Brain Mets Sisters
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Tina bobeen
I had TNBC treated with neoadjuvant chemo, bilat mastectomy and breast radiation. Local recurrence in chest wall during radiation, followed by a migraine which lead to an MRI and detection on 2cm brain met. I did surgery first, then whole brain radiation. Got 4 years clear, then routine brain scan for annual found 30+ tumors in brain and also chest wall and lymph node progression of primary disease. I had gamma knife with that, which hit all the tumors, but those nasty suckers grew back. I would do the surgery , especially since you actually know the tumor is out and gone!
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Elaine - this is the best place to post questions about possible brain mets - and many have done so - since many of us don't check out other threads on the forum.
Based on your symptom description it sounds like you are experiencing symptoms similar to what I had last year. Occipital neuralgia (ON) is a subset of the symptom set for a cerebellar tumor. It might be just ON but with any cancer patient the risk of brain mets is there -- even as the first site of mets. Get a brain MRI with contrast done ASAP which is done to diagnose either condition. Starting to address the cause sooner can only give you more options.
PM me if you have questions.
Ann
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Update;
The Good-
Gamma Knife performed on the NHS today.
The Bad-
11 mets and not 3 were found on the thinner slice MRI. Many of them on the Dura lining. Biggest one was under 2cm. Total volume was under 12CC. Neurosurgeon thinks WBRT might be recommended. Seeing him tomorrow for more detail.
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freakzilla, I'm heartbroken and sorry I don't have anything helpful to say. I'm glad to hear finally able to get gamma knife and so sorry about the unexpected findings. I'm hoping you have a productive meeting with your neurosurgeon and can move forward with next steps asap. you both must be exhausted and devastated - try to hang in there, and remember there are many folks doing well long after wbrt for many lesions.
*******
Elaine, re symptoms: I had sporadic (3x over 6 weeks) 'visual field defects' (could see wrist-watch clearly, but not the numbers on the face), lasted 5-20 minutes. no one had ever heard of similar symptoms of brain mets. mri showed two spots (successfully treated w/ gamma knife). it's extraordinarily unlikely it's brain mets, but if it were me, I'd request brain mri to be on the safe side. best wishes for a clear scan and an easy solution.0 -
been off the boards awhile & just got caught-up here - I'm ecstatic about so many good reports!
relieved and very very happy to add another: recent brain mri was GREAT - same as 3 months ago - nothing new & treated spots still only barely visible (gamma knife 9/2015)! in January, new 1cm spot showed up on liver w/ enlarged, somewhat-active regional nodes - update: spot is essentially unchanged, nodes are the same, and while there may be a teeny new spot, they're calling all of it indeterminate and stable. I'm thrilled to grab the three month pass & run!!
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That sucks Freakzilla. They need to do IT Herceptin first since that gets exactly to the area of involvement. No dicking around any more. Do you have anywhere you can get IT Herceptin off-label?
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Ann, We're waiting for the Onc to come back to us. My feeling is they will say Gamma Knife has treated all there is to treat, so no need for IT Herceptin, but we'll see.
There is no involvement on Arachnoid Mater or Pia Mater.
One of the lesions was close to the optic nerve.
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She needs Herceptin. [shaking my head at the medical establisment
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We received the discharge summary today.
Agness - What would you make of this extract from it.
"There were some areas in the vicinity of tumours treated where large intrasulcal blood vessels had a ragged appearance suggesting tumour spread in the subarachnoid space. Although the dura was clearly tumour stricken the subarachnoid space appeared clear in other areas."
Thanks
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Great news spicypetunia!
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Freakzilla - sounds like LM.
http://radiopaedia.org/articles/subarachnoid-space
http://emedicine.medscape.com/article/341389-overv...
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Thank You, really confusing. Nothing is showing below the Dura though.
On the plus side, it looks like we can get IT Herceptin. Two people have had it in the UK before we have found out. One of them is still doing well on it now.
It has been used with methotrexate in the UK before. Onc is unsure whether to run them alone, or with IV Herceptin, Pertuzumab and Docetaxel.
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I got my ommaya port in December along with two doses of Kadcyla; I got IT Herceptin twice weekly for a few weeks. There is a risk that brain mets can re-introduce the cancerous cell line into the rest of the body. The Kadcyla did tweak my liver a little as it will do, and lowered my platelets.
I switched to higher dosage weekly infusions which seemed to help. When I switched to partial brain rads I stopped all other drugs except for the supportive things I was doing that showed that they might enhance the affects of rads and help protect my healthy cells.
If your partner is going to do IT Herceptin outside of the brain rads then yeah, probably for a while she should also be on systemic anti-HER2 therapy concurrently. If I switch off of IT Herceptin (ONT-380 trial would require that for 3 months should I have non-LM progression that needs treating) then my MO would put me back on Kadcyla.
