Father Diagnosed...

DavidG2 · New User Joined: 16 Jun 2006 Posts: 3 Location: Texas

Hope I did this right. First time post here but right now anything might help. My father who's 58, was diagnosed last February with Diabetes, which turned out now probably to be a wrong diagnosis. Anyway, last week he was diagnosed with Pancreatic cancer which has metaticized into his lymph and bile ducts. The Doctor seemed hopeful though that his liver and other organs are free of it so far. But, he said it isn't operable because he would leave too much behind. Next week he is to start on Chemo and maybe radiation to try and shrink the cancer so he can do the whipple I believe he said. Anyway, I was wondering if anyone knows if we have any hope here. These days seem to have turned dark and the lack of knowledge and answers is even harder. Though from what I have read so far it seems to not be good news for long term. Im pretty close to my dad, we are partners in a fledgling business that we hoped to see grow in the future. But without him I don't see myself doing it any longer which makes me feel guilty. Being only 26 years old and facing losing him this young, its hitting me -very- -very- hard. I thank anyone for any response they could give and will think positive for all.

rechargeable · Posted: Sun Jun 18, 2006 1:31 am Post subject: Re: Father Diagnosed...

David,

I am so sorry to hear of your father's diagnosis. You and I are the same age and in a similar situation, though my father's diagnosis occurred last year and he is 69. I can't lie about our situation. Things are not good here; we are facing an aggressive recurrence, and my father's time is now definitely very limited, although we don't know exactly by how much. But I urge you not to let our misfortune dampen your resolve in facing this. I know exactly where you are coming from. I know that every piece of bad news you read on the internet is like another punch in the stomach. But however badly other people's stories go, your story with this is yet to be written.

Your father's diagnosis of diabetes was very likely correct, although incomplete. The pancreas is the organ that produces insulin, and depending upon how cancer has afflicted it, that insulin production can be interfered with and diabetes can result. However, diabetes itself is a completely manageable ailment. Of all the things that you are helpless to do anything about, diabetes does not have to be one of them.

For you right now, there is hope. Hope that the chemo is effective and that the surgery can take place. Hold fast throughout your father's treatment plan. Welcome any good news when and if it comes, but prepare yourselves as best you can for bad news. This whole thing is a storm that's still on its way, and whatever it brings, you must now hold tight to eachother and weather it.

In retrospect, my father did quite well during his initial chemotherapy (which was with a drug called Gemcitabine, administered intravenously on a weekly or bi-weekly basis, I can't quite remember) and during his radiation (which was accompanied by another chemotherapy drug called Xeloda, which was an oral medication.) He was often very tired and didn't feel great generally but he was still able to do lots of stuff. Now that we're in worse shape, I see that chemo as having been a therapeutic thing rather than a poison, and I wish he could have that level of therapy back so that he could spend his remaining time enjoying things, even if that enjoyment was at a level diminished from when he was in perfect health.

Once the treatments become routine, and if the side effects are essentially manageable, I think there can be a tendency to postpone being happy until one's treatments are completed. Forget that; from now on, the time for happiness is any time the opportunity presents itself. If there's so much as a breath of fresh morning air for which your father has a simple enjoyment, he should do the best he can to savor it.

For the sake of your strength and for the sake of the quality of the time you have, be it limited or not, do the best you can to do things that promote peace within yourselves. If the business is fundamentally stressful and unrewarding, then give it up. If it's nourishing, keep at it. The more at peace your dad is, the more successful will be his fight.

As for you, being that you're a close family member who will likely be providing a lot of support for your father throughout this fight, you must ensure that you get the sleep you need, that you eat as healthy as you can, exercise when possible and just take care of yourself generally.

I'm sorry if any of this sounds tactless of me at this stage, and I'm sure a lot of it sounds like unachievable Hallmark card nonsense. You probably want some statistics. In our case I've found statistics - which are never terribly accurate anyway - serve more as a distraction than anything else. I recommend not thinking about them. They're only a strength killer.

I'm sure we'll write more. Take care and hang in there.

reenie · Posted: Mon Jun 19, 2006 6:37 am Post subject: Re: Father Diagnosed...

Hi David,
I was so sorry to read the news about your Dad- yesterday of all days... How cool is it that you two are close enough to have gone into business together.
My husband, Sam, was diagnosed in March and turned 59 in May- that seems awfully young these days, doesn't it? That may be all he and your dad have in common or there could be a lot in common. While each case is different they all seem to be oddly similar. I was confused about the possibility of surgery for your dad so some of what I say may not be of any help to you guys. Sam is not a surgical candidate. His cancer is stage IV- metz to liver and mesentery.
There are a couple of things we have learned which I will pass on - not because I know very much about all this, but because this is the sort of thing I wish I'd known about sooner.
There is a drug called Magacees which has increased Sam's appetite. He has become an eating machine! If lack of appetite becomes a problem for your dad You may want to ask about that. It's from his oncologist, not an alternative remedy.
Sam has tolerated the gemcitabine and Tarceva fairly well. (We are told that is the current best combo) No nausea, still has his hair, but is wicked tired two days after treatment.
There is a procedure called a celiac plexus block in which they go through the aorta ( Yikes) and deaden the pain. Sam tried it and it wasn't successful but we both felt it was worth the try.
Pain medications cause constipation. No way around it that we have found. Sam is on a fentanyl patch and that does a very good job.
I hope some of this helps. I'll send on anything we find that may be helpful. I am so sorry you have to face this challenge at such a young age. Good thoughts, Reenie

