My Mom

My mom was diagnosed with pc cancer with mets to the liver.  She recieved the definite news on her bday sept 26, 2007....we went for the biopsy 2 weeks ago.  Oct 4 I think it was. 

She is aweful pain.  She start chemo today.  gemzr and the oral pill erlotinib.  Saturday we had a family reunion I think it may have been too much for her...she is a dark skinned italian woman...She turned ghost white...that scared me a bit and when she she relaxed she got some color in her face but stayed a bit yellowish....

The dr. told my uncle that maybe a year give or take.  But I cant help thinking it is sooner.  My mom really dont know all the facts noone wants her know. I think she should know. But I left it open for her to ask me questions.  the Doctor told her she could get hit by a car tommorow or live 15yrs.  I dont think he shouldve given her the false hop of 15yrs.  Because she believes the chemo would really work on stopping the cancer. he told her not curable but treatable.  I believe it is just basically to keep her more comfortable.  Has the chemo actually worked where lives for extended for several years?  She was diagnosed with stage iv.....

Can anyone tell me waht should I expect?  I know everyone is different but I guess anything is helpful in knowing what to expect.  I wish I knew a definite time frame.  Her pain is so bad at times she cant move.  My step dad had to pick her up one night and change her clothes and put her into bed.  And she is sleeping more than usual... she tries really hard to tuff out the pain and hide it.  but we can see it...

help please............

On 10/17/2007 carolflux wrote:

My mom was diagnosed with pc cancer with mets to the liver.  She recieved the definite news on her bday sept 26, 2007....we went for the biopsy 2 weeks ago.  Oct 4 I think it was. 

 

She is aweful pain.  She start chemo today.  gemzr and the oral pill erlotinib.  Saturday we had a family reunion I think it may have been too much for her...she is a dark skinned italian woman...She turned ghost white...that scared me a bit and when she she relaxed she got some color in her face but stayed a bit yellowish....

 

The dr. told my uncle that maybe a year give or take.  But I cant help thinking it is sooner.  My mom really dont know all the facts noone wants her know. I think she should know. But I left it open for her to ask me questions.  the Doctor told her she could get hit by a car tommorow or live 15yrs.  I dont think he shouldve given her the false hop of 15yrs.  Because she believes the chemo would really work on stopping the cancer. he told her not curable but treatable.  I believe it is just basically to keep her more comfortable.  Has the chemo actually worked where lives for extended for several years?  She was diagnosed with stage iv.....

Can anyone tell me waht should I expect?  I know everyone is different but I guess anything is helpful in knowing what to expect.  I wish I knew a definite time frame.  Her pain is so bad at times she cant move.  My step dad had to pick her up one night and change her clothes and put her into bed.  And she is sleeping more than usual... she tries really hard to tuff out the pain and hide it.  but we can see it...

help please............

Carol- it sounds like jaundice if her skin is yellowish- I'd inquire ASAP about a blocked duct which can be alleviated with stent placement. A blocked pancreatic duct or bile duct creates havoc and can be corrected.

The pain should also be addressed immediately. There is no reason the oncologist should not be providing pain management. There are various effective options for break through pain- the fenyl patch and the like. Please insist the oncologist give her something that is effective to help reduce the pain significantly. The body uses extra energy when experiencing pain.

Personally, since the above issues are going on I'd obtain a second opinion from a top-notch oncologist in your area. Contact www.pancan.org and ask for a specialist in your area. They only recommend oncologists and surgeons who are considered the best within the US.

Stage 4 does not rule out possibly for surgery- but you must seek experienced, eaggressive surgeon who is qualified with stage 4- vein involvement etc.

Mets to the liver is more of a concern than stage 4 diagnosis. Go to www.aboutlivertumors.com to learn about minimally invasive techniques regarding eliminating and ways to shrink the liver spots. They have a phone number to call and "Ask a Professional" at 1-800-555-6772. I'd check out the site first and have info ready when you call to giev details of scans and other reports.

Ther are targeted chemo drugs for the liver on a trial basis now - Nexavar (Sorafenib) that shows promise in stopping tumor's ability to generate new blood vessels in advanced liver cancer. Leave no stone uncovered. I hope this helps. Take good care. Sonnie

She started the chemo yesterday...she sounds so down today.  no energy.  she got annoyed with the IV said she almost stopped withthis whole chemo thing.

