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candydog
Member since May-6-08
21 posts		 Jun-01-08, 04:25 AM (PST)
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"Our journey"
 
   My husband was diagnosed with GBM Grade march 14th Melbourne Australia. Huge 10 x 8 cm left frontal tumour. He had surgery 17th and unsure what really occurred as MRI of 28th states no change. Tumour fast growing so resection grew back or nothing done? Had swelling and placed on high doses of Dexamethasone. Told to take him home to die.
Next day radiologist decided to do radiation anyway. Tansferred hospitals and had 20 rads over 5 weeks. Due to swelling the amount of radiation was reduced. Symptoms were also greatly reduced. Went from unconscious to talking, walking etc.
Sent to Rehabiltaton.
Second opinion as first guy don't trust as told me to let him die. MRI done and tumour even larger. Now right and left frontal.Offerred new resection and to be followed by chemotherapy. So far no chemo. as considered not well enough. Isn't dying a try anything?
Another hospital. Resection performed of 70% (but still huge). Developed blood clots in the lungs so recovery hindered. Again sent to rehab. and again no chemo. as now considered not strong enough.
Ordered DCA on 30th April and still waiting delivery. Ordered from two separate places just in case one didn't turn up but both haven't so far.
Metabolic products sent me an email suggesting a few Autralian doctors that may help me. Now onto one in Melbourne who is very helpful. He found a compounding chemist to do DCA and it is in processing and should have it Wednesday. Pretty expensive though. Also on B17 drink regime and Vitamin C infusions. Having acupuncture for neuraligia. Taking anti viral herpes meds. due to suspected link with tumours under trail by Duke University.
Have an appointment with oncologist Friday but preparing myself for no help again.
Feeling desperate and my husband is detiorating. He can still function in regards to all his motor skils but is losing his mental faculties. Very withdrawn, no appetite, reluctant to talk, starting to slur his words.
It seems too late now. The hospital he is at (the 5th he has been sent to), is nice and freindly but keep reminding me that no matter what I do the end is the same. To face facts.
He is on heaps of meds. Dexamethasone for swelling;
Nexium antacid
Dilantin for seizures he is yet to have?
Warfarin for blood thinning
Gabopentin for neuralgia
Lasix for electrolytes
Clexane for blood thinning (ceasing soon)
Valtrex for anti viral
Amlodipine Sandoz for blood pressure (should I get this changed to Verapamil?)
Well there you have it. He is now close to home so I go each day with his B17 drink and virus stuff. He comes home now at the weekends. When I have the DCA I will take this in. It is not worth having a discussion with the doctors over this as they think I am not in the realm of reality. So I now sneak. So they know nothing of the Vitamin C, B 17 or DCA.
I hope this story improves. My husband seems to be very strong as he is in good shape for 67 days in hospital and all the problesm he has had. I don't know neuralogically where he is but rehab. thinks 6 more weeks to go.
Can anyone help me with where he is at? What will go next? When is it no good?
Appreciate any help available.Thanks candydog



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