amilcar

Lisa – you should never, ever feel guilty about feeling well or having a positive experience so far. Even if one lives to be 100 there are never enough days in life and we should strive to enjoy every single one postively!

One thing I regret my dad did not do while he was still in good health was take as much advantage as he could have. While we spent great quality time together, travelled and had many conversations I feel we could have done even more. He was always too cautious and reserved and I think he could have been happier.

I have always believed that we get one shot at life and every day is a blessing; living is a verb and doing it to the fullest should be your priority. This is important not only for you but to your loved ones who will be happiest when you are feeling well.

I hope you continue to feel great for many, many years and that you ask yourself this question many times in the future.

Best of luck!!!!!!!

Hi – my dad has two metal stents, the first was introduced in June 2006 and the second in April 2007. So far the second one seems to have been working OK but when he only had one he had two major infections from blockage. Fortunately the blocking was not due to tumoral growth but the speed with which the infection spread was astonishing. The first infection almost took dad literally in 24 hours and once he recovered he still had two major cysts in the liver (these probably caused the second infection)

Dad now regularly monitors his liver function and particularly alkaline phosphatase as a measure for blockage. I think he’s due for a check up on the second stent which i hope can be more easily replaced since it’s a derivation.

Hope it helps.

Best of luck to everyone.

Amilcar

Hi Jane – my dad has had moderate success with both gemzar and cisplatin though on separate regimens. Cisplatin however has been very, very tough on dad and he has lost tons of weight and has been on a white blood cell roller coaster. It is a relatively old generation chemo so it’s relatively proven but certainly tough on the body. I would consider a palliative treatment in parallel to counter neutropenia and digestive tissue damage. Most palliative clinics and specialty centers have options for this.

Best of luck and hope the treatment works!!

Amilcar

Hi Peter – great to hear you are doing well.

I have a quick question on regaining weight. My dad (65) has been fighting CC for about 20 months now and is still hanging in there but has lost a ton of weight (he’s about 5’8 and weighs 130 lbs). Most of the loss came very precipitously when he started with cisplatin and irinotecan. Both the oncologist and the palliative care team believe the chemo is the primary reason for the loss. He’s eating quite well again but cannot put any weight back on. Did you try any specific diets or regimens that helped you recoup some weight?

Thanks for the insight and I hope you continue the great fight.

Best of luck to everyone.

Amilcar

Hi Charlene – I am really learning as we go and one thing has become very clear. This disease is so rare and unpredictable that most doctors tend to err in the pessimistic side and often seem to be somewhat cold and give little hope. My dad has been given terrible prognosis from every doctor he’s seen and I think it has hit him very hard. I also think many, if not most doctors, have very little experience with CC unless they work in a specialized center and their analyses are seldom convincing or detailed enough.

It is so consuming to be always expecting the unexpected and trying to develop patterns and predictions. This can consume the caregivers and the patients as well.

I feel the same sense of frustration and some days I deal better with the ambiguity than others. I have learned however to take things a day at a time.

I wish I could be more helpful but perhaps knowing you are not alone will be of some consolation.

Good luck!

Amilcar