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leftfoot, I asked my neuro RO how often I could have gamma and she said insurance would pay for it about every 6 months generally. If I need it sooner, we’ll be discussing WBR at that point.
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Leftfoot, what about Immunotherapy? If it works it is especially good for brain mets since your immune system doesn’t have the BBB problem. It can also be done with radiation I think. You could also try a clinical trial if there are no standard options left.
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perrynd1- thank you for your response.
I am looking into immunotherapy- Specifically the new CAR —T trial in CA for Her 2 + cancer.
Also will see another Onc at SCCA not because I don’t like my onc but because they are part of another hospital and might have access to some trials that I currently don’t due to where I get my treatment.
Meanwhile, I’ll see if I can do gamma knifecagain.
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leftfootforward,
Another trial drug that my MO considered for my next treatment is NKTR-102. The trial is specifically for brain mets.
Hugs, Susan
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Hi Everyone!
I got scan results today! NEAD! so blown away and in shock at the same time. I am HER2 positive- I know it is just asleep, but wow! brain tumor, gone! Liver tumor, gone! Breast and Underarm, clear. Lung was concluded to be old scar tissues, not mets finally. I feel like it is a miracle, sorely needed good news at the least!
My daughter is in the hospital. She was in ICU for 3 days and now on the psych unit. We found her non-responsive Sunday, 11/18. Prayers for her please, and all of us. She was stable for 10 years and now her brain is really struggling to find balance. She does okay during the day, but then in the evening, she wants to die again...Very sad. I am getting Co guardianship of my 15 mo old grandson with her sister. We are struggling to keep his life as normal as possible.
It is difficult and life doesn't stop throwing things, but I keep getting back up.
Prayers and hope for all of you!
Angi
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Angit, Awesome news, so happy for you! Sorry to hear about your daughter though. Has she been stable with breast cancer for 10 years or is it something else?
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Agnit such wonderful and devastating news. I often times wonder about the timing of things. For me it’s often reassurance that God is involved when I think about the timing and series of events. I’ll be praying for hope,strength and comfort for your family.
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Sierra, thank you for the prayers...timing is everything...
illimae,-She has a diagnosis of Bipolar with Psychosis, and was hospitalized from ages 12-19, 30 times due to aggressive mania and suicidal thoughts and plans. She is 29 and felt like her 15 month old would be much happier/better off if he did not remember her and if he was raised by her sister.
Court is tomorrow to get guardianship of Elijah.
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Oh Angit, I can’t image what it must be like to see your kids go through stuff like that, tough on the entire family. I wish you all the best
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My wife had a 3mm midline shift late Sept and then it was 8.5mm in late October... I am guessing it should be about 12mm by now. Reading https://www.revolvy.com/page/Midline-shift, it states anything over 5mm is cause of immediate surgery, but with brain mets all over, the neurosurgeon does not think she is a good candidate. My question is whether anyone here had one and how far has it (midline) gone? Any other thoughts/tips/suggestions?
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Angit,
So happy for your NED status!
So many families struggling with mental illness. My brother adopted two of his daughters children because she could not take care of them. They grew up loved and are now adults doing well. Your grandson is lucky to have supportive family. Wish you the best in your custody efforts.
Hugs, Susan
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Was interviewed for this Healthline video about metastatic breast cancer mentors and if you click on my name at the bottom of the web page, you can read an article I wrote: MBC Mentors
Hugs, Susan
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Thank you for that Susan, loved the video and your written story. I laughed when I got to the part about a quick death, as just a few hours ago, after receiving bear spray in the mail (ordered because I saw a bear at our cabin two weeks ago), I told a friend that if a bear got me, at least it wouldn’t have been the cancer, lol. I joke that my death had better be grand in some way, I haven’t gone through all this to get an infection from a paper cut.
