Brain Mets Sisters
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Illimae,
not really very dizzy will it go away with treatment I just did 9!of 14
Paula
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Paula, darn it! I was hoping you'd find some symptom relief by now, hopefully improvement is coming, even if it's slow. I'm throwing some good vibes out into the universe for you and all us brainy girls.
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Page, I felt pretty much normal after my own craniotomy and slightly tired when I weaned off the steroids. I was very physically active so this may have assisted my recovery from the surgery.
Paula, I am sorry to hear that they have not been able to relieve the dizziness for you. Normally a bump upwards in the steroids would offer relief. I hope it eases some once WBR is over. Thinking of you.
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Mara
That’s great you felt normal nearly immediately. I am 6 wks post, my energy is lower then normal probably since I’m not taking steroids or any meds any longer. Before surgery I was doing HIIT classes after work 3 hrs a week and hot Pilates for 2hrs weekly, and I’m not back to that in fear of over doing it so for now I’m still walking the dogs and a HIIT class here and there... want to get back to my normal active, fitself thinking around the 3 month mark?! Not too sure.
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Pagej, I would be surprised if it took much longer than 3 months to recover given your level of exercise. Moving is one of the best things you can do.You will find your activity levels increasing before you know it.
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I’d Be surprised and saddened as well, my necrotic tumor was deep in brain folded in between temporal and frontal lobe bedded next to my insula so I think he was in there pretty far digging around... scraping out necrosis. it has taking its toll on me more then I imagined it would given everyone else’s experience with craniotomys... I had so much edema that I think it’s taking time for my brain to return to normal. Trying my best to focus on health and get back to normal in a few weeks when I return to work at the 8 wk mark.
Mentally I feel normal! Except more anxiety than usual :
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Found out on Thursday that I it looks like I have some small progression in my brain. 1mm new tumor and a 1mm tumor that apparently showed up in January of this year (was never mentioned in previous radiology reports) that is now 3mm. Waiting to hear back from my Rad Onc. Anyone else experience this kind of small progression after treatment?
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Hi Susan,
I'm not a neuro oncologist, but I would be surprised if it was disease and it had only grown 2mm in 9 or 10 months. Is it in the area of where the disease was before?
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Susan, I am dealing with almost the same issue right now. Two small lesions 6mm and the other less than 2 6mm. New lesions are located where my original met was located. We are watching them since one is growing slowly and we will zap them. Is considered local recurrence. I also had WBR and the little bit of original tumour has shrunk.
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I've been at IIIC for a couple of years but I want to introduce myself to you all. I'm new to brain mets and not officially diagnosed.
I'm back to this forum because my cancer has reached a point where I will have to deal with the doctors again and I hate dealing with the docs and their various staff members. I'm dropping by to post/vent a little and study up on your generous, latest and greatest posts.
I try to live my life and treat the cancer as an every day annoyance. I think it was first diagnosed in Spring 2014 (lumpectomy). In Spring 2016 I had BMX. It's getting to be "about that time" again and this time, the cancer is literally a pain in the neck. The lump is in the lymph nodes of my neck and every day it feels like I slept wrong and woke up with this ache.
The vent? After 29 lymph nodes were removed from under my arm (in 2016), I asked the surgeon, "Now that the lymph nodes are gone, what's to stop the cancer from metastasizing?" She shrugged her shoulders and her face made one of those "I don't know" sort of looks. I haven't seen her since.
Just my luck the tricky little disease has headed straight for my brain and the nodes are doing their job by stopping it at my neck. They've done all they can and it's time to bring in the docs. I truly was hoping the disease would spread South and my prognosis would have been correct at 2014 + 10 years. Looks as if it will be closer to 2014 + 6. It's ok, I'm not afraid to die.
I know this in many ways. One is because in the surgeon's waiting room pre-BMX, I met a woman who was completely freaked out by the thought that the doc wanted to operate on her neck. I'm not freaked out. I accepted, that day, that the same might happen to me in time. It's time.
Just let me thank you all for coming here and posting your insights, treatments, reactions, hopes and fears. This is the most truly supportive community I've found.
