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 05:54AM

Posted on: Jan 6, 2013 05:54AM

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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Oct 9, 2013 04:40PM JGreen wrote:

Thanks amlg, she is in rural Colorado but going up to Denver for a consult with a neuro surgeon shortly to get the ball rolling on placement of the ommaya reservoir etc. She is having some symptoms of the leptomeningeal mets -- shakey legs, numb feet, swirling vision and headaches -- so I am hoping that things move forward on treatment soon. I have forwarded all of your responses to her and her husband -- thank you so much! I will definitely come back with questions. Thank you!

Dx 5/2011, 6cm+, Stage IV, mets, ER+/PR+, HER2-
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Oct 12, 2013 12:07PM JGreen wrote:

Hi everyone,

My friend will have the procedure to get the Ommaya reservoir on Tuesday and will receive her first dose of IT Depocyt at the same time. Any information on the ommaya reservoir would be greatly appreciated -- is the procedure very painful? Did you have headaches for a few days after? Any other effects I can prep her for?

Thank you!

J Green

Dx 5/2011, 6cm+, Stage IV, mets, ER+/PR+, HER2-
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Oct 12, 2013 08:31PM mandymoo wrote:

Hi JGreen. I cannot help you with this information, but I am hoping that someone can. I do wish your friend good luck with the procedure and I hope that it will work for your friend. My thoughts will certainly be with your friend. Let us know how your friend does get on, please, as I think this information will be very helpful for people who will undergo this procedure in the future. xxx

Cheers

Mandy xxx

"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 13, 2013 09:47AM JGreen wrote:

Thanks Mandy. I will definitely do that. My son is a cancer survivor (Dx at age 9, now 16 and off treatment for 6 years) and I am a big believer in message boards like this as a way of sharing information and experiences.

Dx 5/2011, 6cm+, Stage IV, mets, ER+/PR+, HER2-
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Oct 15, 2013 10:26PM amlg1 wrote:

ommaya port not painfull at all.Let us know how she is.

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 16, 2013 07:06AM mandymoo wrote:

Thank you for keeping this thread going and I agree that these message boards are great and valuable sources of information for those people affected. :)

I hope your friend is doing well. Keep us posted.

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 26, 2013 03:36PM JGreen wrote:

Dear Mandy and Almg1,

Sorry for the delay in getting back to you about my dear friend. I don't have good news and was putting off posting. She went for the procedure to put in the Ommaya reservoir and her MO found that her platelet count was low so the procedure was postponed. In the meantime, she did an MRI and found further spread. The MO recommended against going ahead with the (or any further) treatment and my friend and her husband (both amazing people who have shown incredible grace in the most difficult of circumstances) agreed. From here on out it is all about keeping her comfortable and attending to her emotional and physical health as best as they can.

I can't thank you enough for sharing what you know with me. I wish you much health and happiness, and will not forget your kindness.

With hope,

J Green

Dx 5/2011, 6cm+, Stage IV, mets, ER+/PR+, HER2-
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Oct 26, 2013 11:03PM mandymoo wrote:

JGreen, Thank you for letting us know about your dear friend. I am so very sorry about the bad news and my thoughts and prayers will be with her. Please don't hesitate to communicate or even to vent here if you feel the need. These threads are an amazing way for us to learn and pass on information as well as supporting and listening to each other.

God Bless you and your friend and I hope that you have inner strength and courage to continue to support your friend and her family. 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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Oct 27, 2013 11:47AM RobinNY wrote:

JGreen...so very sorry that your friend got such bad news. Thinking of you all and sending a prayer and a gentle hug.

Robin

If what doesn't kill you...makes you stronger ~ I should be able to bench press a Buick. Courtesy of "Fight like a Girl" Dx 10/1999, ILC, 2cm, Stage IIB, Grade 2, 1/5 nodes, ER+/PR+, HER2- Hormonal Therapy 3/8/2010 Femara (letrozole) Dx 4/8/2010, ILC, Stage IV, Grade 2, ER+/PR-, HER2- Hormonal Therapy 7/12/2012 Faslodex (fulvestrant) Chemotherapy 10/1/2012 Xeloda (capecitabine) Chemotherapy 2/18/2013 Navelbine (vinorelbine) Chemotherapy 6/17/2013 Taxol (paclitaxel) Chemotherapy 8/18/2013 Doxil (doxorubicin)
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Nov 3, 2013 12:13PM RobinNY wrote:

just to let you know I had my surgery on Friday and the headaches are gone! The ommaya port was not painful at all...and the shunt has given me such relief. Looking forward to healing and starting chemo to get rid of the cells in my spinal fluids.

Hugs

Robin

If what doesn't kill you...makes you stronger ~ I should be able to bench press a Buick. Courtesy of "Fight like a Girl" Dx 10/1999, ILC, 2cm, Stage IIB, Grade 2, 1/5 nodes, ER+/PR+, HER2- Hormonal Therapy 3/8/2010 Femara (letrozole) Dx 4/8/2010, ILC, Stage IV, Grade 2, ER+/PR-, HER2- Hormonal Therapy 7/12/2012 Faslodex (fulvestrant) Chemotherapy 10/1/2012 Xeloda (capecitabine) Chemotherapy 2/18/2013 Navelbine (vinorelbine) Chemotherapy 6/17/2013 Taxol (paclitaxel) Chemotherapy 8/18/2013 Doxil (doxorubicin)

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