My mom has diagnosed leptomeningeal carcinomatosis - 1252736

david88
Posts:8

My mom was hospitalized 4 days ago due to following symptoms: nausea, vomiting, trembling, difficulty hearing and speaking, and she couldnt walk. She had breast cancer surgery on 2010. After surgery and chemo treaments, she was completely cured but she was diagnosed again on early 2012. It had been spread to some bone structures and mainly on river. She was going through chemo once again for 6months and all of sudden she collapsed with those symptoms a week ago. They took a mri of her brain and they said it may be leptomeningeal carcinomatosis. Shes too weak to get physical treatments right now and i know this disease will take her life away but i want to try best to save her. She lived poor and sad life thats why this situation hurts me so bad. If she somehow she get cured then she can go back to chemo for other cancer so problem right now is leptomeningeal carcinomatosis. Is there any treatments for leptomeningeal carcinomatosis besides chemo and radiation? Such ad pills or injection? I heard somthing about tarceva? Plz give me good answer please. She can not pass away right now. It will b unfair. Oh also doctor said his not 100% sure if its lc. It may be the infection that is showed on mri. Can jus a infection causes those symptoms?

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Reply # - January 18, 2013, 06:30 AM

Dr West
Posts: 4735

I'm very sorry to hear about her recent problems. It's possible it would be an infection, but those symptoms and overall picture do sounds worrisome for leptomeningeal carcinomatosis. It sounds like she doesn't have any history of lung cancer, so I would be very doubtful that Tarceva would be helpful outside of the setting of lung cancer, and very possibly only in lung cancer with a very specific mutation called EGFR.

It is sometimes possible to inject chemotherapy drugs into the fluid surrounding the brain, and sometimes patients with breast cancer causing leptomeningeal carcinomatosis will respond to that. Unfortunately, this complication is typically very hard to treat effectively.

Good luck.

-Dr. West

Reply # - January 18, 2013, 01:17 PM

david88
Posts: 8

Thanks doctor west for taking time to answer my question. I have 1 more qustion to ask. Today we found that she has something in her eyes. It looks and feels like jelly. Its covering whole bottom part. We tried to take it out but its not working. Do u have any idea what that is?

Reply # - January 18, 2013, 03:03 PM

certain spring
Posts: 762

Hi david88 - this sounds as if it might be unrelated to your mother's cancer, so it may be difficult for an oncologist to say what it could be. You need an eye specialist but since your mother has so much else happening, it may not be the most important thing at the moment. It doesn't sound a good idea to touch her eyes.
I'm really sorry your mother is having these problems, and I hope very much she does not have leptomeningeal carcinomatosis. The experimental treatment you heard about involves giving high doses of Tarceva (erlotinib) every few days. However as Dr West says, Tarceva was developed for use in lung cancer and so may not be suitable for your mother.
It is hard to bear, but nobody can save another person from cancer. I am sure you love your mother very much, and I hope her condition improves.

Reply # - January 18, 2013, 11:36 PM

laya d.
Posts: 714

Hi David:

I also wanted to join in saying how sorry I am that your Mom and the rest of you are going through this. . .I hope/wish/pray that what the doctors are seeing is, in fact, infection, and that your Mom's symptoms resolve real soon.

Laya

Reply # - January 19, 2013, 11:37 AM

Dr West
Posts: 4735

David,

We're happy to try to provide good information on general topics in cancer that can help a broad range of patients. However, we can't provide personal guidance for people who aren't our patients. Especially for issues that aren't clearly related to the cancer, but even for cancer-related issues, the local doctors need to be the primary people to seek information from.

-Dr. West

Reply # - January 20, 2013, 05:57 AM

carrigallen
Posts: 194

Unfortunately, it is not uncommon for breast cancer to cause leptomeningeal spread. This is basically when cancer cells coat the lining around the brain. This is often a very difficult condition to treat in patients with solid cancers, like breast or lung. Since there are a lot of important structures in this area, the symptoms can sometimes be disabling.

Our options are usually limited in this situation, but they include whole brain radiation. Most pills or intravenous chemotherapy treatments do not achieve ideal penetration into this meningeal space. After whole brain radiation, some physicians will consider intrathecal chemotherapy (chemo administered into this meningeal space by a spinal tap or through a port). However, this type of treatment does not have a high level of evidence to support it.

An infection can sometimes appear similiar to leptomeningeal disease, it depends on the context. A diagnostic spinal tap can sometimes, but not always, be helpful in distinguishing the two. Features on a diffusion-weighted MRI can also sometimes be helpful, but high-quality MRI can sometimes be challenging in those who are not alert enough to follow directions. Even infections in this area can be sometimes be difficult to treat successfully.

Based on your description, it sounds like she is really sick and bleak condition. I can't imagine what your family is going through right now, let's pray that things turn out for the best. God bless.

Reply # - January 21, 2013, 06:29 AM

david88
Posts: 8

One more thing. She is currently taking aggressive antibiotics since doctors think that it might b the infection. But the thing is shes been sleeping for 6 days now. She only woke up for 30min. also day before and day after she was hospitalized is whole different story. She had little difficult hearing and speaking but she walked fine by herself. But now she cant even see, speak or walk. She is sleeping all the time. It somehow makes me think that the hospital is trying to shorten her life. All this cant happen overnight. There is definitely somthing with what they are doing to her. Even if she has cancer in her brain, she cant become like this overnight. She was in pretty safe condition except hardcore nausea. I bet she wouldve been fine if she didnt get hospitalized. This is driving me crazy. My mom is most important person in my life and i have feeling that she is dying cuz of things they r doing to her rather than by cancer. Am i misunderstanding? is this common case? I feel like im going to die too. Plz provide me some suggestions.

