Hi From Australia
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Yes well, its 11:15pm and I cant get to sleep. My man is slowly deteriorating and I feel I am already starting to lose the man he was.He is so tired all the time and cant really do many of the things he used to love doing outside. He has lost weight and is quite pale.He is ok when awake but has lost his spark.I think thats going to be the hardest thing for me- seeing Greg decline. I already watched my mum do that for 6 weeks before she passed away from lung cancer 5 years ago.
Anyway I know we have a lot to be thankful for- that Greg has been basically symptom free for about 5 months so we could get out and enjoy life. Plus we were fortunate enough to visit his mum and dad a couple of months ago, who live away. Gregs dad passed away last week.
The pallative care nurse came to see us today-our 1st visit. We told our oncologist that Greg wants to be at home when he gets sicker so we just wanted to get this organised for when we really need their help. Our appointment with the oncologist is next Monday to find out the results of Gregs latest blood tests.
Can someone boost my spirits a little? Anyone got a good joke? A corney one that might make me smirk is ok too.
Wishing the best for everyone
LynnYes but when does a liver specialist or an oncologist say I want a biopsy of this tumour so it can be tested and possibly be used to help this particular patient.? Originally the liver specialist who operated to unsuccessfully remove the tumour in Gregs liver , told us a biopsy would not be possible to check if it was malignant. They said there were too many blood vessels in the liver to successfully get a biopsy. Also when the operation was aborted, one of my husbands lymph nodes was removed and we were told it contained CC. Could they not work out the mutation from that or does it have to come from the tumours themselves? And is it a request from a patient for a biopsy to be done and if so, is it a question of whether the patient has the funds or is LUCKY enough to find a clinical trial for the particular gene mutation they have? It would be different protocols in different countries too. Nothing is bloody easy with this disease! (excuse the languague) More questions for our Onc I suppose ,who is now on hols for a week.
Anyway Greg is continuing to improve after his op yesterday and getting back to his normal self again. Hopefully, he will be home in 4 days all going well.
Will be in touch.
Regards
LynnLynn…..A biopsy is the removal of cells or tissues for examination by a pathologist. The pathologist may study the tissue under a microscope or perform other tests on the cells or tissue. There are many different types of biopsy procedures. The most common types include: (1) incisional biopsy, in which only a sample of tissue is removed; (2) excisional biopsy, in which an entire lump or suspicious area is removed; and (3) needle biopsy, in which a sample of tissue or fluid is removed with a needle. When a wide needle is used, the procedure is called a core biopsy. When a thin needle is used, the procedure is called a fine-needle aspiration biopsy.
The tissue then will be tested for specific DNA gene mutations (faults) for which a drug is available. At this point, all targeted drugs are tested in clinical research studies
Hope this was helpful
Hugs,
MarionThanks again guys.
It’ s great for us to hear some good news for a change.
Can anyone explain the process of how drs take a sample of a tumour to see if there are genetic mutations and then what is this appropriate targeted therapy? Plus no doubt this would b costly. We do not have private health insurance. This above process has not even been suggested to us but I have read snippets on the discussion boards here. May not be an option for Greg???? Our onc has not discussed this with us. Maybe we r not as skilled up on CC in Aust as you r over there.
Anyway
Bye for now everyone.
LynnGreat news Lynn, thanks for sharing! Fingers are crossed for Greg and continued improvement.
Hugs,
Gavin
Lynn,
So happy to hear this. Hope things keep improving and you two will stay challenge free for a while. You both deserve a break.
Hugs,
DarlaGreat news, Lynn. This is all why we call CC a roller coaster ride. One we did not want to buy a ticket for. Congrats to Greg, now he can be his old self!
Hi Guys,
Well I’m swinging from the fans right now ! (well not quite). Gregs procedure to insert a metal stent in a section of his bile duct ,went well 2day. Already the colour has started to come back in his face again.So hopefully both his kidney and liver functions will continue to improve and he will be back to how he was b4 he came into hospital.The aim is for this to last as long as possible. That is until the next challenge arises or that elusive “miracle cure” of course.
Bye for now
Lynn From DownunderThanks everyone for ur support. I’ll let u know how things go. If its good news u will hear about it soon.
Regards
LynnLynn….I too hope that the stent will help help reduce the ammonia buildup. You may want to ask the physician about hepatic encephalopathy, what it means and what to expect.
Sending tons of hugs your way,
MarionDear Lynn, I am so very sorry to read that Greg is still so miserable and I hope the stenting does the job. I agree with what he says about the TV, I never heard that one before, about it being free so what should we expect. Good one. I hope that the stenting is successful so he can catch a break. Take care of yourself as well. Will be thinking about you both!
Well Greg had an MRI as well & yes the specs think the tumours have progressed substantially in a quick time period.There is a blockage in a few branches of major bile ducts. His jaundice has been getting worse and both his kidney and liver functions are not good. Yesterday he had about 5 turns where he was staring blankly at times then mumbling incoherently which was very difficult to watch. The drs believe it is because of the toxins in his liver that cant drain out due to the bile duct blockage.
At least we were given some hope, when we were told that the gastrointestinal spec will do the procedure to insert a stent to drain some of the bile ducts. There is a chance when they get in, that the situation may be worse than they think and they cannot do the procedure. (Please not dejevue! We have been there & done that with the liver resection op that we never had! Thats so debilitating- thinking sumthing really successful can be done only to have ur heart broken with nothing to be able to be done ar all!) We can only hope.This procedure will be attempted tom afternoon.
Today Greg had no turns and didnt have to sleep at all while I was visiting. He was a lot more alert, showered himself , had a shave and sat in a recliner doing wordsearches. He didnt want the tv connected- Our tv programs over here leave a bit to be desired. Free tv Greg says- no wonder its free. You would never pay for it!
If hes feeling ok I’ll get the tv put on for Sun, as it is our Rugby League grand final over here & Greg likes watching the footy final games.
Anyway hoping for a good result for Greg tom. I am a bit scared as I can’t bare the thought of returning home with no hope of improvement for him.
Regards Lynn
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