It has been a full week since Dad passed away and I'm surprised about how time is flying. The last seven days have been the strangest in my life; I have felt a combination of sadness, relief and amazingly (at least to me) a new lease on life.

I always asked myself if I would break down when my dad died, if I would cry a lot or if I would be surprised by my reaction. I think it has been the latter. While I feel a lot of pain I also cherish my life more than ever. I think going through this experience has been so traumatic and exhaustive that I feel more blessed every day about having the chance to live.

I almost feel guilty about feeling more happy than sad, even when I know my dad would have wanted it to be that way. Perhaps because we always talked about celebrating life it's possible I'm trying not to disappoint him.

I'm sure things will get harder before they get better. Right now it still feels like one of my dad's crazy trips. I'm not sure what it will be like not to be able to talk to him in 6 months, a year or ever again.

One thing I do know is that my dad would not want me to stop. He would want me to continue full on and I think that gives me strength and drive. I'm not a religious person and neither was dad so I cannot say I will ever see him again. I know however that I will continue to talk to him (in a non-crazy way:)) and I will work on making him proud.

Healing will take time and it might never happen completely but I will overcome any sadness and loneliness with all that I have to live for; he would have wanted it that way, for me, my mom and everyone he loved.

It has been a great pleasure to have the opportunity to share my questions, experiences and fears with the CC family. I can only hope medicine and technology will continue to improve and provide better solutions and help our loved ones live better and pain free lives.

I wish everyone all the best and strength with this terrible experience.

Keep on the good fight and stay in touch.

It is with great sadness that I post here to inform everyone that my dad passed away last night at the young age of 65. He battled CC for 20 months and died peacefully with my mom by his side and the rest of his family surrounding him.

Guillermo Alfaro was born in 1942 in Mexico City to a family of physicians and not surprisingly became one himself. In 1965 while a resident in Paris he met my mom, with whom he was married for almost 43 years. In 1968 they left for Edinburgh Scotland so dad could pursue his PhD; they later lived in Philadelphia where dad as a postdoctoral fellow. Upon his return to Mexico they had their only son (me) and lived very happily in the same house since 1973. Dad held a variety of teaching and research positions in the National University and National Institute of Cancer. He retired in 2006 upon his diagnosis.

My dad was a man of strange habits and a rather atypical person. He was affectionate but not social and would rather read a book than spend a night in the town. He devoured books and knowledge like no one I ever met and he was the person you could always count on for obscure facts.

Dad was a man out of time. Sometimes I think he should have lived in a different era. He was always out of sorts in big cities and loved his little country house outside Mexico City. He was a passionate traveler and loved to visit us in Seattle, where I often feared he would want to move:)

My dad was not a perfect man. Seldom agreed to things easily, had a temper and was Philly fan, something inadmissible in a Mariner household. He was also stubborn and would sometimes spend too much time with his own mind than with others. That however, made him who he was.  Eclectic, intelligent and above all honest to a fault.

I know I will miss my dad dearly and will cherish the conversations we had, his visits to Seattle and his love for my mom, my wife and his dear Ines and Andrea.

I feel a strange sense of relief knowing he is no longer suffering or depressed; I frequently think he was wasted by depression beyond any tumors.

"Memo" will be missed but he leaves a legacy that will not be forgotten (plus several thousand books no one will know what to do with)

Dad, I will miss you very much.

Amilcar

In just a matter of days my dad has deteriorated to the point of no return. Only last Thursday he went to the hospital and while the diagnosis was grim he was still walking around, eating relatively well and quite lively. Since Saturday it has all been downhill and he is probably reaching the end of the rope a lot  faster than anyone anticipated. Last week they spoke about 3 months and we'll be lucky if he gets a week.

This morning he vomited blood and has not eaten anything for over 2 days. Not only is this catching us unprepared but it is so strange that he never showed any of the traditional symptoms (jaundice, abdominal pain, ascites) outside of fatigue and weight loss.

I truly find this disease has tested us. It has been wildly unpredictable, exhaustive and at this point I only hope dad will be comfortable in his last few days.

He is currently at home and there are nurses caring for him. It is really unbelievable that only 4 days ago we were discussing how to upgrade his computer.

I know I need to be strong and cool headed but it's so hard. I only hope that his pain and suffering will relent soon.

Best of luck to everyone!

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!!!!!!!

5

(2 replies, posted in General Discussion)

My mom was asked for a meeting with the physicians today and the news we got are very sad. All the Dr's conclude dad is in the terminal stages of the disease and they think it will be about 3 months before the end.

I am disheartened by the news but in a strange way very grateful dad had a very good year and a half.

I know no one is prepared to hear this and I honestly feel doubly confused because in the last lab report, most of the numbers were good and dad still does not have clear CC symptoms outside of weight loss.

Since April 2006 when I heard the news while on a business trip I never knew what to expect and always wanted to defy the odds and be an optimist. I always hoped for my dad to be one of the great exceptions and for a long time I was convinced he was; in fact I still believe he's had a reasonably good life to date.

I only hope the last couple of weeks will be peaceful and dad will not be in great suffering. I think I can cope with his loss but I cannot imagine coping with him being in pain or suffering.

It has been a strange and in many ways rewarding times since dad got sick. I valued every minute we got and was happy dad could come visit us and have some fun while he was sick.

