Leptomeningeal Metastases or Carcinomatous meningitis in Brain

LindaE54

MameMe - Thinking of you today and hoping biopsy is going smoothly. Holding your hand in spirit and sending you hugs. Waiting to hear from you when you feel up to it.

MameMe

Linda, How is the radiation working out? Thinkign of you as you do this treatment

MameMe

A quick report about throat/tongue biopsy. I went in for it early yesterday, and they treat it as a surgery, so was gowned up, medicated, treated very nicely, and woke up effortlessly in recovery. I was home by 10:00 a.m. I was not in good shape for anything, as I felt like I had strept throat, with a dull headache and depression. I slept a lot, used advil and decongestants and eventually called it a day. Today I am far better, went for a walk and am able to eat and am less depressed. They tested for cancer, but also for various infectious things. Will let you know what I find out.

LindaE54

MameMe - hoping you get good results soon!

Rads are done, it went well but more nausea than I expected. No headaches, woohoo! I saw another RO this morning who thinks there will maybe be some improvement to the swollen tongue but not making any promises. If any improvement, it should happen over the next two months. At least they are confident there will no more damage in that area.

MameMe

I find myself thinking that its just as possible to get some improvement in tongue as it is to have it linger on as it is, but its kind of magical thinking. Who cares! I'm doing it anyway

LindaE54

Hi MameMe - did you get results of biopsy?

MameMe

Nothing yet. The biopsy was last Thursday, so probably it will take a few more days. I am having head pain again, which concerns me. Mostly left side but some on the right, it follows nerve pathways it seems, and can be quite painful. I used ibuprofen yesterday all day, which helped, but woke up with it this a.m. again. I just dom't get it! I,ll call one of the docs and see if I should go back on prednisone.

How are you doing, Linda

LindaE54

Doing ok I guess, rads caused more swelling to tongue and now have oral thrush and canker sores on tongue. I'll start the magic wash this afternoon, pharmacist is preparing it. Glad rads is behind me, plenty of nausea and vomiting during that week.

Babsy

I was diagnosed with LM last week after having a stroke like incident. Have extensive bc mestastes in bones and bone marrow. It's a real blow, and I don't know how long I can keep on fighting. I just feel that I've got to find my peace with this. Hugs to all in the same position xx

MameMe

Hi Babsy, I am not dx'd with LM yet, but in process of ruling it out. I can relate strongly to your sense of being sick of being up against yet another fight. THat is so unfair, to be already struggling, and then have things get more challenging. Hang in there, don't make any major decisions right away, and keep sharing. People are really helpful and understanding on BC.org. Hugs from Maine

Kaption

Babsy,

I'm so sorry. I do know how frustrated you are. I'm in the "we're not sure" LM category and it's frustrating and sad.

Keep gathering information. Others on here have said it's important to have a neurological oncologist. (Think that might be what I need to)

Hang on to those you love.

Hugs and prayers to you. Keep checking in with us.

MameMe

Yesterday I finally got preliminary biopsy results, and no cancer was found in the throat neck area. What they did find was more indicative of Lyme disease, so I will be starting Doxycycline, it looks like. I will get more details today. Thanks to you all for support amd caring. Hugs to all. Mame

LindaE54

MameMe - Well thank goodness it's not cancer related! Isn't Lyme the last thing you expected? Do you remember being bitten?

Babsy

Thanks for your replies and support, it means a lot. With the other bc forumsthat I'm on there doesn't appear to anyone diagnosed with LM with brain mets. Good to talk to people who understand. For those who are suspected, hopefully they're wrong. It's amazing the other things we can catch, Lyme disease, well at least they've correctly diagnosed it. Cyber hugs to you all ((()))) x

Kaption

I guess I'm leaving this board, at least for now. My RO feels sure the lesion by my right eye is not in the lining or fluid or I would be having much more severe symptoms by now. The MRI does not give us a clear indication of what layer it's in. So this is based on lack of symptoms. I still have pressure and tight on that temple and cheek, but no real change since rads

It's truly a relief to hear, but I just can't seem to relax just yet. They will keep a close watch over the brain area.

Hugs and prayers to all here.