Vismund · Regular Joined: 19 Jun 2006 Posts: 12

[quote="rechargeable"]David,

I am so sorry to hear of your father's diagnosis. You and I are the same age and in a similar situation, though my father's diagnosis occurred last year and he is 69. I can't lie about our situation. Things are not good here; we are facing an aggressive recurrence, and my father's time is now definitely very limited, although we don't know exactly by how much. But I urge you not to let our misfortune dampen your resolve in facing this. I know exactly where you are coming from. I know that every piece of bad news you read on the internet is like another punch in the stomach. But however badly other people's stories go, your story with this is yet to be written.

Your father's diagnosis of diabetes was very likely correct, although incomplete. The pancreas is the organ that produces insulin, and depending upon how cancer has afflicted it, that insulin production can be interfered with and diabetes can result. However, diabetes itself is a completely manageable ailment. Of all the things that you are helpless to do anything about, diabetes does not have to be one of them.

For you right now, there is hope. Hope that the chemo is effective and that the surgery can take place. Hold fast throughout your father's treatment plan. Welcome any good news when and if it comes, but prepare yourselves as best you can for bad news. This whole thing is a storm that's still on its way, and whatever it brings, you must now hold tight to eachother and weather it.

In retrospect, my father did quite well during his initial chemotherapy (which was with a drug called Gemcitabine, administered intravenously on a weekly or bi-weekly basis, I can't quite remember) and during his radiation (which was accompanied by another chemotherapy drug called Xeloda, which was an oral medication.) He was often very tired and didn't feel great generally but he was still able to do lots of stuff. Now that we're in worse shape, I see that chemo as having been a therapeutic thing rather than a poison, and I wish he could have that level of therapy back so that he could spend his remaining time enjoying things, even if that enjoyment was at a level diminished from when he was in perfect health.

Once the treatments become routine, and if the side effects are essentially manageable, I think there can be a tendency to postpone being happy until one's treatments are completed. Forget that; from now on, the time for happiness is any time the opportunity presents itself. If there's so much as a breath of fresh morning air for which your father has a simple enjoyment, he should do the best he can to savor it.

For the sake of your strength and for the sake of the quality of the time you have, be it limited or not, do the best you can to do things that promote peace within yourselves. If the business is fundamentally stressful and unrewarding, then give it up. If it's nourishing, keep at it. The more at peace your dad is, the more successful will be his fight.

As for you, being that you're a close family member who will likely be providing a lot of support for your father throughout this fight, you must ensure that you get the sleep you need, that you eat as healthy as you can, exercise when possible and just take care of yourself generally.

I'm sorry if any of this sounds tactless of me at this stage, and I'm sure a lot of it sounds like unachievable Hallmark card nonsense. You probably want some statistics. In our case I've found statistics - which are never terribly accurate anyway - serve more as a distraction than anything else. I recommend not thinking about them. They're only a strength killer.

I'm sure we'll write more. Take care and hang in there.[/quote]

I couldn't agree more!

Extremely well written Rechargeable. I'm in the exact same situation, beeing 31 years old and having a mother that recently was diagnosed with cancer in the pancreas. She is 49 years old, which is far from an acceptable age when it comes to this specific type of cancer. On the bright side, they haven't found any metz's in the surroundings of the pancreas, but she still needs to undertake a treatment of both chemos (xeloda & eloxatin) and radiation to schrink the tumour, to make it removeble with a whipple. The entire process is like waking up to a nightmare every morning instead of leaving one.
Just seeing a beloved one suffering from that amount of pain, and at the samt time being totally helpless is frustrating beyond everything I have experienced so far.
The first treatment with eloxatin made her very sick, she vomitted for over 48hrs, with only ten minutes between the attacks. The illness didn't alove her a single minute of sleep during thos to days.She was totally exhausted when the symptoms deminished. Fortunately, the symptoms from the xeloda has been managable so far. The outcome of the treatments is pretty far from promising at this moment, and the statistics speaks for itself. But we are still trying to keep a good spirit and be there for her, as much as we can, and appreciate "good" days when they occour.
Another issue that is quite hard to cope with is the fact that your ordinary life is not waiting for you. You still have to perform at work, be there for the kids and so on, at the same time as your thoughts are with the one that is constantly in a great deal of pain, and at the same time has to fight against all kinds of thoughts regarding life, death, family........
It´s also hard to find comfort from "success stories" when it comes to this type of cancer, and the reason is quite obvious: There aren't many!
Excuse mee for my bad english, beeing swedish and writing in this forum is just a sign of how hard there is to find other people that are in the same situation, at the same time. Most of the stories that I have come across are from people that already been through the process with a sad outcome.

rechargeable · Posted: Mon Jun 19, 2006 5:16 pm Post subject: Re: Father Diagnosed...