See ya around the boards,
cb
PS I'm anti-chemo.
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HI Mara,
How long have the lesions been there? Are they dural mets? My wife has IT Herceptin because a lot of her mets were dural.
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Freakzilla, I'm in the process to get it herceptin, any additional info you can share? May be you posted already in another thread? Please let me know...
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Gramen, drop me a message with any questions you have. For what reason are you looking at IT Herceptin? LM or Dural?
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illime,
So tired ahead my 10treatment out of 14. Just so tired can't get off the couch.
Paula
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Freakzilla, the mets are in the dhural layer. The RO thinks we can zap them. I did ask if IT herceptin could be done but they are looking at gamma knife if they grow. I will have another MRI end of November to see since I am asymptomatic.
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Sorry to hear that Paula
Is the dizziness any better, at least? Hopefully, you will rebound quickly once rads are done.0 -
I'm posting this for my sister. You can see her diagnosis history below. She's been having clean scans for most of the year, as recently as 6 weeks ago, but about a week or two ago began experiencing double vision and imbalance. A brain scan found numerous tumors. Apparently until now her brain had not been scanned (not sure if this is normal). She was told to either try an oral chemo and hospice or to go the whole brain radiation route -- though it sounds like the prognosis is bleak either way (If I understand correctly, she was told that if WBRT was successful, she'd be looking at 6-12 months). She would like to know what others' experience with WBRT has been. She is 35 with 3 young sons.
Thank you.
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DizzyDee, my heart goes out to you and your sister. As the mom of a young daughter myself this diagnosis is no fun. But there are options. If she'd like to talk PM me her number and I will give her a call. This diagnosis is isolating and as a mom with young childrenvery difficult. Xeloda I assume is the oral chemo and whole brain radiation are both good options and have resolved/stabilized brain mets for many on this site whom I am sure will chime in. I had surgery and targeted radiation.
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DizzyDee, brain MRI's typically would be done during the initial staging if she had positive nodes but are not routine unless you have already been diagnosed with brain mets or are having symptoms, although the HER2 part of her cancer comes with an increased risk.
1. I would strongly consider the oral chemo or WBR, many do pretty well on that, I guess she'd have to weigh the recommendation of the oncologist and neuro-oncologist to make the best decision.
2. I wouldn't put too much thought into that 6-12 month prognosis, no one knows.
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Finally able to talk to my Rad Onc this afternoon. The two brain tumors (3mm next to the right side of my cerebellum, 1mm left frontal cortex) appear to be where I previously had tumors. So I guess they are technically recurrences. Even though they are small, she wants to zap them with gamma knife. They will also do a very detailed brain MRI on the day of the procedure so other very small tumors may show up. She also said that they have a new gamma knife machine so the treatments are quicker. Didn't sound too bad.
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Hi Susan, the Gamma Knife does not sound too bad. Only thing that looks uncomfortable is the cage they have to screw to our head for proper positioning. I will be undergoing the same thing soon. We are checking my MRI at end of November to see if my two are bigger. At least we won't be bald this time.
At least it is only one day AND the treatment is less grueling to recover from as WBR was. We also won't have to lose our hair.
I know this is weird, but I somehow felt better that the recurrence was in the same spot as my original tumour.
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Dizzy Dee, WBR has treated quite a few of us. I will draw from my own experience to try to set some possible expectations.
When I was undergoing WBR, I was put on steroids beforehand to minimize swelling and inflammation. I did not have any pain during the procedure. I did have some SE related to steroids ie weight gain, lack of sleep etc BUT it went away soon after. I lost all of my hair which is slow to grow back due to Herceptin and Perjeta, but is coming back. She will mostly be tired afterword, that does last a while. If she is active, morning is usually the best time to fit in a walk, she should rest when needed and eat as much protein as she can for energy. It is a doable treatment. Short term memory may initially affected, but I found mine has actually improved over a year out. She should be similar to how she was going in. WBR gets a bad rap BUT it has proven benenficial to quite a few of us. Once I was over the hump of the fatigue which peaked for me around two months after, recovery and energy will return shortly after. She may also notice some tinnitus but I found deep breathing usually made that go away now. I have some now but is WAY less than when I first finished WBR. Good luck to you and your mom.
