Brain Mets Sisters
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Cinloo, at times we are fairly active depending on what is going on for people.
I have been dealing with brain stuff since 2015 according to my MO. It was only cells back then so did not show up on any scans. Had my chemo first, then Herceptin and Perjeta. My body has no evidence of disease from the neck down which is fortunate. My brain met became evident in 2016. I had a 10 cm tumor and was having seizures and nausea due to brain swelling. I was given a lot of steroids, had a craniotomy and whole brain radiation. RO said the whole brain radiation was due to having inflammatory breast cancer and trying to prevent a whole bunch of mets from showing up. 4 years on, I only have had to treat the original sugery site with follow up radiation though this was not unexpected as the original tumour had partially wrapped around a vein.
I am feeling fairly strong, walk multiple times most days, enjoy eating a lot. I am dealing with things mostly by myself but I feel OK. Scans on body and brain are now six months apart since I am lucky enough to have enjoyed stability.
In the beginning I too was terrified. You can't help but be terrified when you have so much information flying at you. It will take time for your brain to adjust (not meaning about the mets) to your new normal. Social workers, staying active physically and meditations I listen to at night help a lot. But as I said, it will take time to process things. I hope you have good people surrounding you to help you deal with this. I am sorry you are here but glad you posted. PM if there are any other questions. Also, when you have time, it may be helpful to fill out the info on your diagnosis eg ER/PR + or negative, HER 2+ or -. That way it would give us an idea about medications that are available for you.
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cinloo- we are active. I’m on kadcyla and tucatinib.sorry you are here but it’s a good group. I’ve been living with brain Mets since Dec 2012. Lots of experience.
Lots to learn from this community here.
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Hi Cinloo,
Welcome. I'm sorry you find yourself here but please know there is a lot of support and info from our group. I had a craniotomy in February 2015 to remove a met and gammaknife radiation to the tumor bed site in March 2015. I've been NED since. My next brain scan is coming up on August 17th and I'm hopeful it will continue to show NED. I take Arimidex and manage the side effects well enough to lead a pretty active lifestyle.
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Hi all:
Not sure I have posted in this group before since my brain mets were relatively recent. Hello and sorry to join you but glad you're here! I will go back and read..... Wanted to pop in for some collective wisdom.... I am working with my MO to figure out my next line of systemic treatment. Would to to get your 'patient experience' perspective. (I also have liver mets. Single lesion @ 5 cm at last scan.)
Next up is Tucatinib/Herceptin/capecitabine *or* Enhertu.
- Anyone been on Tucatinib/Herceptin/capecitabine? How is it?
- Anyone know anything about 'cranky liver' on ADC's, esp Enhertu? (see note below)
Notes: a) For brain met (single lesion), I got CyberKnife in July.
b) My liver responded unfavorably to Kadcyla - to such an extent that we were discussing when in future I might have to d/c it when I had progression - after only 8 months. A well-informed MBC veteran has told me that she has heard early reports that some who had 'cranky liver' on Kadcyla are at higher risk for similar on Enhertu, another ADC. I have *not* found documentation but Enhertu has not been out long. Anyone know anything about this? Seen reports or documentation?
'Cranky liver': (in my case on Kadcyla) somewhat elevated liver values (AST and ALT < 3x ULN but close, Alk phos >3 but <5 ULN); psuedocirrhosis; capsular retraction; lost @ 1/2 of right lobe (shrinkage); portal vein thrombosis. Has improved since d/c'ing Kadcyla.
MBC Tx Hx: THP -> HP; Kadcyla; Navelbine/Herceptin/Avelumab (on clinical trial). Moved on after progression on each.
Evaluating CyberKnife for liver but will still need systemic Tx.
Thanks a bunch!!
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Lumpie, welcome! I’m a long time fan of your breaking news thread, thank you for that.
I have no experience with either of your potential next treatments but will say that my MO at MDA is pretty excited about the tucatinib combo. She was involved in the trial and made a presentation at SABCS. I believe it may be my next step after I see her later this month.
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Thanks, illimae! both re the 'news feed' and the drugs.
