Lepromenngeal

smiley47

Has anyone had this condition or can they give me info on it. Just diagnosed and terrified, I believed the tumours are touching on the nerves of the brain. Given 8 weeks to a year to live

NYCchutzpah

I don't know anything but found this when I googled it http://www.brainmetsbc.org/index.php?q=node/44

Last couple of paragraphs sound promising. GoodLuck

CAROL1MAINE

Yes i also got lepto diagnosis with same outcome back in sept 2014. Doing really good had some radiation to neck cervical helped with numbness down arms. I quess i fooled them. Keep expecting new nerve damage but so far so good. Onc put me on temador oral brain cancer drug which crosses the blood brain barrier and thought to slow down lepto. I understand how scary this is I went thru all sorts of emotions but now I can enfoy my days . Best wishes. I am HER- so herceptin was not an option for me.

Heidihill

I'm sorry to hear this. The only thing I know about leptomeningeal mets is that Valerie Harper was having treatment for it before she joined Dancing with the Stars. That was for lung cancer. She was diagnosed January 2013 with the leptomeningeal mets and has lived more than two years. I hope you do as well as she does. We are here for you!

Bestbird

I'm so sorry to hear of your diagnosis, but please take heart.  One lady who was diagnosed with leptomeningeal mets (LM) wrote that her diagnosis was 26 months ago and she's doing well.

Below is a list of medications generally used for LM.  In my MBC Therapies Guide, there is detailed information about LM and related therapies.  You (and others) are welcome to request a complimentary copy of the 100+ page booklet by visiting: https://community.breastcancer.org/forum/8/topic/831507?page=1#post_4391326

I hope you respond very well to your treatment!

LM drug options are varied, and may include the following drugs. Typically, Cytarabine, Herceptin, Methotrexate and Thiotepa are the most commonly used. 

       CranioSpinal Irradiation (CSI)

• Cytarabine (DepoCyt)
• Gemzar (Gemcitabine)
• Herceptin, with or without Tykerb
• Hormonal Therapies
• Leucovorin
• Methotrexate
• Thiotepa (Thioplex)
• Whole Brain Radiation (WBR)
• Xeloda (Capecitabine)

smiley47

Thank you ladies, im in a total depression today. I was given 8!sweeks to live

Maureen813

that's a big blow to be told something like that. Hold strong and prove them wrong. Do you have any anti anxiety meds you can take? When you can calm yourself it can help to thnk more clearly. Hugs and many prayers smile

steelrose

smiley…

I'm so sorry you have to deal with this scary news. I always think it's awfully gutsy to give us time frames like "8 weeks to a year." No one knows. Period. You could respond to treatment and leave that time frame in the dust! Please know that we're all here for you. Tomorrow is a new day, and I hope that you feel a bit better.

Sending love…

Rose.

diana50

Smiley

Sending you a hug. Feeling so scared and sad is real. I am sorry you are feeling so bad. Know we are here.

Bestbird posted some very possible options for Tx. There is hope in the Tx options.

No one knows when we will die. 8weeks to a year is a very long time span from worst case to 1 year. We never know when something new for tx will show up Or how we will respond to treatment.

Keep us posted on oncs recommendation for tx. Sending you comfort via cyberspace. Thinking about you

Diana

smiley47

How are you Maureen? I think of you everyday.

Maureen813

I'm doing ok smiley. Having a nasty time with halaven. Onc just called in antibiotics cause fever and swearing so bad. I think of you often too. My Onc was telling me a girl responded very well to treatment for spinal fluid Mets and doing well. He said they are challenging but can be controlled. Think of you often too. Hang in there

Maureen

WinningSoFar

Dear smiley,

I'm so sorry that you have this progression. I'm praying for you and for all of us.

chris1959

dear smiley

im so sorry to hear this news I know its scary this whole thing is scary .im sitting here with tears in my eyes .keep on fighting like everyone said tomorrow is another day I have been thinking of you often but have taken a break for awhile ..gosh im praying for you tonight please keep us posted ...love chris

Catesmom

Hi Smiley47, I just found out today that I have the same diagnosis. Given 1-2 months, up to 1 year with treatment. I'm seeing a radiation oncologist tomorrow to talk about options. I feel like I was just hit by a Mac truck. I keep crying. I was reading some of the responses to your question, and I guess that gives me a little hope for a little more time. I have a 7 year old, and am going to get her into counseling. I hate this for both of us. Have they figured out a treatment plan for you? Kelly

smiley47

Hi there:

I am on third day of full brain radiation, very tired, very slow but better than last two days due to tiredness and inability to focus. Took extra steriod, one full pill now and at least functioning. I was told yesterday the cells are small and will from past individual brain rads respond to treatment. See onc today I presume she will give me the hard hitting news like the first rad doc did 8-12 mnths. Given up trying to hope, given up trying to stay positive it just is what it is. Maybe I will live a bit more who knows. Sorry to be a downer, with a seven year old it must be hard, mine are 17-13yrs. I wish and hope they can sloww this c down so we can raise are little ones. PM if ever you like

Heidihill

I'm glad to hear it is getting better. Response to treatment is always a good sign!

Romansma

Hi, Smiley and Catesmom, how are you both doing? I've been doing a lot of reading about LM lately and I think there is reason to hope. Many have gotten much more time than they expected. LM tends to be more common with ILC/lobular and triple negative. I have a brain MRI coming up this next week. I, too, have young children and my gut hurts thinking about how you must feel when you look at them. Again, there is reason to hope that you can be around for much longer than the statistics say.

