Brain Mets Sisters
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Hello, I am wondering if anyone has experienced vision loss as a result of brain mets? Aly has not been able to see for two days now and we're trying to figure out if will be permanent. Any advice is highly appreciated!
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Rach I have vision loss on my left side plus spots of loss on the right. I also see what I call a color wheel and and area of distortion along the edge of what I can/can’t see. I have a hard time reading (more than a few feet is completely blurry & near is difficult). There is an area that appeared after craniotomy, but not at the surgery sight although still in the occipital lobe, for a single met & during an Immunotherapy trial in the lining of my brain. Doctors don’t know if it’s cancer in the dura or swelling. We have tried steroids & Avastin infusions to get rid of the ‘swelling’ but no avail. Right now they are considering it permanent ‘post surgical changes’ and I’m supposed to go see a neuro ophthalmologist.
Does she have total vision loss or is it like mine? Does she have brain mets or have they been removed or kill off with rads? Any recent craniotomy?
It’s hard to say, even from your MO probably, whether it’s permanent or not without a scan and knowing the potential cause (swelling. Tumor, post-surgery, chemo SE) I’ll say most likely nothing will be guaranteed to come back or be permanent without tests. With my craniotomy there was a chance of some or all vision loss permanent or temporary, other brain mets I have could cause more symptoms permanent or temporary. I know you are looking for a solid answer, but the best advice I personally have is to let your MO know and if it is a random & sudden onset of blindness I’d go to the ER to make sure nothing critical is happening. I’ll be praying this is just a temporary reversible symptom. So sorry she is going through this. I know I was very upset about my vision changes, but have learned to adapt and it doesn’t bother me as much. I’m not allowed to drive the shopping cart at the store though...too many hits and near misses with people and things. I also broke my favorite Starbucks cup and have walked into a few poles, but those are small to me in the grand scheme.0 -
yes...my vision is getting worse evry day. Big black dots in vision, blurry, itchy, painful
Its awful. Cant read much any more. Seeing eye doc Mon to see how much time i have b4 i lose evrything
Rehersing for VSED...volintady stopping of eating and drinking.
This is NO LIFE anymore. Exhausted
I want to go home. Having great difficulty walking now 2
L
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Thanks so much for weighing in!
@Parrynd1: Aly's vision is completely gone. This happened after several seizures and her first dose of Methotrexate delivered after a LP. She was diagnosed with the brain mets on January 18 and has not been treated with WBR or craniotomy because her most trusted doctor believes the most promising option is an immunotherapy trial in Boston. The Methotrexate was delivered by another hospital and frankly I think it was a mistake because it was really hard on her. She has an appointment in Boston on February 11 so we're trying to get her stable enough to travel. The vision loss is the scariest aspect of that right now for sure.
@Lita57: Sending you virtual hugs. From being with Aly, I am witnessing how scary vision loss is and feel for you.
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Big hugs to you Lita. If there was something I could do or say that would help I would, but just know if you ever need a virtual hug I have as many as you need.
Rach it sounds like the seizures are the culprit, but I’m no doctor. I would say a scan would be able to tell you more info like if there is swelling or just damage, however extensive, and if it looks like it could get better. From my experience I’m always told time will tell. There’s medicine, like Kepra, that I’ve been on to help prevent seizures and bleeding, steroids can help. Steroids are miserable to be on in my opinion, but worth it if they work. I would still think radiation is important. Immunotherapy is fantastic, but it only works for a small percentage of people. It’s a huge problem many trials are trying to work on right now. My MO told me it only works in 10%, however, I’ve read #’s saying 15% of people. I was on an Immunotherapy trial and it was working, but the SE’s caused my MO to pull me from the study. The tumors that were stable on the trial are still stable today while the new ones are not. If you want my opinion radiation is more guaranteed than Immunotherapy. Why can’t she do rads then immuno? Some trials are picky about wanting untouched tumors for their data, but you guys have to do what’s right for you and not as a data subject. Of course this is all my opinion and I’m not a medical professional. If she were more stable I’d say jump on the Immunotherapy, but I think rads give more immediate results. It’s a tough position to be in and I’m sure her MO knows her case best. I’d ask if doing radiation would exclude her from future trials or just potentially this one. That said the doctors aren’t always right...it’s a practice of medicine and not a guaranteed thing. I wish I could help. Maybe some other ladies on her can help with more of their experience as well. Hugs to you and Aly...wishing you guys the best for whatever you decide and hope to God it works!0 -
Saw this today and thought it was interesting.
