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Topic: Leptomeningeal Metastases or Carcinomatous meningitis in Brain

Forum: Stage IV/Metastatic Breast Cancer ONLY — Please respect that this forum is for members with stage IV/metastatic breast cancer ONLY. There is a separate forum for caregivers and friends: Caring for Someone with Stage IV or Mets.

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Posted on: Jan 6, 2013 02:54AM

Posted on: Jan 6, 2013 02:54AM

mandymoo wrote:

Hi there, I would like to know who has been diagnosed with Leptomeningeal Metastases (also known as Carcinomatous Meningitis) in the brain. What treatments are they receiving and how long since you were diagnosed. I have read through the discussion boards but information is very limited. Thanking you in advance.  

Mandy 

"Don't give in to the disease" Dr Phil McGraw Dx 12/13/2006, IBC, 3cm, Stage IIIB, Grade 2, 11/22 nodes, ER+/PR+, HER2- Chemotherapy 12/28/2006 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 5/20/2007 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Dx 11/17/2012, IBC, Right, 3cm, Stage IV, metastasized to brain/bone/liver/lungs, Grade 2, 11/22 nodes, ER+/PR+, HER2- Chemotherapy 11/27/2012 Xeloda (capecitabine)
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May 3, 2017 06:47AM Kaption wrote:

Thanks so much Mandy! That does help. My RO was just so positive that it's not LM or I would be much worse already. He also said my symptoms would not be subtle. So, the little pangs and stabs I have on my forehead and top of my head are not LM. But, he also doesn't know what I have. It's sort of a wait and see deal. I am glad he's going to do another MRI in 3 months. I think that will be reassuring.

Your experience does help. I know all mbc is complicated, but it seems they know less about the brain area- especially LM.

Guess it's just time to breathe and enjoy what I have right now.

Thank you so much!!



Dx 8/2005, DCIS, Left, Stage 0, ER+, HER2+ Dx 5/2012, DCIS, Right, Stage 0, Grade 3, 0/1 nodes, ER+, HER2+ Dx 6/2013, Stage IV, metastasized to bone, ER+, HER2- Surgery Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy Arimidex (anastrozole), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy External: Bone Surgery Lumpectomy: Left Chemotherapy Abraxane (albumin-bound or nab-paclitaxel)
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May 3, 2017 03:45PM mandymoo wrote:

you are very welcome, Kaption. I hope that your next MRI comes back all clear. This is such a roller coaster that we are on.

Hugs

Mandy xxxxx

"Don't give in to the disease" Dr Phil McGraw Dx 12/13/2006, IBC, 3cm, Stage IIIB, Grade 2, 11/22 nodes, ER+/PR+, HER2- Chemotherapy 12/28/2006 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 5/20/2007 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Dx 11/17/2012, IBC, Right, 3cm, Stage IV, metastasized to brain/bone/liver/lungs, Grade 2, 11/22 nodes, ER+/PR+, HER2- Chemotherapy 11/27/2012 Xeloda (capecitabine)
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May 30, 2017 08:07PM MameMe wrote:

I would love to see this thread continued, as I, too, am being tested for Leptomeningeal mets. I am reading everything I can on this, and am relating to your stories very strongly. So far, a brain MRI and a lumbar puncture have been clear. Today I did a neck, jaw area MRI, looking for stronger clarification of cranial nerves and soft tissues of neck. No results back yet. My oncologist wants another LP if nothing shows up on the last MRI. My markers have been pretty stable, around 60-70, and I am ER+ PR-, her2-. I think that er+ doesn't get lepto mets as often as triple neg or brac pos.

I will check in with more info soon, I am too tired to write more, busy day. Keep sharing, this is a really important topic

Widespread, low volume mets to eye, lungs, chest wall and bones, dx 4/14/14. "There's gotta be a pony in this s--t somewhere..." Dx 2/2003, IDC, Right, 2cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Dx 12/2012, IDC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR-, HER2- Dx 4/4/2014, IDC, Left, 2cm, Stage IV, metastasized to bone/lungs/other, Grade 2, 0/1 nodes, ER+/PR-, HER2-, Chemotherapy 4/30/2017 Doxil (doxorubicin) Chemotherapy 2/28/2018 Halaven (eribulin) Targeted Therapy Afinitor (everolimus) Chemotherapy Taxol (paclitaxel) Hormonal Therapy Aromasin (exemestane) Chemotherapy Gemzar (gemcitabine) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib) Chemotherapy Xeloda (capecitabine)
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May 31, 2017 05:26AM MameMe wrote:

Anyone out there still interested in keeping this thread alive?

