Brain Mets Sisters
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SRS would be perfect for that.
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That sucks, Bad! I'm sorry to hear about your progression. Hopefully rads can zap that bugger into oblivion ASAP.
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hang in there Bad. We are all here for you. One day at a time.
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Bad - sending hugs.
I had linac SRS to my tumor bed over 5 days with a mask instead of gamma on one day with a frame. It's an option.
I go see my MO in a bit. My PET scan last week was still NED, my naturopathic onc was able to pull the results up. This is a research hospital but it's almost 9 business days later and they haven't given me results directly.
We are away camping next week so I think I'll have to wait until we are back to schedule my brain and spine MRI and consult with my neuro-onc. We will also be pushing out my IT Herceptin to every three weeks provided things look good. From eyes down nothing new showed up on PET so far.
Thinking of you all.
Ann
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Great news on your PET, Ann.
I finally decided I'm just not able to work any longer and filed for SSDI at the end of June. I received notice I was approved yesterday. I actually cried.
In order to continue my battle with my ovaries, I've been referred to a oncology gynecologist. This surgeon will be able to complete a full hysterectomy, robotically. I see him on the 18th to schedule surgery. I will see my onc on the 20th and I'm sure we'll be scheduling my next PET soon. Let the scanaxiety begin.
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that's great Agness.
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Sigh. Officially joining the mets club. Brain mets only at this time. Overwhelmed and terrified. I'm in my 30s.
I multiple spots showing up on the MRI. Drs first recommendation was WBR. But they found a trial I'm starting Abemaciclib Monday.
Tell me something good.....
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Hi Elizabeth, So sorry you have to join us but find comfort in the support you'll find here. Did you doctor discuss GammaKnife at all to treat the mets? Many of us have opted for that treatment, even with multiple mets, rather than WBR. I had Gammaknife to the surgical bed of my tumor and have been clear since then (March 2015). Much love to you as you digest this diagnosis.
Carrie
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Hi Elizabeth and welcome to the coolest club you never wanted to be a part of. I'm also in my 30s with brain-only.
I did the Abemaciclib trial and initially got great results. But low counts forced me to take multiple breaks and eventually reduce my dosage, which led to progression. Still, it kept me stable for nearly six months and likely would've for longer if I had been able to tolerate the maximum dose.
Speaking of which, I have a new treatment plan. Probably the week after next, I will get SRS to the 1.5cm tumor (not sure about the .5cm one, have to clarify) in conjunction with a taxane that is supposed to make the brain more sensitive to radiation. Happy to have my next steps
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Susan, Thank you for sharing. I have just been diagnosed with brain mets and am due to start wbr on Monday. I am scared, but your post made me feel a little better. This is the best option for me right now. I have a great oncology team and they have not let me down in 14 years. I have had mets to my bones for 8 of those. This is the first progression.
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thanks for the response Goodie and Bad. Gamma knife isn't an option for me now. I have a 1cm tumor but also 12 other tiny spots showing up. They say there are likely more that are just not showing up. So the only radition type seems to be WBR. Hoping the Abemaciclib will post pone the need for that a bit.
BAD- I'm glad to hear it held you stable for awhile, any regression with tumor from Abemaciclib or were things just stable?. In sorry to hear that it dropped your white count. I thought there was less of a chance with this CDK4 & CDK 6 inhibitor as opposed to Ibrance. Any advice for me going into this? I don't have the best GI system to begin with so I'm concerned about the reports of GI issues associated with this drug.
I'm new to this forum too. Any advice is appreciated. I'm still in shock.
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Elizabeth, I did experience regression. Since I had the two large tumors removed surgically I didn't have a lot to go on to determine regression. But my tiny opposite side tumor (5mm) shrunk a mm from Feb to April. Unfortunately in May I had to take my first two-week break. End of May MRI showed areas of enhancement but not enough to be call progression. I went back on for three weeks at the max dosage, my counts tanked again and I took another two week break, restarting at a lower dosage. I was actually going to email to neuro onc and ask to move up my July MRI (since I had spent so much time off chemo) when seizure like symptoms drove me to the ER over the holiday week.
I do know a woman in this trial that has your pathology (ER+ but HER2-) and she's done fine on the reduced dose. I tend to think us Triple Positives will progress faster on the reduced dose due to our cancer being more aggressive.
As far as the GI stuff, it was unpleasant but I dealt. I took a constant stream of Zofran and Imodium and planned my meals carefully, i.e. Saltines and ginger ale during the day and my one substantial meal at night after I was home from work and had access to my own bathroom. Request prescription anti-nausea meds and get some Emetrol to hold you until the prescriptions go through. You can do this. (((Hugs))
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thanks for your advice. Really appreciate it. Really hope I can tolerate the Abemaciclib. Most nausea meds (including zofran) did nothing for my chemo nausea during my initial treatment. Well fingers crossed!!! Wishing you the best in your treatment too.
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Would a nausea drug patch be an option
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A scopolamine patch, the one behind the ear? Used that during chemo and it didn't help. Did you have GI issues everyday? All day?
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I am currently under WBR and still scared about side effects. How much sections and total Grey did you do? I have multiple tiny tiny mets all over. The biggest one is only 0.4 mm but there are many of them.