I now worry about mom, who is also getting older and will be alone. She is a strong self sufficient woman but I cannot help being concerned about her. I know I need to now turn my attention to her and insure she will be fine for the time we have left.

It's very difficult to be rational and strong when you know soon your life will never be as good as it once was. I don't know how different it will be but I'm sure it will never be as good.

Thanks to everyone for listening and I wish everyone the best of luck.

Amilcar

My dad had been thinking about changing Dr's for quite some time and went to visit a new Dr today.

Dad had found a couple of nodules in the abdomen and both him and the Dr think they might be tumors. obviously the next step is to get some imaging studies underway to verify.

that said, has anyone experienced any progression and tumor growth that could be felt/seen? i have been looking for any information or studies but have found nothing yet.

if anyone has experienced anything similar or can share anything it would be great. i am nervous about the possibility of sudden growth so having educated opinions will be very helpful.

thanks!

Amilcar

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.

Take care,

Amilcar

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!

Amilcar

Hi everyone -

Since I've been reading the forum, I remember some experiences where people have had pain (mostly due to mets) in the back and occassionally arms or legs.

My dad has developed a very inconsistent pain in the shoulders and last night mom told me it was pretty bad and he had a terrible night's sleep. Apparently it was managed relatively quickly with over the counter analgesics and a bit of massage.

I really don't know what to think because the pain is not consistent and it can be managed relatively well but it has popped out of nowhere really.

I ask myself if this might be a symptom of mets or (hopefully) just a postural problem largely because he sits around so much and is very weak & thin.

If anybody has any insight into how to interpret this type of pain and can also share some of your experiences with bone issues it would be great.

Thank you so much and best of luck to everyone.

Amilcar

10

(2 replies, posted in General Discussion)

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 5'8) 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!

Amilcar

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

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!

Amilcar

Hello everyone -

My dad is not doing very well with the current regimen of cisplatin and ironotecan. While the combo has helped reduce the mets and he still has limited tumoral symptoms, the chemo is literally wearing him out. He has lost about 20 lbs and has almost every possible side effect (except vomiting).

I would really like him to drop this for a while and if possible go back to gemzar that  also helped for a little while. We would certainly also consider any other alternative (Sorafenib/Avastin/Tarceva).

Has anyone switched back to an old combo? I vaguely remember reading something about this but I'm not sure.

If anyone has experienced this please share your thoughts.

Thank everyone very much and I wish you all a great holiday season!!!

Amilcar

14

(11 replies, posted in General Discussion)

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

15

(15 replies, posted in In Remembrance)

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.

Hi everyone -

My dad has been fighting this disease for about 20 months now. As I've posted before, his condition is moderately good and outside two scary infections (that where both controlled he has actually been OK).

The latest challenge however is his severe weight loss. He is about 5'8 and weighs around 125-130 lbs. He lost almost all of the weight during the last 2 months and while his CT scans where relatively positive and he remains without any major symtoms he thinks it's cachexia.

What is very disconcerting is that most of the weight loss came once he started cisplating/irinotecan and he's had very bad diarrhea. He's still very mobile and outside the fatigue he has managed OK.

I have been reading about cachexia and it sounds very gloomy. Most trustworthy sites also point to consider that not all severe weight loss is cachexia.

Dad continues to eat although not great.

If anyone has any insight or thoughts it would be great to hear.

Thank you and best of luck to all.

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

18

(6 replies, posted in General Discussion)

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!

Amilcar

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.

Amilcar

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!

Amilcar

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.

Amilcar

Hello everyone -

My dad continues to get a beating with the chemo regimen he's under (cisplatin and irinotecan) but at least he's eating OK and seems to be relatively nausea free. Because he lost some much weight and his bloodwork was a bit off in white cell blood count the oncologist recommended he get some steroids.

As expected, dad defies the oncologist and is refusing to take them. We are all pressing him to give them a shot so he can feel better.

The question though is whether they will help him at all? I have read bits and pieces about steroids for cancer patients as a support for chemo but I have not really talked to anyone with experience.

In essence, if there is significant value in using them I will continue to convince him but if the benefits are marginal we might not push too hard.

Any experiences and recommendations are welcome.

Thank you and best of luck to everyone.

Amilcar

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.

24

(4 replies, posted in General Discussion)

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

I don't know if it's the genes that I inherited through my dad but I have been reading probably too much about CC and to no one's surprise I am quite frustrated.

One common thing I find is that the studies and average populations are sparse and most data seems to be statistically vague.

Since my dad will be getting a new scan in about 3 weeks I'm already obsessing about potential progression and growth. So far things have progressed reasonably slowly but he has deteriorated quite a bit and his last chemo hit him very hard. He has continued to have decent bloodwork and his only major symptoms are fatigue and mild stomach aches. As I've posted before, he has lung mets but his abdominal area was clean.

I am truly concerned that the next CT will show major progression and lots of bad stuff. Maybe this is just me being a pessimist and hoping that if things are stable or have little progression I will find some relief.

Anyway, my question is - in general - what kind of progression have you experienced CT from CT? I know it's a very generic question but I would rather hear from people directly than read another nameless/facelss study from a research center or university.

I really appreciate everyone's patience for my questions and warm insights and recommendations.

Thank you and best of luck to everyone.