Brain Mets Sisters
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don’t lose hope. 2 tumors leaves many options. I had 2 tumors treated 5 years ago and those have never come back. I just had 30 small ones treated with radiation in May. I’m still here.
I agree don’t read the outdated literature. Things have changed.
I will think of you both and hope for the best.
We are here for you
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Thank you Leftfootforward, it’s reassuring to hear your experience , and everyone else’s. Also my apologies I noticed afterwards that this forum is not for family members, but I do appreciate for your ladies kindness in responding to me, and I have to say everyone’s strength here has been an inspiration for me to be strong and positive for my mom.0 -
holyhope- you are welcome to post here and to ask questions. You are apart of this family no one wants to be apart of. It’s great that you are reaching our for information. Everyone here has a lot of experience and helpful information.
Take care
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Holyhope, I'm sorry your worry for your mom has led you here. I agree with everyone else - stay off Google. Read back through this thread. There's tons of great info/experiences that is a lot more current than Google. I had a single tumor treated with a craniotomy and radiation to the surgical bed in March 2015. I'm still here and doing well.
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Holyhope,
I was Dx'd with more than 20 brain tumors last August. I had Whole Brain Radiation because the two biggest ones (over 4 cm) were too deep within the cerebellum for surgery. My RO put me on Namenda/Memantine for six months, which is an Alzheimer's med to help stave off cognitive dysfunction and impairment.
Did your mom have any obvious symptoms of brain mets? I had eye auras and flashes, whooshing sounds in my ears, MAJOR dizziness, and also had bowel incontinence.
Ten months later, I'm doing as well as can be expected. It's a little hard for me to come up with people's names, and the right word (that could be "aging," too, ha ha), and I still have a little bit of eye aura stuff, and once in a while the ear whooshing. Dizziness is still a problem, so I have to be careful and use a cane, but as I've said before, any day that I can wake up and STILL see, walk across the floor, and string two semi-coherent sentences together is a good day
Brain tumors can be scary, but there are so many women here who are doing quite well. Don't give up hope. Brain mets won't usually do you in...it's when the mets metastasize to the soft tissue organs (liver, kidneys, pancreas, etc.) or into the bone marrow that you really have to worry. Unfortunately, I have mets EVERYWHERE (bones, spine, soft tissue organs, and they found "bone marrow" abnormalities on my last scan), but I prefer to remain optimistic. My four brothers didn't expect me to be here after Christmas 2017, but I'm still here.
Stay strong,
Lita
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Goodie- thank you I can’t express ,how your word put me to ease a little , in fact all the ladies here , have so I can’t express how much I appreciate that.
Lita- yes the major symptom she has has was nausea and vomiting, dizziness and inbalance came afterwards, her vision was a subtle symptom , she said she would see “fours “ but major symptom was nausea and vomiting, none of the anti nausea medication helped , I can’t tell you how bad she was that we were in and out of the hospital for the past month , they would do all the tests and everything came back negative , and when the symptoms started her oncologist was on vacation , when he came back he ordered an mri and we received the results , that there are 2 masses. She is on dexamethasone, that has helped with the vomiting , and her vision issues. But once again biggest symptom was nausea and vomiting , so not sure if anyone here experienced those symptoms as well ...
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Holyhope, I understand your worry for your mom. My mom has had brain mets since Dec. 2016. She had numerous spots and has had whole brain radiation twice. Her symptoms were mainly balance and leaning to the left when doing anything as well as dropping things out of her left hand. I just want to offer my support as well. These ladies are great and I have learned so much from them. If you get a chance, go back and read through the thread. It was a huge help for me, especially being the health advocate for my mom. I am able to ask questions about different treatment options that we may have never known about otherwise. Wishing you and your mom the best.
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Tre- it’s comforting to here your mom is doing well, if you don’t mind me asking is she able to drive ? Or walk on her own after having brain mets?
Lita- I pray for you and hope for you to be here for many Christmases for many years. 😊0 -
Holyhope, she is not able to drive due to seizures in the past. The doctor said at least a year since her last and then we will revisit, but her reflexes just aren't what they used to be, so I don't think it will ever be a good idea again. She can walk fine. Some days she's a little unsteady and her short term memory isn't great due to the wbrt the second time. She finished that in February. She has had a scan since just to check things, but the telling one will be in August. She is on Xeloda now for her liver and hoping it is also helping her brain.
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HolyHope,
My sister is 36 with about 9 brain mets remaining (and growing) following WBRT in November. She is NED neck down. Three weeks ago she was put on Kadcyla (today was her second infusion). A couple of days after the first infusion she started vomiting and was unable to stand or walk because of extreme dizziness. She also has had hand numbness. Not sure if it's the tumor or the medication, but they put her on 2mg dexamethasone. It helped with the vomiting and dizziness tremendously (though she doesn't feel comfortable enough to drive). It does give her some "roid rage" though.
Good luck!
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AllyBee,
Now that you are metastatic, I’m surprised they would want to remove your lymph node. Your treatments should be systemic and will hopefully clear up your lymph node.
Hugs, Susan
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Hi Susan,
I think you're right, it was the neurosurgeons who mentioned the surgery for my lymph node. Since coming home I get the feeling from my doctors here that they won't remove the lymph node. I have an appointment next week to discuss chemo, so will find out for sure then.
