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Dear Sammi
My heart goes out to you and your family. I lost my husband on 7 December so I understand your pain. Thank you for sharing your Dad’s journey and I wish you strength and courage to cope with the sadness ahead. It sounds as if you have a close family, I have too, and having them has been a godsend.
Thoughts are with you. XXXThank you everyone for your lovely condolences, you are very special people.
Love and Best Wishes
Mandy and family
XIt’s good to joke Christian, we need to laugh still. Hubby only takes one dex tablet daily, he’s very slight so there has not been any weight gain, but it does help with appetite, and maintaining what weight he has. Although not a hearty appetite, but better than he had and a spark of energy now and again, which has been beneficial. Oh boy, fever! Glad your mum is in hospital and I hope that everything goes well, could have been the underlying infection that made her feel so awful and like giving up. Her case so much like my husband’s, once on antibiotic drip and clearing blocked stents he bounced back and is on permanent antibiotic tabs which have worked really well. Wishing you all the best hope your mum bounces back soon.
Take care, regards Mandy.Dearest Christian
My heart goes out to you and your mum. My husband (age 57) was diagnosed in April and unable to have a resection due to mets in the peritoneum. He had stents inserted but chemo was interrupted due to infection, then resumed. With chemo the tumour doubled in size, such a blow. Then stents blocked and he became severely jaundiced, the stents were cleared and he improved. Tried another chemo but no luck and he also had 12 rounds of radiotherapy to try and shrink tumour. He could have tried one more chemo but decided against it as it is a ruthless one and he wasn’t strong enough to take it. Stents are working well but mets spreading and causing ascites (fluid build up) in the abdomen which is being tapped every week. Appetite is also an issue and weight loss significant. He has been prescribed dexmethasone (steroid), this helps with appetite and energy so I recommend your mum try this drug if at all possible. We were given 3-6 months late July, nothing can prepare you for such a heartbreaking prognosis. We have palliative (hospice) care nurse visiting once a week at present and they are fantastic. Pain management is crucial and they monitor this. it’s such a hideous disease and I can totally relate to your feeling of powerlessness and helplessness. I hope that your mum can find comfort and relief, you are doing a fantastic job, being there to love, support and care for her.I ordered a book online, called “Lean on Me – Cancer Through a Carer’s Eyes” by Lorraine Kember, a lady from Western Australia who cared for her husband with terminal cancer. It’s a wonderful book. I think you can download an e-version of the book.
http://www.cancerthroughacarerseyes.jkwh.comSending you and your mum love, strength and courage Christian.
Kind regards
MandyDear Sammie
We are the same boat with my husband being diagnosed in April and a prognosis of 3-6 months given in July. I know exactly what you are going through and how helpless you are feeling. I’m with Duke, help your dad to stay positive as much as possible and look at at as many options as you can. My husband just finished radiotherapy and the tumour markers have come down after a week of finishing. The radio will continue to do it’s job for up to six weeks after cessation. So there is always hope! Best wishes to you and all the luck in the world to your dear dad!Mandy
Thank you Snowbird, so anxious about this next step, hubby down to 60 kg already and worried the drug will affect his appetite even more. Feeling hopeless : (
Hi Genevieve, thank you so much! I’m so glad that your husband was able to have the re sections and really hope that all continues to go well. My husband had his last radiation today but is still on a week of 5fU chemo via pump, apparently this aids the radiation effectiveness. We won’t know for at least a month whether the tumour will shrink as radio continues to take effect after the last treatment. My husband’s liver surgeon is the best in Melbourne but because the cancer had metastised into abdominal cavity he wouldn’t go ahead. He initially thought of removing 3/4 of the liver but because of the lengthy recovery the metastised cancer would have a chance to run rampant, so they had to get on to chemo immediately. I think my husband’s case is quite a difficult one unfortunately. I really appreciate your information Genevieve, we will see what the radio does and I will certainly keep Dr Grimison in mind for a second opinion. Yes, I’m curious about the molecular testing.
Best wishes to you and your husband!!!!
Regards
MandyThank you so much Gavin. Having had a look at the Trial documents it unfortunately it states that a patient must have received no prior chemo, my husband has, and prior radio must be completed at least 4 weeks prior to enrolment. He has two more days to go and it can take up to six weeks after cessation of radio for tumour to shrink. It’s not going to stop me investigating this option though. I appreciate everyone’s support and encouragement. Thank you too Marion.
Regards MandyThank you Jason.
For anyone interested info on the trial I mentioned can be seen at http://www.gicancer.org.au which also mentions a worldwide trial called “ACTICCA-1, on the role of chemotherapy after surgery to remove bile duct cancer”, a worldwide trial coordinated by the University Cancer Centre in Hamburg.
Regards
MandyThank you Marions and Lainy for your help, encouragement and support. Yes, we have been hit by the train and bat many times. I’ll check the study again, I’m sure it said “recruiting” and I’m writing to them today! My husband is only 57 and was in perfectly good health. I’m so glad I came across this site and looking forward to learning and sharing. X