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Curious, what eventually worked on your brain mets? My wife has BCBM and I think we're out of treatment options or is it all radiation therapy. Our last attempt is Kadcyla+Herceptin (Pending insurance approval and MUGA scan before starting) because I think the cancer may be Herceptin resistant... If this does not work, she may have to go to hospice... Her tumors are all over the brain with 2 bigger sized ones causing most of the symptoms (latest is 8.5mm midline shift on 30 October 2018).
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Thanks illiemae. Love your bear story. LOL! That would be painful but very dramatic for sure! Would definitely make the national papers.
hhfp, The treatment that worked miracles for me was whole brain radiation. Completely wiped out my 15+ brain mets including one 2cm+ one. However, if you wife can do gamma knife instead, the side effects should be more tolerable. WBR was suggested for me because my brain mets were so widespread and they didn't want to miss anything. Three years after WBR, had a couple of small tumors show up in the same spots and had them gamma knifed. One was only 1mm so they can be very precise. Surprised they didn't give your wife radiation right away. I got WBR right after my mets diagnosis, as soon as it could be scheduled. As you probably know, because of the blood-brain barrier, oral/IV therapies are of limited efficacy. Surgery is sometimes an option for very large tumors. I believe the tumor bed is usually radiated after surgery.
Don't know where you live but I highly recommend Dr. Penny Sneed at UCSF. She specializes in BC brain mets.
Feel free too PM me if you prefer. Hoping for the best for you and your wife.
Hugs, Susan
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hhfp
I was dx'd with more than 20 brain mets last year. They did whole brain rads immediately with me, too, and I'm still here. I do forget names and some words, but hey, I'm turning 60 next week, so it could be aging, too.
L
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Hi, thanks for the replies. She had CyberKnife then WBR a couple of years ago but the brain mets were not completely gone and are growing. Just got approval for Keytruda+Herceptin, will start Monday!
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hhfp,
Sorry, didn't realize that your wife had already gone through Cyberknife and WBR. Glad you were able to get approval for Keytruda+Herceptin. After that, how about the NKTR-102 trial? There is a trial specifically for BC brain mets patients who have been on previous chemotherapy.
Hugs, Susan
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Hm... that study says it is for tumors not progressing...
https://clinicaltrials.gov/ct2/show/NCT02915744I guess there are other Ant-PD1 drugs...
https://en.wikipedia.org/wiki/Programmed_cell_deat...
Anti-PD-1 therapeutics[edit]
Main article: PD-1 and PD-L1 inhibitors
A number of cancer immunotherapy agents that target the PD-1 receptor have been developed.
One such anti-PD-1 antibody drug, nivolumab, (Opdivo - Bristol Myers Squibb), produced complete or partial responses in non-small-cell lung cancer, melanoma, and renal-cell cancer, in a clinical trial with a total of 296 patients.[38] Colon and pancreatic cancer did not have a response. Nivolumab (Opdivo, Bristol-Myers Squibb) was approved in Japan in July 2014 and by the US FDA in December 2014 to treat metastatic melanoma.
Pembrolizumab (Keytruda, MK-3475, Merck), which also targets PD-1 receptors, was approved by the FDA in Sept 2014 to treat metastatic melanoma. Pembrolizumab has been made accessible to advanced melanoma patients in the UK via UK Early Access to Medicines Scheme (EAMS) in March 2015. It is being used in clinical trials in the US for lung cancer, lymphoma, and mesothelioma. It has had measured success, with little side effects.[5] It is up to the manufacturer of the drug to submit application to the FDA for approval for use in these diseases. On October 2, 2015 Pembrolizumab was approved by FDA for advanced (metastatic) non-small cell lung cancer (NSCLC) patients whose disease has progressed after other treatments.[39]
Other drugs in early stage development targeting PD-1 receptors (checkpoint inhibitors) are Pidilizumab (CT-011, Cure Tech) and BMS-936559 (Bristol Myers Squibb). Both Atezolizumab (MPDL3280A, Roche) and Avelumab (Merck KGaA, Darmstadt, Germany & Pfizer) target the similar PD-L1 receptor.