Today she was talking to me about diets. Good things to eat.  Any suggestions would be helpful.  I told them about prosure they are going to get that.  I also told them about probiotics...but they are scared to do that she right now is going to take just regular vitamins...anybody ever tried the probiotics..  I am gong to call her dr.  hopefully he will talk to me we will see....

Thanks for the reply before I found it extremely helpful when I speak with her dr I will mention the stent.  And see what he says.  He seems to be a good dr but he is not a specialist with pancreatic cancer.  He is the head oncologist with NY presbertarian. 

they drive me crazy more of my stepfather than her....I really need to talk to the dr.  I will mention the melatonin also....I think she needs all the help and supplements that is allowed and not to interfere with the chemo. 

my stepdad dont want to listen to anything.  Maybe I will see about getting to her chemo session next week and then I can defintley speak with the dr,.

Yogurt is a wonderfrul natural way to receive the good probiotics. It sounds the doc is hesitate and probably is weighing in on the side to not take antioxidants with chemo (oncologists differ on this but my dad's oncologist recommended taking a multivitamin adn didn't have any problem to take probiotics either)

I know you feel that the head of the department is qualified to determine treatment but the fact that he's not a pc specialist concerns me. I would at least obtain a second opinion from a top-notch oncologist and/or surgeon and insurance covers second opinions.

Contact www.pancan.org to obtain reputable specialists within your area. They are so helpful with many issues. You asked about nutritional and good tasting food and tha't wonderful she has an appetite and asking about food.  PanCan has a wonderful booklet you can order at no cost. I'd check out their website right away if you haven't already done so.

Since the chemo has just started it will be most likely be an adjustment period and they should always do a complete blood workup prior to subsequent chemo to make sure anemia and other things aren't going on.

Good luck with everything. Sonnie

thanks to your advice yesterday.  I did call and get a list of specialist..they wont go for a second opinion.  you can lead a horse to water,,,etc.  the dr came recommended by my stepfathers cousin who is a cardiologist.  It worries me also.  I am going to keep trying.  But I think that is pointless also.

I will suggest for my mom to eat yogurt and I will order a book from pancan.  That is a good website.

they have a book from her health insurance.

You need to have a heart to heart with your doctor and talk to him about her pain management.

Google pancretic cancer and read all you can.  There are many many advances being made in the area of pancreatic cancer.  An excellent website is www.pancreatic.org    This is the Hirshberg Foundation for Research in pancreatic cancer.  Agi Hirshberg is the founder and I'm sure she could steer you in the right direction for some assistance and help.

 There are many helpful sites that can list for you the standard symptoms of pancreatic cancer.  

I think it's almost criminal to not tell a patient that they have cancer.  Your mom has a right to know. 

they did the blood work prior. They are going to put the port in tommorow.

At least I am happy that she still wants to eat.  They are very stubborn people. She is unaware of all facts on this. She does not know of any time frames of the average life span.  that sucks in a way, and in a way is good.  I dont want her waiting to die,  I think that her strenth is great and hope she can streatch life as far a possible.  I am aware that she dont have all the time in the world to try everything.  I wish they listened to me enough so that we can have quality time rather than quantity. I want her to have the energy and drive to do the things that she wants to and to be able to spend with my children .

Thank you carol

she knows she has cancer.  But I think she thinks the chemo works and possibly live another 15 yrs.  I guess that could happen but realisticly that is impossble with stage 4 and mets to the liver. 

The doctor told my uncle 12 months give or take.  She does not know that.  I think she has the right to know so she can foght hard and get all her affairs in order and make peace with things while she is on this earth to do so.  I have done a hell of a lot of reasearch made phone calls and searched throught his board,  Which by the way is the best infomation. Because it is not just facts and stats it is real people real lifes...So thank you every one for that.

She is also unaware that if this chemo dont work that she will not be eligilble for most of the clinical trials just some of them.. She has heart disease which this I found out yesterday when I called pancan.org.

She knows that this will never go away that she will have cancer, she thinks treatable is a long term thing.  that she could live a long time.  that scares me that she dont know that.  I left it open for her to ask questions and I promised her I will answer as honest and to the best knowledge I know and if I dont know something I will help her ask her dr.