Brain Mets Sisters
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Thank you, Susan. This helped me a bunch.
I should have known better than trust Dr. Google. I've been around BC.org long enough to know better.
It's so hard to accept right now. We went into this with so much confidence. Originally, she was diagnosed with Stage II. My wife's surgical onc made it sound like we would spend a few weeks talking about her feelings and that would be it. Despite every setback, I always thought there was a light at the end of the tunnel. It feels like we're never going to get out if this.
Jenny, however, has a much better attitude about this. Sure, she has her moments, but for the most part, she's taken the news way better than I have.
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Thanks Maureen! Love your daily updates about radiation!
Sounds like you are getting through it well. Just remember to go easy on yourself. The fatigue usually peaks about a month after treatment. Also, don't worry if you don't see improvement in your first post-treatment scan. Radiation can take 6 months or so to start working.
I tried to think of it as the healing light and that helped me to relax.
Hugs, Susan
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wow. Thanks Susan. Good to know
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I'm about 2 months and 3 weeks from my craniotomy (cerebellum) and a month from finishing 5 fractions of LINAC SRS. If I do too much physically I will get facial pain relayed from the back of my head. Does anyone else have this happen as well? It kinda bums me out as I feel okay pretty much otherwise. It might be that it's just too soon after some pretty intense medical interventions.
Today for instance, my right temple (side of surgery) is uncomfortable and if I rub it I feel a knot there. I often will have to massage the back of my treated area as it will feel tight and pinchy in my scalp.
Normal?
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I get the facial twinge sometimes. The steroids seem to keep that at bay. When they decrease them I don't know. Food question and I will mention at my doc appt today. When I do too much like stacking wood on Saturday I slept most of Sunday. Lesson learned. Onto number 7 today with follow u
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Thanks Maureen. I think of you often and hope things go really well for you with treatment.
I kind of figured out that it is due to the heat. I'm down in LA for an oncology consult this weekend and they are having a crazy heatwave and where I'm stating is no air conditioning. When I took Advil (the only pain reliever available) and put an ice pack to the back of my head and rested I finally started seeing some results. I've got to remembers that ice is my friend. It was really helpful when I was symptomatic before I was properly diagnosed.
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ice is good idea. Today took a long time. They're cutting steroids in half to see how I do keppra remains. Finish wednesday then follow up MRI. Susan you were right they said will decrease over time so shouldn't be surprised at first MRI. Good to know. Onto picking up kitchen. Dishwasher is still broke so only can use bottom shelf. A real bummer
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Agness - good luck in LA. I feel like it took me a good 6 months or so to recuperate after my cranio in terms of random symptoms and travel really took it out of me. Also, the knots in your head might be the tiny plates they use to reattach the skull - I've got those too - you could ask your neurosurgeon about it.
Good luck, Maureen, hope these final two sessions go smoothly.
I got my brain MRI results from my last gamma knife and all 11 lesions are smaller or stable. One new spot showed up, but it is so small, we're just going to watch and wait, so at least for now, my brain is the least of my concerns. My liver on the other hand is not good, all lesions are bigger and one new spot showed up, so I'm starting new chemo soon (fighting with the insurance company to approve it).
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day 9. In and out. They decreased steroid so digestive issues seem to be better. Taste is nonexistent except for spicey foods. I've been eating them for some type of taste but not s big fan. Water is tasting funky unless I drink out of a recycled Poland springs bottle. Seems weird but it works
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Maureen, I'm glad your steroid is being decreased. Your might want to check out the herbal supplement, Boswellia. My neurosurgeon put me on it after my cranio. It helps inflammation, much the same as the steroids do, but without the side effects. I had issues with things tasting funny after my gammaknife radiation too. I found I had to only eat/drink out of glass and use plastic silverware. It subsided about a month after the radiation.
Agness, like Nancy, I also have the little knots on my skull. My neurosurgeon said it's where the attached the plates to the skull after the cranio. My BFF treated me to a massage last week and I forgot to warn the massage therapist about my cranio. She kinda freaked a little when she felt the knots and the dent in my head, lol. She apologized immediately and I felt bad for forgetting to mention it. We did have a little chuckle about it after the massage.
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agness - I have the same feeling around my craniotomy surgical site, some pressure and similar to what you described.
btw, my disease progressed, 2 other brain mets spots were found and planning for SRS soon....
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hello, I don't have brain mets, but thought I would read this thread, like most of us dealing w/stage 4 dx, to see how you guys are doing. Maureen & Susan your posts are very calming to an anxious bone mets to skull person. I have had recent progression to interior skull with rising TM's. I have been fearing brain mets & have been a big cry baby thinking about it, wondering what to expect regarding symptoms. So I do have qx for you guys. I have been experiencing numbness around my mouth, mostly upper lip, & skull pain, top of my head. Any one ever had numbness around mouth. I see RO on Thursday so I will be telling him about numbness feeling. Thank you Maureen for sharing your experiences I really appreciate it
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I really had no symptoms but a gold moon in my eye that the eye doc wanted an MRI done just because of my history. When they did the gamma knife they found all the other regions. I'm plugging along and follow up with onc for next steps. The rads onc says I can control the brain and onc says I can control the systemic end. I'm putting faith in both for a few more centuries. LOL
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update on me:
The consult yesterday was good but disappointing also. The MO I consulted with basically said the best option for me is scans every three month and get on Xeloda/Tykerb or TDM1(Kadcyla) for the rest of my life. She knows that this area is understudied and called out ASCO for its 2014 HER2 brain mets statement being not fully research based.