I can't really complain.... it's almost an embarrassment of riches. Enhertu is looking like a miracle drug for many. And Tucatinib is certainly promising, esp for those with brain mets. One of my MO's (I got some bonus MO's via being on clinical trials) thinks we will see Enhertu penetrating the blood brain barrier and combating brain mets as well and Kadcyla. Her rationale is that the molecules are the same size. That could be huge.
My MO just sent a very nice email. She says that generally the Tucatinib combo is more hepatotoxic. Studies indicate that hepatotoxicity is a meaningful risk with that combo. The FDA insert for Enhertu indicates low levels of grade 3 and 4 hepatotoxicity. The Kadcyla insert about hepatotoxicity is a little scary. I bounced back well after stopping Kadcyla and we monitor (bloodwork and scans) carefully so.... I suspect that this is going to be a matter of "pick your poison" and switch if it gets too toxic. The scary part is my last drug combo did nothing. Liver tumor grew like crazy and we discovered the brain tumor! I think I might as well have not been taking any drugs.
It's a little scary when we get out here where we are making it up as we go along. Thanks. And good luck, illimae, if you are switching treatments!
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Things are moving fast today. We have picked my poison: Enhertu aka DS8201. We'll see what the Radiation Onc says. If he says we can do radiation first, we go with that. If he says do some chemo first and circle back, we do that. I meet with Rad Onc on Thursday. I have a tentative infusion schedule for Friday in case needed. We don't have a date for brain mets scan yet. Hoping late Sept. Very good to have a plan.
Anybody gotten Enhertu? How is it? Thanks.
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Hello Cinloo, welcome. I had a craniotomy in March. I’m doing so good, really. I’m on my 6th Kadcyla treatment, no major side effects. I go on about my life like nothing, physically I mean, as I do struggle with the emotional/mental rollercoaster of this disease. I try to exercise when I can, running 20 mins a day has helped even if I’m going in a slow pace. I have learned to sleep and rest when my body screams for it. Best of luck and reach out if you need anything.
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Hey, friends. This may not be an appropriate question for this thread since I don't have brain mets, but I asked on the bone mets thread and got no answers so I figured you all were the most likely to know.
I just learned that I have 4 skull mets, 2 of which are large (2cm and 2.5cm) and need radiation because the dura adjacent to those two lesions shows some thickening (probably inflammatory response?) and that is causing some pressure feelings in my head (and possibly the ocular migraines I've been having since May? MO wasn't convinced of that based on the MRI images but I have to wonder.). No brain mets evident at present, thankfully.
I've had extensive bone mets (basically every bone) for a decade so this is not terribly surprising to me. But I've never had radiation so that IS new territory. I will see the RO very soon.
Have any of you had skull mets radiated? What can you tell me about side effects and recovery? Hair issues, fatigue, nausea, headaches...?
Thanks.
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lulubee, I haven’t had skull mets but I’ve had brain rads several times. In my case, I had fatigue just the day of, headaches on occasion but only like a twinge or an itch, no nausea. I did have a small patch of hair that thinned once but has since grown back. I’ve heard hair loss is more common with mets closer to the surface or skin, so that might be something you see with skull mets. Good luck
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I know several people that received cyber knife to the skull for skull Mets. They had fatigue and some hair loss but said overall it was not too bad of an experience.
There are two choices gamma knife and cyber knife. Cyber uses a mask and gamma uses the halo.
Good luck.
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I had regular radiation on one area of my skull last year (before I ended up with brain and dural mets, which have required other types of radiation). I'm guessing the spot was too big for radiosurgery (cyberknife etc.) I think I had 5 treatments. It was on my forehead, so no hair loss and just a bit of fatigue. Not much recovery time required and the skull pain I had been experiencing went away quickly.
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Thank you Illimae, LFF, and Sary. You've helped me calm down. Somebody told me I'd lose a bunch of my hair and it wouldn't come back. Been there, done that already with 2 years of weekly Taxol that ended a couple years ago, and just lately got to the point that I have something close to a hairstyle going again... Anyway, thanks so much.
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Hello. I was recently diagnosed with multiple brain Mets and will be having WBRT soon followed by SRS on the larger lesions after a month. I'm terrified but glad that I found you ladies. I'm hoping the radiation works for me. I also have lung and bone Mets. Any suggestions or experiences you can share are most welcome.