https://pratt.duke.edu/about/news/tumor-monorail-breakthrough
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Lita, I just hate to see you struggle, you’ve been through quite enough already. Sending my best to you and family and Sophia 🙂
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Parrynd1,
That's quite a find! Wish it would have been approved for human trials in late 2018. This, and other advancements, really make me believe the talk that cancer will become a chronic disease and not a terminal disease.
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Me too and it makes me wonder how they can use this in other parts of the body to address those tumors. Good to keep an eye out for this one. Last declaredbreakthrough from the FDA I think was chemotherapy (I didn’t fact check myself on this), but I do know it doesn’t happen often.
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around Christmas. How are u going with it
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so sorry to hear this sending gentle prayers and love
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Hi ladies, I’m new to this thread and not sure where to start. I see the letters LM and would like to confirm that is leptomeningeal carcinamatosis. Big scary words. I was recently diagnosed with that covering a good portion of my brain and my entire spinal column. Looking for people with experiences, advice, treatment info, anything. All of a sudden I feel like I’m floating alone out here. I’ve had 10 rads of WBR. And I’m now in a holding pattern, feeling like I’m missing something.
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Hi ladies, I’m new to this thread and not sure where to start. I see the letters LM and would like to confirm that is leptomeningeal carcinamatosis. Big scary words. I was recently diagnosed with that covering a good portion of my brain and my entire spinal column. Looking for people with experiences, advice, treatment info, anything. All of a sudden I feel like I’m floating alone out here. I’ve had 10 rads of WBR. And I’m now in a holding pattern, feeling like I’m missing something.
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Sweetside, read up on Agness/Ann's posts. You may have to scroll back a while. She has dealt with LM extensively. She knows a lot about it and has had a lot of treatments for it.
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Nancy art craft, I also had to have a mask made for for my neck Mets. Wore the thing for what seemed forever sessions. I thought I would not get through just the making of the mask. I just closed my eyes and breathed slowly. I also just thought about anything else but being there. It also helped the the two women who made the mask were great and explained the entire procedure. You really can get through it. I kept my mask after my last treatment to remind me how strong we are.
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sweetside, yes LM is Lepto Mets, we are talking about the same thing just abbreviated.
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I also kept my mask thinking I may need it in the future. I just laid there and relaxed and tried to take a nap, lol or pretend that I was at a spa getting a facial. That’s a much better scene than rads
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seeetside I was diagnosed with LM covering a very large proportion of my brain lining and spinal fluid It started with a Numb Chin . I was so shocked and lost the plot for a while. I have had 5 WBR sessions and alas lost my hair after 12 days of treatment finishing , I don't know what the future holds but all I can do is live each day xx
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Parrynd1 and Lita,
Have you had a thorough eye exam? My vision problem was because of an eye tumor, not my brain function. My Opthamologist is the one who figured out I had mets when he found an eye tumor in my eye. You need a very experienced Opthamologist because the first guy who looked in my eye said he didn't see anything. Eye tumors are not uncommon for people with brain mets because they are physically so close. Since my mets diagnosis, I see an Ocular Oncologist who does a battery of photos and ultrasounds of both my eyes. Radiation got rid of the eye tumor (done at the same time as my WBR) and so far (knock on wood), nothing has come back in my eye though the tumor caused some permanent retinal damage.
