October 30, 2011 at 11:16 am #53162mlepp0416Participant
Elsie: Welcome to the site that no one really wants to join. My husband Tom is in a similiar situation. He did go through a resection in June ’08 and had a (almost) great 18 months then started w/jandice. He has an inoperable tumor now and is on his third time with chemo. This time they are giving him 5-FU and he is very tired and weak. Walking is very hard for him and he has lost a ton of weight.
But on the flip side, in a few days it will be two years since his ‘then’ oncologist told him he’d have less than 6 months. We are no longer with that oncologist because he didn’t seem to be able to do anything other than to sit at his desk and stare at the computer.
Tom now has a great team of doctors looking after him. Although they have told us that they can’t ‘cure’ him, they gave us options which is what we were looking for. And they would not give him any indication of how long they felt he had left, that is up to God, not doctors. For which I am grateful because that is what I needed to hear and what I thought all along!
Please come back to this site often, as you will gain a lot of knowledge and also get comfort from knowing that you are not alone with this evil cancer. We have a lot of caretakers posting on the site, as well as CC patients. We all learn from one another and we all get moral support as well. Only the people that are dealing with this cancer really understand what we go through!!!
Your partner is going to have good and bad days, just like my Tom does. One day he is bright and chipper and the next day he sleeps all day. However, he has been on the 5-FU chemo for only two weeks and it really seems to be doing a number on him as it seems like he is sleeping more and more and is really tired all the time. It could just be that the 5-FU is too strong for him as he only weighs in at 112 (He used to be 180) and he is 6ft tall. (very thin now!)
Take it one day at a time, never accept ‘no’ for an answer, ask what else can be tried/done. Make them think outside the box. Make sure that the docs are familiar with CC. Take notes and write down your questions or you will surely forget to ask them. Do all the research you can on CC as the more informed you are, the better questions you can ask! (I was so well informed that I had a Mayo Clinic doctor ask me if I were a doctor!)
Go with God and KEEP KICKIN’ THAT cancer.
Prayers are coming your partner’s way from Wisconsin.
MargaretOctober 29, 2011 at 4:16 pm #53161pamelaParticipant
Your story is very similar to ours. This thing just comes out of the blue and turns your world upside down. I wish you and Jim all the best as you fight this disease. Like you, I searched and searched for information and support and I found my home in this site. Best wishes and bright days ahead.
-PamOctober 29, 2011 at 1:35 pm #53160lainyParticipant
Good Morning Elsie from the other side of the World! I am glad to hear Jim is weathering the Chemo well and as to the results we can only second guess until the Scans. This is one of the worst times and we have now become to call it “Scanxiety”. I think our Jim Wilde gave us that one! We are great around here for making up words! My only suggestion at this point is to talk to the Doctor about the pain. We don’t like to hear that word and patient comfort is the first thing on our list. Sending best wishes and prayers for a good news scan.October 29, 2011 at 10:26 am #53159
Hello again. Jim has now had two cycles of chemo and is scheduled for a scan next week to see if it is having any effect. I am concerned about whether it is a good idea because I can see that his breathing is becoming more laboured and he is slowly getting weaker. He is experiencing acute pain episodes more often and can no longer walk any distance. I hope that he is not disheartened if the news is not good.
On the bright side – he is hardly experiencing any side effects from the chemo. It was found that his sore throat was caused by thrush so was quite easily treated and I hope that information may help someone else. He does have some mouth ulcers but thankfully no nausea at all so is still enjoying food and a drink!
His sisters are visiting from the Uk and whilst bittersweet it is lovely to see them enjoy their time together. After a 6 week visit they will be going home in about 8 days and I am dreading the farewell although I’ll be happy to have Jim back to myself (in between numerous visitors of course!).
I have been so busy lately that coming onto this site has only been occasional, but I am always encouraged by what I read. It is a relief to write what I feel knowing that someone else understands.
