Brain Mets Sisters
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Hey, there, everyone! I've just spent the last few hours reading this whole thread! What a group of smart, brave, and wonderful women. I have been Stage 4 Her2+ for three years, with mets in my lungs. Then, yesterday, I found out I had 16 lesions in my brain, the largest of which is 16 mm. They want me to do WBT for 2 weeks, but are open to doing cyberknife on the largest. The doctor thinks that the brain mets are slow growing, and that whatever chemo that's been getting through, has kept it small and stable. I am, of course, terrified. I'm a writer and a professor, and my brain is what I've got. I've never been a big athlete or dancer, so this is affecting me on another level. I was wondering if any of you fabulous women had advice/opinions/experience about WBT vs. cyberknife, vs. anything else, in terms of efficacy, side effects, etc. I am teaching full time, and would like to keep doing so. Thank you! I would appreciate anything you might share with me.
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Lita and Mara thank you for sharing your experience. I am sorry i will write more another day, I just wrote a big paragraph and lost..I am very slow , get dizzy after being in the computer for awhile , keeping everyone in my thoughts. Hugs.
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I hate to see so many of us dealing with this, I know it’s scary and can feel like the end at first but many on this thread are doing well and outliving expectations. For those facing your first treatment, the different standard options break down like this.
Gamma Knife for 1-4 lesions less than 3cm
Cyber Knife for few but larger lesions
WBR for numerous or scattered lesions
Depending on the size and location of mets, a combination of treatments may be appropriate but these are the standard protocols and are very common. The descriptions above are guidelines, they can go “off the menu”, in some cases, it never hurts to ask. Also, if your neurologist and/or neuro rads onc leave you feeling hopeless, please get a second opinion.
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Chowdog,
The experience you described with the surgeon really PISSED ME OFF! I would not spend another minute with that man.
Personally, I try my best not to have ANY male doctors. There are, of course, some good ones, like the wonderful Opthamologist who first discovered my eye tumor, but there seem to be way too many pompous, assholes.
What I don't understand from your story is why they did not do a biopsy immediately to determine your estrogen receptor status. You were on Tamoxifen when you became metastatic, right? So they should switch your treatment as soon as possible.
Can you tell us where you are located? Perhaps someone on the thread knows some good alternatives for your care.
I also replied to your PM.
Big Hugs, Susan
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When used for brain mets, Cyberknife and Gamma Knife are exactly the same. The only difference is for Gamma Knife you have a frame fitted and Cyberknife a mask is used. 3cm is generally the largest a lesion can be to be treated by SRS. My wife had 11 treated in one sitting. Some people have had over 20 treated in a single sitting. It's not the amount of lesions it's the total tumor volume. As long as it is less then 20 Cubic cm, then SRS can be used.
My wife has had 19 lesions treated by Gamma knife over 3 sittings and they have all gone. There is only one tiny one showing. She had had no neurological effects, no hair loss, etc.
A tiny sub 3mm area showed up in her scan in January. She has another scan next week, if it has grown that will be treated by Gamma Knife.
Things are changing, the days of if you have over 4 lesions that you have to have wbrt are gone. If systemic disease is absent or controlled then in my opinion SRS is the way forward.
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Great info Freakzilla, thanks! And congrats on your wife’s successful treatment.
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I will be starting wbr Monday, my Dr felt it was the best way to move forward, mask was made today.
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to all the new ladies I am so sorry you have to join us but there are more options and better QOL now for those of us with brain mets than ever before - don’t lose hope! Don’t take the research too literally - generally using old data. And as far as I am concerned it is all so individual what treatment works and what doesn’t so keep yourself as healthy as you can. PM me with any questions I know how it feels to have your feet swept right out from under you.
Chowdog - what an ass the surgeon was! I think that attitude is stereotypical of surgeons - they make moment life and death decisions so they either are very humble and understand the enormity of their job or they feel like a g-d. You found the latter. I had a 2 cm tumor in my cerebellum and putting immense pressure on my spinal Cord so my side effects were all from hydrocephalus not the tumor. Hydrocephalus sucks - I was nauseous, had trouble balancing, and just couldn’t do much at all after 3 months - symptoms finally forcing me to a ct scan. Surgery immediately (a Sunday at 5:30am) so I imagine it was an immediate risk to my life. My surgeon was fantastic and since it is a one time thing I would definitely recommend a second opinion even if the hospital is a bit of a drive (my surgery was 2hrs away a time a large hospital but local onc). I had a ten day stay in the hospital and a drain due to the hydrocephalus so depending on the location of your tumor it may be more of a risk. FYI my experience
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Josgirl,
Thank you for your message. You know, he is no g-d, and arrogance is often one's worst enemy.
