Brain Mets Sisters
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has anyone experience with leptomengitis (think I spelt it correctly) I just got my MRI results back and its spread to the nerves in the brain. DR told me with treatment I myay have a couple of months. Anyone eles similiarplease help
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smiley, so sorry to hear this. I don't have any experience of leptomingeaitis ( or however you spell it), although my onc has suggested I may get / have it because I had some visual disturbances. Seems in no hurry to do tests which he said would be a biopsy not an MRI. Is your Dr sure about diagnosis?
I don't think statistics are reliable - we all react differently to disease and drugs so what treatment is he suggesting?
Hugs and hang in there.
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whole brain radiation on Monday, the new rad doc is more positive but said it would probably finish me off in 12 mths
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And who knows what new drugs will come along in 12 months. Just got to keep on going - one day at a tim
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I just researched this met. They can treat with inter cranial chemo. They would need to do a spinal tap to confirm this diagnosis. Concerning timeline, doctors are incorrect all the time. It depends how you respond to treatment.
I will say a prayer
Love
Maureen
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Smiley - good luck w the WBR on Monday. I had a course about 12 months ago for brain lesions. Apart from fatigue and losing my hair, and maybe a slight worsening in hearing (although that was more likely drugs), it was fine. I wished I had shaved my head pre treatment as they wouldn't let me shave it once started (too sensitive skin) as watching it fall out was miserable. Looking forward to hearing you sailed through it.
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smiley, I am also wishing you good luck on the wbr! Hope your are one of those who have little or no se's.
Hugs,
Brenda
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barb, how are you doing?
Hugs,
Brenda
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Hi, girl friends, brain MRI has confirmed that the brain mets are spreading. I'm not interested in extending my life, but the onc says if I don't get this treatment, I will develop other "neural deficits." Right now, my left arm and hand are numb, weak and clumsy. Fine motor is bad, making it difficult to do most anything, such as typing and buttoning buttons. Hubby has to put my jewelry on for me. I know this decline may not sound like much, but it's a huge loss of freedom for me.
So I meet with the radiation onc tomorrow about whole brain radiation. i've read this board a bit and the major complaint seems to be fatigue. I also heard that hair does not grow back, and that steroids may be necessary to control swelling. Any other experience you can share?
Thank you for being here and all your wisdom born of experience.
xoxoxoxoxo
Calico
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so sorry calico
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Hang in there, Calico. I also heard that the WBR takes time to work, like you may not see the whole result after the first MRI. Susan in SF and some others have had good experiences with WBR. Good luck!
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Calico, I am sorry to hear about your WBR.
I had WBR in October 2014. I had all the side effects you mentioned. The fatigue was fairly severe for several months. It has lessened now, but is still ever present. I just have to do what I can, and take care to not overdo. My daughter took care of me for five months, until my strength returned and I could care for myself. I also have had memory problems. It is as if I have holes in my memory, when I try to retrieve random memories, I can not access them..
I had thirteen tumors/lesions when they did WBR. Seven of them disappeared in the past seven months. Four have reduced in size. Two were found to have increased in size on my MRI several weeks ago. I will undergo Cyber Knife this weeks and next week to treat the two that have grown. They are also treating one lesion which is positioned in a potentially dangerous spot deep in the cerebellum.
Although the past eight months have been grueling. I am incrementally getting stronger everyday. I am grateful to be able to live life.
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Thank you so much for your replies, and I'm so sorry, Wndrwmn, that your fatigue has been so overpowering and persistent. Hugs and prayers flying your way for quick resolution.
The main side effects the radiation onc talked about were "mild headaches" and
fatigue. Lots more possible ones, but that's what they mostly see, and
these resolve after the 10 treatments of radiation stop (or so they say). They may have
to put me on steroids if my brain swells. I'm supposed to call them if I
notice any changes and they'll prescribe the steroids then if it seems
appropriate. As you'll understand all too well, my experience is that this stuff often isn't the walk in the park that they describe.I told my medical onc I'd hoped the cancer in the liver would take me out before
something like this happened, and he said I didn't get to have that much
control over my life. It doesn't seem to be asking for much.Thanks again, and big hugs to all.
xoxoxoxoxoxo
Calico
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Thank you to everyone for your support. I'm exhaushted and feel slow and old from all the shocks this last two years. How much can a body take. Dr. told me the mets are small and hopefully will reponde to treatment. Up the dose of steriod so not too tired and its helping. Nice warm weather helps too. Guess I will cancel holidays for kids and I and maybe start looking at giving them up to their father. Cancer takes everything, I have always tried to stay positive and show the children that a good thing can be made from negativity, so I put a garden in; it looks lovely. Off to hosp now
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Calico, Barb and Smiley- good lucky to you all. Prayers for all of you sisters.
