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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 4 or Mets.

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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Jun 6, 2017 11:26AM LindaE54 wrote:

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.

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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Jun 9, 2017 07:24AM MameMe wrote:

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

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- (IHC) Chemotherapy 5/1/2017 Doxil (doxorubicin) Chemotherapy 3/1/2018 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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Jun 9, 2017 07:31AM - edited Jun 9, 2017 07:32AM by 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.

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- (IHC) Chemotherapy 5/1/2017 Doxil (doxorubicin) Chemotherapy 3/1/2018 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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Jun 9, 2017 10:38AM LindaE54 wrote:

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.

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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Jun 11, 2017 06:18AM MameMe wrote:

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

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- (IHC) Chemotherapy 5/1/2017 Doxil (doxorubicin) Chemotherapy 3/1/2018 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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Jun 11, 2017 07:48AM LindaE54 wrote:

Hi MameMe - did you get results of biopsy?

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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Jun 12, 2017 03:49AM MameMe wrote:

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

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- (IHC) Chemotherapy 5/1/2017 Doxil (doxorubicin) Chemotherapy 3/1/2018 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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Jun 12, 2017 08:40AM LindaE54 wrote:

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.

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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Jun 19, 2017 05:05AM Babsy wrote:

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

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Jun 19, 2017 05:29AM - edited Jun 19, 2017 05:30AM by 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

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- (IHC) Chemotherapy 5/1/2017 Doxil (doxorubicin) Chemotherapy 3/1/2018 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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Jun 19, 2017 05:55AM Kaption wrote:

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.


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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Jun 20, 2017 04:51AM MameMe wrote:

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

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- (IHC) Chemotherapy 5/1/2017 Doxil (doxorubicin) Chemotherapy 3/1/2018 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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Jun 20, 2017 07:15AM LindaE54 wrote:

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

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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Jun 20, 2017 09:51AM Babsy wrote:

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



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Jun 29, 2017 06:47AM Kaption wrote:

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.


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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Jul 1, 2017 02:46AM Babsy wrote:

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.

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Jul 1, 2017 04:35AM Kaption wrote:

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!



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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Aug 6, 2017 07:52PM Kaption wrote:

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

(Hugs)


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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Aug 29, 2017 07:25PM Redmond wrote:

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?

mets to lungs Dx 12/18/2012, IDC, 3cm, Stage IV, Grade 3, mets, ER+/PR-, HER2+ Targeted Therapy 2/3/2013 Herceptin (trastuzumab) Chemotherapy 2/3/2013 Taxotere (docetaxel) Targeted Therapy 4/7/2013 Perjeta (pertuzumab) Surgery 9/19/2013 Prophylactic ovary removal Hormonal Therapy 10/15/2013 Femara (letrozole) Surgery 11/18/2013 Mastectomy: Left; Reconstruction (left) Surgery 11/18/2013 Reconstruction (right)
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Aug 30, 2017 04:58AM Goodie16 wrote:

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.

Dx 4/18/2014, IDC, Left, 2cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 2/2015, IDC, <1cm, Stage IV, metastasized to brain, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy External: Brain Surgery Mastectomy: Left Hormonal Therapy Arimidex (anastrozole) Targeted Therapy
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Oct 2, 2017 11:56AM Purplegurll wrote:

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.

Dx 2/2008, DCIS, 1cm, Stage 0, 0/0 nodes, ER-/PR-, HER2- Surgery 4/30/2008 Lumpectomy: Left Radiation Therapy 5/31/2008 Breast Dx 5/2014, ILC, 3cm, Stage IIB, Grade 2, 3/6 nodes, ER-/PR-, HER2- Chemotherapy 8/21/2014 AC Chemotherapy 10/30/2014 Carboplatin (Paraplatin), Taxol (paclitaxel) Dx 1/2016, Stage IV, metastasized to bone, ER-/PR-, HER2- Surgery Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Latissimus dorsi flap, Silicone implant; Reconstruction (right): Latissimus dorsi flap, Silicone implant Chemotherapy Xeloda (capecitabine)
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Oct 3, 2017 07:30AM Purplegurll wrote:

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.

