Pancreatic Cancer Member Introductions

Hi. My closest family is dealing with a lot of medical issues. One has a form of leukemia, one has pancreatic cancer and one in chronic pain. Just looking for advice, experience and support. Thanks.

Hi

I have been a care giver to my wife for 28 months. She was Dx’d with adenocarcinoma in March of 2005. She has been through surgery (distal), radiation, and various chemo’s. She no is being treated for a recurrance sine July of last year.

I just want you all to know, especially those just starting down this road, that there is hope, maybe not a cure but not the months that most Onc’s try to tell you. adenocarcinoma is a very aggressive disease, but can be controled.

It did not take long for me to realize that since this disease, and treatments effects everyone differently. Since the effects are so unique as the person dealing with them most Onc’s dont offer a lot of advice on the possible side effects of the cancer or treatments.

Empower your self, research all you can, join groups like this and discuss the issues you or your loved one is facing. The support you will get for both medical issues, and just importantly the emotional issues will be invaluable.

Since I am not a patient I cannot offer much emotional advise to them.
Even though this has been effecting our family for such a long time, i cannot begin to think of what goes thru a patients mind.

FOR THE CAREGIVERS

As I said earlier, empower yourself with knowledge, it may seem overwhelming but that knowledge will be instumental in making decisions.
Remember to ask questions of your Onc (He works for you!!) Write your questions down in a binder or notebook. tkae it to all appointments and write things down. It will amaze you that no matter how well you think you know whwt to ask, if you get an unexpected result of a lab test or scan, your mind won’t keep up. Request copies of all lab tests and scans. this will save precious time in the future if for some reason you need a second opinion, or need to change your doctors.

Do not allow this to take over your life. I initally made that mistake and it took a long time to get over it. You can’t afford to be in a state of confusion all the time.

You will be assuming so many additional responsibilities, it will be difficult to manage them all, you can do it.

Take time for yourself, this is so parmount in your mental health as a caregiver. You have to have a little free time, or this will consume you.

Accept and if need be ask for help from family and friends. You cannot do it all.

Last of all go with you instincts, if you feel your onc is not aggressive enough then tell them. If they dont seem like they really care. never be afraid to investigate a new Onc.

I apologize for the long post but if this info helps, it was worth it

If I can be of offer any advice or suppot please feel free ask.

Ron C

Hi My Mother-in Law is facing Whipple surgery for pancreatic surgery. She recently lost her husband and her moral is low. She doesn’t know any one who survived the surgery. I need stories to give her hope. Might anyone have stories to share? Can you tell us what live might be like after the surgery. the family is scared.
Thanks.

Hello

I was very pleased to find this Forum since my husband was diagnosed with Stage 4 PC July 2007. He had been sick for nearly a year and went through the process of trying to find out why. He had polyps removed from his bowel, a polyp removed from his stomach, a series of ultrasounds, catscans, etc, before getting the diagnosis. We weren’t really surprised when they said it was PC since both of his parents had it as well as a couple of other relatives.

Gary’s had periods of alot of pain and for several weeks had continuous nausea/vomiting … both thankfully both of those are at tolerable levels now. We have nurses coming to the house and he has IVs and IV meds at home. I was an LPN in the states, and the nurses have taught me how to do what needs to be done as far as the IV pumps, etc.

He continues to grow weaker, but does what he feels up to doing, and then spends most of the rest of the day resting. He is a hunter at heart and loves the fall and deer hunting season. His hunting experience will be different this year as he no longer has the strength to trop around in the woods for hours on end each day. We’re fortunate to be surrounded by crown (government) forestland and have had several deer coming into our back meadow.

I can relate to the rollercoaster of emotions (both on his part and mine) … I can relate to the uncertainty of his monster of an illness … the struggle sometimes to stay positive. We do what we can and continue to build memories!

Thanks for letting me join.

Diane (New Brunswick, Canada)

my brother was found july 2004 pc stage 4 he left us n
thanksgiving 2004 he was 47. he lived CA and we are all MI. we couldnt get him to leave his buisness or his 7 year old for treatment. i posted more videos please watch the cantron april 2006. i know andy in the video the cost is little and if it doesnt work they refund the cost of one bottle. my brother got one 1/4 dose of cantron no one gave it to him.

i just started back on cantron but not getting it every 4 hours like i should

debbie

sunflower1948 pancreatic-cancer-cpt2311@lists.careplace.com wrote:

hello, my mom has a tumor on pancreas and liver, cant eat , losing weight, going for mri in 2 days. my brther and i know these are the signs of terminal pancreatic cancer in its late stage. trying to make sure her doctor will call me before giving her the results. her and dad still seem to have hope. it crushes me to know what shes in for. any advice as to what to do or say when the bomb is dropped? blessings and strength to all.

Hi. My mother was diagnosed with PC in Nov 2008. She has chosen not to go through the chemo or radiation. Doc said that she is in stage 4. She does not eat, although she is drinking Ensure. She is weak and tired. I am not sure how long she will be with us. Doc said 2 to 4 months. I am not really sure what to expect or what I can do to help her feel better.

Hi. I am so sorry to hear she doesn’t want to try treatment. I am in stage
4 too and told I am inoperable. To me that doesn’t matter. There are
stories and people out there that have gone on to live and come back from
stage 4. I do what the doctors tell me but I do not believe their
timelines. Only God knows a persons expiration date. Have her see the
video on the Cancer Treatment Centers of America website of the Pancreatic
Cancer survivor. Maybe that will give her hope. The doctors that diagnosed
me told me very similar prognosis. They were ready to start digging a hole
for my buriel and made sure that I knew that treatment was not to cure.
Needless to say, I don’t work with those doctors. I found doctors that are
willing to treat using chemotherapy and have an optimistic point of view.
The treatment is worth trying. From what I’ve heard from others who have had
chemo from other types of cancer makes you much sicker than what I take
(gemzar and xeloda). They all tell me the timelines, we know what the
statistics are…but that doesn’t mean we are statistics. We are people.
Please tell your mom, she can’t give up. We can’t. There is too much to
live for each and everyday we have left on this earth. I will pray for her
and you. Janelle
p.s. ensure also makes a product called EnLive. It is clear and comes in
fruit flavors. Some variety may help and it is a nutritional suppliment to
get the calories in. She needs calories for strength. Does she have pain?
If she does and that is not in control that is a must. Having pain control
can really help an attitude to be more positive. Anyway regardless of what
she decides about treatment, she does not have to suffer. Other than that
on how to help her I don’t know, be there with her and help her make the
most of each day. Help her to have some fun if you can.

----- Original Message -----
From: “LT48” pancreatic-cancer-cpt2311@lists.careplace.com
To: snowhite@mvtvwireless.com
Sent: Thursday, December 04, 2008 9:47 PM
Subject: Re: [pancreatic-cancer] Pancreatic Cancer Member Introductions

I live in the northeast and suffer from seasonal depression. I basically hibernate from november until april. Besides moving, I’d really like to talk to people about how they’ve conquered their depression. I’m a really cynical person and depression has got me beat :confused: