May 19, 2014 01:13PM Janlee5802 wrote:

 Don't know how to start out but here it goes...I had my third intrathecal on Wednesday, May 14th.  I'm also on xeloda.  I developed the hand foot syndrome and by Friday I had abdominal cramping and diarrhea.  Still suffering from the xeloda side effects.  I can't eat or drink very much.  When I change positions, I have whooshing and sometimes a headache.  I have to grab a wall or counter to stabilize myself until the episode passes.  Will this pass?  My onc had me stop the xeloda until I see her on the 28th and she will determine what my new dosage will be.  Do you think this is primarily the xeloda?  I'm scared and worried that the lepto is taking over.  What have your experiences been?

May 22, 2014 12:10PM amlg1 wrote:

Janlee Feeling lightheaded could be fluid on brain,thats what happed to me,I would feel like I was going to black out.Finally they put a shunt in and I have been fine since.Of course everyone is different.Feel Better.

Sep 29, 2015 02:04PM Jessica_07 wrote:

Hello everyone,

I have been reading all these comments and I am shocked how great everyone is with helping others during this difficult time.

My husband was diagnosed with lymphoma meningitis in April, after 4 rounds of high dose chemo and an autologous stem cell transplant later, we were just told there is minimal enhancement on his MRI and he is now doing radiation.

He was having terrible headaches and vomiting for 2 weeks straight, but after one round of radiation he no longer has those sympytoms. I am nervous that its still cancer. Anyone with any similarities?

Nov 26, 2015 08:45PM - edited Nov 26, 2015 08:52PM by Priyank123

Hi guys,

My mom has been recently diagnosed with LeptoMeningeal Metastases in the brain with communicating hydrocephalus. She had been diagnosed with breast cancer (ER+/PR+, HER2-) four and half years back. She had an NED status until September when this disease reoccurred at the worst possible place in her body. Surgery is not possible and her doctors think chemotherapy is a better option than WBRT(Radiation). She has floating cancer cells - no tumors. Her tumor markers (CA 15-3) were on border when the relapse of the disease was diagnosed. MRI scan and Lumbar puncture confirmed the presence of cancerous cells in the Leptomeninges. Symptoms like Veritgo/Migraine like headaches have been there since April this year. Body balancing issues have been there since one year. She also had cataract operation of both her eyes last year - dunno if the cataract had any connection with the disease?

She had been treated with Intrathecal Methotraxate (MTX) alone initially and later on Xeloda was added to her treatment. She has completed 12 doses of MTX and two cycles of Xeloda till now. Initially, MTX took a tool on her body. She had to be hospitalized after her first MTX dose because of seizure like instances and dehydration due frequent vomiting and loose motion. The seizure like events were very frightening for us to deal with. I had never seen my mom in such a state! Seizures and other side effects(vomiting and loose motion) of MTX were brought under control through medication. After her sixth dose of MTX, Xeloda (Two weeks On and One week Off) was added to her treatment. Xeloda has caused a lot of water retention in her body, minor hair loss, frequent urination, anxiety, sleepiness, few black patches on her skin and loads of cough. Other than that she hasn't had adverse side effects of Xeloda like the hand-foot syndrome till now. During her one week break she has recovered well and she feels good as well as she is good spirit. She has started her third cycle of Xeloda today- 1500 mg twice a day.

Recently she has started complaining of double vision. Also, she feels weak and tired after doing any activity. She also sometimes complains of feeling of emptiness in her head - as if nothing is there inside her brain and also complains of cramps which start from her brain and go down to her hand and spine. She also complains having trouble with concentration and focus. She is unable to meditate. She does her yoga exercises though. Other than that she has been doing fairly well. Her body balancing issues are gone, her Veritgo/Migraine like headaches have gone, vomiting has stopped completely...all the initial symptoms seem to have been brought under control. Overall she feels good and is in good spirits. Does this also mean that the disease is under control and it has not progressed?

We have done three more lumbar puncture tests or the CSF Cytology tests in the last two and half months, unfortunately the cancer cells are still there in her cerebrospinal fluid (CSF). Are there any tests through which we can do a comparative analysis of the effectiveness of the treatment given to her - like a before & after study??? Is there any way to find out the exact number of floating cancer cells in her cerebrospinal fluid (CSF). What kind of tests does your doctors ask you to do?

Is anyone getting medication to reduce the long term toxicity of Intrathecal Methotraxate (MTX) or Xeloda??

Is anyone using Cannabis to treat their brain mets? Is it effective?

Apologies for the long post:)

May 2, 2017 06:54AM Kaption wrote:

I've posted on other boards, but waited to post here because I just am having trouble understanding this disease. Long story- short. I've had bone mets since 2013. I understand bone mets.

After some numbness on the right side of my face a small lesion was found over my right eye, very near the eyeball. It's on the lining nearly in the fluid. The worst was assumed-that it would be LM. Had rads to that lesion and one month follow up MRI. Lesion reduced a tiny bit. And nothing new seen. From that, my RO believes this is not LM because I would have gotten much worse in the past couple of months. (I'm on Xeloda which is doing a fantastic job on my bone mets). Anyway, RO (who I respect immensely) said LM moves very quickly and there is not much that can be done. But, then I read here and see that some of you are dealing with it for quite a while.

All this to say, my MRI results were great but I'm having trouble relaxing and believing it's over. He is doing another MRI in 3 months to keep a close eye on it.

Such a confusing part of mbc!

Thanks for listening. Really, no one else understands!