Brain Mets Sisters

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.

And who knows what new drugs will come along in 12 months. Just got to keep on going - one day at a tim

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.

barb, how are you doing?

Hugs,

Brenda

so sorry calico

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.

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

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 !!

Hi Goodie and welcome.

NED is the best acronym in anyone's language. I want to wish you continuing good health and good luck.;-))

l

Thank you Rosevalley, you are a constant strenghth too me.

thx ladies for your support

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.

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..

Bosco, Hurray for clear MRI!

Hugs,

Brenda

thx adnerb