Brain Mets Sisters
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Thanks, SOGNY! That was so informative.
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that’s was so great and hopeful
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When dealing with any immunological agent, less disease is better. I've heard this from more than one HER2 researcher now.
Larger disease seems like it is harder for the immune system to deal with.
I was told to stop Herceptin several weeks before CAR T-cell therapy or the anti-HER2 duplicity would confuse the modified immune cells.
I was told to stop cytotoxic drugs for at least two weeks before CAR T as the chemo agent would kill the modified cells. It wasn't dex but a return to intrathecal chemo (IT Topotecan and IT Herceptin via my Ommaya) that made me feel better.
CAR T-cells will keep replicating in the body unless they are killed off.
It seems that disease has to be so small that it might not show up in scans — maybe systemically it will be different than in the brain (aka in the liver only). At least chemo seems to stop the CAR T in breast cancer.
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I've had only good scans — CT, bone, brain mri (that showed lesions shrinking and my cerebellum not slumping, my 4th ventrical is open now). This week I had a new baseline neuro-assessment — she sees I'm getting much better.
She, my neuro-onc, thinks the car t did work since the damage is focused on my cerebellum alone. The disease only spread locally to the cerebellum
Still have to heal from my brain injury. I've been to three physical therapy sessions and I'm using trekking poles out of the house — not a walker.
(I was the first breast cancer patient to get treated with anti-HER2 CAR T-cell therapy)
They take lymphocytes from your blood and genetically splice a mouse virus to go after certain genetic over-expressions
https://en.m.wikipedia.org/wiki/Chimeric_antigen_receptor
Ann
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thanks for the detailed info Agness!
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SOGNY - thank you for the video. in the process of getting my mind around stereotactic radiation to the brain, helped a lot.
Agness - thankful for your detailed description of your CAR-T. please keep it coming. you are a trail blazer.
>Z<
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thanks SOGNY for the Video! And hope everyone is enjoying the long weekend
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This document looked at how long Intrathecal Herceptin stays in the CSF under figure 2. It was hard to find so I thought you might like the reference.
http://ascopubs.org/doi/full/10.1200/JCO.2012.44.8894When I went through partial brain rads in early 2016 (tomotherapy) I wanted to know how long Herceptin stays in the CSF — even HER2 specialists in IT Herceptin didn't know. I found this:
"The trastuzumab peak concentrations in ventricular CSF occurred 2 hours after ventricular injections, at levels of 146.2 and 185.1 mg/L for cycles 1 and 2, respectively. In lumbar CSF, the trastuzumab peak concentrations occurred later, 12 hours after ventricular injections, and at lower levels: 42.5 and 83.5 mg/L, respectively (Fig 2C).
Second, elimination half-lives for trastuzumab in CSF were shorter than in serum. Estimated values by a noncompartmental approach during cycles 1 and 2 in CSF were 2.5 and 1.1 days in the ventricular compartment, and 0.49 and 0.53 days in the lumbar compartment. In serum, elimination half-lives were 5.2 and 6.4 days, respectively, during cycles 1 and 2. In addition, trastuzumab trough concentrations (Cmin) in CSF were undetectable at cycle 3, whereas in serum, as expected,3 they increased from 34.3 mg/L at cycle 3 to 54.6 mg/L at cycle 6 (Fig 2D).
Third, the area under the concentration-time curves (AUCs) in the ventricular compartment were comparable for the two first cycles, 3,893 and 3,534 mg · h/L, respectively, suggesting that trastuzumab did not cross the blood-brain barrier (BBB) from serum to ventricular CSF. Additional monitoring of trough trastuzumab concentrations in CSF enabled us to determine the efficacious intrathecal dose schedule with respect to the CNS metastases and to maintain this efficacious concentration in the CSF."
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That was very helpful, Agness. Thanks!
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Well my first MRI since being diagnosed and WBR is scheduled, now I will read into every little headache (I'm sick with a cold right now) it is June 13, doing a CT and mri the same day, results the next day, hope I can keep going on my protocol.
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Agness, thank you for everything, I learn so much from your experience.
