Brain Mets Sisters
Comments
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Sorry....I meant to say Reagan, not teagan! Terrible typist on my IPad.
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Hi Reagan, nice to meet you. I have also been diagnosed with brain mets in November and I have been following this thread.I have been lurking and learning a lot.
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Hi Reagan,
I was originally diagnosed Nov. 2011 and then diagnosed with a brain met September 2012. Not even a year in between!!!
Oh well, moving along.....
Nice to meet you.
Jill
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Hi Ladies, sorry you are in this group. I have a question for you all, did you have headaches? If so did they start out sorta mild and gradually get worse? I have had a non stop headache for a month. I have suffered with migraines for years but they usually last 2-3 days and were with my cycle and since chemo 2 1/2 years ago I have had less of them. My migraine meds. help lessen the pain of this headache but if has never gone completely away in a whole month. I am trying to stay positive and not run to the Dr. because I know she would scan and if just a hormonal migraine Id just a soon not pay for another scan. Still paying on the last of them pot chemo rad. and surgeries. Opps I jst read Im not to post here if you want me to leave I will,Thanks ladies.
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I have not had any headaches at all. I've had some neurological symptoms - weakness, fine motor skills issues, but no headaches or visual disturbances.
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Luvrving my diagnosis date is June 18th 10 very close to yours
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To Iowa Sue,
We all have stage 4 cancer, and on this thread we have been diagnosed for certain with brain mets.
I dont know if you saw this thread
If you are NOT stage IV but have questions please post here
http://community.breastcancer.org/forum/8/topic/783594?page=29#idx_841
That is a better place to post. Best wishes
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Thank you I will go there K-Lo best wishes to you too.
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Hi ladies
I have been a stage 4 girl for a couple of years, but soft tissue tumours only. Today I was diagnosed with brain mets. There are a few in the cerebellum and I have been walking around like a drunk for the past week. Onc said I will have MRI then rad onc will determine best rad treatment.
What should I know? What should I push for and what should I avoid? I feel a bit lost. I have always been so well informed about bc and my body and treatment but this is completely new. Any words of wisdom gratefully accepted.
Cheers
Angela0 -
I too have been diagnosed with Cerebellum mets. I have been kinda clumsy but I thought it was normal. My dog chewed my glasses and have been wearing my old ones. Do they have you on steroids yet. I have scans tomarrow then appointment Mon. Best of luck to us...
Koda
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Yep, Koda. On massive steroids immediately.
MRI very soon then decisions about which radiation.
Keep in touch.
A0 -
Hey, Koda and Angela,
Really hard to take isn't it? My brain mets turned up last January but they said they were too small to cause symptoms. I was lucky enough to have gamma knife x 2 with good results.
What I would push for is a consult with a neurosurgeon. Even if they do not have gamma knife at your facility, that is the most knowledgeable person regarding your head, in my opinion.
And the NS backed me off the steroids pretty fast.. those were prescribed by med Onc.
Best of luck... Kathy
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So Sorry you both have to join this group. When you see the rad onc after your MRI, they will decide on either targeted rads or whole brain radiation. Once you know which procedure you will be getting, we can help as the process is quite different. You will probably need a high resolution MRI ( atleast my cancer center requires) to do the mapping for the radiation. If you can, it is helpful to see a neuro oncologist and/or a neurosurgeon. For most people, radiation often relieves symptoms quickly. Good luck. Lots of hugs. This is a nerve wrecking time.
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I a'm Darlene just got pet Scann Thursday it's clear but MRI shows brain tumors start radiation on march 5 th , have you had radiation on the brain ? did it work? What side affects did you have
I will be having the whole brain and at end 3 tumors targeted more
how many treatments are you having ,or have had Thanks for the info,God Bless Brown eyes0 -
Hi Darlene - glad you found us! I had brain mets discovered in early November. I underwent 10 sessions of whole brain radiation and it cleared up almost everything. I have one or two small ones remaining that my RO may zap if they don't clear up on their own. My worst side effects were a little fatigue and the hair loss.
Good luck with your treatments.
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what kind was yours? my tumor
was at cerebellum and i had headaches and was sick. it is so scary!0 -
hello. It is hard to talk about isn't it. One onc not my nerosurgoen, told me I only had maybe 2 years to live...I left her and went to the city. Hope I can beat this off and you too. I had about a 4 cm tumor in my cerebellum removed then radiation to my head! Crazy. I had 12 rounds of Taxol. Never chemo again. I am going holistic and take Femara and get a shot and may have my ovaries removed.
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I didn't like it but it became easier each time. The cyberknife is really fast but you wil be a bit uncomfortable. It is just way better than that chemo crap! sorry for my language. I will never go back to that poison. I loved my radiation oncologist! He made me feel like he would kust keep zappiing my cancer if it came back too! and I believe him and i am still alive.(been through this since 2010) I did it and so will you! Good luck honey. I am 41.
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I just finished 10 rounds of radiation to the half back of my head a couple weeks ago for dural lining mets. The dural mets were causing me severe pressure headaches. I am really happy to say the severe headaches are gone. My Dr. has reduced the steroids and I will be completely off of them in a couple days. I was still getting mild pressure headaches, probably from swelling. Last night, though, I developed a more significant headache that kept me awake, it continued this morning and it was quite painful to bend over. I took more pain meds and thankfully it's back to manageable. I am thinking it is still from swelling....one nurse told me that some people have to be continually on a small dose of steroid after brain radiation.
Wondering if pressure headaches are just a long-term side effect of brain radiation?
Blossoms0 -
Dear Blossoms,
Ive only had the SRS or targeted brains rads and fortunately have not had headaches. But the NS team says they use decadron, prednisone, whatever steroid, to control swelling which may be causing headaches.
