jmoneypenny
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Hi – my mother had intrahepatic and the only way they could make a positive diagnosis was through a biopsy – I know you’ve tried that, but they may be able to target a different area with the cc in mind. My mother also had no jaundice (until the very end), no need for stents, just fatigue and some discomfort in her right side.
I don’t have much info – just wanted to say welcome and hope you find some answers here – and GOOD LUCK! Read up on all the people who have been fighting this and doing GREAT and you’ll feel a little better! As everyone here likes to say, you’re not a statistic, whether it’s cc or unknown primary.
Best of luck,
JoyceJust wanted to chime in that my mother had autoimmune problems that turned into autoimmune hepatitis, and what precipitated all her problems was the removal of her spleen 15 years before her death. I believe I asked elsewhere if anyone had a splenectomy prior to diagnosis – I also have a close friend who had her spleen removed and subsequently developed lupus, and has been on kidney dialysis for years.
-JoyceHello, so sorry to hear of your latest news. I just had to chime in here and I may be totally off the mark, but my mother had intrahepatic and was almost symptom-free, and suddenly developed jaundice (I noticed the yellow eyes). She never had to have a stent placed – I think the jaundice was the result of her weakening liver function and infection but the jaundice DID go away after she was treated for cholangitis – so it may just be an infection that can be treated with antibiotics and he won’t need a stent. Here’s hoping!
Best of luck to you,
Joyce
Congratulations, Sue – keep the good news coming! Enjoy your trip and thanks for the uplifting message to all of us here – though I’m sure it’s even more uplifting to you and your loved ones!
-JoyceOh Chris, that was so beautiful it made me cry. Still, I am sorry such a wonderful woman was taken from you – I know you will miss her dearly, even though she went with such dignity, and you have my sympathy.
Peace to you and yours,
Joyce
Dear Linda,
The doc who works at Columbia may be a good option too – like I said, some of the big hospitals are so overworked and overcrowded, that the smaller hospitals may make it a better experience, as long as the doc is good. I would get 2 opinions if I were you, and see which oncologist you like. My mother saw a world-famous oncologist but I didn’t like his uncaring manner, and I would have preferred someone more human, even if he didn’t have as much expertise. I was in the process of getting a second opinion when she died, and I wish I had done it sooner. You have to find someone who will be available to you and communicate and make you feel comfortable. Best of luck in your search – there are lots of great docs out there, I just didn’t find one in my limited time.
JoyceDear Missing U,
I was just thinking of YOU also, after seeing your posts – I know we lost our dear parents at around the same time. My mother died January 22, 2007. Thank you so much for thinking of me – you ARE following in your father’s footsteps in your kindness.
You are an inspiration to me, though lately I’ve been following in my mother’s footsteps only in her feelings of depression at the end — I can’t seem to shake it, this anniversary is so overwhelming, more than I thought it would be. I have also donated to various causes, mostly the ones my mother donated to (I still receive her mail and all the charities she gave to send prodigious amounts of mail), but lately I have just immersed myself in memories and depression. On the anniversary, I went to her gravesite alone and gave her flowers and spent an hour talking to her, though it was freezing and started to snow. I finally got up the courage to look at some of the videos of my mother with my daughter – the last one just a month before her death, the two of them horsing around like two goofy kids. Those were the everyday moments, like you said, that you miss the most. It’s heartbreaking and impossible to share, to convey. My daughter is still grieving and she just turned 5.
I, too, wish you peace of heart and spirit. I know your father would have been proud of you – and WAS proud of you, while he was here. Just as I know that my mother was proud of ME – but it’s so hard to keep going on when my rock and my best friend is gone – so hard to imagine a future without her there. In my good moments, I always think “What would Mom do?” and I try to take it from there. She loved laughter more than anything.
With you in sympathy,
JoyceHi Linda,
Sorry about your dad – but it is a good sign that the lesions are small, so try to find the best care possible. Some people on this board have been succesfully holding off cc for YEARS and YEARS. My mother was in New York, I’m in New Jersey, and I’ve heard Sloan-Kettering is good – I do NOT recommend NYU, though they have state-of-the-art doctors and knowledge, because they are overcrowded with desperate people and the doctors are not very sympathetic, in my opinion.Best of luck to you!
Joyce
Dear Amilcar
My deepest sympathies. You knew this was approaching soon, yet you still must be devastated.
You wrote a great tribute – I think I would have liked Memo, as I would rather spend time with my thousands of books than with other people, too!
Take care of yourself and your mother – you have been a wonderful and devoted son.
JoyceDear Lisa,
Ditto to what everyone said, and congratulations on doing so well! I can honestly say, as someone who lost someone to cc, that I’m SOOO happy to see a success story – I don’t begrudge it all, and it is uplifting to myself and others to hear that this horrible disease can be beaten back. Keep posting your good news – we love to hear it and we NEED to hear it!
-JoyceI could write a book about how much I agree with you, how the pain and grief don’t go away and everyone just goes on with their lives as if your loved one never existed. I’m approaching the 1 year anniversary of my mother’s death and I’m definitely NOT okay, but no one wants to know about it. It helps to talk to someone who has gone through a similar experience – but even then, they may handle everything differently. I’m still angry in my grief and when well-meaning people try to console me, I automatically figure out if they’ve had an important person in their lives die. If you haven’t been through this PERSONALLY, I want to say, please be quiet about it, as no one can understand the depth of feeling. I guess you could say the same to ME, though – I haven’t lost a spouse but a mother, and it seems the spouse loss leaves the most traumatic and long-lasting grief in most cases.
Anyway, my heart goes out to you– everyone grieves in their own way and if it takes you 15 years, then that’s normal for YOU. If a support group would help you, then you should do it (I couldn’t stand it myself) – or any type of counseling or just a good friend who will listen and not say all the dumb things people say. Or antidepressants. Or meditation, biofeedback, etc. Some people just don’t “bounce back” from a lifetime of loving someone, and if that’s crazy, well then I guess I’m nuts. The worst is when people say “She wouldn’t have wanted you to grieve for her like this.” Heck, yeah, my mother would hope that I would grieve at least a bit! And since when did I ever do what she wanted me to do, anyway?
End of rant! Sorry you’re hurting so
Joyce
Dear Amilcar,
I am saddened by your news, but I agree that your father IS someone who beat the odds and he IS an exception, in that he had great quality of life and hopefully it will continue for as long as possible. He has had time to enjoy his family and his life, and you have had time to really appreciate him – those are precious gifts.I hope your dad has a comfortable last few months – I’m sure he’s comforted by the loving family around him.
You have always seemed so logical and clear-headed – if your mother is anything like you, then the two of you will cope together, using your combined strength. I’m not saying that you both won’t be devastated, but I believe a realistic attitude goes a long way. You are obviously very devoted to both of your parents, and I dearly hope neither one of them suffers too much because of this disease and the grief it brings.
Just wanted to say I admire your courage and wish you well,
Joyce
