raye
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Jeff,
Ashley is correct about the brachytherapy. I had this completed at the Mayo and the tumor was destroyed completely. The tumor was autopsied after surgery and it was nothing but a flat, thin, layer of nothing showing no activity whatsoever. No marker reading and no cells during the layered microscopic examinations.
Jen,
Have you received the information you needed? Please feel free to e-mail me if you need anything else.
McGill University Hospital in Montreal is now a designated CC centre for Canada. You could possibly ask the centre for advice and consultation for the K tumour. I’m sorry I still don’t have any physicians name to ask for on this. Maybe Marions has one. She’s the fountain of info around here.
Hey Lainy I had 2 bags blow up or leak badly too. Not much you can do except say”Excuse me I’ll be right back” What a mess! LOL Those were the good old days, I think…..
I used a very large safety pin and tied the bag right to the front of my underwear. Worked great, but I hated that damn thing. Carried it for drainage for bile and weepage pockets after my liver transplant for nearly 24 months. Not as bad as having to carry around a colostomy bag so I quit complaining when I saw a friend of mine having to wear one. Life is good now.
Time to go and you’ve already made the first step. get that biopsy done ASAP and head to the cancer centre. Ask and make sure they have someone who is famailiar with CC and can really help you.
I had an oncologist that told me ” You’re sicker than you think.” I aksed him how sick and his reply was” You have 6 months to live”. That was 37 months ago with great CC care and surgery. The next time he saw me he couldn’t believe his eyes.
Lulu. What a great story of perserverance and advocating for ones self. It pays to never, ever, ever, give up. ( paraphrasing Winston Churchill).
Good luck and keep on fighting . You’ll feel a lot better in the coming days. I can almost guarantee that!You are in the right place at UCSD. Can you tell us where the tumor is located? I’m a liver surgery transplant survivor and I’m always looking that an early detection lends a chance that surgery or transplant can be effectively done to help. Let us know what the surgeon says will you please?
Keep the faith.
PS I had several enlarged lymph nodes as well but nothing came of those.
Jen. Where are you located? If we knew that we could help you find a CC centre where you could get a second opinion or quicker treatment options. Also, let us know where the tumor is located and if there are any other circumstances we should be aware of.
Scraggle,
Raye here in Chatham Ontario. Should you have need of any information regarding services provided by the Ministry of Health and Long Term Care with regard to funding for certain chemotherapies and surgeries , if required, give me a holler here and I’ll look through ‘the maze’ of forms for you when dealing with the government health agents. My past experience has shown that the doctors and health care providers are not really abreast of all the Ministry has to offer.
If I can be of any help please don’t hesitate to ask.
Margeret,
Just a word of caution, keep an eye on your husband’s bloodwork and the blood that has appeared in the bag. I had a stent collection bag and went through heavy radiation on my Klatskin tumor, and as I was placed on maintenance chemotherapy my red blood counts crashed several times to the point I was hospitalized because of high CO counts. As a matter of fact one was so severe and happened so suddenly even after 4 packs of blood were transfused, I had to be airlifted to Toronto General Hospital to keep me ‘up and running’. I spent several times and more in hospitals over the blood leak before my transplant was completed. Surprisingly, it all went away thank goodness. Don’t get too alarmed, just be aware of trace blood and what may occur.
Fatigue after radiation, oh yeh. Its a common reaction and the body’s way of healing itself after treatment.
I hope you the best for both of you and keep coming back.
Rowena,
To add to Marions reply I can clarify that Dr. Gores has patient’s doctors approach him first. If accepted to the program you will meet with some very excellent doctors who will do the prep work with you before you see Dr. Gores. One of these people is Dr. Lasordo, and he is an excellent hepatoligist and surgeon. When you eventually meet with Dr. Gores he will spend all the time you require to talk with him. He sets aside the entire Wednesday for liver patients in the transplant program for ample time to talk. I know personally he works a 70 to 80 hour week with all the other activities he’s involved with.
Also as Marion mentioned Dr. Lowy has looked at your records, so progress is being made.
I was in the same position as you are right now, anxious and waiting for information and hoping for good news. Don’t give up yet and keep on pushing ahead.
Raye