Thing is, we have so much stress and other factors that can cause headaches. I take lortab and sleep!
Any way, the very best of luck to you. (((((Blossoms)))))
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Thanks K-Lo. I might ask my Dr for Lortab. I definitely have been lacking sleep. I had been using Adivan for sleep, but it only lasts 4-6 hours. Here's hoping that the radiation is effective and no progression for many years. My oncologist said he didn't want to scare me, but said because the dural lining is connected down into the brain stem It does cause them concern.
I wish everyone many years of progression free time. Hugs to all (((()))).
Blossoms0 -
Hey gals,
Dropping in to say hello. I had cyberknife on Wed this week and it went fine. It was a little strange having that robotic arm staring me right in the face and moving all around, like I was in a science fiction movie or something. I'm enjoying the extra week of no chemo, amazing what a little break from chemo will do to lift your spirits.
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Hi Nancy.. Been a while im shocked to hear you just underwent gamma knife this week.. Ive joined the brain mets group myself.. I'll be having Gamma knife on Mon. morning to remove the new 4mm met i have to the cerebellum and another 2cm. met i have on the top left side of my skull thats causing pressure on my brain.. Im also beginning xeloda next Fri. as it seems it also has now raided the right lung, livers growing again and bones have not only doubled in size but have multiplied by many all in 2mo. time!! I'm trying to be positive but i do know deep down this is a huge game changer in my long term prognosis.. Do tell how is the gamma? My Drs. make it seem so simple n say very little pain after or during but it sounds scary to have screws drilled in my head to say the least..
and hugs to you all hope everyones doing well.. Tammie0 -
Tammie, I'm sorry you're dealing with progression on several fronts. As for gamma knife, I had it done in October on three small mets--2mm to 4mm each--and it was very easy. The pins they put in your skull don't hurt much at all. First the nurse gave me Ativan to make me calm and relaxed. Then they numb your forehead and the back of your head, so all you fell is a little pressure when they put the titanium pins in. The worst part was that they put these plastic bars in my ears (picture sticking string cheese just inside your ears only it's hard material) to kind of rest the frame on them while getting it square. It seemed ridiculously primitive given how high-tech the surgical procedure was. From there, it was very easy and I slept through it all. I made the mistake of asking for more Ativan before the procedure, but I really didn't need it. I'm not claustrophobic and wasn't anxious, but I was just unsure of what to expect. I got home midafternoon and slept from about 4 p.m. until 9 a.m. the next day. That really wasn't necessary. When they removed the frame and pins, I did have a pretty bad headache, so I just chilled for a while and took some Tylenol. The headache lifted, and I only had some tenderness where the pins had gone in. After a couple days, I couldn't even see where they had been. Three months later, a brain MRI showed that one met is gone and the other two are a lot smaller--and there were no new mets.
Good luck to you.
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Ty Surly.. you've just confirmed all ive been told.. Ironically i'm more frightened about whether or not the chemo is gonna work on this lung and liver thing.. I keep fearing whether or not Xeloda will be strong enough.. Guess only time will tell... Thank you again for your reply
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Hey Nancy, tammie, surly
Nancy I think they did that to
me once: I had a mask and they called it the linear accelorator? Worked wonders on my last difficult area that gamma couldn't reach.
Our gamma knife team uses a long acting novocaine type drug; I was a numbskull for 2 days.
But I had great fear the first time that it would wear off and these pins and frame would be torture. So I don't blame you for taking more Ativan or versed. Hell, both my DH and I slept after that experience!
Wonderful technology and we are lucky.
Dear Tammie, most folks on the Xeloda thread came to learn that it is serious chemo. You are taking it more continuously than IV doses. It can pass BBB and they can turn the dose down briefly or permanently for bad SEs.
Buckets of good luck to all.0 -
Hi all Cancer Sisters:
So far this journey has been frustrating to say the least. You have your family on one side saying stop working, take some time off from the stress of work, which has been very stressful this last year. I was diagnosed on 3/26 and have CT and bone scan which were clear (Thank God). I have talked with my Oncologist once on the phone for a few minutes. Just very confused. I have a appointment with Oncologist monday. I live in a small rural area and have limited options. So I sit backon steroids and wait. By the way I work as a nurse and have a lot of lifting, bending ect. I do have headaches, motor problems with a lg Cerebellum tumor that is growing into the other side. Plus my sister wants me to Fly to Florida to stay and relax there. Thats a 8hr flight each way. I'm not is emotional as I am frustrated. I slept 3-4 hrs and have been up since 4am. I'm on call so I may have to go into work at any moment and hate my Job. Sorry for the rant.
Koda
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Koda, I feel your agony. I know what you are going through.... 3-4 hours sleep at night and always that 4 am wake up call. I can't imagine how you are managing to work. I stopped working in January and I can say it was the best thing I have done....it took away stress I didn't need. I wish you luck with your appointment on Monday. Hope you get into treatment soon. Sending you hugs (((())).
Blossoms0 -
Hey Koda, feel free to rant away here, we understand. The work question is a tough one and there isn't a one-size-fits-all solution. One thought - can you just take a month or two of FMLA while you get your treatment plan in place and can take a moment to catch your breath?
Tammie - good luck with gamma knife tomorrow. I actually had cyber knife last week, but had gamma knife about a year ago and just like the gals have said, once the frame is on, it doesn't hurt. Personally, if I had it to do over, I would ask for a double dose of ativan or something stronger to just zone out for the entire thing. K-lo - I forgot until you said it, the numbing medicine made my head numb for weeks!
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Koda, I don't know about the others, but from what you said I feel alarmed.
Maybe I missed something......
Who is addressing this cerebellar tumor? Will you have radiation or surgery? If these are not options at your local place can you get to the nearest NCI Accredited center?
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