Moderators, do you think you could change the heading so that it could be found in searches better? It's hard to spell, but I think it's leptomeningeal. Thanks

Catesmom

Hi Romansma, Truly nice of you to check how we're doing. I was actually just going to send a message to Smiley. I have only had 1 WBR treatment-had severe headache with first treatment. All CT scans look fine though, so I'm going to be on steroids for a week and try treatment 2 next Tuesday. Will keep on steroids through treatment, and keeping my fingers crossed. Thank you for for the encouraging news on LM.

Hope your brain MRI has good results. Are you having a problem? They don't seem to check the brain unless you have a symptom. Mine, slight headache. Kelly

Romansma

So glad the steroids are helping and you can get back to treatment. I've got my fingers, toes, and even my eyes crossed for you! We are being cautious with the MRI for me. LM goes to Lobular a bit more than others. I had something show up in the epidural space on my T spine and I've got swollen nodes in my neck, as well as weird nerve pulses in my spine. hoping it's nothing, but definitely something to check out.

I'll check back in with you soon to see how you are doing. Hang in there!

SusaninSF

LM used to be a death sentence but I have heard that is no longer true. I have two friends with LM and both got rid of it, one with chemo shunted to her brain and the other with WBR. Perhaps the doctor that told you 8 weeks is not up on the latest research. I would definitely get a second opinion!

mandymoo

Hi everyone, I have just browsed through this thread and I will need to go over it again a couple of times before it sinks in.

Just a quick note about my journey with LM.

I was diagnosed with LM back in November 2012 (I was diagnosed with 3 different types of mets in my brain, one of them being LM) I was also diagnosed with numerous mets to my liver and lungs at the same time and I have had bone mets since May 2012. When I was diagnosed with LM I was given possibly weeks to live.

I was put onto Xeloda straight away, and when I had my scans 6 weeks later, there was a reduction in all of my mets, including LM except for the bones. I was scanned every 3 months for about 18 months when I became NED in the brain , and also NED in the lungs and reduction of mets in my liver. I am still successfully on Xeloda (I think the success rate of X is only about 20% ).

Technology has come a long way even since November 2012, so when Xeloda stops working and LM returns (as there are still little molecules there according to my oncologist) I know that there is more treatment available that was not there a couple of years ago. I know of a couple of people who are still going after 4.5 years with LM diagnoses. Please do not give up. Fingers crossed that you keep going Smiley.

Warm hugs

Mandy

Romansma

Very encouraging, Mandy and Susan, thanks for sharing!

diana50

Susan and Mandy. These kinds of posts help so much. Thank you for sharing. Having a spinal tap Wednesday to rule out LM b/c of 4cm lesion in brain they believed initially to be cAncer. 2nd opinion on MRI believed B9 mennigoma. The spinal tap is to check spinal fluid to be sure. The idea of LM rocked my safety. These posts help all of us dealing with this disease that there ARE tx available and 2nd opinions are so important.

Thank you.

Diana

smiley47

Hi Catesmom:

I read your post about headaches but I did not have that symptom; sorry, maybe someone else can comment. I have been feeling slow, sluggish and weary. Sleepy if I'm sitting around with an aggitated feeling mixed in. Each day gets better but I take hydromorphine and anti anxiety meds and that helps a lot. Sleep from 9 till 3 and then watch some netflix and have a tea with meds. This helps me sleep till 8.

Thank you everyone for your input to my situation and the medical situations you've been through really helps.

MandyMoo thank you so much for your post my daughter just got up looking stressed and sad and I told her about your experience and it cheered her to no end. I wonder if your leps were in the brain fluid and nerves as mine are. I have no symptoms and never had from my cancer it just keeps popping up every 8-12 weeks on scans, only when I was newly diagnosed did i have bone pain slightly. They are supposed to be tiny in the brain too

smiley47

Dear Romansma:

Thank you for your research, I'm so in shock i cant even say the med word let a lone do research. I hope everyone is right and i get to raise my youngest to 18 thats all I ask of god

Catesmom

Smiley, I just posted on another thread to see how you are doing. It sounds pretty good overall I think. Did they end up putting you on steroids? I'm on them now and they make me feel pretty good, but also have the inability to fall asleep. Staying up late. Do you wake in the middle of the night because of pain? I hope you continue to feel better and better. And wasn't that great what Romansma wrote! Kelly.

mandymoo

The only symptoms I had were headaches, but I thought that was due to stress and occasionally I felt a bit dizzy but only for a second or so. These symptoms were only about a week or two before my scans. My LM is on the right side of the brain in the meningies near the temporal area if that helps. We are all so different with each cancer/met also being different so what works for one person may not work for another person. Bu being diagnosed with LM now instead of 3 years ago, you have more chances of living with LM or even beating it.

Warm hugs

Mandy xxx

Maureen813

When I was being tested for LM my onc said several times he's had patients with complete response after 2-3 treatments with the shunt. I didn't have LM but had 3 gamma knife procedures in 3 months for multiple Mets and my last scan is clear. Even the neurologist was surprised. Point is this can have a good outcome.

Love

Maureen

diana50

yes. There are good outcomes. Spinal tap for me Wednesday. Tx options are there. Praying for my sisters. HOPE is very positive outlook.

Romansma

So glad to here from you Smiley and happy you are coping. Hang in there!

Diana, I've got everything crossed for you too that this is B9. You've had enough to deal with this past year!

Happy for you, Maureen, that things turned out well. Hope you are enjoying your summer!

So many reasons to hope and have you ever noticed how good it feels when you allow yourself to hope?

Maureen813

hoping and praying the spinal tap goes well and is B9 Diana. You need some good news. When they tell you to lie flat please follow their instructions to avoid a headache. If you get one let them know so they can treat and ice packs for the area for the headache. It worked wonders and got rid of the headache for me.

Hug