We discussed using a cytotoxic agent along with the IT Herceptin. The issue is that post brain rads (probably more so with partial or WBR) the brain is more prone to develop encephalitis in response to a chemo agent. The older standard of care is methotrexate but the emerging standard for HER2+, based on everything I've gleaned from patients and articles, is that a cytotoxic agent isn't needed. In my case, we held off adding in Topotecan as there was no sign of progression and new lesions post partial brain rads and so it didn't make sense if it would hurt me.
I know of Nina (5yrs), Kristin (6yrs), and another new study from Feb this year of someone 7yrs on IT Herceptin and doing well.
If you are going to get a port placed ask for a smaller pediatric-sized port. They don't usually remove these ports unless there is a problem and the lower profile pediatric size is much more reasonable for the long-term
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This thread has been pretty quiet so I just wanted to check in and see how everybody's doing? Anybody have any updates to share?
Hope everybody is out and about and enjoying spring!
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I was just thinking the same thing Becs
My latest MRI just uploaded and showed something like "slight interval increase in vasogenic edema," which indicates very slight progression. The good news is that no one called me to communicate these results so they don't seem too alarmed I guess. I'm hoping it's only because I had to take a two week Abemaciclib break since my last scan (which was only eight weeks ago) due to low White counts. I would assume if I was off the trial and they wanted to radiate someone would've called me by now, but I did send an email to my neuro onc stat.
The other good news is my lung funkiness seems to have resolved per my CT scan and there's nothing new. So I continue to be a brain-only metser. But obviously I had hoped Abemaciclib would get me to NED and keep me there for years and things don't seem to be moving in that direction.
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Next Monday, I'm going for my 3rd gamma knife in less than a year. The little buggers just keep popping up in new areas of the brain. I just had my last gamma knife in the occipital lobe 2 months ago. Then I had surgery last month for removal of the tumor that was gamma knifed last August. I started having non-stop crushing headaches and double vision about a week after surgery. An MRI last week showed a new tumor in the Pons area - looks like it's attached to the brain stem. Is there anyone here who is triple negative who has had good luck with a chemo that can cross the blood brain barrier?
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Does anyone know if dura based lesions respond to system treatment? I.e. Perjeta and Herceptin?
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I'm doing pretty good over here. My body was finally ready to go for a bigger walk over the weekend so I took my two boys a half-mile up the road to get eggs from the neighbors. It felt good. We also have a steep staircase down by the water (~7 stories) that I used three times over the weekend; I hadn't been down there in more than a year due to my brain tumor and symptoms.
I'm still following the low-carb, modified ketogenic diet. I started with fasting in the hospital in prep for my omnaya port surgery and then cut out all grains and most root veg and fruits. Over time I have been less rigid so I will take very small portions of fruits, around 1/4 cup or less, as a means to give my body access to different types of nutrients. Berries and cherries are more core as far as fruit goes; apples I might nibble off the core after I cut the fruit into chunks for my kids.
I did two courses of Auguamentin, an antibiotic used for sinus infections, and my infection resolved fully in my sphenoid sinus. My body really didn't like getting that infection on top of healing from the flu which hit my irradiated brain quite hard. Thankfully within a day of starting the antibiotics my energy level improved substantially. That was around 3-1/2 months after the end of partial brain rads.
What was interesting to observe was when my body was the most pissed off about all that crap going on (virtual fallout, rads healing, infection) was that my weight jumped 5 lbs in a week suddenly without any change in my eating habits, days later my body flushed out the extra fluid and I was peeing tons -- that was before the infection was known and before antibiotic started. Since I have been feeling better the past few weeks my weight dropped again, then leveled off. I started at around 145 before my dietary switch, which felt a bit high for me in spite of a good diet (138-140 would be more normal). After starting the keto diet I dropped down to a stable 132-133, and now I'm down around 128 or so. I think it is just the increased activity now that lowered things. Still eating loads but with limited carbs.
My next scan will be a CT and maybe with a PET if insurance approves. My MO wants to make sure no cancer escaped from my CNS back into my body as she's seen it happen before, though I doubt in the presence of IT Herceptin. I was on no systemic therapy from Feb 2015-Nov 2015 and then got two doses of IV Kadcyla in December before I stopped all treatment when rads started. I also had IT Herceptin for about 4-5 weeks before stopping for brain rads as I had a bad reaction to chestwall rads while on adjuvant Herceptin and I didn't want to take a chance that it would cause burning of my brain.
In July I will get my next brain and spinal MRI.
My last CSF analysis was still clear, no signs of anything off except non-cancerous atypical cells that they think is due to brain rads.