Vismund,

Xeloda and Eloxatin is exactly the regimen that my father is on now that his cancer has returned. (Unfortunately our treatment plan is no longer for curative purposes, as the possibility of a cure has now been ruled out. We're now hoping that these drugs can at least shrink the tumors, make him feel better, and buy him time.) His first Eloxatin infusion was exactly one week ago, and he is on a one-week-on/one-week-off twice-daily Xeloda prescription. So far he has been spared the terrible vomiting that has hit your poor mother.

As I said, my father took Xeloda before. He did okay on it, except that after a while he did develop some thrush in his mouth. My understanding of this is that Xeloda attacks cells that are dividing rapidly, and since both cancer cells as well as the normal cells in our gastrointestinal tract are types that divide rapidly, both are affected by Xeloda. There are also some skin care issues that can occur which require using moisturizing lotion on the hands and possibly the feet and other areas.

I am fortunate that my ordinary life was not yet so involved that I couldn't move back home to help my dad. Since my mother is also very ill and my brother is married far away with a child and a career, there is no one else available now to help him anyway. I don't know what I'd do if my dad had to be alone through all this. I can't even envision him doing so much as driving to a single appointment.

Time to go see if dad can eat anything and then go see mom in the hospital. Hopefully David will post back soon.

DavidG2 · New User Joined: 16 Jun 2006 Posts: 3 Location: Texas

Thank you all for the replies. The past few days have been hectic so I havent been able to log back in till now. I appreciate all the input too. We're just taking it one day at a time for now. This was the day the port got put in for the coming Chemo and he's been far more sick now then the past days. The meds for nausea dont seem to be helping anymore and the Chemo hasnt even started which has us all a little worried. The doctors seem not to be saying much, which is good and bad. Im not sure how much more bad news I could deal with right now. My heart goes out to all of you in these situations, its damned hard and Ill continue to think postive for all of us.

DavidG2 · New User Joined: 16 Jun 2006 Posts: 3 Location: Texas

I finally made it back here after all this time, just haven't had much time or the inclination to talk I guess. Hope all are doing as well as can be expected. Since I last posted dad has had major nutrition issues. We had to cancel chemo and radiation after only two weeks and back in the hospital we went. They put him on IV nutrition and also put a feeding tube in him so he could get strength back to begin treatments again. Unfortunately, complications seem to be plenty...The stint they had to put in his bile ducts became heavily infected and almost took him from us already and after that , he really hasn't gained back the strength he once had. Afew days ago, after being in the hospital for around 4 weeks he seemed to stabilize, talking strongly and having good color but tired alot, which I suppose is understandable. Anyway, the Doctor sent us home just this morning and in the wee hours of the morning when he had to use the bathroom he had some sort of seizure. We called 911 and they checked him out but all vitals are well but now its the worry of perhaps this cancer has metastasized to his brain or something internal is out of balance again. It just seems like your good one day then right back down the next. After spending so much time in hospitals, it amazes me still the total bewilderment the Medical community has toward this Cancer and the people who have it. My mother is trying to do everything she can for him, researching clinical trials, alternative treatments..etc.. Though she and I both have the overwhelming feeling of complete uselessness. Perhaps her even moreso then me because she is a Nurse and wants to help so badly. Ive been trying to hold out my hope but as the year moves on, it seems to get harder and harder to grasp any at all, especially now with that latest complication. I don't mean to burden anyone else with all this but, I feel as I need a sounding off place sometimes when the hopelessness feeling gets far to strong... I pray for all who have this or have someone going through it. Its -the- hardest thing I have ever gone through in my short life so far...

freeio · Posted: Thu Aug 24, 2006 8:55 am Post subject: Still alive

I want to encourage you all I can. As a stage IV pancreatic cancer patient, I can assure you that with proper care there can still be years of good life ahead. I was diagnosed nearly two years ago, and am still here and well enough to work 32 hours per week, and do some outside activities.

They treated me first with Xeloda and radiation, and now are treating me with gemcitabine. The medical treatment is straightforward. The hard part is the mental part, both on the part of the patient and also on the part of the family and friends. Value each new day you get. Worry does not help at all.

I would advise you to make sure to make a pass by the lawyer's office to make sure that all of the legal paperwork is in order. He will want an up-to-date will, and probably both a medical power of attorney/living will, and also a regular power of attorney. You need to have the proper paperwork that the hospitals can accept to let them know who has the power to make the medical decisions while dad is too out of it to speak for himself. Make sure you know where the important papers are, since you may have to deal with things on your dad's behalf. This is hard, but it will make things possible, and reduce the worry factor.

Cheers!

Marty
_________________
-------------------------------------------------
whipple procedure, Oct. 21, 2004
28 days of radiation
56 days of Chemo using Xeloda
diagnosed as progressive recurrent pancreatic adenocarcinoma (Stage IV) Jun. 20, 2006
was treated with gemcitabine, oxaliplatin, and tarceva, which all failed.
Cancer blog: http://diehlmartin.com/cancer.html

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