Topic: Ommaya Reservoir in Brain

Dec 16, 2009 06:01 AM lostfloridian wrote:

I am keeping you in my thoughts and prayers,  I also want to send you a really big hug.

Dec 16, 2009 08:12 AM RobinWendy wrote:

Good thoughts and prayers coming from me to you.  I'll be thinking of you all day today hoping you come through the surgery easily. Hugs.

Robin 

Dec 16, 2009 11:59 AM mthomp2020 wrote:

I'll be keeping you in my thoughts and prayers.  Many hugs and healing vibes coming your way.

Dec 16, 2009 12:10 PM getwell wrote:

You are in my thoughts.

Love and Hugz

Dec 16, 2009 03:28 PM LC815 wrote:

You might be rolling into the OR as I type.  I am praying for you and holding you in the light.

Peace.

Linda from Baltimore

Dec 16, 2009 04:26 PM leprechaun wrote:

Crossing my fingers for you!

Dec 16, 2009 09:53 PM LisaSDCA wrote:

Prayers and all good wishes and sunny CA vibes ***~~~***~~~*** that you are done with the Omaya placement and can begin treatment. Sooner to be finished!

Caryn (she posts w/her name or Caryn Rose) is my hero whether she knows it or not. She had the Omaya Reservoir placed over a year ago. She endured the arduous treatment into that port and immediately thereafter she had radiation to both her brain and full spine. She has been NED ever since then. She has some limitations, driving I think - I don't recall the details, but she has therapy for things and continues to improve. But she has NO evidence of cancer in her body!

You can hold on to this when doctors prognosticate about your impending demise. Caryn has said that summer, that she didn't know how really sick she was. That was probably a kindness your drs could embrace. Caryn just assumed the treatment would work and set about getting well.

You can do it, too.

Lisa

Dec 16, 2009 10:58 PM chainsawz wrote:

Dec 17, 2009 12:42 PM, edited Dec 17, 2009 12:56 PM by CarynRose

Duffymom,

I know how scary being told you have brain mets.  In my case, it was leptomenigeal mets, gloppy cancer up and down my brain and spine.  In November 2008, when I was told that I needed the Ommaya Reservoir, like you, I searched for anyone who had survived this type of cancer and treatment.  I found my inspiration.  She was a woman around my age (late 40's) who had had the treatment about 18 months before.  She couldn't speak too long because she was just leaving on a cruise.  I contacted her several months ago and she was planning her daughter's wedding, and then again, Thanksgiving weekend, as she was about to watch her daughter get married.  Once I found someone who was OK, I knew that I could be OK too.

I had about 6 weeks of intrathecal methotrexate (now, I think they use depocyt -- it's less toxic and as if not more effective).  Then I was given 14 sessions of Whole Brain Radiation and Full Spine Radiation.  Oy!  I have never, in all of my treatments (since 2003) been as fatigued as I was after those radiation treaments, but as long as they told me that I was NED, I'd have gone through practically anything.  It's been 14 months and I'm still here. 

 The key to our success, I believe, is that we got to it early, we were aggressive, and I took advantage of alternative therapies like acupuncture and reiki.  They told me afterwards that if what we did didn't work, I had four to six weeks. As Lisa said earlier,  I'm so glad they didn't tell me that while we were treating it.  LOL.

I wish you all the luck in the world and please, please feel free to contact me if you have any fears or questions.

Love,

Caryn

PS - Oh yeah, with help from physical therapy, I am now able to drive.  HALLELUJAH!

Dec 17, 2009 02:36 PM chainsawz wrote:

CarynRose - I just want you to know how much it means to me that you take time to post here.  Having brain mets is simply terrifying....  I focus on your story and others who persevere despite everything - I share them with my family so they can see what is possible.  I know we have hope and that is an amazing gift that I hold onto dearly!!   Thank you xx00xx  lisa  

Dec 18, 2009 06:33 AM pitanga wrote:

Duffymom, the surgery must be over by now. Hope all is well.

Dec 18, 2009 11:04 AM joaniji wrote:

Hi Duffy,

I sincerely hope that you are resting comfortably now and that your surgery went as expected.  I realize that your recent news is overwhelming and heartbreaking but I just want you to know that you are in the thoughts and prayers of the women here.  Many are holding you tight.  The best to you as you fight this beast.  Warm hugs, Joani 

Dec 21, 2009 08:46 PM konakat wrote:

Hi Duffy -- Checking in to see how your surgery went, how the chemo is going.  I hope you're comfy and the chemo's not to hard on you.  Hugs,

Elizabeth

Jan 1, 2010 09:11 PM zipcode wrote:

Hi duffymom Sorry to hear about the brain cancer.It is really hard dealing with the triple negative thing.I am not stage iv but do have triple negative,I go to the um for treatment they act like move on dont worry but it is hard.I will be thinking of you. Keep us posted we are here for you

Jan 2, 2010 08:46 AM respin wrote:

Duffy, I hope all went as well (no even better!) than expected and that you are resting comfortably.

Lisa, Lisa (chain) and Caryn, keep on rockin'!