Reply # - January 21, 2013, 09:18 AM

catdander
Posts:

I am so sorry your mom and you are going through this. I don't want to give my non professional thoughts on symptoms so severe. But it sounds like it could be aggressive lepto. From what I understand it is a devastating complication.

I will contact a doctor to read your last post of symptoms. I would hate for your mom to not get palliative care that may help make her more comfortable. Though it doesn't sound like she's in pain or frustrated. You on the other hand do need to have someone on your end that you can trust. Again understand I'm speaking from a very small untrained understanding of the subject. You should hear back from a doctor within a day.

Janine
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Reply # - January 21, 2013, 02:15 PM

Dr West
Posts: 4735

David,

I'm also very sorry for what's happening with your mother, but one other thing I have said and written about leptomeningeal carcinomatosis is that it can be associated with about the fastest clinical decline we ever see in cancer. Having someone experience a dramatic decline from neurologic problems over a course of days is very unusual, but if anything can do this, leptomeningeal carcinomatosis can. I would not presume that the hospital is doing something to worsen her condition.

-Dr. West

Reply # - January 24, 2013, 03:05 PM

marisa93
Posts: 215

I want to say how sorry I am to hear what your mother is going through and what that is doing to you. Cancer is a horrible disease and it's awful to watch what it does to a loved one. Hoping for the best for you and your family.

Lisa

Reply # - January 25, 2013, 01:00 PM

david88
Posts: 8

Sadly, she passed away peacefully on tuesday. But the thing is they are not 100% sure abot what actually killed her. Infection or lepto carci. The day before she passed away, they found out that she has pneumonia. She was taking 4 to 5 different kinds of antibiotics through iv and day she passed away she was having hard time breathing and she made loud noisy everytime she breathes and also shortness of breath too. It sounded like somethings stuck in her throat, like fluids. I mean even if she had lepto carci, she wouldnt pass away in a Week? What i think is that all those antibiotics fluids built up in her lung and heart and killed her. Am i wrong? Or is it possible? I mean they gave her 4 o 5 different types of antibiotics. Even normal person can not handle that, right?

Reply # - January 25, 2013, 01:36 PM

catdander
Posts:

I'm so very sorry your mom has passed. I know how close the 2 of you were and I know there are no words of comfort to offer. So know I will keep you in my thoughts and hope for you.
Lung cancer is such a horrible disease that can cause so many difficulties that can lead to death. It sounds like she passed because of her cancer. Again I'm very sorry.
Janine

Reply # - January 25, 2013, 02:15 PM

cards7up
Posts: 636

David, I'm so sorry for the loss of your precious mother. I know how hard that is. I really don't think it was anything the hospital or doctors did or didn't do. It's the nature of the beast called cancer. Pneumonia would be a complication from her cancer and therefore it was probably a combination of both. As for the decline due to lepto, I think Dr. West answered that above. " but one other thing I have said and written about leptomeningeal carcinomatosis is that it can be associated with about the fastest clinical decline we ever see in cancer. Having someone experience a dramatic decline from neurologic problems over a course of days is very unusual, but if anything can do this, leptomeningeal carcinomatosis can. I would not presume that the hospital is doing something to worsen her condition." May you find comfort in your love and memories. Take care, Judy

Reply # - January 25, 2013, 07:27 PM

Dr West
Posts: 4735

I'm truly sorry about your mother's passing. Idon't know the specifics, but I assure you, as I said above, leptomeningeal carcinomatosis can lead to about the fastest decline we ever see in cancer. As for her breathing difficulties, that's the breathing pattern that people have before they die, almost no matter what they die of. It's called agonal respirations, though it is not felt to be uncomfortable. Typically, people are just in their last hours to days of life when they experience this. But it doesn't mean that she died from lung complications from the antibiotics she received, and I wouldn't expect that to be the case.

Honestly, though it seems you are very resistant to the idea, I would say that it's extremely likely she died from leptomeningeal carcinomatosis and that the doctors couldn't change that.

-Dr. West

Reply # - July 18, 2013, 11:30 PM

dantay112
Posts: 6

Is there no one that specializes in LM? I know this is not modern med, but what are thoughts on hemp oil? I've been with this diag. for a week and am just beside myself. I'm not ready to die from this nasty beast. I guess I'm going to try Irinotecan after full brain rads that I started today. If this doesn't work for me then I'll ask for the Xeloda. I feel perfectly fine! no protein in my spinal fluid which is a good thing...got to find my fight! Dr. West thank you so very very much in taking the time to answers these posts and mine as well. It means more then you'll ever know!

Pam

Reply # - July 19, 2013, 09:18 AM

sherrys
Posts: 212

Pam, Although I have nothing to offer as far as your questions are concerned, I wanted to tell you that I've been thinking of you since I read your first post. I really and truly hope for you that you can be treated. You're correct in that lung cancer is a nasty beast. I hope you can beat it for a lot longer!

Reply # - July 19, 2013, 05:01 PM

Dr West
Posts: 4735

I don't know of any cancer specialist whose expertise is especially in LMC. There are some "neuro-oncology" specialists, perhaps just 1-2 even in a larger city, so pretty uncommon to rare, but that's probably the closest you'd find to someone with that focus.

As for hemp oil, I don't know of any evidence to support its use in this setting: I'd put it in about the same range of likely benefit as prayer as an anti-cancer therapy, barring some actual clinical evidence that it's beneficial.

-Dr. West

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