I recently switched from weekly to twice monthly IT Herceptin and as scans stay stable we are aiming to reduce my dosing to every 3-4 weeks. The reasons for this include:
we can't see the affect of treatment so it may or may not be doing anything at this point;
Herceptin is packaged such that my 100 mg is far less than is given through IV administration so what isn't used is tossed;
Herceptin costs something like $5K a dose (I have to check my more recent insurance statements to see how much is being billed)
The more frequently an ommaya port is accessed the greater the risk of introducing viruses or bacteria into the CNS.
I have two neuro-oncologists, the second is at a research hospital and is my back-up in case we need to do more. Last week, in front of his resident, gave me credit for my treatment and recovery. He said it was my research and active involvement in my care that seemed to be making a difference. How about them apples?
Much love,
Ann
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I just got back a positive report my brain hippo-sparing rads from May. It sounds like it worked. I am happy about this and the next steps to wellness. Unfortunately, I am in the Cancer Section of our University hospital tonight. I was brought in for chest pain, but I thought it was acid refux-heart problems eliminated. Tomorrow I get a sedation and endoscope and hopefully it is "flush-or-thrush"-which they can give some kind of antibiotic.
I do not wish to have any kind of ulcer because it will take longer to heal. None the less, I have received great care at the Simon Cancer Center, but always remember that YOU are your best advocate.
Thanks for your support on those brain rads. I might have a tiny place they will gamma knife, but I am getting of the hospital first. Is Gamma Knife a one day shot?
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I had gamma knife to 7 lesions and it took about 2.5 hours. I had it on a Thursday afternoon and was back at work by Monday morning.
The crappy news train continues to roll on for me. Hey Ladies. After 11 months of Gemzar, Carbo, and Herceptin, my pet-scan last week showed some progression. The original mass in my breast got a little bigger, and a new swollen lymph node popped up. My doc wants to get ahead of it and change drugs now before the progression continues. So as of this coming Thursday I will be starting Xeloda, and continue on with my herceptin. I have both triple negative and triple positive cancer at the same, so they are covering all bases. A spot also lit up behind my esophagus, but my MO thinks it might be acid refulux related. She is setting me up with a GI specialist to confirm what it is, and then deal with it.
My aunt by marriage (my uncle's wife) has another niece (in her 50's. My aunt was only 8 when she was born) who has stage 4 breast cancer also. We have been in touch since my diagnosis and the same day I got the news about my progression and treatment change, I learned that after over 10 years dealing with MBC, she passed away.
Between all of this and the diagnosis of 7 brain mets in February, which has left me with what appears to be a permanent seizure disorder, so far 2016 and my 35th year, is off to a banner start...
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Hi I've come across some information that you may find helpful. I've done a topic box in the science forum.
https://community.breastcancer.org/forum/73/topics/845083?page=1#post_4733978
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Becs, is surgical removal of the TN tumor not an option? I know docs are split on breast surgery after a Stage IV dx but your TN is only localized or regional, right? It would make sense to me to get that sucker out of you before it could metastasize since TN mets are generally more difficult to treat than Triple Positive.
I am sorry that you are still experiencing seizures! I think we both had similar focal seizures as our main brain mets symptoms - which is why your symptoms sent up red flags for me. those are continuing for you? Have they gotten better? Worse? That really sucks! It's such a discombobulating feeling. Ugh. Do you think a second or third opinion could be worth it?
My neuro onc is not concerned about my latest MRI and said that even stuff like the way my head was positioned or how the contrast moved through my veins could be enough to give the impression of slight progression since we're talking about sub-mm stuff. She also reminded me that I have never had brain rads and I'm doing remarkably well considering that.
That bad news is my two-week break from Abemaciclib didn't help my white counts too much so next week she's starting me at a lower dose. Between that and the MRI, I'm anticipating my run with this drug will come to an end sooner rather than later, so I'm starting to look forward to the next plan of attack. Since my brain disease is very much under control, I'm leaning towards another drug trial instead of rads. We will see
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Thanks BAU. When the triple negative area was first discovered last summer, we discussed a lumpectomy and I met with a surgeon at Sloan Kettering. He was hesitant to do it and the surgeon and my MO presented my case to all of the doctors in the breast cancer group at Sloan (which is a very large group of some of the best breast cancer doctors in the world). They all 100% agreed that surgery was not the best option (at least at the time). They believed that the triple negative could have been in my blood stream at the same time as the triple positive that had spread, but was potentially too small to see. While you can never been sure, the whole group felt that if it was in fact in my blood stream, removing the original tumor could cause it to set up shop in other more distant places.