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Calico, Barb and Smiley -sorry to hear what you are going thru. Please try and enjoy every day as much as you can... I know its easier said than done. I say the same thing to my mom who is HER2 positive, multiple brain mets, has had stereotactic as well as WBR. She now suffers from radiation necrosis as well as the expanding, active brain lesions(at least 3 we know of). She is rapidly deteriorating and more often than not finds it difficult to engage in a conversation, putting sentences together, cannot walk anymore and has a full time caregiver. She lives in and is being treated in India..and I live on the east coast in the US. I visited and saw her two months ago for a couple of weeks but it looks like I may have to make another trip at short notice soon.
Good luck to you all and keep fighting ! I sincerely hope that you keep beating it and keep skewing those statistics to the positive side :-) !! You go girls !!
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Hi Ladies,
I'm new to the boards, but have been reading for awhile. I had a craniotomy in February to remove what 2 neuros and 2 oncs thought was a cavernoma in my temporal lobe. Turns out it was a BC met and had probably been there since my original diagnosis of stage 1A in 2014. I had GammaKnife to the surgical bed in March. My follow-up brain MRI was yesterday and there is NED in the tumor bed or anywhere else in my brain. I also had a clean PETscan in April. I'm so thankful. We will continue to monitor with scans every 3-4 months and I'll take my Tamoxifen and pray to continue to remain NED.
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Hi Goodie and welcome.
NED is the best acronym in anyone's language. I want to wish you continuing good health and good luck.;-))
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Congratulations on your NED situation, wishing you continued peace. And success!!
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l
Thank you Rosevalley, you are a constant strenghth too me.
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Hi to everyone here. I am going to introduce myself to this thread as I think this may be the most appropriate topic for me now. I also have lung,liver, and bone mets. I was just diagnosed with leptomenigeal Mets this week. They are small, but definitely there. I had gamma knife in January for a cerebellar met, and now this was found on a follow up scan. I also have a new cerebellar met. My prognosis is very similar to smiley47s. In an hour I will be getting fit for the mask for WBR. I'll start treatments either Monday or Tuesday. I'm pretty sad right now. I thought the lung Mets would be my downfall. I found out the chemo I have been on is helping with all of my other Mets. I have a question, have other people stayed on their regular chemo? My onc was asking me as for quality of life. Thank you! Kelly
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thx ladies for your support
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Hi Kelley:
Your mets and situation is very similar to mine in areas and size. Just finished WBR today and snuggling up in bed to rest . I will stay on Navelbine because it kept everything else so stable but what I will do with the brain I dont know, I'm not Her2 pos, so Spring watch cant use those theries for brain. Thanks Bosco for thinking of me and worrying, its nice to know people know who I am even on this bladted email stuff. Hate tapping away to communicate, not trendy enough I fear
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Catesmom
I had WBR almost a year ago for several brain lesions after a craniotomy to remove the largest. Had 2 months convalescence. I also restarted chemo (had stopped 3 months earlier) to control any other disease including Avastin to support brain control. My onc's view was no point clearing your brain just to let the other stuff run rampant.
Subsequently developed one small bone met (for which I had a little radiation) and lymph nodes. Changed Xeloda to Gemcitabine and Cisplatin, continued Avastin and Zometa (for bone) and added new immunotherapy drug Keytruda. Results have been good with clear brain MRI last week and pet/ct scan this week showing only 2 lymph nodes and reduced activity. Almost clear.
As to QOL, I have been pretty much able to work throughout which I treat as my indicator. Fatigue has been my main side effect but not overwhelming.
Hope that's helpful.
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How are you Barb? I just finished WBR, feeling less tired today but wondered how your treatments and feelings are? You've been a constant support to us all and I appreciated all the time you have given to me with your posts over the last couple of years
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Hi everyone,
I had my first of three Cyber Knife treatments yesterday. It went fairly smoothly. Treatment lasted for half an hour.
I didnt feel anything, other than anxiety through the treatment. Afterwards, I went to breakfast w/ my friend who helps me immensely by accompanying me to the tough appointments, then home. I went out quickly like a light and slept for four straight hours The rest of the evening, I did not feel normal. Just slightly off.
`I am at a loss to describe the feeling adequately. Had a mild headache through the night. I feel more normalized today. Very little fatigue. I have been clearheaded all day.
Next week I have two more procedures. I am hoping the treatment works on these brain lesions and they disappear. And also no new ones pop up..
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smiley hi. I have had a tough time w the rads. Hoping to recover soon. Thx
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Bosco, Hurray for clear MRI!
Hugs,
Brenda
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barb, hope you get the same wbr results are Bosco.
Hugs,
Brenda
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thx adnerb
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