Thanks
Sorry my question was to Susan San Francisco
Laura
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LauraRamona,
My wife did 3,500 cGy (centiGrays). See this post. Her brain mets seem very similar to yours: two major blobs of about 1" and many tiny diffused spots.
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Hi all.
Just introducing myself to your group. I've just been diagnosed with Leptomeningeal Mets. Still in shock I think...
I have had a quick read here, but very hard to take it all in.
Next week I start WBR for 10 sessions.
I look forward to getting to know you better, hopefully as I calm down & reach a new normal!
kt
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They found my brain mets about 3 weeks ago. They immediately scheduled me for 10 doses of WBR and then told me that there were no more treatment options for me and had me sign hospice paperwork. It's been good for me. They certainly make sure that I have enough pain meds to stay comfortable, but I wonder why I wasn't offered any of these new treatments. I'm also now wondering why we're not trying any of the anti-hormonals. Gosh. I just feel like I'm doing this all wrong.
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Kebob - when I saw your post about going into hospice, I wondered the same thing. I don't have brain mets, I am very glad to see you here on this thread getting some feedback from these smart ladies. Even if you are actually out of standard options, there are some very important clinical trials going on for most types of breast cancer. I would certainly get a second opinion at a major cancer center, armed with questions from these ladies.
>Z<
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Second opinion, ASAP. Go to a place with a comprehensive brain tumor program!!
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for kebab,
All of here have brain mets. I have not responded on the boards lately but am still reading posts about my brain mets sisters from time to time.
There are lots of trials at Stanford and ucsf, like bad-at-usernames posted (awesome!). And I don't even post anymore but felt compelled to post for you, kebab.
Well, maybe these trials will buy us a little more time with some discomfort. What do you want to do? Don't let the docs make that decision for you. We don't know what will work or if it will work. But are you willing to try?
Keep posting. Tell us what you are thinking so we can tell you about our experiences. I have had brain mets since Nov 2014. I'm still here. Trying.
Susaninsf is my inspiration. She had brain mets, many of them. Now she's Ned in the head! It's possible! Maybe you can be that outlier. I'm striving for this. Yes, I'm still scared. I have a 5 yr old who needs me.
Agness is a wealth of knowledge and checks up on me weekly.
I live in the east bay. Pm me if you want to connect. Hugs to you and your dear children. Letranger
Thinking about everyone on this board.
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Kebab,
I took a look at your biography, and it looks like you have done all the right things, including clinical trials at Stanford. Reading your details, I see some similarities with what has been going on with my wife, including Xeloda: my wife has lasted longer on Xeloda, but when she had to decrease the dosage because of HFS side effects, as you did, the cancer came back with a vengeance. So I feel that if these side effects could be managed better and decreased, the chemotherapies would be more effective. For the treating oncologist, it is just a nuisance, but side effects are actually the a leading cause for many drugs becoming ineffective.
Coming back to WBR, it has been good for my wife, and it stopped the brain mets in the brain, at least for now. Cognitive side effects of WBR, do not seem very different from chemo-brain: bothersome but manageable.
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Gcriani,
It's encouraging to see your wife has done well with WBR. I start on Monday next week & am feeling quite apprehensive about it. Mind you my head is so sore atm, I'll do anything to deal to the mets.
I see she was diagnosed with brain mets in November last year? Is she on chemo as well? I will be having a medical oncology appt in August to discuss this.
Your wife is very blessed to have you
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Just wondering who manages your brain mets? Are you seen primarily by a Neuro-onc or MO? Does anyone not see a Neuro-onc?
Also all of my Drs tell me it's really rare to have "just" brain mets. Especially being ER+/PR+. Anyone else been told this?
Elizabeth
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Elizabeth, I primarily see a neuro onc, but that's because I was in one clinical trial and will start another. My first point of contact after my mets dx was a neurosurgeon, since two of the suckers were coming out, but I haven't seen him in months. Now I have a rad onc in the picture. My MO has mostly hung out in the background, managing my hormonal treatment and making sure I'm checked to make sure nothing is brewing below the neck.
And brain only is rare, but less so in Her2 and TN, where aggressive disease is more prone to fight it's way through the BBB. You and Goodie are apparently the most special of us unicorns.
Have you started Abemaciclib yet??
Good luck tomorrow kt!
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I have posted here before. My daughter Dani 32yrs, she has extensive stubborn bone mets, now she has spots on the liver, she has over 20 lesion in her skull, but one particularly keeps growing, in the left frontal area, even after Gamma done to the area.
She is as of now ER+PR+(weak) and Her2+ she tried all the HER2+ TX last year and there was much progression, then this year doc tried Ibr/Letr/Herceptin. But this bugger still keeps growing.
With the grace of God we are gonna see a new Onco specializing in Mets on Tuesday and Radiologist Onco on Friday. My questions is it's pushing into the Dura, but they keep saying it's not Brain mets. Is that correct? Did anyone here have first skull mets that developed into the Brain? How does this thing work? They told us already they would not do Gamma again, because it's not just one place. I don't know what they have in mind.
We used to work with a Neuro Onco but it was at another Hospital, we'll see what they have in store for us this time.
I know that this doc wants to put her on Xeloda with Neratinib or Herceptin and Ruxolitinib something like that, unless they change their mind. Anyone here these things?
TIA and hugs to all the brave ladies here.
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