The big, full body seizures seem to have stopped, but I continue to have truncal ones (they essentially feel like spasms) and are in my left hip area/lower back. I remain on 1000mg of Keppra twice a day and have been on a rarely used (since it is considered a controlled substance). This combo has definitely helped, the spasms are less intense and less frequent, but still there. I recently started physical therapy so I am hoping that will help too. I have my next brain MRI next month, so hopefully it will show even more improvement. I don't think me or my family can take any more bad news).
That's great news about your brain MRI showing less progression that originally thought! Hopefully the next one will be even better!
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Hello! I am new here. I just found this site and am so happy I did! I will post my store in the intro page but came here first because I just came from my radiologist and neurosurgeon. I am getting Gamma Knife for the third time this coming Wednesday. My doctor basically said that the next step will be WBR if I develop more mets after this treatment. I am having mixed feelings over this news. I have done research and it seems that this WBR is a bit barbaric? Please tell me that some of you have had positive experiences with this type of treatment?? I am 45 years old and have a 10 year old son that I plan to see grow up. Thank you! I am excited to be a part of this group! I have a wonderful support system but they honestly don't understand a lot of what I am going through.
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Hello all...I haven't been on for awhile as I've been out enjoying the nice summer weather
Yesterday I went in to have my ovaries and tubes removed. Unfortunately, my surgeon was unable to do this due to extensive endometriosis that has caused adhesion and basically everything is one big mess. So I will go have another consult with my OB/GYN surgeon and a general surgeon on the 24th to discuss next steps. It's frustrating. I was mentally prepared to have that done yesterday and still ended up having all the after effects of surgery but nothing resolved.
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That sucks Goodie. When I was dealing with infertility I worried about having needed fibroid surgery and waking up without a uterus. Here you are in the inverse situation hoping for a different resolution but instead... nothing but recovery. That's for shit. Sorry about the endo too, that had to cause some serious pain over the years.
Sending hugs
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Thanks for the hugs, Agness. How have you been?
I will see my ob/gyn surgeon on Friday to discuss next steps. In the days since my failed surgery, I've started to get concerned that perhaps they will find cancer in the uterus or other surrounding organs. In some rational part of my brain, I know this probably isn't the case but the fear continues to creep in. I'm praying they can get me rescheduled for surgery ASAP.
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(For those of you who have read my similar posts earlier, sorry for the repetition)
Jaci,
Glad you have found us. You will find a wealth of information on these discussion boards from women all over the world. I personally don't think of WBR as barbaric. Why do you say so? I had 12+ tumors in my brain, the largest over 2cm and WBR cleared away every single one of them. I had WBR two years ago and have scans every 3 months. So far, still no evidence of anything in my brain. My radiation oncologist, Penny Snead at UCSF, specializes in BC mets to the brain and she said that WBR is the best way to wipe the slate clean. She said I probably had more small mets that didn't show in the scan so wiping the slate clean with WBR was the best approach. If something new pops up after WBR she said they could zap it with gamma knife. She told me she could keep me alive for years this way which really surprised me since I thought I probably didn't have too long given my extensive mets (brain, eye, lung, bones). Although WBR fatigued me and I lost a lot of weight, I was able to dance and do Iyengar yoga through the whole thing and continue to do both activities every day since. About a month after WBR, my fatigue peaked and I've been pretty much normal every since. Some loss of short-term memory but no problem with long-term memory or high-level cognitive functions. I'm still myself, for better or worse. PM me if you want more info.
Hugs, Susan
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From testimonies I've read wbr for most women has its downside. Most tumors did not disappear...only shrunk. My radiation oncologist said if I were to get wbr he would put me on Altzheimer meds. I would have to take it the rest of my life. I would be more likely within months to a year be at risk for dementia. Women age 60 up have a greater risk of dementia then younger women. He also said it was no guarantee that I wouldn't within months to a year be dx with another brain tumor. Not that he was against it but was obligated to tell me the risk factors before surgery.
This was a risk that I wasn't about to take. I've now have had three Gamma Knife surgeries and no down side at all. My memory is good, and I'm independent...doing well.
My radiation oncologist said that unless I had good treatment (like Kadayla) I would continue to have brain tumors.
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I found out yesterday I have tumor regrowth in one of the tumor beds. Because it was Sunday, I was only able to get evaluated at the local hospital and their MRI tech wasn't in. But the CT found a 1.5cm lesion in the paratiel tumor bed. Obviously I'll need an MRI from my cancer center to get all the details and determine where to go from here.
I'm taking it pretty well. I knew it was a gamble not having rads immediately but I still like I feel like I did the right thing participating in this trial. Aberciclib held me stable for several months - I suspect it was when it started killing my counts and I had to take several breaks and go down to a reduced dosage that things got out of control. Between that and the frequent GI issues it caused, it doesn't seem like it was the right drug for me. Onward and upward to the treatment that is!!
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