Hi From Australia
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Decided to make an appointment today with Gregs Onc. I knew it was the only option but we were just so devastated that our long awaited trip away may be jeapordised .But our minds were really made up early this morning when Greg developed this terrible itch. He couldnt stop scratching all over his body. It was driving him mad so I took him to emergency at a nearby hospital. They took some bloods & found his kidney function was extremely low. I had also noticed over the last 2 days that the whites of his eyes were looking a bit yellow and some of his skin. His birilbin level is really high in his liver which may explain the itchiness. I left the hospital at 5.30pm & his itching had finally settled down. They took an ultra sound late this arv to see if there was a blockage in any bile ducts & if so they informed us they may have to insert a stent to open it up. The results were not available b4 I left. I will go into the hospital early to catch his kidney spec and Oncologist on their hospital rounds to find out more info.
Thankyou for your replies. I know sumtimes I get a bit lost in all the info in peoples posts but it is fantastic that people out there like yourselves take the time to read peoples many varied life experiences.It is also good that you can communicate with people that have been in similar situations dealing with this disgusting disease. I have a great lot of caring people around me but until you go through the same experiences you dont really know what people are going through.
Fingers crossed for us tomorrow.
Regards
LynnHi Lynn, Again can only echo Lainy and Marion, do not wait, consult doctor. CC progression is so fast, delay can have impact on treatment options. Hope you have answers to your questions soon.
Take care
RanganiLynn…..I agree with Lainy, contact the physician. You may want to ask why these symptoms appear in the first place. Is it due to disease progression and if so, how can it be addressed?
Hugs,
MarionDear Lynn, I am do very sorry to her about your hubby’s down time! I would call the DOC and tell him everything that is going on. With the things going on, we need to keep in touch with the DOC! I I am wishing for the very best!
Hi all,
Im a bit afraid the honeymoon phase of this horrific journey is coming to an end. My husband was dry retching early Sat morning(a wk ago) and last Thu was vomiting He was lucky to get an app to see his Onc later that day. He said he should take an anti nausea tablet before each main meal. The Onc told us the tablet would help remove food quicker from his stomach.This has helped the nausea but he has felt a bit light headed which we think is a result of this tablet. It says on the packet that it can cause a lack of alertness & Co-ordination. So we decided to only take these tablets when he actually felt sick. He has had tea tonight but says he feels bloated, so he has taken a tablet. He has also felt more tireder the last few days & has had to lie down throughout the day and has been going to bed at night earlier. We went into town to do a few things about 8.30 am a couple of days ago. We got home about 10.30am & he slept for 4 hrs.
I know we have both been looking forward to our trip away to the beach in a wks time & he keeps saying he will b ok & that we will be going. He was going to have all his scans when we got back & see the onc on the 17th of Oct. However I am wondering whether to c his Onc again soon to see if we should get scans asap to see what is going on in his body & possibly start the chemo drug Taxol as that seems to be our only option atm with his chronic kidney disease. Oh he was also complaining of aching legs when he went for a lie down today. I dont know whether to leave it a couple more days to see how he goes or whether to book him in to see his Onc again tom.Suppose Ill just have to see what my hubby thinks tom morning. We have SO been looking forward to this holiday.
Any suggestions & are his symptoms indicating cholangio progression.
LynnDear Lynn, it is so good to hear from you, Greg and the Shadows! You both have the right idea, live your life. There will never be any regrets. When we were at this type of point Teddy called our life “our Honeymoon” and would tell everyone we were on our Honeymoon. ENJOY! ANd wishing you the best and safe travel!
Hi Everyone. Just wanted to let you know how blessed I am that although my hubby Greg has this hideous disesase, he has remained “Healthy” since he went off chemo in May.
We have both come to an acceptance that his condition is terminal but we have filed it in the back of our minds and continue to live relatively normal lives.
We went on our train trip to Bundaberg in June and had a great holiday catching up with Greg’s family and some old friends of his. We are off on another road trip in a few weeks time for a 5 night stay at the beach. We can’t wait!
Greg continues working in his vegie garden and looking after his fruit trees and mowing the lawn on the ride on mower. He loves doing this. We also purchased an I Pad as he loves playing games on there as well. Plus we have our two golden retrievers which he adores and are always his shadows.