Susan,
I PMed with my location. Thank you so much for your support.
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Freakzilla,
I humbly disagree with your assessment of WBR. It's not that they can't treat 20+ tumors, it's that, if you have that many tumors, some might be missed by doing gamma knife. My RO, Penny Snead, who specializes in BC brain mets at UCSF, told me that, because I had 12+ brain tumors, it was highly likely that there are smaller ones they could not see. She said it was safest to wipe everything clean and then, if anything new popped up, she could zap it with gamma knife. My brain was completely clear for 3.5 years. A few months ago, 2 small (1mm and 3mm) tumors appeared in areas that had been treated so she zapped them with gamma knife.
Like many of these cancer treatment decisions, it's a matter of personal choice how much risk someone wants to take. I and others chose the safest route, given how many tumors we had, not the outdated route.
Sincerely, Susan
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I have to agree with Susan. WBR is not outdated. It is a valid treatment.
SRS would have been my first choice BUT since I have IBC, my doctor did not want to chance missing anything. Either treatment can offer better qol and survival. The main difference between them is recovery time. I have not observed any lasting effects from my WBR than some bald spots. I have a fun and pretty assortment of wigs for that.
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Susan,
If a tumour hasn't appeared when someone has Gamma Knife, the procedure can be repeated when it does, and constantly repeated as long as the lesion hasn't been treated before. I don't see the reason to treat parts of the brain like hippocampus if there is no need. Why subject someone to radiation if they don't need it. If someone has or had brian mets they should have regular Head Mri's, so if there is any new disease it can be picked up whilst it is small.
My wife has had Gamma Knife 3 times. The day after treatment each time she has been completely fine apart from pain where the frame was fitted, with no side effects. It takes one day, not 10 or 15 appointments and gives better results. It is a fact that brain mets respond better to srs then any type of radiation.
If a patient had Wbrt to treat say 5 lesions and then they developed leptomeningeal metastases, not many doctors would repeat wbrt, whereas if they had previously had wbrt, that can be used then.
In my experience Wbrt is offered due to cost in a lot of situations. When I read back through this thread as I have done many times, it shows that. Srs should be offered more.
We have seen some of the top neurosurgeons in the world. One of which was the first to report on the findings of Gamma Knife. Every one of them has agreed that SRS was the right call.
Each to there own.
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This info has been so helpful. Thank you to Freakzilla and everyone, for your generous input. My radiation oncologist originally recommended WBT because I have 16 small lesions, the largest of which is 16 mm. No symptoms except a numbness in my left pinky. I asked about cyberknife and she began to change her mind - she thinks the tumors are slow-growing, and that some of the chemo I've been on has seeped in and helped retard them - I am currently on Haloven for lung mets, and there is evidence to suggest that it does pass the blood brain barrier. Studies are being done in this now. So, I've decided to cyberknife the 16 mm tumor, and get a brain MRI in a month to see how the little guys are doing. I may have to do WBT down the road, but feel much better about doing what is minimally invasive for now, and keeping an eye on the rest. I know there is no easy path forward, and certainly no right answers, but the important thing is to feel good about the next step, and to have confidence in your doctors. I am grateful for the care I get here, and for doctors who listen to my questions, and are secure enough in their expertise to sometimes change their minds. Thank you again, and I'll let you know how it goes. My doctor is also checking for clinical trials on HER2+ brain mets in NC, and doing a test to see if I have PDL-1, which would open up exciting immunotherapy options. Cross your fingers for me!
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Question starting wbr Monday, will I end up with sunburn on my head? What other symptoms did you have from it? Any suggestions?
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Not everyone does. I had no sunburn but I did use a non greasy moisturizer on my ears and forehead. Hair will come out after treatment is done, approx 2 weeks from first treatment. I moisturized entire head once bald. Some of the skin on my head turned a slightly darker shade and became dry. Post WBR you can use whatever moisturizer you please. Your skin will be dry for a while so keep it moisturized.
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Symptoms during my own WBR were mostly fatigue, lack of appetite related. I also am sensitive to steroids but once I finished, I was mostly tired.
