Forum Replies Created
January 21, 2008 at 8:14 pm in reply to: feeling guilty about feeling good #18865
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!!!!!!!January 14, 2008 at 1:10 am in reply to: Experiences with back/limb pain #18742
Hi everyone – thanks for sharing you experiences, it’s always valuable to hear from other and understand the complex routes this disease can take.
The last episode of arm pain has apparently subsided and dad seems to be doing much better. With my dad it’s always very hard to judge pain, particularly in the back and limbs because he’s always had a really bad back and his threshold for pain is not great.
As happy as we are that now the pain has gone away he is super tired (i think the pain really fatigued him in combo with the multiple pain relievers and sleep meds he took to rest). Having a low red blood count does not help either.
My dad’s disease progression is rather atypical and that’s why it has been really hard to evaluate problems. He has not really had any of the traditional symptoms (outside of the initial jaundice many months ago) but he has had two severe infections and he has his lung mets. We also think the latest chemo regimen he used really gave him a beating so hopefully now that it has changed he can recover a bit.
As frustrating and tiring as it is we just need to continue the fight and be grateful he has had an overall reasonably comfortable experience so far.
Anyway, thanks for sharing and I wish you all the best of luck.
AmilcarJanuary 11, 2008 at 9:52 pm in reply to: Experiences with back/limb pain #18737
sorry to hear that – certainly not the news one wants to hear.
one question on your pain, has it been pretty consistent or intermittent? Also, did you sense any sense of progression or was it relatively consistent.
Dad definetely needs to get a new scan.
thanks for the insight!
best of luck!
AmilcarJanuary 9, 2008 at 9:46 pm in reply to: But how do you feel? #18645
Hi Barb – my dad just came from the Dr. and he’s decided to change his combo from Cisplatin/Irinotecan to Gemzar/Irinotecan. We all believe the cisplatin was literally wasting him away. He went from ~ 159 lbs to 133 (he’s about 5′ since he started taking it and it was remarkable how much better he felt when he was off. Sadly to say it was probably the most effective treatment he’s had to date but it was so aggressive he chose much like you, quality over quantity.
This is his second try with Gemzar that actually worked OK for a while and maintained him quite stable. We are hoping things can work again in combination with Gemzar.
Anyway, best of luck and I hope you feel better.
Take care and best of luck to everyone!
AmilcarJanuary 8, 2008 at 5:34 pm in reply to: why remove the biliary stent? #18625
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.
AmilcarDecember 27, 2007 at 9:15 pm in reply to: Going back to a old chemo regimen – experiences anyone? #18476
Thanks Patrice, everything is helpful.
Dad has a round tomorrow but I truly hope he skips it and goes to something else. He was so much better this week after not getting cisplatin this monday.
Thanks for the feedback, I truly appreciate it.
Best of luck and happy holidays!
AmilcarDecember 12, 2007 at 5:51 am in reply to: Newly Diagnosed #18325
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!!
AmilcarDecember 10, 2007 at 10:19 pm in reply to: Caroline Stoufer #18292
This is such a terrible shock. Caroline was the first person to talk to me when dad got diagnosed. She was always so positive and upbeat. It’s a sad day and I offer my condolences to her family.November 16, 2007 at 6:50 pm in reply to: Another good set of Labs #17833
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.
AmilcarNovember 9, 2007 at 12:02 am in reply to: Ever Wonder #17706
I’ve become a little superstitious and disappear when things are relatively calm, perhaps trying to emulate some type of normalcy. My dad is doing OK and his last CT (2 weeks ago) showed no progression so we are all a little relieved. He is still thin as rail (130-135 lbs) but he seems more energized and a little more lively. He still has consistent stomach issues but we still think it’s the chemo since it’s not worse and it seems to accentuate when he’s a couple of days after the infusions.
I do agree it’s very worrisome to see people stop posting and stop hearing from them without thinking the worse.
Hopefully more people are like me and try to be quiet when things are OK so this disease does not totally overtake our lives.
Best of luck to everyone!
AmilcarOctober 19, 2007 at 4:41 pm in reply to: Chronic stomach ache – sign of worst things to come? #16865
Hi everyone –
My dad has improved marginally and has started to eat again and has not had any increase (in fact a mild decrease) in stomach pain. The only issue that lingers is that he has pretty severe diarrhea. When he started with the new chemo regimen we all thought it was the combination of irinotecan and cisplatin. Now he has not had chemo for two weeks (given his low white blood count) and the evacuations started again.
He was able to moderately control it with low dose morphine and with bismuth but it’s not working all that great anymore. He is no pain (except the sporadic colic) but he has lost a lot of weight (about 18 lbs) and he will not recover the weight with these symptoms.
Has anybody experienced anything similar? The symptoms are very close to what you would expect from the chemo but he has been off for a while now so it could be something else.
Any ideas/suggestions/experiences will be greatly appreciated!
thanks and best of luck to everyone.
AmilcarOctober 8, 2007 at 6:40 pm in reply to: Experiences with steroids and chemotherapy #17192
Dad could not get his chemo today b/c of low white cell blood count. We are considering using Aranesp or Procrit and we continue to struggle with the steroids issue.
I personally feel exhausted.
At least he was feeling OK and ate quite well.
Best of luck to everyone!
AmilcarOctober 5, 2007 at 4:30 pm in reply to: Experiences with steroids and chemotherapy #17189
Thanks to everyone for the insight – I think dad would really benefit from the steroids but he solemnly refuses. I guess it’s a minor consolation that if he does not want to take them he might be feeling a bit better. I still would like him to want to feel a lot better.
This disease is hard enough as it is and my dad sometimes does not make it any easier. I think being a physician has not helped him at all, on the contrary it has made him skeptical and a little hopeless.
Thanks to everyone and I wish for the best to your loved ones.
AmilcarOctober 2, 2007 at 8:35 pm in reply to: First steps in the battle against the disease. We need directions pls #16832
Hi everyone – my dad has a metal stent that has clogged twice. The first time dad developed such an infection he almost died. The second time it was a bit less severe but still spent a week at the hospital.
The second time the dr’s added a derivation(?). I had never heard of anything like that but this was about 4 months ago and he’s still going with this.
I am already starting to insinutate it might be time for a checkup with the laparoscopist to insure we are not caught off guard. Dad is currently very thin and weak and an infection would likely be it.October 2, 2007 at 5:27 am in reply to: New biopsy and bad news #17164
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.