Leptomeningeal Carcinomatosis - 1257775

emazuy123
Posts:4

My mother has Leptomeningeal Carcinomatosis. She had breast cancer five years ago, underwent a lymphectomy, chemo and radiation. It's returned as LC. She was complaining about balance, and lightheadedness as early as March or February of this year. An MRI done in late April said imagery was consistent with LC. She's had various tests and consultations since then. A second doctor at a well-regarded cancer center confirmed it was LC and recommended radiation to affected areas, then retesting. Her primary oncologist gave her 1-2 years. The second doctor confirmed things we had read about LC survival times being more like 6-12 months, with individual results varying. My questions is when does this time start? From when she began to have balance difficulties? Or from when a diagnosis was made? How much of this time has gone by already? My mother has rapidly gone from a avid walker, hiker, snowshoer to clumsily stumbling around with a cane. I understand that this cancer is lethal and there's probably not going to be a miraculous turnaround, so I want to have an idea of how much time we have.

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Reply # - July 8, 2013, 08:36 AM

catdander
Posts:

I am very sorry your mother and family are going through this devastating disease. Since there is little in the way of treatment options the care for those with LC are palliative in nature to give her the most comfort possible.
The prognosis figures are averages across thousands of people, it's been noted too that doctors are notoriously bad at guessing how long a patient of theirs is likely to live. With that said the 6 to 12 months form dx figure is more in keeping with LC but it depends on the individual.

I will ask a doctor to comment on your post.

I know you've not ask for this info but you and her other caregivers will benefit from professional help moving forward in helping with your mom's comfort and everyones coping. Hospice has been shown to be the best treatment one can seek out.

Hoping that tomorrow is a better day,
Janine
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Reply # - July 8, 2013, 08:51 AM

dr cianfrocca
Posts: 49

Janine is correct, doctors are notoriously bad at predicting life expectancy and that is even more true with leptomeningeal disease. In general, the averages are based on the time of diagnosis, not the time of symptoms. Unfortunately, there is no "standard" therapy for leptomeningeal disease and options include radiation to areas that are likely causing the symptoms, intravenous infusions of certain chemotherapy drugs that penetrate the blood brain barrier and giving chemotherapy directly into the spinal fluid.

Dr Cianfrocca

Reply # - July 11, 2013, 12:38 PM

belize2
Posts: 16

Consider yourself lucky. When my husband was diagnosed the radiology oncologist said they measure survival in weeks; the oncologist standing in the same room said 'hmmmm, six month'. I could stand either of them and had no faith. They were total lazy screw-ups. My husband lived 2 months because they refused chemo and he couldn't have spinal radiation bc they had just finished thoracic radiation on the lung tumor when it grew back. Worse physicians EVER! Still so angry and upset and it's been almost 7 months. Talk about feeling abandoned - that's what it was like.

Reply # - July 11, 2013, 08:55 PM

bobradinsky
Posts: 144

I am sorry to hear that your mother was diagnosed with LMC. My wife was also diagnosed with LMC in May '13. She was previously diagnosed with stage 4 NSCLC with mets to bones, liver and brain. Her symptoms were headaches, balance issues, unsteady gait, memory loss and confusion, visual problems, and urinary incontinence. She is being treated with Tarciva since she has an EGFR mutation. We began pulse dosing her (1500 MG once per week) and recently changed to 900 MG twice per week. She has shown some improvement in the last 2 weeks.

I am sad that you are going thru this because it is so hard to watch someone you love decline so rapidly. I asked the same question several weeks ago and unfortunately got the same response. This is of small consolation, but I understand what you are going thru and if i can ever be of any assistance let me know. I will be following your posts.

Bob

Reply # - July 16, 2013, 02:52 PM

dantay112
Posts: 6

I'm 44 and was just given a diagnosis of LC. I'm devastated and need help!!! I don't want to die in 2-3 months. I want to take care of my kids like a mom is suppose to. If anyone can help me it would be so greatly appreciated!!!! I'm begging for help. Original diagnosis of bc in 2000. I do have some balance issues once in awhile, one pupil smaller then the other (which prompted the brain MRI) and memory issues, but I feel the memory issues have been there for a long time!

Reply # - July 16, 2013, 04:24 PM

dr cianfrocca
Posts: 49

I am so sorry you are going through this. I think it's really important that you see an oncologist that you trust to help you decide what treatment options are available to for you.
I wish you all the best,
Dr Cianfrocca

Reply # - July 18, 2013, 06:09 PM

dantay112
Posts: 6

Lori I don't know where you are on this, but I got your comment and I thank you sooooo much for you input. Dana Farber wants me to try Irinotecan and if I feel that is not working I'm going to ask for the Xeloda. I have read another post and I think it got someone like over 4 yrs. Thank you for all input in this.