Widespread, low volume mets to eye, lungs, chest wall and bones, dx 4/14/14. "There's gotta be a pony in this s--t somewhere..." Dx 2/2003, IDC, Right, 2cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Dx 12/2012, IDC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR-, HER2- Dx 4/4/2014, IDC, Left, 2cm, Stage IV, metastasized to bone/lungs/other, Grade 2, 0/1 nodes, ER+/PR-, HER2-, Chemotherapy 4/30/2017 Doxil (doxorubicin) Chemotherapy 2/28/2018 Halaven (eribulin) Targeted Therapy Afinitor (everolimus) Chemotherapy Taxol (paclitaxel) Hormonal Therapy Aromasin (exemestane) Chemotherapy Gemzar (gemcitabine) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib) Chemotherapy Xeloda (capecitabine)
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May 31, 2017 05:45AM Kaption wrote:

Yes, please! I am starved for information on LM!


Dx 8/2005, DCIS, Left, Stage 0, ER+, HER2+ Dx 5/2012, DCIS, Right, Stage 0, Grade 3, 0/1 nodes, ER+, HER2+ Dx 6/2013, Stage IV, metastasized to bone, ER+, HER2- Surgery Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy Arimidex (anastrozole), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy External: Bone Surgery Lumpectomy: Left Chemotherapy Abraxane (albumin-bound or nab-paclitaxel)
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May 31, 2017 07:18AM MameMe wrote:

Hi Kaption, Yesterday I was in for my second Doxil infusion. My oncologist spoke with me about the testing they are doing and her experience with LMDShe read some research that said 30% of women with bc that they tested after death had signs of leptomeningeal disease. That is so much more than what she had read before, she didn,t know what to make of it. Her own experience with LMD was about 10 cases, all of which started with cranial nerve symptoms of some kind.

I had sudden onset, intense left side head pain, pain in scalp lesions on that side, and wonkiness at base of my tongue. This was a month ago. Prednisone in increasing doses finally cleared the pain up a few days ago. Still have numbness on one side of tongue and that makes speech and chewing difficult.

What are you experiencing now, and what are you using for treament? It is so very, very frustrating to live with uncertainty about what could become a fast moving situation, or could be something that just resolves without answers. You get a medal for patience!

Widespread, low volume mets to eye, lungs, chest wall and bones, dx 4/14/14. "There's gotta be a pony in this s--t somewhere..." Dx 2/2003, IDC, Right, 2cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Dx 12/2012, IDC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR-, HER2- Dx 4/4/2014, IDC, Left, 2cm, Stage IV, metastasized to bone/lungs/other, Grade 2, 0/1 nodes, ER+/PR-, HER2-, Chemotherapy 4/30/2017 Doxil (doxorubicin) Chemotherapy 2/28/2018 Halaven (eribulin) Targeted Therapy Afinitor (everolimus) Chemotherapy Taxol (paclitaxel) Hormonal Therapy Aromasin (exemestane) Chemotherapy Gemzar (gemcitabine) Hormonal Therapy Faslodex (fulvestrant) Targeted Therapy Ibrance (palbociclib) Chemotherapy Xeloda (capecitabine)
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May 31, 2017 08:02AM Kaption wrote:

Hi,

Yes, it's strange to have something that my oncs seem to have such little experience in.

My RO seemed to think I don't have LM or I would have deteriorated much more quickly. He thinks anyone who doesn't die in 3 months doesn't have LM. I respect him immensely, but this seems to be an area he does not know as well.

My initial symptoms were a numb right side chin and weird sensation on my cheek and temple. That was in November and they at first thought it was a mini stroke. I was out of state. When I got home I had an MRI that seemed fine. One month later another MRI showed the lesion above my right eyeball in the lining/fluid area. I had rads on that.

I had just started Xeloda during this time (failing Faslodex). I took some Dex during rads for swelling (hated it). Rads ended the end of March. Follow up MRI was good. Lesion reduced, nothing else scary floating around.

But since the end of March I have been absolutely drained. No energy at all. A few quick stabbing pains in my head. Weird, vibrating sensations in my groin and the feeling that something is wrapped around my left ankle. All weird stuff I don't know how to interpret.

I was on low dose prednisone for 2 weeks and I think it helped the fatigue. Stopped it last Thursday and hit the tired wall again Saturday.

Today is my regular check in with MO. I'm anticipating she'll put me back on prednisone a while.

My husband wants a CURE for the fatigue. He's having trouble accepting that I may feel like this for a while.

Hoping for good answers for us!!

Thanks! There are so few to talk to about this.


Dx 8/2005, DCIS, Left, Stage 0, ER+, HER2+ Dx 5/2012, DCIS, Right, Stage 0, Grade 3, 0/1 nodes, ER+, HER2+ Dx 6/2013, Stage IV, metastasized to bone, ER+, HER2- Surgery Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy Arimidex (anastrozole), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy External: Bone Surgery Lumpectomy: Left Chemotherapy Abraxane (albumin-bound or nab-paclitaxel)
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May 31, 2017 12:26PM LindaE54 wrote:

Hi Ladies,

Glad this thread is active.