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Hi all,
I was diagnosed with HER2+, hormone negative metastatic breast cancer about a year and half ago. I’ve been going along with my body being pretty stable though not quite NEAD. Yesterday I found out I have brain mets, about 10, pretty small, but spread around. I met with a radiation oncologist today and am set up with whole brain radiation starting Monday and continuing for 10 daily treatments. The radiation people were really reassuring so I’m not actually too stressed. I am on a steroid which I think is already giving me insomnia and hunger. I’d appreciate any tips about the radiation side effects, dealing with the steroid side effects, and also suggestions for mild shampoo. I can call the radiation center but I’m not sure what they mean by that. Also, this is happening during my winter break and I’m expecting to go back to work on Jan 7. I’m also otherwise healthy and only 41. Does being able to work a somewhat demanding job like a week after radiation seem pretty reasonable?
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Henrietta, I had two gamma knife radiation treatments (easier than WBR, I think) both on Friday’s and returned to work on Monday. I didn’t have steroids (mine were very small) and had no SE’s from the radiation itself. There is one odd after effect for me though, which is that after rads, I noticed a twinge, like my brain itched. The sensation was not painful and happened for only a second, in random spots. It happens regardless of new mets or not, so it no longer worries me but it is strange. Good luck!
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Thanks, illimae!
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Hi Henrietta,
I had WBR for 15 sessions at the end of August and into early September. I took the first week off from work completely, because I didn't know how it would affect me. I had terrible headaches after my first treatment, but the rest were OK. I started getting headaches again when I started to taper my steroids in week 2, so the doctor kept me on a higher dose until I finished radiation. I also felt pretty wonky throughout treatment, like kind of dizzy most of the time, so I didn't drive at all while I was getting WBR. I worked part time from home for the second 2 weeks -- I would work in the morning, and then leave after lunch for my treatments. I went back to work full time (still from home) as soon as I was done. I didn't have any trouble.
One thing you should ask your doctor about -- mine prescribed 6 months of Namenda (memantine) to help preserve my cognitive function. I think it has definitely helped me -- I have not experienced any of the mental fog that is common with WBR.
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I had no problems at all after 10 sessions of wbr.
Good luck to you,
L
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Henrietta, I’ve only had SRS for my tumor bed after surgery, but I do have some tips for the steroids. Are you on Dexamethasone/Decadron?
Baby shampoo is what i used post surgery (of course you should check with you doctor before buying imo just in case). Steroids make me very constipated, hungry but feeling full at the same time, insomnia, grouchy (or grinchy for the season, lol), and just not feeling well. For constipation I use Miralax. It’s worked better for me than Senna and any other natural or prescription. Plus it makes me get my water in for the day. For the hunger I would get baby carrots so i have something that isn’t bad to just munch on mindlessly. I do have a thing for crunchy foods though - I love crunch. I also got very itchy and just tried to use some good lotion to help with how much I was scratching. My fiancé asked if I wanted foot massages one night and I just wanted him to scratch my legs! There were more SE’s but I can’t remember them - just that I really don’t like steroids. Good luck with your treatment I’m sure everyone is rooting for a good response for you
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Thanks so much, TwinkleCat, Lita and SierraPineapple.
I am not n decadron. I’ve started taken Ativan at night and that let’s me get 5-7 hours of sleep, though here I am up at 3:00 am! The baby carrots are a good idea. I find I don’t need to eat a ton when I get hungry, it just comes on me quick. I’ll ask about the Namenda as well.
Thanks! I’ve never had any radiation before so this is a whole new world for me.
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Got results from Thursday’s follow up Brain MRI and it was mostly good. Nothing new and all previously treated spots were gone except one. The remnant from Gamma knife in April may have increased slightly and we are waiting to see how it looks in the next MRI, a couple months later.
My question is, if you’ve had this situation, what was your outcome? I know it can’t be gamma’d again. Did anyone have a leftover spot that stayed stable or grew slowly.
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