Posted on:
Jan 6, 2013 05:54AM
M
Victor Harbor, SA, Australia
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808
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Feb 18, 2020
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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JGreen
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8
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Feb 1, 2015
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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-
J
JGreen
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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-
M
mandymoo
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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)
J
JGreen
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Feb 1, 2015
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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-
A
amlg1
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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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mandymoo
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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)
J
JGreen
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Feb 1, 2015
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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-
M
mandymoo
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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)
R
RobinNY
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Mar 30, 2014
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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)
R
RobinNY
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Mar 30, 2014
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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)