Hugs, Susan
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Funny you mention that as I just got a referral to see an Neuro Opthamologist to map out the vision loss. No one has talked about it being from potential mets since I have this area of ‘swelling’ in my dura right where my vision is located and my Dr said it corresponds with the side I have vision loss on. That said better safe than sorry. Thanks for the recommendation I’ll be sure to bring it up with my appointment. Is there anything they can do for an eye tumor though? Sometimes I feel like more mets doesn’t even matter since all my dr’s say chemo is the answer (except brain mets)
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Had my eye exam yesterday. Bleeding behind the right eye ball has resolved itself, but peripheral vision (because of other brain tumors) is worse, and so is dry eye and blurring.
He's having me try new eye drops so we'll see how that goes.
L
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Parrynd1,
I had three treatments to my eye:
1) Chemo injected straight into my eyeball. Nasty. My eyeball was the size of a golf ball and completely red.
2) Laser zaps to the blood vessels to the eye tumor. Not a big deal. No side effect.
3) Radiation at the same time as my WBR. No problems or side effects.
Took a little over a year to kill it.
Hugs, Susan
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Thanks Susan. It’s comforting to know there are options at least...no matter how unpleasant! You are such a strong lady.
Looks like they will do 1 round of SRS to the 2 new mets. I worry it’s not enough, but they said more its necessarily better. For anyone who has had targeted beam therapy - do they do just 1 session for smaller tumors?
Lita I’m praying you get some relief
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I am reading along and want to give U all gentle hugs, Had a really tough week sorting out insurance super POA and I have started having paniic attacks . I am worried about the cancer in my spinal fluid and brain lining and am finding it hard to get out of bed
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Delvzy,
This stuff is scary. We are here for you.
Big hugs, Susan
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Hugs Delvzy
It is a lot to handle and I can’t say it gets easier. I’m not in your exact spot, but I e gone on a learning journey in a way and found a few different methods to bring me down when my mind goes into panic and I’m thinking of a thousand things at once. My own version of meditation and aroma therapy helped a lot and I thought I was silly for trying them. Talking here and venting helps me as well. I hope things get at least a little better soon
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Parry, I only had 1 SRS treatment to the tumor bed to kill the tiny bit of remaining tumor after my craniotomy. I'll be NED for 4 years on Saturday.
Delvzy, be gentle with yourself. This is scary, overwhelming stuff. Try to focus on you and let the rest of the world go. If you feel you need meds to help with anxiety, please ask your PCP or MO for the script. They can be a lifesaver at times.
My next brain scan is on the 18th and full body PET on the 21st. I have no reason to worry they will find anything, but I had no reason to worry I had a brain met either. Ugh. So goes the scanixety. I'm so thankful that my brain scan is done first thing in the morning and my appt with neuro onc for results is an hour later. So thankful.
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Delvzy, gentle hugs. At night, I listen to sleep hypnosis by Thomas Hall. My mother recently died of lung cancer and I credit it with being more calm. He is on youtube. It works. The other thing I do is tell myself "Dint think", quite a few times if thoughts intrude. It usually works for me.
Goodie good luck on your scans
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Hi everyone,
I haven't posted in a bit because we've been really busy, but the good news is we made it to Boston where Aly is being treated at Mass General and Dana Farber. I am so so so impressed that she managed to fly across the country with all of these crazy symptoms just three days after losing her vision. She is on Keppra for seizure control and Dexamethasone to help with the inflammation. One problem is that the clinical trial she is looking to get into requires patients to be stable on 2 mg or less of Dexamethasone and she is on 10 mg right now. So we're trying to get her stable and we've been in and out of the ER.
Aly has not regained her vision although just today she claimed to see a few shadows. She does have intense neck pain and the nausea comes and goes. A healthy dose of CBD + THC tends to help with both of those, but
The doctors have not suggested radiation at this stage. In addition to the trial, chemo and potentially getting compassionate use of AngioChem's ANG1005 are the main options we're evaluating right now. I'll be sure to ask the doctors about this.
One question: I've noticed a few posts about masks on this thread. What do those refer to?
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Rach the masks are these plastic ‘masks’ that you get fitted for when doing head radiation. That’s probably what you’re reading on this thread. 0