I think I'd rather not remove it so at least I'll have something to gauge if chemo is effective.
😊
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So most of you know I had a seizure a month ago, so no driving for me. I've been driving for 32 years and suddenly I can't, I'm getting stuff done but how have others worked through this.
Only good thing is my DD car is at end of life and so she can drive mine, it's paid for and she just got out of college so isn't ready for a new car yet.
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AllyBee,
Our lymph nodes are so precious. Western medicine doesn't seem to understand a lot about the lymphatic system but it is extremely important to our overall health, particularly when we have cancer. When my Chinese medicine doctor works out the blockages in my "energy channels", I'm sure its just his way of talking about the lymphatic system, which plays a major role in our immunity system. I had a friend who refused to have any of her lymph nodes removed and she lived more than 20 years metastatic.
Hugs, Susan
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I haven't had any lymph nodes removed either.
Of course, when you're Dx'd Stage IV de novo, they don't usually lop your boobs off. The horse has already galloped out of the barn, so what good would surgery do? Just delay essential systemic treatment while you heal from the surgery.
L
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I had my first visit with RO after my gamma knife treatment in s May. It was interesting.
He said I was 4 spots short of excellent. The great news is everything they treated appears to be gone. Woo hoo. That’s 30 spots.
The less than excellent is I have 4 spots on this MRI. Looking at them he says 3 of them are questionable as Cancer- they might just be artifact. The last one however was there when looking at my scans in Zmay it wasn’t treated as it really could have been an artifact at that time. It is also near my spinal cord in a very tight space in the cerebellum.
After much discussion we decided to do more treatment at this time. It is mostly because we know we have an insurance battle to come and that will probably take the amount of time we would have watched the spots for anyway. It might be gamma knife again or it could be one day if cyber knife. I am going to ask for gamma knife so if anything new shoes up they can test it. Cyber knife is limited in hue many lesions it can treat at one time.
I am not happy that it appears something grew in my head on my current treatment. However it is tiny and found have been there before so maybe this treatment is keeping me stable. I don’t know.
So I’m feeling s little down. Running out of treatment ootions ifvtgese buggers keep growing in my head.,
I have s good team so envision another round of gamma knife in August-September.
It never ends.
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Sounds like a good plan leftfootforward. I have my gamma follow up MRI tomorrow, hoping I had some disappear too.
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I'm sorry you are feeling frustrated, Leftfoot. How long does your onc want to wait and see if the spots grow before treatment? I hate this cancer waiting game. I'm very glad to hear that 30 spots were treated successfully, though. Thinking of you!
Good luck at your follow-up MRI illimae!
My brain MRI is next Monday. I'm anxious to see if what they possibly saw in March was scar tissue or new growth in the tumor bed. I'm trying to be hopeful but also planning for the worst. Next week is also my annual full body PET. Lots of scanaxiety going on here.
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Good luck to all undergoing scans.
LFF, hoping the meds keep you stable as well.
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Has anyone seen or heard from Agnes?? Kinda worried.....
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Some nice news for brain metsers
https://academic.oup.com/annonc/article/27/suppl_6/324O/2799063?searchresult=1
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Bigpeaches, no recent posts from agness but she logged in about a week 1/2 ago according to her profile. Hopefully all is well.
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Oh and thanks for the well wishes. Brain MRI results are shrinking and nothing new, yay 😀
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So glad to hear about the good results everyone!
Also Zar didn't check in. Thinking of you.
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I’m FB friends with agness/Ann and she seems to be getting better all the time.
Over the winter, I had major progression in the parietal lobe bed and minor progression in the occipital lobe bed. I also had a tiny new lesion pop up. I had the new lesion cyberknifed and began a trial with the new antibody drug conjugate DS8201a. Last brain scan mid July showed the cyberknifed lesion gone, the occipital lobe lesion almost gone and the parietal lobe lesion less than half the size it was in Feb. so it seems the drug is crossing the BBB even though it’s not a small molecule!!
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Badatusernames, that’s for the update on agness, that’s good news and congratulations on your own successful trail results. Please keep us posted 😀
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hello everyone. It's been 3 weeks since my last wbr treatment and still no change. Pretty difficult to stay hopeful that my mind/vision/balance will return. Also my tail bone ache requires me to take Advil and tylenol all day long. Hard in the morning to wait for relief. I think it may be the faslodex injections or maybe that im sitting/laying around all day due to vertigo. Just putting in my time 😰
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Hi living,
So sorry to hear you are having so many bad side effects. For me, the side effects, particularly fatigue, peaked about a month after treatment was over. I've heard that's pretty typical. So you may just be in that low time. I hope you will feel better soon.
I hope your doctor can help you with the vertigo. Vertigo is usually an inner ear problem. I had it and found some exercises that got rid of it. Basically involves moving your head around because it is often caused by loose particles in your inner ear chamber.
When you're up for it, exercise definitely helps recovery.
Hugs, Susan
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Bad_At_Usernames,
Thanks for sharing about your trial. Looks like it's only for HER2+?
My MO told me about another trial for NKTR-102 that failed in general but seems to be working for brain mets: NKTR-102 Trial
Hugs, Susan
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living, I didn’t have WBR but did have gamma knife twice and found little change to the lesions in 4-5 weeks but much better results at the 3 month MRI, perhaps more time is needed but I do hope you begin feeling better very soon.
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