Thank you. ElsieSeptember 24, 2011 at 8:32 pm #53158gavinModerator
Welcome to the site. Sorry that you had to find us all and I’m so sorry to hear about your partner also. But I am glad that you have joined us all here as you will get a ton of support and help from everyone. I can so understand the shock that you are feeling right now, that is normal. I felt the same when my dad was diagnosed. He was well, looked well and was active. Then the jaundice appeared, he had all the tests and over 3 weeks later he was diagnosed with inoperable CC. He was told that his CC was inoperable due to the location of his tumour and it being too close to the portal vein as well.
I know you say that you are not much of a poster, but please feel free to come here as little or as much as you want. We will always all be here for you and can relate so much to how you are feeling and what you are going through. And if you have any questions at all then just ask and we will do what we can to help in answering them.
My best wishes to you and Jim,
GavinSeptember 24, 2011 at 5:00 pm #53157marionsModerator
Elsie….good to hear that it is working for Jim, but you want to make sure to report everything to the phyisician also.
All my best wishes,
MarionSeptember 24, 2011 at 8:08 am #53156
I’ve never posted on a forum before, but I’m glad I took the plunge! I’m humbled by your responses and am surprised by how moved I feel. Thank you.
I couldn’t find Chloraseptic but bought Difflam throat spray which contains Benzydamine Hydrochloride which has helped a little and some ice blocks (popsicles) which Jim is very happy with, so I think they may become a staple in our house too. Again, thank you.
ElsieSeptember 24, 2011 at 7:08 am #53155marionsModerator
Hello Elsie…..I would like to follow Lainy and Bryon in welcoming you to the club no one wants to belong to. The sudden onset of symptoms is not uncommon as this cancer is known to move along silently. (It is believed that my husband may have had this cancer for up to two years prior to detection.) . Also, I wanted to mention that popsicles became a staple in our household for sore throat pain. A possible side effect of chemotherapy called cotton mouth also can cause soreness however; in this case sucking on hard, sour candies provides relief. Try to stay hopeful and realistic and remember that our members will support you, cheer you, console you and are with you all the way.
All my best wishes,
MarionSeptember 24, 2011 at 3:40 am #53154mustangmortParticipant
Elsie, all our love and support to you and your companion. My “supposed” tumor in my liver is”VERY” undefined, so much so that they have not officially diagnosed me as CC. However, I know and my surgeon very much supposed that CC is the devil with me. The tumor is small so that the scans cannot really show anything definite, but it has gone to my lymph nodes. My only saving grace is that the biopsy of the lymph nodes showed slow growers. I pray that you will find the best help in the treatment of your partner and stay with us here. The emotional help here is second to none.
ByronSeptember 23, 2011 at 9:53 pm #53153lainyParticipant
Dear Elsie, welcome to our wonderful family where you will find the most courageous and caring people in the world. I am sorry to hear about your partner and yes it is monster, this CC. The only thing I can recommend for the sore throat (don’t know if you can get it there) is Chloraseptic. Its a spray and works quite well and you can use it as often as you want. Gem/Cis seems to be our cocktail of choice around here. I understand not everyone likes to keep posting but please check in now and then and let us know how things are going, we care.September 23, 2011 at 9:29 pm #5700
Hi, after four weeks of exhaustive tests with many twists and turns my partner of 20 years was diagnosed with intrahepatic CC just over 2 weeks ago. He has a 12 x 12cm tumour in his liver, 5 cm lymph node involvement around the portal vein and lymph node tumours in his chest with the likelihood of other sites being involved. Apparantly it is very aggressive and poorly differentiated and inoperable and he is on a gemcis regimen of 3 weeks on 1 week off in the hope that he will receive a little more time.
Although I think we’re coping ok, we’re still so shocked at the speed of this disease. Three months ago he played in a soccer tournament and his only sympton was a bad cough. Now he struggles to walk up stairs and is very weak. Thankfully he is coping with the chemo well, except for a very sore throat so if you have any suggestions for that they would be very welcome.
Thank you so much for this site. I searched and searched for information and was having very little luck until I stumbled onto here and it’s really helpful and reassuring to know that we’re not alone. I’m not much of a poster but did want to let you know that you’re helping people around the world.
Thanks and regards
Elsie, Sydney Australia
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