Posted on: Dec 16, 2009 01:53 AM
Friday night I was told cancer spread to the brain. I am having nuerosurgery at 3 Wed to insert an ommaya reservois into my skull, Like a port for your brain to admister chemo directlyl. Told I have a poor progrognosis of "months". Anyone had this proceedure before? Currently on Dexadron for brain swelling which is causing elevaged blood sugar. So several day pinpricks and insulin shohtsl
Ambien making me too sleepy to type anymore, so better sleep.. No more food or water til surgery - tough! Hope I wake up just fine!
Posts 1 - 30 (74 total)
Dec 16, 2009 06:06 AM pitanga wrote:
I will be praying for all to go well in the surgery and for the chemo to do its work on the tumor quickly and effectively.
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.
Dec 16, 2009 03:25 PM konakat wrote:
Duffy -- you're in surgery as I type -- I'm with you in spirit and holding your hand. Gentle hugs,
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.
Linda from Baltimore
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.
Dec 16, 2009 10:54 PM chainsawz wrote:
Duffy, we are all here with you. I have read other posts on this site about an herb called boswellia. I have talked with my radiology oncologist and neurosurgeon about using this in the future when needed and they didn't seem suprised and are not opposed to it's use. Maybe someone who has used it will post their experience? I am sending my best to you!! lisa
Dec 16, 2009 10:58 PM chainsawz wrote:I went to this site to find out the best info about brain mets, and boswellia: bcwatchdigest-brain.evidencewa.... I believe Analemma posted a while back that she was on this herb....she could possibly provide more insight.
Dec 17, 2009 08:10 AM MJLToday wrote:
Thinking of you & your succesful surgery.
Dec 17, 2009 12:42 PM, edited Dec 17, 2009 12:56 PM by CarynRose
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.
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 17, 2009 04:59 PM konakat wrote:
Caryn Rose -- congratulations on doing so well!!! An inspiration for all of us. Thank-you! Big hugs,
Dec 18, 2009 11:04 AM joaniji wrote:
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 18, 2009 11:37 AM chainsawz wrote:
Duffy - I am also hoping your surgery went well and you are getting rest. I am sending you cyber hugs - know I am thinking of you........
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,
Dec 22, 2009 11:47 AM LisaSDCA wrote:
Duffy - Please know our thoughts are with you as you brave this abominable treatment. Be strong, be determined and we'll have another inspiring tale to add to Caryn's! Rest in between treatments, or watch fabulous old movies with hot leading men (Notorious and The Sting come to mind) to get some pleasant diversion. It's gotta be approaching the final days of treatment - hang on to that... almost DONE.
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 12:38 AM LuAnnH wrote:
Duffy, I just found this and I am glad Caryn found this post also. I have seen good and bad with this procedure. I will be praying you will be another one of the successful ones. I honestly think that the longer we are living the better they are treating some of these "poorer prognosis" dxs. Anyway, love and prayers, hope to hear from you soon.