Mameme - Remember me from the thread on prednisone/headaches you posted? I was wondering how you're doing. Good to know that recent tests are negative and headache is better. You may recall I was having severe headaches. On top of that. right side of tongue is swollen, crooked and partially paralyzed causing speech and swallowing issues. All this started in April. Brain scan was clear but MRI of brain and cervical area revealed some growth on existing bone met on C1 compressing the hypoglossal nerve which controls the tongue. MRI also showed a met on the clivus bone of the skull. The clivus is near the cervical spine where there is a space for intracranial nerves to go through. I'll be getting 5 sessions of rads next week. RO says the hypoglossal is permanently damaged and not to expect improvement. He has heard of very rare cases where it improved but chances are very, very slim. Rads is to avoid further neurological damage. Couldn't have rads earlier because mets to liver were found at the same time and MO wanted a switch to Taxol asap. It appears that even if rads had been done earlier, it wouldn't change the current tongue/speech issues. I didn't know cranial nerve symptoms leads to LMD in some cases. I'll be anxiously waiting to hear your results and hope you get good news.

Kaption - great news on lesion reduction! I hate Dex with a passion. Just as I finished weaning I have to get back on it as soon as I start rads. If you find a cure for fatigue, please share with me! Main SE with Taxol is fatigue but I'm pretty sure the recent progression to liver contributes to my fatigue as well.

Linda - dx at 54. Decision to stop all treatments on 9 Jan 2018 Dx 11/26/2013, IDC, Left, 1cm, Stage IV, metastasized to bone/liver/other, Grade 3, mets, ER+/PR+, HER2- Radiation Therapy 12/18/2013 External: Bone Hormonal Therapy 12/29/2013 Femara (letrozole) Hormonal Therapy 5/27/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 5/28/2014 External: Bone Radiation Therapy 8/27/2014 External: Bone Hormonal Therapy 9/24/2014 Femara (letrozole) Radiation Therapy 12/13/2014 External: Bone Hormonal Therapy 2/16/2017 Faslodex (fulvestrant) Chemotherapy 5/14/2017 Taxol (paclitaxel) Radiation Therapy 6/4/2017 External: Bone Chemotherapy 10/2/2017 Ellence (epirubicin) Chemotherapy 10/22/2017 CEF Chemotherapy 12/27/2017 Halaven (eribulin)
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May 31, 2017 04:43PM Kaption wrote:

Linda,

Hugs for all you are going through! Oh my!

Just got back from a long visit with my MO. Bless her for taking on this fatigue because it's likely not just cancer. She's hanging in there with me to eliminate what it's not. I'm having a heart echo next Wednesday and she's contacting an endocrinologist for me. She's wondering if it's adrenal. She did a couple of tests for that and they came back in the low normal range. In the meantime I'm returning briefly to a very low dose of prednisone because I thought I felt a bit better on it. She is concerned that my face and ankles are already a bit puffy.

As she was talking about adrenal stuff I kept thinking "I've seen something about this on a previous scan." I got home and poured over my old test results and, sure enough, in 2013 when mbc was found two different radiologists mentioned an enlarged and oddly shaped left adrenal gland with a nodule on it. Hmmm...maybe nothing- but I will show it to her.

She did say that in the back of her mind she's wondering if the LM is a factor. Think she's trying to eliminate other possibilities before my next MRI.

What our bodies go through !



Dx 8/2005, DCIS, Left, Stage 0, ER+, HER2+ Dx 5/2012, DCIS, Right, Stage 0, Grade 3, 0/1 nodes, ER+, HER2+ Dx 6/2013, Stage IV, metastasized to bone, ER+, HER2- Surgery Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy Arimidex (anastrozole), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy External: Bone Surgery Lumpectomy: Left Chemotherapy Abraxane (albumin-bound or nab-paclitaxel)
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May 31, 2017 05:06PM - edited May 31, 2017 05:09PM by mandymoo

Hi Girls, I am glad that you are keeping this thread going as I do not really have anything to add at the moment, but when I was first diagnosed with LM in 2012, I was hungry for knowledge and support. It is comforting to know that I and others have benefitted from this thread, but there are a couple of other similar threads. One is spelt Lepromenngeal.

This is a terrible met to have, but believe me that besides me, I know of one other person still going strong. We both have had different treatments obviously because our mets were probably different and so are our bodies.

I hope that this gives you both hope. My thoughts are with you.

Warm hugs

mandy xxxxx


"Don't give in to the disease" Dr Phil McGraw Dx 12/13/2006, IBC, 3cm, Stage IIIB, Grade 2, 11/22 nodes, ER+/PR+, HER2- Chemotherapy 12/28/2006 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 5/20/2007 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Dx 11/17/2012, IBC, Right, 3cm, Stage IV, metastasized to brain/bone/liver/lungs, Grade 2, 11/22 nodes, ER+/PR+, HER2- Chemotherapy 11/27/2012 Xeloda (capecitabine)

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