Keetmom
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hello ladies....looks like I will be joining your group....I just received "the call". Numerous brain mets....they didn't say how many...the largest being. .0.8 cm. Pretty effing scared right now. Does anyone know how many they can individually zap before they are forced to do WBR. I have an appt on Tuesday.
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kkrenz, welcome! Brain mets are super scary but like anything, I think most of us continue on with the new plan and adjust fairly well. I was told when diagnosed with 5 (6mm and less) that 4 lesions or more generally mean WBR but the tumor board agreed to Gamma Knife in my case. I’ve heard of treating almost 20 with Gamma, you may have to push for it or cyber knife though. At less than a cm, yours are small but the big question is how many.
I recommend watching the video posted above by Sogny on the different treatment options, it’s very informative and you’ll meet with the neuro docs armed with great knowledge.
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Oh boy kkrenz. Welcome. I am just processing a possible brain met. No advice, just empathy
>Z<
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kris- I just had 30 zapped with gamma knife a month ago. I had to go through 3 insurance appeals but finally got it approved. So don’t give in. There are a few factors like location and total surface amount but it can be done for more than 4.
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Was just coming to echo the info on lesions as well. Sorry you are here but glad to have you kkrenz. If you find that you are being treated with WBR, you can ask me anything. A few of us have had it. I hope local treatment is available for you.
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Thank you all for your words....just watched the video and it gave me great hope. We shall see what Mayo has in store for me on Tuesday. Hugs to you all
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The trouble with brain rads is that it either works or it doesn’t. While Breast cancer is radiosensitive, if you have. regrowth in the head the docs worry about necrosis/itrrenersible damage.
What you choose now will affect your treatment options later on.
It’s why I have incorporated HBOT to my brain Rads
It makes. rads more effective
Ann
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Thank you Ann...what is HBOT?
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Hello - I guess it is WBR for me. I have 50+ small tumors and a couple of larger ones 4mm to 8 mm. I am scared out of my ever loving mind at this point. Will begin treatment tomorrow. Dr. Google doesn't give me much time....but the RO at Mayo didn't make it seem sooo dire. They seemed to think we can get them, and gamma knife would still be available in my future for any persistent tumors or anything new that came up.....Ugh Any advice???
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My only advise is to put more stock in what your onc says over google. 5 more small mets were discovered in March, 6 months after Gamma to my original 5 and my onc still said 5 years is the new average and my neuro onc didn’t seem overly concerned either, our plan at this point is to zap them as they come if they remain few and slow growing. I personally have been fortunate to have little/no SE’s from the Mets or treatments, so I remain optimistic. Good luck! 😀
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Kris - Ask what's the plan if you have progression?'
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kkrenz...I was Dx'd with 20+ brain mets last Aug, and the two biggest ones were OVER 4 centimeters (NOT millimeters), and they were also bleeders. They wanted to stick me in hospital over Labor Day Weekend and load me up on steroids b4 they decided what they were gonna do w/me. I said NO! I didn't want to be stuck in hospital over a 3-day wkend, and I told the dr, I'd take my chances with the LORD.
I had WBR, too...10 zaps. I'm still bald in some places on my head - been told those places may never grow back, but that's okay - I'm STILL HERE!
My MO switched my chemo from pill-form to IV, and I asked about getting a port installed in Sept, she said, "I don't think that's necessary at this point." Obviously, she didn't think I'd last past Christmas. She finally ok'd my port in May because I'm not circling the drain yet.
Truthfully, things are getting a little worse as I've developed anal/fecal incontinence, and my left hand is doing really weird things now that I can't control, and dizziness is a little worse, but because my RO Rx'd Namenda/Memantine (an Alzheimer's drug), I've had very minimal neurological and cognitive deficits.
I plan to go to Yosemite and the Grand Canyon before I "transition," and maybe a couple of other places if the LORD keeps me around a little longer.
Medical MJ has helped tremendously...keeping seizures at bay, and I take a VERY low dose of steroids (1.3 mgs) per day to help with brain swelling and inflammation and headaches.
You'll get thru this, kkrenz.