Pamela

Reply # - July 20, 2013, 11:47 AM

lori2010
Posts: 5

Pamela, thank you for your reply. It sounds like you have some good options, and I wish you all the best with your treatment. I have been thinking of you so much and I am sorry you are going through this. I just wanted to connect with you, as LMC is so scary. My mom was diagnosed with it in March. The good news is that it has been 4 months since diagnosis, and she is doing well. She had WBR in April, and last week, the results of her Brain MRI showed everything as stable or even shrunk! She feels pretty good. A bit tired, but I think that is to be expected with WBR. Again, all the best to you. Take care.

Reply # - July 30, 2013, 05:16 PM

emazuy123
Posts: 4

All, Thank you for sharing. It is difficult watching my mother go through this. She has since had a second spinal tap, a PET scan I believe, and two additional MRIs. The spinal taps did not show any cancer cells, but the MRI clearly shows something - something that's getting bigger and spreading. She is now preparing for a biopsy of her right temporal lobe. Imagery shows "spots everywhere", and the neurosurgeon thinks the left temporal lobe will pose the least risk of complication and give us a definitive diagnosis on the makeup of these growths, so treatment can proceed. My mother continues to have difficulty walking. I believe the most prominent "spot" is on the cerebellum which controls balance. Her hearing has deteriorated rapidly. Cancer cells appear to have clustered around the nerve structure going to the ear(s). I have to shout to be understood. I hate to do it because I feel like I'm scolding a child as I raise my voice again and again. She can't hear a thing over the phone, which makes scheduling her appointments a challenge.

When I listen to the doctors talk, I try to read between the lines. I realize they're not going to deprive a patient of hope, and that they're generally going to put a positive spin on the options. My mother seems to find some comfort in this, making decisions about next steps, and believing this and that "will help", perhaps to the point of not seeing the forest for the trees. All I can think about is the six months we might have left.

Reply # - July 30, 2013, 07:21 PM

Dr West
Posts: 4735

I just wanted to wish you the best. I think it makes sense to try to read between the lines. Yes, medicine and probably especially cancer care is walking a fine line between being accurate in what to predict and trying to maintain hope whenever possible.

-Dr. West

Reply # - August 19, 2013, 05:41 PM

emazuy123
Posts: 4

We are 3-4 months into this and we have done nothing but testing and waiting. MRIs, PETs, CATs, lumber punches, waiting, waiting, and more waiting. There has been no treatment. My mother continues to have difficulty walking, has gone almost completely deaf, and the recent brain biopsy has triggered Bell's palsy. The left side of her face is partially paralyzed. She can't close one eye. Her voice (already loud due to the deafness) sounds like a terrified dental patient, face half-numbed and stuffed full of cotton. We will meet with a hematology/oncology guy tomorrow. He's supposed to share with us the results of the biopsy, and some treatments options? That's what I thought about the last three or four meetings with oncologists, but they just keep ordering up more tests. I'm just becoming impatient and distrustful of our doctors now. It's as if they decided nothing can be done and to just run as many expensive tests as Medicare and insurance will pay for.

Reply # - August 19, 2013, 06:01 PM

dantay112
Posts: 6

I'm not sure why they continue weeks without doing anything. I have mri and 1 lumbar then moved right onto whole brain rads for 14 days and now I have just begun chemo irenotecan...however you spell it and my original diag. was bc as well. My Onc. said that because I was going to do tx anyway there wasn't any reason to have me do two more punctures. Good luck with your doctors, maybe you should more to another hospital.

Reply # - October 9, 2013, 06:23 AM

emazuy123
Posts: 4

Mom's been out of radiation for a few weeks now. She seems to have recovered enough hearing to hear the occasional dog bark or slamming door, but for conversational purposes she's still completely deaf. She has not yet seen a doctor to discuss the effectiveness of her radiation and what options might come next. I think the doctors are leaning towards discouraging her from continuiing treatment with chemotherapy, as it would be of limited benefit and probably make her pretty miserable.

Reply # - October 9, 2013, 05:16 PM

Dr West
Posts: 4735

I'm sorry it has been such a rough road for her. I know the improvement has been rather minimal and slow, but I hope she shows further improvement over time.

Good luck.

-Dr. West

Reply # - October 10, 2013, 02:22 PM

bobradinsky
Posts: 144

Emazury123

You and your mom are surely on a rough road with more bumps ahead. I am glad for you and her that she has handled it as well as she has and at times shown improvement. I wish you much luck in the battle ahead and remember to take time to take care of yourself.

Bob

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