Dx 2/2008, DCIS, 1cm, Stage 0, 0/0 nodes, ER-/PR-, HER2- Surgery 4/30/2008 Lumpectomy: Left Radiation Therapy 5/31/2008 Breast Dx 5/2014, ILC, 3cm, Stage IIB, Grade 2, 3/6 nodes, ER-/PR-, HER2- Chemotherapy 8/21/2014 AC Chemotherapy 10/30/2014 Carboplatin (Paraplatin), Taxol (paclitaxel) Dx 1/2016, Stage IV, metastasized to bone, ER-/PR-, HER2- Surgery Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Latissimus dorsi flap, Silicone implant; Reconstruction (right): Latissimus dorsi flap, Silicone implant Chemotherapy Xeloda (capecitabine)
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Jun 6, 2018 10:54AM - edited Jun 6, 2018 10:58AM by 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

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Jun 6, 2018 11:58AM - edited Oct 14, 2018 07:21AM by 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

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Jun 17, 2018 06:44PM mandymoo wrote:

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.

"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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Oct 6, 2018 07:38PM - edited Oct 6, 2018 07:39PM by 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

I Dx 11/11/2006, ILC, Right, 3cm, Stage IIIC, metastasized to bone, Grade 2, 19/20 nodes, ER+/PR+, HER2- Surgery 11/29/2006 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic ovary removal Chemotherapy 1/7/2007 Chemotherapy 1/10/2007 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 5/30/2007 Breast, Lymph nodes Hormonal Therapy 8/19/2007 Femara (letrozole) Dx 10/5/2018, ILC, Stage IV, metastasized to brain/bone, 20/21 nodes, ER-/PR-, HER2-
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Oct 6, 2018 08:35PM - edited Oct 8, 2018 02:54AM by Ihopeg

This Post was deleted by Ihopeg.
I Dx 11/11/2006, ILC, Right, 3cm, Stage IIIC, metastasized to bone, Grade 2, 19/20 nodes, ER+/PR+, HER2- Surgery 11/29/2006 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic ovary removal Chemotherapy 1/7/2007 Chemotherapy 1/10/2007 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 5/30/2007 Breast, Lymph nodes Hormonal Therapy 8/19/2007 Femara (letrozole) Dx 10/5/2018, ILC, Stage IV, metastasized to brain/bone, 20/21 nodes, ER-/PR-, HER2-
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Oct 7, 2018 07:38PM Partyoffive wrote:

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

Dx 6/2013, IDC, 5cm, Stage IV, 9/21 nodes, mets, ER+/PR+, HER2- Surgery 6/17/2013 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/25/2013
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Oct 8, 2018 02:52AM Ihopeg wrote:

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

I Dx 11/11/2006, ILC, Right, 3cm, Stage IIIC, metastasized to bone, Grade 2, 19/20 nodes, ER+/PR+, HER2- Surgery 11/29/2006 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic ovary removal Chemotherapy 1/7/2007 Chemotherapy 1/10/2007 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 5/30/2007 Breast, Lymph nodes Hormonal Therapy 8/19/2007 Femara (letrozole) Dx 10/5/2018, ILC, Stage IV, metastasized to brain/bone, 20/21 nodes, ER-/PR-, HER2-
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Oct 8, 2018 04:34AM Ihopeg wrote:

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
I Dx 11/11/2006, ILC, Right, 3cm, Stage IIIC, metastasized to bone, Grade 2, 19/20 nodes, ER+/PR+, HER2- Surgery 11/29/2006 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right; Prophylactic ovary removal Chemotherapy 1/7/2007 Chemotherapy 1/10/2007 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 5/30/2007 Breast, Lymph nodes Hormonal Therapy 8/19/2007 Femara (letrozole) Dx 10/5/2018, ILC, Stage IV, metastasized to brain/bone, 20/21 nodes, ER-/PR-, HER2-

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