Topic: Leptomeningeal Metastases or Carcinomatous meningitis in Brain

Forum: Stage IV/Metastatic Breast Cancer — 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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Mar 22, 2013 04:37AM mandymoo wrote:

Thank you to everyone who replied, I really appreciate it and hopefully future people who are afflicted with LM may find this thread useful.

Formygirls, I am interested how long you have had LM and how are you going now. 

Scuttlers, thank your for letting me know about Tykerb .

Usafmom, thank you for your kind thoughts and I hope that you are fairing well, also. 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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Aug 27, 2013 02:31AM JGreen wrote:

Hi everyone, I am actually posting on behalf of my best friend who is a 45-year-old mom of two.  She was diagnosed 08/11 with stage IV breast cancer with mets in her pelvic bone and rib, as well as node involvement.  Had a double mastectomy, radiation and chemo.  

Things were relatively stable but 10 days ago she was diagnosed with LC.  She has since started WBR and is doing OK -- a little fuzzy-headed and tired, but nothing crazy.  

My question is this: Xeloda, unfortunately, is not an option as she was on it already at the time the LC was diagnosed. They have since taken her off it. So, what other drugs besides Xeloda are people taking for LC?  Scuttlers, you mentioned Tykerb.  Is anyone aware of anything else or of any trials (am about to start searching, but would be interested in first-hand experiences).

I am in the midst of making a list of what chemos and other treatments she has done so I don't have the usual, helpful profile for her, but am grateful for any information anyone can provide.  I just want to help her and I hope you don't mind my use of these boards.

Dx 5/2011, 6cm+, Stage IV, mets, ER+/PR+, HER2-
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Sep 26, 2013 02:12AM mandymoo wrote:

JGreen, I am sorry that you have not had any replies as yet. I only just noticed this post today. Perhaps check with the Brain Mets thread. I cannot help out with any other medications or treatment for LC. My thoughts and prayers are with your friend. xxx

Cheers

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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Sep 26, 2013 03:37AM lauriesh wrote:

Jgreen,
If your friend is her2+, herceptin can also be given intrathecally.


Laurie

3/2005 stage 2, 7/2010- liver mets. Er/pr- her2+
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Sep 29, 2013 10:08PM JGreen wrote:

Thank you for your replies! In fact, she is ER/PR positive and (unfortunately) HER2 negative. She has decided to do DepoCyt administered intrathecally which should give her some extra time. If anyone has any feedback on what she can expect with either the procedure to place the ommaya reservoir or IT DepoCyt, I would be so grateful. She is having some symptoms of the leptomeningeal mets such as bad headaches, feeling like her ears need to pop and, scarily, her legs temporarily giving out.
Thank you!

Dx 5/2011, 6cm+, Stage IV, mets, ER+/PR+, HER2-
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Oct 2, 2013 03:52AM mandymoo wrote:

JGreen, DepoCyt appears to be a very good drug for your friend. I hope that it does the job and that the LM will become "under control" for a very long time. I still suggest that you follow the "Brain Mets" trhead as well as there may be some people who are familiar with this drug. 

Cheers

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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Oct 3, 2013 07:44AM amlg1 wrote:

Sorry to hear about your friend.i was dignosed with LM about 26 months ago,I have an ommya port and had depocyte injected for about 4 months,i also had decadron which made my legs so weak.I started with almost blacking out if I sat to long and then got up.That was fluid  build up in brain.Finally in Dec.2011 the dr.decided to put a shunt in to drain flluid.I cannot use ommya any more.i am now on gemcitabean.so far so good,feeling good.tell her my story to give her hope,because when I was diagnosed with lepto.over 2 years ago my Dr.told me to get things in order.Once I got off those steroids my legs got stronger.I look like a new person,now and feel like a new person.Agood positive  outlook is so helpful.

                                                     Hope I was some help.

                                                                             Annamarie

Anna.7/22/11 mets to spinal fluid.7/1/2011 now met to brain:( Stage IV Dx 4/22/2009, ILC, 2cm, Stage IIIC, Grade 3, 31/34 nodes, ER-/PR-, HER2+
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Oct 3, 2013 04:42PM mandymoo wrote:

amig1, What an inspiration to hear this story. Thank you so much for telling us your journey with LM and this may bring hope and encouragement for some others who have just been diagnosed with LM. :)

Cheers

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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Oct 7, 2013 03:08PM JGreen wrote:

Dear amlg, thank you so much for your post. I have forwarded it to my friend. Do you mind telling me where you were treated? Also were the side effects of the Depocyte difficult to tolerate? Did they start the gemcitabean in Dec 2011? Do you take it orally? I am so sorry for all the questions but I am filled with hope after reading your story. I can't thank you enough for this.

One more question: did you also do alternative things like changing your diet or using herbal remedies?

Dx 5/2011, 6cm+, Stage IV, mets, ER+/PR+, HER2-
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Oct 8, 2013 09:30AM amlg1 wrote:

Dear JGreen I have been treated at Memorial Sloan Kettering.No side effects from depocyte,just the steroids I had to take with it.In 2012 they started me back on Taxol and herceptin,then a few months later put me on Navelbine.for a few months,then Dec.2012 pyt me on Gemcitabine,which is very easy to tolerate.I get it through my port.No problem if you need any answers or help,let me know.Where do you live.i am on Long Island,ny
Anna.7/22/11 mets to spinal fluid.7/1/2011 now met to brain:( Stage IV Dx 4/22/2009, ILC, 2cm, Stage IIIC, Grade 3, 31/34 nodes, ER-/PR-, HER2+

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