lynn-from-downunder
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Hi Daisy, A fellow Aussie!
Sorry I wish I could perform miracles and make your mum and my husband well again. Just know that I can relate to what you are going through. Cancer had reared it’s ugly head in my family, but I’d never heard of it occurring in the bile ducts, until my husband was diagnosed at the end of Jan this year.
You just have to try and soldier on day by day as best you can. I am glad that your mum will be admitted to a nearby hospital. While she feels strong enough, she will enjoy the normality of having friends and family around. Having people around will also allow her to focus on other things besides her condition.
Thinking of you both and hoping everything goes as well as it possibly can for your mum.
Regards
Lynn From DownunderHello again,
Thought it was about time I updated my last post, in case anyone can provide some feedback.
Well its been about 6 wks since Greg decided to abandon day 1, round 2 of his 1st lot of chemo. It had been so debilitating for him but since he stopped chemo he has been feeling so well and able to do so much more ( experiencing quality of life).He has also regained his wicked sense of humour!At the start of this month we saw his Onc who was pleased that the cancer had not progressed. However…….. it was noted on the report of the CT scan that there were a couple of white spots in the bone in his pelvis. The doc got Greg to have a nuclear bone scan to see if it was related to the cancer or not. The Doc rang a few nights ago re the results and told Greg that if any spots show up red, it is a sign of cancer. Of course, they had to light up red! There was also another area in the bone of his left shoulder blade that showed up red.
Has anyone had experience of CC travelling to bone tissue? We of course will discuss the implications of this when we visit Greg’s Onc early next month, but it is a bit daunting wondering how this is going to affect him in the future.
We are going on a 6 hr train trip in a couple of weeks to see Greg’s elderly parents which we are really looking forward to, then when we come home and see the Onc, we will discuss trying a new chemo drug. But again if the chemo knocks him around like last time and results in another hospital visit due to infection, Greg will stop chemo.
Greg truly amazes me with his positive attitude. Our 2 golden retrievers are great emotional therapy as well.
Hoping to hear from someone soon.
Kind regards all
LynnHi Tiah, Thanks for the post.
Yes when Greg was having “the liver resection op that he never had”, a biopsy was taken of the lymph nodes and cancer was present. We have also asked our Oncologist about Keytruda and similar immunotherapy drugs. Again, we run into the trouble of Greg’s kidneys not being able to cope with the medication. We have also enquired about radiation but were informed that it is beneficial for small tumours and areas of cancer invasion and that Gregs was too extensive and may damage a lot of healthy tissue.
We have decided to stop the Gemcitabine chemo as all Greg does is sleep, feels sick all the time(not that he is physically sick) and basically cant do anything. He has lost a lot of the muscle strength in his legs as he doesn’t move too far as he gets so tired. He just wants to get out into his vegie gardens and potter around the yard, which he cant at the moment.
He has been off Gemciteabine for 2 weeks on Tues. He is slowly feeling better but still gets tired and breathless when he walks around too much. We’re not sure if it is because of the drug still being in his system or if it is the cancer causing this.
Anyway we have an appointment with his Onc in a week and a half to look at Plan B.
Thanks to all those who have sent posts to us and best wishes to all.
LynnHi Everyone,
Well after just replying to 2 posts I thought it time to inform you of Greg’s progress (or lack there of)
In my original post I said that Greg had started chemo. Because he has his kidney problem, his Oncologist only put him on the drug Gemcitabine. It is usually used in combination with Cisplatin but Greg’s kidneys could not handle the 2nd drug. He has had 1 cycle of Gemcitabine, ending in 2 infections in the blood and hospitalisation. He recovered from that and started Day 1 Round 2 of chemo last Tues (5 days ago). Again he had to be hospitalised with a fever last night.
His Oncologist told us before Tue if this drug was too hard in him, he may try a new one called Taxol. I googled it and its other names are Paclitaxel or Onxal. Does anyone know much about this drug? The Doc told us it is not quite as effective as Gemcitabine and will cause hair loss (Not that that is a major concern).
So once again that brick wall has stuck itself right in front of us with his 1st chemo experience.
I am wondering if we are doing the right thing. I never thought I would say that.You want to prolong Greg’s life but at what cost? Being constantly sick and tired and having no desire to do anything much at all. He is not the boy I know! From what I have read chemo can prolong life but only by a few months. Once again I suppose it depends on the individual and the type of drug. Does anyone have any insights into how much time chemo can prolong your life?
Anyway, we will soldier on yet again and see what the Doc has to say. Maybe this new drug may help. Will visit Greg in hospital this morn.
Thanks for being there everyone
LynnHi Kernos
Thank you for your input- so sorry to hear you have CC but it’s great that you are able to participate in clinical trials. I hope you have a network of friends and family to support you. Do you?
I agree with your attitude to take each day as it comes and get out and enjoy time with your family and friends. Make sure you don’t stay in your room too long by yourself if you can help it!
Sending you strength and best wishes on your journey.
LynnHi Lis
Was great to hear from an Aussie, but of course not in good circumstances that we are brought together.
You need to get yourself a good Oncologist to guide your dad and yourselves through the next phase of his journey.
Truly wish your dad all the best. Miracles do happen.
Best wishes to you and your family too as you ride the roller coaster.
Lynn
Ps. We lived in Mackay for 6 months after 1 1/2 years in Mt Isa. Greg got his 1st tattoo in Mackay.
(A mid life crisis thing!) Eimio Pub-Magical!Thanks Lainy and Deb for your support. You definitely lifted my spirits. I am really quite fine-just was on a low point on the old emotional roller coaster when I wrote my 1st post.
It is an amazing website that you are all involved with- providing both emotional support and hope. Plus people can gain an insight into drugs and treatments that are being tried by others and appear to be working.
I am doing as Deb said-taking each day as it comes.
We have some great doctors in Australia but you guys appear to have Drs who specialise in Cholangiocarcinomas. Our Oncologists treat all the major organs so you are leading the way in America having Oncologists specialising in this area.
All the best to all!