For myself, I feel better than I have in almost 3 years of cancer and no lIngering side effects.
Almost forgot, if memory is a worry, there is an Alzheimer's drug they use to mitigate some of the risk of memory loss called Namenda which according to some who've had it, does not give a lot of SE.
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Susan and Mara, I'm sorry to hear that you have had a reoccurence. The gammaknife is relatively simple. I thought it took longer for them to screw the halo in than it did to do the radiation. I was a little tired that day, but that's most likely because I had slept so poorly the night before. Nerves!! I also had the high-def MRI before the gammaknife to make sure there were no more bugger hiding anywhere. I found that to be very reassuring. Best of luck!
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Thank you Goodie!
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Ladies,
I have my 3 month scan coming tomorrow and am more anxious than usual. I have been experiencing all these little things none consistent and certainly could be just my heightened anxiety but I am nervous for tomorrow. Mostly just tired and a little fuzzy. I feel a bit off balance but it's all in my head nothing translating to my brain body connection - I just feel that way. I have little zings but could be the nerves regenerating from my surgery a year ago. I hope it is just anxiety. I am not a normally anxious person but a friend thru these boards (we all were in the same Chemo 2013 group) passed away very quickly with LM mets at the very very end - I think she was so sick by that point that they didnt even have time to treat. I just feel scared. I would appreciate any good thoughts you can send my way tomorrow. Keeping you all in my thoights
josee
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I am sending you all of the good thoughts I have and am hopeful that some of what you are experiencing are nerves. Good luck on your upcoming scans.
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Josie sending you good vibes. Hope you have a good night,
Mara, so sorry - Susanif gammaknife is no picninc but it's suppose to be very precise. Illimae just had it yes? Dani had it,
LisaY -PageJ how are you doing? Paula, hope you are coming around.
Lita did it get any better? What are you doing these days?
Today was the last day of rads, it turns out it was 10days then a break of a week then Dani starts the rads to the rest of her body, RO did not want to do it together. She is drained. And has a very bad sore throat,very painful no food goes down, she lost weight again, weight that she cannot afford to loose.
They targeted the inferolateral periorbital space, disease involving the right lacrimal gland tracking through foramen ovale in the base of skull - this is causing jaw numbness. There is also a nodule in the Hypothalamus ( i am not sure they touch that? Hmmmgotta find out), multiple extra-dural lesions.
The y90 for the liver was done on the 3rd, it was a very tough going after getting home, she was vomiting a/t she ate and extreme fatigue. IR said that the vomiting, is the big bang of the radiation, let's hope so. She cannot be next to the kids for 3 days post Y90. so that's another tough step. They are already preparing for the 2nd lobe for the end of November. But also with rads in between, it's gonna be very very hard.
Hoping tomorrow is an easier day for all
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Goodie, Hearing about your experience is very reassuring.
Mara, Thanks for your advice. Remarkable how we seem to be on the same track.
momallthetime, So sorry to hear what Dani is going through. My friend had Y90 and said it was the most painful thing she had ever done. On the positive side, it cleared up the side she embolized. She died before she could do the second side.
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Thinking of you, Josgirl, and hoping for clean scans.
Momall- continued prayers for Dani, and you.
Much love to the rest. You all are never far from my thoughts.
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thank you all!! My rockstar nurse navigator stayed late at work to get the final report and call me. She knew how stressed I was. It was clear. Whew! I was so anxious for this one - I have been having some low grade headaches and such but likely the weather and lots of work stress. Thank you for your thoughts.
Momallthetime - you and Dani are in my thoughts and as a mom with a young daughter I can imagine how hard this is for both of you and the need she has to 'act well' in their presence as much as possible. I'm hoping for the best outcome of all these treatments and some resolution of her symptoms so she can enjoy her family.
Susan and Mara hope good resolution for you both. I am sure your active lifestyles will pay dividends for your recovery.
I think of us all daily
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