L
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Thank you everyone for your response. I WILL get through this. I'm in a much better place now. Treatment plan is in place and I have had two very long conversations with two RO's and they are confident that this is the best plan for me. I have started Namenda and both doctor's believe (they don't know for sure), but they believe that my cognitive side effects should be minimal. I am currently NED from the neck down, and will be able to continue my Her2 treatments, so I feel fortunate on that front. Isn't it funny that I feel fortunate that I only have 50 or so brain tumors? I realize that it could be worse. Both RO's feel that the WBR will address the smaller tumors and they feel confident that they will be gone by the end of this roung. If I have persistent tumors after my 10 WBR treatments, they will zap them individually with gamma.
Agness - I asked about if I have progression, and it seems to depend on the timing of the progression. If I have persistent tumor that don't respond to the WBR then I can try hitting with gamma. If a couple of additional tumors develop they will gamma those as well. If I am stable/clear for a year and then all hell breaks loose again, they can look at WBR for a second time, or maybe Proton beam therapy (at Mayo). Does all of this seem reasonable to you or are they blowing smoke???
Thanks again to all of you fabulous women for your support. It really helped me through a tough time. simply reading back on the thread gave me a lot of hope.
Cheers!
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kkrenz - I am new here just trying to get my mind around a 2cm dural lesion of unknown malignancy. The only piece of this I can help with is that I can relate to the fear as well as the gratitude for this group.
My lesion is too deep to biopsy and the MRI is ambiguous on whether the lesion is malignant. Spinal MRI and Spinal Tap negative for malignancy. I am headed to Mayo on the 18th to get a second MRI. If it grew in the last 7 weeks, then likely malignant. Whether it grows or not, we'll zap it with radiation. I'll find out the plan on the 18th and probably have the treatment shortly thereafter.
>Z<
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Hi all
This is my first posts althoughI am registered since I had a brain lesion last year in April, removed by crani and srs. Have been ned until last scan where it recurred locally. Still hoping for scar tissue although it is very likely to be a met. Ned from neck down for now. Could you chime in with your experiences? Could it be possible to stay ned after a local recurrence?
Thank you for dropping some hope
Clementine
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Hi Clementine,
My situation is identical to you. Single met removed via craniotomy on 2015. Tumor bed treated with gamma after. NED in the brain and body since then. March brain MRI showed questionable area in tumor bed. My Neuro onc isn't sure if it's new growth or scar tissue. Repeat scan is scheduled for July. I had been getting brain MRIs every 6 months, but after discovery on the March scan, my doc wanted to see me in 4 months instead of 6. I continue to be NED in my body.
If the July scan shows growth/changes, I will have gamma to treat it. Best of luck to you!
Carrie
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Thank you Carrie.
Considering it grew within 4 months from zero to 2.5 cm I am very scared currently. My original met has been quite big under the dura, this one lies pretty on the bottom of surgery scar. Does radio necrosis/scar tissue grow additional mass or stay within tissue borders? Neuro said after radiation all is possible.Am I nuts wanting it so much to be a scar that I am ignoring the fact it is most likely a met? Am having scans every 3 month and would stick to this to catch it early if (not when!) it keeps regrowing so fast. I hate this effing cancer so much I could vomit all the time, sorry!
I didn‘t update my information yet, I am HER2+, ER-/P-, no mutations, no TP53 mutation, Herceptin and Perjeta cleared out a tiny liver met and will hopefully keep me on ned below the neck
Glad I found these boards which helped and help me a lot on days like this. I hope for good results for you!
C.
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clementine- I had s scare. After 3 years of watching my tumor bed there was enough growth/change that I had a crainiotomtbto check. It was just scar tissue. Those sirs have been good for over 5 years. I had new mets but not in the areaspreviously treated.
So it could be scar tissue.
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Clementine & Z - I wish you both luck. I have no words of wisdom as I am new to this whole brain met thing, but I'm thinking and praying for you and for wisdom for our doctors. I had first WBR yesterday. Was a piece of cake. Left me feeling a little "wonky" but other than that, no issues. Much faster than I anticipated. I was in and out of there in 5 minutes.
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