When pressed she says we don't talk about cures in my case. She also believes the lesions that lit up on my bone scan in July are likely bone mets, spread fromy CNS. She was trying to be agressive in her treatment approach, balancing QOL with efficacy. She said the FOUNDATION study (2013) comes most closely to my situation and as a first line treatment for mets Xeloda/Tykerb had a much higher 60% response rate in slowing disease progression. It does cause chronic diarrhea, hand and foot syndrome, headaches.
How did I find myself in this hell, especially when I feel fine right now?
I see my local MO next week for a follow-up. I have a post-rads brain MRI 10/27. I think I need to get my ribs imaged also. I have my next lumbar puncture the first week in Nov. Foundation One tumor tissue results should be back in a couple more weeks. I'm going to hang out in denial for a bit longer.
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hahaha - sorry for the new lesions. That sucks. My partner says we need to think of it like weeding in the garden; we can fight back.
Sue2009 - big hugs. Im so sorry for your symptoms, whatever the cause. I hope you have a good team on your side. Keep us posted.
Nancy - thanks for sharing your experience. It is reassuring. Crap about your liver though. Have you ever had your RBC magnesium and zinc levels checked? What about Metformin
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Hahaha, Sorry to hear that
Did you have any symptoms or was it picked up in a routine scan?
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Agness- I did the Xeloda/Tykerb thing for about 2 1/2 years. I am now on Xeloda and Herceptin. They have kept my brain mets at bay and NED there. My liver is hanging in there. The switch back to Herceptin was due to the solitary liver met. Thoought maybe Tykerb had stopped working on mutant cells. It sounds like we are in similar boats for the rest of our lives. Sorry. All the SE you listed are things I have experienced. Plus the fatigue. But all very manageable. Perk of Xelod/Tykerb is that is is oral and so no hospital visits except for tests and follow up.
ha ha and Susan- I am thinking about you
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done with rads. Follow up in one month. Gave me a coffee cup and certificate. I feel ok.
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Congratulations Maureen on finishing up your radiation treatments! I don't know anyone who hasn't had a good response to WBR. Given time, I hope you will see a good response too. I like the way you look at it, RO takes care of your brain, MO takes care of the systemic stuff. I also have an Ocular Oncologist who takes care of my eye.
Hugs, Susan
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Congrats, Maureen, glad you are done. Praying for good results.
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Thanks ladies. Your encouragement and support mean everything to me.
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Hi. Maureen. Congrats on finishing your WBR, Anyone else who recently completely WBR. I will need it the near future as they found 22 sub centimeter spots all over the brain. I'm 43 and so far don't really have symptoms aside from extreme stress. A year ago they found 1-3 very small spots but now they have increased in number.
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Hi Sophie,
Sorry to hear that. Did you have any treatment for the small spots before?
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no. they were very small and then i went on taxol, perception, perjeta and it got smaller. so i stopped worrying about them and 6 months later there were more and 1 month later high resolution/brain lab showed even more. i don't know if the tests and dye cause even more growth.
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Sophie, I hope WBRT destroys them all. Lots of people get a great response from it.
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do you know of anyone who has WBRT. my doc want me to enroll in a clinical trial with sorafanib with WBRT. I am scared that i won't be my old self. So far i am doing well except for radiologic findings. has anybody been thru WBRT recently. i am a bit concerned about it as doctors are not recommending WBRT anymore as per guidelines but thats kind of the only option for me.
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Have a read of the first pages of this thread. Lots of people share there experience of WBRT there. I know of two ladies who have had it, and they said they are a bit more forgetful now, but that's about it.
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i just finished WRB. It was ok but not sure if it worked. I suppose time will tell. I don't know about that clinical trial but I'm sure they offer information from the trial site?
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How long ago did they have WBRT? generally does WBRT work for breast cancer? thats what the rad onc said
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SusaninSF
I have multiple brain mets including one large one in the area of my eye - on top of the left muscle (not the optic nerve). My other lesion is 5mm on the ganglia and several disbursed less that 1mm lesions. Right now, things seem to be stable thanks to Xeloda.
I went to MGH to get a second opinion on the pencil proton therapy but it seems my choices are stereotactic or whole brain at this point. My regular radiation doesn't seem to want to do stereotactic radiation on the eye due to concerns on possible vision loss.
I am reluctant to do the Whole Brain, particularly after the MD Anderson article about WBR came out this summer.
What have you done to treat your eye met?
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