I work as a teacher aide 4 days a week ,but have Fridays off. We SO treasure the little things and usually enjoy a cup of coffee at our local favourite café and go for a drive and have lunch out somewhere as well.
Greg continues to eat well. The cancer has metasticised to a few of his bones but does not have any pain. He does get tired if we have a big day out or he over exerts himself physically but I am so amazed at how well he appears to be. We know it will not last forever, but it really makes you appreciate life in general.
We did see Greg’s Oncologist 2 weeks ago. He yet again decided to delay a new chemo drug for Greg to try as he has been feeling so good and because we want to go away on our trip soon. He did inform us that the cancer level had increased a bit (from 47 to 61) which we need to keep an eye on. We will see Greg’s Onc in the middle of October and will have the full blood test, CT and bone scans to see what is going on inside his body.
Just wanted to wish each and every one of you all the best.
Lynn
Ps. These are Greg’s shadows!
Daisy, I am so terribly sorry about what you are going though. I cannot help in any way with advise but I do have a paper with 10 Signs The End is Near. If you email me through this CC site I would send it to you. I believe that part of the anxiety is just not knowing. This paper will give you the sign to look for. Sending you prayers and please try to be strong. You never know how strong you are until “strong” is the only choice you have!
Lynn, my mum’s oncologist told me that they found cancer in her skull. She has no pain there so no symptoms as such, just pictures on a scan. I don’t know what this means in terms of prognosis but would really like to know. The not knowing kills me, I need to feel prepared for what life might dish out to me.
Lynn….. I will begin answering some of your questions, but truly hope for others to chime in with their own thoughts. The collective wisdom of our members is of significant value to all and by far supersedes that of my personal opinion.
The good news, dear Lynn, is that your husband feels great. Being that the cancer is systemic, the likelihood of metastases is high, but there is no clear path answer as to where and when it will pop up.
In this case though; the disease moved to the bones, a not so uncommon turn of events. Disease progression varies; some patients don’t feel physically impaired and continue to do well until they experience pain associated with cancer to the bones.Now, you are revisiting the question of chemotherapy and whether it is tolerable and whether it has an affect on your husband’s metastases.
In general (but not true in all cases) bone metastases are treated with radiation with fairly good results.
You may also want to look at previous postings obtainable by means of our search function, top bar.
Nice to hear of the upcoming trip and Greg’s incredible attitude, it has served him well. I couldn’t agree with you more, Golden Retrievers are the best for emotional support.
Hugs,
MarionHello 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
LynnLynn,
Although different chemo, my father is still exhausted and sleeping many hours a day 4 weeks since his chemo finished. The nurse indicated that he could still be on the down slope since the chemo builds up with each cycle, so it very well could be the chemo still taking its toll.
I hope he starts to feel much better soon and we look forward to hearing about Plan B.
Take care,
CatehrineHi 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 Lynn,
I’m Tiah and I’m also from Australia. I’m very sorry to hear about your husbands diagnosis and that he is not feeling very well with chemotherapy. My mother (49 years old) was diagnosed with intrahepatic CC in August 2015, and we are based in Adelaide.
Having glomerulosclerosis would definitely complicate things from a chemotherapy point of view because chemotherapy generally can be quite nephrotoxic (toxic to the kidneys), and also the kidneys may not be able to clear out the drugs as well if his kidney function is poorer, and therefore the chemotherapy would need to be given in lower doses or avoiding certain types of chemotherapy drugs which are predominately cleared by the kidneys rather than the liver.
A few things worth investigating are, has he has a biopsy performed on the lymph node to ensure that the cancer has spread there? Or are doctors assuming the spreading due to CT scan results? My mother has abnormal/enlarged looking lymph nodes nearby the liver however multiple biopsies have now shown no spreading to these nodes. Also, have you discussed other methods of treatment other than chemotherapy, such as immunotherapy or radiation? The guide through the system can vary also depending on if you are a public or private patient, however being in Sydney means you are able to access services much easier.
You are welcome to have a look at the thread of my mothers journey that I have posted.
Wishing you all the best,
Tiah
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