Babsy

Kaption, good news, I'm so pleased for you. It's hard to release the stress that has built up and it's sometimes like holding your breathe to the next thing that raises its head. I remember screaming in my head when I was having my MRI brain scan, I wished I could have done it out loud!! Maybe I will next time, ha ha.

Kaption

Thanks Babsy. It is a crazy ride. There still a part of me that won't let go and accept the better news. Then yesterday I was having one of my exhausted days and got up from a short nap extremely dizzy. But, I had just taken my steroid and maybe without enough food. But, it was scary. I feel better today.

MRIs are so noisy you probably could scream. If you could hold your head still. Ugh!

Kaption

So sorry, Mammaray. That sounds extremely frustrating. What does your oncologist say?

(Hugs)

Redmond

hi all,

I have ended up with brain mets and they say I have LMD based on the MRI. I am going to try interthecal herceptin. Has anyone had any experience with this?

Goodie16

Hi Redmond,

Head over to the Brain Mets Sisters thread. Look for posts by Agness. She has a ton of information/experience on LM and the interthecal herceptin.

Best wishes.

Purplegurll

Hello everyone, I was diagnosed last week with LM following a brain MRI. I have a follow up tomorrow with my oncologist. For those in treatment, could you please describe what that involves? Thank you so much.

Purplegurll

Thank you Mamma Ray. I think they are talking about the Ommaya port. I don't know which chemo. I'm presently on halaven. I've also read references to radiation. I'll know more this afternoon.

Priyank123

Hi guys,

I would like to inform you that my mom has completed almost 3 yrs since she first experienced migraine type of headaches and later on was diagnosed with the crazy leptomeningeal Mets. I was totally clueless and super afraid at tht time but posts by Mandymoo and Agness were a real source of inspiration for me as well as I came to know about xeloda from here and it has worked miraculous well along with intrathecal methotrexate (IT MTX) for my mom. She is completely living a normal life but with the usual side effects of the medicines. Also she has almost lost eye sight in one of her eyes coz drying of some nerves but it's not gone completely. She is doing fine and she is scheduled to undergo her yearly brain scan this month. She is disease free in rest of the body. Seeing her nobody would ever know that she has these deadly Mets in her body. She gets one injection of IT MTX a month and is on Xeloda two weeks on and two weeks off. We try to give her more time to recover if the side effects are severe before starting the next dose of Xeloda and IT MTX

Daniel86

A few weeks ago I bumped into this clinical trial. It's one of the few I have ever seen that explicitly mentions lepto mets as the target of the study.

After reading up y'all's experiences, it is not surprising they are trying a combo with Xeloda.

https://clinicaltrials.gov/ct2/show/NCT0350979

mandymoo

Priyank, thank you for keeping us posted and hopefully others may get inspiration for your story about your mum. Yes and I am still going strong, although I have had progression to lungs and I have changed chemo twice, I still look and feel great with being NED in the brain for such a long time now. Technology has come a long way and the information out there regarding Leptomeningeal mets are very discouraging but they are old as well.

I know of at least one other lady who has been going for almost 3 years now and she is also leading a normal life.

hugz to all.

Ihopeg

Hello I was diagnosed with leptomeingeal disease today. Did mri of spine Thursday and Friday got a call from Onc that I should go to er immediately. Then had a brain mri too and spots in fluid there too.The dr said I have a few months or 2 years. My life ended yest. Should I get second opinion? I am in Paoli hospital in Paoli. moderators or members please help! Thank you so much. Ilene

Ihopeg

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Partyoffive

Ihopeg:I’m so sorry to hear about your diagnosis-I do not have lm but I do live very close to you in landenberg pa. There is a great bc specialist at univ of Penn-dr fox and my onc is at Hopkins dr fetting. Please let me know if you want to talk just pm me. I’m sending positive vibes your way and hugs.

Kristin

Ihopeg

Thanks for replying. I am going to see Dr Fox at Penn tomorrow, for second opinion and hopefully stay there. Thanks for the vibes. Take care, Ilen

Ihopeg

thank you for the encouraging news. I was diagnosed stage 3b breast cancer in 2006.i have been having pins and needles in my feet for two months. No other symptoms. Now after testing they tell me I have leptomeningeal disease. I was at work Friday and now put into hospital immediately after mri. So devastated,,, any help or advice will be greatly appreciated
Ilene