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I've been on Taxol so already fairly bald, the dexamethason seems to be easing symptoms I wasn't thinking much of. Just ready to get started and get done a day back on chemo
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Keetmom,
I never had any sunburn spots and haven't heard of anyone having that problem. I did lose my hair (loved being bald!) but don't have any bald spots now. Like Mara, I experienced loss of appetite and fatigue. I didn't take any steroids. If I had, I probably wouldn't have experienced these things. Just didn't want to have the steroid weaning side effects. Hoping you get through the treatments without too much discomfort. Keep us posted on how you are doing! PM me if you want to "talk".
Hugs, Susan
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Freakzilla,
Don't appreciate the Manspeak tone of your posts. I would like to remind you that at the top of this thread it states: "Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis." There have been some wonderful mothers, daughters and husbands that have been welcomed here despite this rule but I think we would all appreciate it if you would tone down your know-it-all attitude.
For example, WBR does not mean that they literally radiate your whole brain. The treatment boundaries are very precise. My hippocampus was not radiated. She was also careful not to radiate the portion just near the top of my scalp so that any hair thinning would not be noticeable. She radiated a tumor in my right eye at the same time as the rest of my brain which required very precise mapping. Furthermore, saying that it's a cost issue doesn't make sense. My WBR treatments were much more expensive than my gamma knife treatment.
Like I said earlier, we all weigh out the risks and benefits when making decisions about our own treatments. Please don't insult our intelligence or our pocketbooks.
Sincerely, Susan
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Things tasted metallic to me for a long time.
I'm still on very low dose steroids because of dizziness, blurred vision, spots, etc. Wbr didn’t shrink my mets down as much as they hoped - more than 20.
And because mine are so big, over 4 cm, and so deep, there's only so much they can do. CBD tincture helps a lot.
I'm on Gemzar now. Hair still hasn't grown back, but that's ok. Just think how much I'm saving on hair care products and trips to the hair salon
L
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I am a new visitor to this topic but have been with this forum since 2013. Today I am forced to join this topic since my wife's mets have moved to her brain now with lepto involvement. She already had cancer in the bones and liver. Some doctors are saying she has now a few weeks to max a couple of months to live. I am yet talk to her onco. I do not know what to do and asking for any advice about treatment options with lepto and multiple organ involvements. Not in the right frame of mind to write a lot of stuff.
I guess god did not wish to let my wife live
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You have options from whole brain radiation to cyber and gamma knife. I have 20+, and I'm still here 6 mos after rads.
Incidentally, they told me I'd have weeks to months if I did NOTHING.
If you're not happy with what they told you, get a 2nd opinion.
I also have bone and organ mets.
L
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Letmywifelive, I do not have any experience specific to lepto mets but hopefully some others can comment on their knowledge and treatment options.
Sorry about the progression, I know it must feel very scary at this point.
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She has lepto which is why the doctors are giving this grim prediction. Not sure if there are any ways out of it
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letmywife, I just want to say I am very sorry to hear this about your wife. They may offer WBR, you can also see about any chemo that may cross the BBB.
I will keep you both in my thoughts.
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Susan, I want to say thankyou for setting me straight about cost of WBR versus gamma knife. I always thought it was more expensive, but once I thought about what you said, it makes sense WBR would be pricier.
Thanks again.
Freakzilla, I am still happy to hear how well your wife is doing. I see people doing well with decent qol as a big middle finger to stupid cancer.
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letmywifelive,
LM used to be a death sentence but now, with intrathecal treatments, it no longer is. There is a specific LM thread here but I'm not sure if it is active.
If your doctors are giving you nothing but a grim prediction, I would look for another doctor.
Wishing you and your wife the best.
Hugs, Susan
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I had wbr a year ago. Still have a couple of bald spots. My hearing was really bad for a few months but then came back but it’s bad again. Like when you fly and your ears are plugged. Everything is kind of muffled. Another really odd symptom I had was I hated the smell of toast! Weird. My husband had to plug the toaster in the stove and put the fan on if I was in the kitchen.
My last scan everything was stable - bones, lungs, etc -except a couple spots in my brain were smaller And some had grown so my onc took me off kadcyla and I’m now on tykerb and capacitine. Fingers crossed that they’ll work.
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There are still things they can do. It sounds like they're giving up on her. Is she having symptoms?
I'm still having dizziness, blind spots, headaches, and aural noises, but I'm still here. Still on low dose steroids and cbd's.
Hopefully your onco has a plan. Please keep,us posted.
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Day 2 done blows me away that the little amount of time on table does anything takes me longer to get there then I am there, and I live close. Feeling pretty good on a steroid high, didn't sleep much last night except through the bachlor... my mood is getting back to I can deal with this.
Amie
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