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.

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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Jan 6, 2013 04:31AM Tiger_Blood wrote:

There is some mention about it in our Brain Mets thread. There is a lot more info in the forum her2support.org. I think they have a couple of threads dedicated to the treatments. good luck!

My wife has Tiger Blood. Winston Churchill: If you are going through hell, keep going Dx 3/7/2011, IDC, 6cm+, Stage IV, Grade 2, mets, ER-/PR-, HER2+
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Jan 6, 2013 02:27PM mandymoo wrote:

Thank you tiger, I went through the brain mets thread but I will have a look in the form her2support.org. I am HER-, and ER+, PR+, so would not have thought of looking there. I was only diagnosed with LM on 20 November 2012 and that was the same time that I was advised of other mets in the brain, liver, lungs and bone. The LM is the only one that worries me and I have been put on Xeloda. No radiotherapy and no lumbar puncture, because I was advised that both are too invasive???? 

BTW how are you coping? Is the treatment working?

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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Mar 18, 2013 02:52AM - edited Mar 18, 2013 03:01AM by debluvli

Hi Mandy

I am surviving with ongoing chemotherapy capcitabine (xeloda) tablets. 

First diagnosed with stage 3 breast cancer in 2008 with reoccurence leptomeningeal metastic brain cancer in Oct 2010, no tumour present, its the fluid layer between my brain and skull that was discovered after 2 minior TIA strokes in Oct 2010 which I recovered from, albeit temporarily lost my speech.  The cancer is oestrogen positive so my oncologist recommended by tubes and ovaries being removed and this was done successfully on 17 January 2013. 

Its been a tough ride especially when your told you have 6-12 months to live and then go on to exceed this with the help of ongoing good response to capcitabine tablets.  Most people look at me in disbelief that I am living with the disease, I stay fit and healthy and am surrounded by lots of loving friends and family that are there to draw stength from.  I try to stay positive, occasionaly I let this whole derailment get to me and within a day of crying I pull myself together.

It seems to me that everycase is different, in my case even with the succesful response to chemo I am told that I am likely to live for 5 years but not 10yrs, The biggest side affect for me is that I get extremely tired so I usually go to be early but feel better when I get my 2 week break.  So the best way I find is to put this information into a small box and sit on it ..... then move on to living every day to the max. and do things that give you the feel good factor (fgf).  Sit and watch funny movies, I have 100 tips for immunity boosting and top of my list is laughter, whether that be smiling at a passing comment or watching funny movies but above all laughing with loved ones.

So onwards and upwards my friend, one thing is for sure, we all live and we all die, its about enjoying the life we are given to give us all great memories.

Good luck allInnocent

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Mar 21, 2013 02:46AM mandymoo wrote:

Thank you for your input, debluvli. It is refreshing to hear from someon who has survived more than 12 months with LM. It has constantly been on my mind, although I have never had any symptoms regarding any of my tumours, except the pleural effusion. It was because of the pleural effusion, that more tests were done, and I was informed that the cancer was in the liver, and lungs as well as the brain. The final bit of bad news was that one of the mets was LM.....I tried to research on the net, but most of the information was outdated. 

I did confront my oncologist a couple of weeks ago to tell him that I am feeling quite anxious about the statistics concerning LM and he gave me more faith by telling me that he had a couple of patients who are still going after 4 and 5 years!!!!! So technology has certainly impoved lately.Smile

Thank you for your input on how you deal with LM and this wretched cancer. I agree, I believe that if you can keep mentally healthy and happy, then your physical health also stays healthy. Wishing you all the best in your journey and yay for technology. xox

"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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Mar 21, 2013 12:07PM Blossoms wrote:

Hi Mandy, I have had mets in the dura lining of my brain (also very rare). Although it is not the same as the leptomeningeal layers, it is still part of the membranes that cover the brain (dura, arachnoid and pia), the last two are the leptomeningeal. I found out about the dura mets in January this year after having very bad headaches, an MRI showed the dura mets extent was over most of the back 1/2 of my brain and in the venus space between the two hemispheres. In Feburary I had 10 treatments of radiation. I am thankful that it resolved the headaches and a bone scan yesterday showed the radiation has taken care of most of the bone mets in my skull. I just wanted to tell you what treatment I was given for the dura mets, and the result. I didn't have side effects. I was given steroids during treatment to control any edema/swelling of brain that may happen from radiation.

Dx 5/22/2009, IDC, 2cm, Stage IIB, Grade 3, 2/18 nodes, ER+/PR+, HER2- Chemotherapy 8/19/2009 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Dx 8/28/2010, <1cm, 0/0 nodes, ER+/PR+, HER2- Dx 6/26/2012, 1cm, 1/1 nodes, ER+/PR+, HER2- Dx 8/20/2012, IDC, Stage IV, Grade 3, mets, ER+/PR+
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Mar 21, 2013 03:01PM EnglishMajor wrote:

Actress Valerie Harper has been diagnosed with LM. (She does not have breast cancer; she has metastatic lung cancer.)

http://www.medicinenet.com/script/main/art.asp?articlekey=168344

per the article:

Q: What is leptomeningeal carcinomatosis?

It is also called neoplastic meningitis. They mean the same thing. There are tumor cells that are in the spinal fluid.

I don't think I have seen many references to neoplastic meningitis, but might be worth a search...

Dx 7/6/2009, IDC, 3cm, Stage IV, Grade 3, mets, ER+/PR+, HER2-
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Mar 21, 2013 04:29PM mandymoo wrote:

Blossoms, thank you for your information. I didnt know which layers of the lining of the brain were involved, so thank you for that. I hope the radiation has done its job and that it is resolved. I have not had radiation yet, only Xeloda and the MRI shows that the mets are shrinking. I am also fortunate that I never had any symptoms, so possibly early stages yet. Have you consulted with your oncologist about Xeloda, as that appears to be the chemotherapy drug that can get through the blood brain barrier. I am not sure if there are any other chemo drugs that can do this. 

EnglishMajo, I had a look at your article about Valerie Harper, and appreciate the link as it is very informative. I believe knowledge is power and the more we know the more control we can have over our treatments and care. As I have said before, there are some posts about LM but most are very vague and I believe that these mets will pop up more and more as people are living longer with cancer, and most of the information on the net are before Xeloda. 

Cheers

Mandy Smile

"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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Mar 21, 2013 04:56PM scuttlers wrote:

Tykerb also crosses the BBB.

My favorite side effect of treatments is BEING ALIVE! Dx 2/4/2009, IBC, 6cm+, Stage IV, Grade 3, 11/17 nodes, mets, ER+/PR-, HER2+
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Mar 21, 2013 06:23PM usafmom wrote:

Mandy no advice but wanted you to know I'm praying for you and glad these other ladies have some answers. Keep your chin up!

Hugs Kimber Dx 10/31/2007, IDC, 4cm, Stage IV, Grade 3, 12/40 nodes, mets, ER+/PR+, HER2+
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Mar 21, 2013 06:37PM formygirls wrote:

Mandy,
I have leptomenginal mets. I have had six doses of intrathecal chemo through spinal taps for them last summer.The chemos were depocyt and methotrexate. These were given in addition to the systemic chemo.

Initially diagnosed with triple neg stage 3 bc in Feb 2008. Mets dx in Feb 2012 with change in receptors .Mets to liver, brain, bone, lung and nodes and central nervous system. Dx 2/3/2012, IDC, 6cm+, Stage IV, Grade 3, 2/29 nodes, ER+/PR-, HER2+

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