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Welcome MyMiracle. I'm sorry you find yourself here but please take comfort in the knowledge and support here.
In positive news, I had my brain scan yesterday. It continues to be clear. This marks 5 years of NEAD in my brain and body. My neuro onc actually got a little teary when giving me the results. He said we don't get a lot of good news around here and I'm just so happy for you. I'll follow up with a scan with him in a year, unless something changes with the rest of my body.
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Cinloo,
Glad your craniotomy went well. I haven't had brain surgery yet but have had WBR (whole brain radiation) and two treatments with gamma knife.
If you read through some of the previous postings you will see that many of us have been living with brain mets for many years with a good quality of life. I've had brain mets since my first Stage 4 diagnosis six years ago and am still very active and feel very well. Most of the studies you see about brain mets prognosis are based on old data. Don't ask Dr. Google!
Looks like you are HER2+. Most people with brains mets are HER2+. There are so many treatments now for HER2+ I believe they are outliving ER+/HER2- people. Anecdotally, I'm in a young metastatic BC group (45 or under at first diagnosis. I was 36 at first diagnosis, now 56) where HER2+ members with brain mets have been alive for a long time, 10+ years and counting. So far, my brain mets have been easier to control than my lung mets and I started off with more than a dozen brain mets.
You will find lots of knowledge and support here. We are here for you!
Hugs, Susan
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Don't know if anyone posted this previously but our dear LindaLou has passed away.
Hugs, Susan
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I am so sorry to hear this. My condolences go out to her family and friends both in regular life and people here who were friends with her as well.
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Susan, Thanks for letting us know about Lindalou. My heart goes out to her friends and family. Another sweet person taken too early.
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than k s gir lettibg ya know. Thinking of her family and holding them in my heart
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I remember LindaLou from our early stage days (around 2006)because we frequented the No Reconstruction threads. Such a sweet and caring woman.
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Susan, you and LindaLou are some of the only ones I've seen lately who have been on the boards longer than I have. I remember you both from those early days. I still miss a lot of the amazing gals from back then. I'm sorry to hear she's gone. You hang in there!
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Hi lumpie, today is my first day to start the combo of Herceptin,Tukysa and Capecitabine I started zexloda 3000mg/day , I don't feel anything yet, but I will keep posting my experience with you.
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Thank you very much for the warm welcome and especially for the good news that you are doing great and are feeling great. It gives me so much hope that I may have many more years than what Dr. Google predicts. I’m just waiting for the schedule of when my WBRT sessions will start then I will let you know how I am getting on.
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Hello, I meant to say something about my Xeloda, tykerb, herceptin regimen but honestly I forgot. Also I have been having lots of thinking problems. I mostly remember to take my pills due to my husband. My drs say I'll get back to myself in a little while but i think I started the chemo 2 weeks ago and my whole brain radiation finished about a month ago. It might just be an accumulation of everything. My body is often weak, I never eat, I wake up at night. My potassium is down. I do get diarrhea. No headaches. I must admit I've been struggling emotionally. That's just me though. Now I'm really upset. I was briefly stuck in the shower because I feel so weak. That's never happened before.
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I highly recommend a tub chair. I could no longer get out of the tub. I have an attachment on the showerhead and do à handheld shower. Feels safer
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Oh seilien, I wish you could eat. I have a paralyzed vocal cord as a complication from brain surgery, which lead to a soup and nutritional drink diet that I still choked on often. As a result of not eating enough, I lost 75 lbs in 6 months and got so weak I couldn’t really do much of anything, it was scary and dangerous. I hope your docs can help.
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Lulubee- Here I am today with my 18 year old son. He was 10 at my metastatic brain mets diagnosis. Keep living your life.0 -
Leftfoot, great pic, I love seeing the possibilities!
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Thank you for the advice. I'm really really scared. I feel so guilty asking for so much help. I got a cane and walker but I'm still having a problem walking and not sure what to do. Exercise hasn't helped. My husband and I are so young and we have a toddler. I'm confused and not sure what to do. Someone please tell me I'll be fine soon. Its nice to see people well eventually but I really can't function alone anymore.0
