Looking for long time chemo patients

Hello to all -

I am a 40 year old woman with stage 4 pancreatic cancer - mets to the liver ( over 14 lesions - non resectable) diagnosed in October of 2007. I was originally diagnosed with adenocarcinoma of unknown primary origin but after molecular profiling have been told that it is most likely pancreatic cancer with a slight chance of colon cancer.

I have been on carboplatin, taxol, tarceva, and avastin - alimta and avastin - oxiliaplatin, xeloda, and avastin, and now CPT 11, 5FU, and avastin. I have been doing chemo every 3 weeks for 2 years with one break. During that break my liver lesions went crazy and grew much larger and new lesions were seen. I have had numerous trips to the ER, been hospitalized a few times, had 3 blood transfusions along with almost every side effect out there - not to mention I have been bald for 2 years now.

SO... I am just wondering if anyone else out there has been doing chemo for a long period of time with no end in sight and what keeps you going?

I am trying so hard to stay positive mentally but my body is not helping with this. I am so fatigued all the time, nauseated constantly, and have issues with severe pain - all of which I take medicines for yet still have issues. I feel as though I am in a dark tunnel with no light at the end.

I have 2 kids and a husband that I am fighting this fight for but lately I feel as though I am not much use to them - having more bad days than good and no energy to do much of anything. Yet I have to walk around with a smile on my face saying "I'm fine" all the time because no one wants to hear anything else - or should I say no one can tolerate the thought of anything else. What I really want to do is cry.

The only thing that keeps me going is that the thought of leaving my kids and husband alone is more than I can bear. But how do you keep on going through chemo after chemo after chemo knowing that chances are you will be doing it forever - however long that is? My scans are not good enough for my oncologist to consider letting me stop right now and I know if I do stop the cancer could take over and I may not be able to get it back under control. I think I am struggling with the quality of life vs. quantity of life idea right now.

Oh well - sorry about the rant - I really do know that I am blessed to still even be here at all when my prognosis at the start said I would not be - I am just really tired of feeling so bad and feeling as though I am becoming a burden.

Tomorrow is a new day and I will continue to put one foot in front of the other and be thankful for what I do have. I just think it would help to not feel so alone, to know that someone else might understand.

Thanks for giving me a place to vent! Lori 

Hello

I am 37 years old and my husband 46, was diagnosed with stage 4 also to the liver on Aug 25 this year....we have been through alot since then...they put a temp stint in the bile duct to his liver.  It soon slipped out and got infected we were in the hospital for 5 days.  He is now got a permanent one in and it has since worked well.. He has taken 2 cycle of gemzar/tarceva comb.  He never seems to get the 3rd week in though.  We hope that this cycle we will get in the 3rd one.  His tumor markers are up again.. What were yours?  I also have 2 kids and it hurts me everyday to look and them.  You have gave me some encouragement that maybe he can be here 2 years like you.  I pray everyday that I will wake up and this is a bad dream...but soon find out its not...Keep your head up you seem to be a real fighter.  I hope you get your answers about the chemo.  and by the way where are you being treated?  Just trying to find out what we need to do if the gemzar/tarceva dont work...God I hope it does....I love my husband we have been together 18 yrs....

Hi Lori,

If anybody ever did not need to apologize for a rant, it is you!  You have been through enough to put even the strongest person in a constant state of rant.

I am so sorry that you are having to deal with this terrible cancer.  They used to call it the old peoples cancer, but no more.  I recently saw a pc blog written by a 28 yr old male who was diagnosed with Stage iV pc 3 years ago and is still doing fairly well.  Unfortunately, he didn't know all the different chemo protocols he has been on.

Have you visited the Johns Hopkins online support group on their pc website?  It is fairly good, with lots of people who know a lot about pc; I'm pretty sure they can help you out with chemo protocols.  They're pretty good at being sympathetic and listening to rants.

The problem with pc is that it is so aggressive and takes no prisoners.  I feel bad for you that you seem to need your family to be more understanding than they currently are.  Do you have help at home with chores such as cooking, laundry, child care, shopping, etc?  Chemo just takes the starch out of you, leaving you unable to do much of anything.  Sometimes church members will pitch in, friends, neighbors and extended family as well.  Maybe someone to talk with on a regular basis would be of value for you; depression is known to be a large part of pc.  And I think your husband deserves a swift kick in the rear-end!

Come back and let us know how things are going for you.  We are here for you.

Hugs,

Joan L

Hang in there, Lori, and see if some of

On Nov 08, 2009 2:15 AM Lomo1 wrote:

Hello to all -

I am a 40 year old woman with stage 4 pancreatic cancer - mets to the liver ( over 14 lesions - non resectable) diagnosed in October of 2007. I was originally diagnosed with adenocarcinoma of unknown primary origin but after molecular profiling have been told that it is most likely pancreatic cancer with a slight chance of colon cancer.

I have been on carboplatin, taxol, tarceva, and avastin - alimta and avastin - oxiliaplatin, xeloda, and avastin, and now CPT 11, 5FU, and avastin. I have been doing chemo every 3 weeks for 2 years with one break. During that break my liver lesions went crazy and grew much larger and new lesions were seen. I have had numerous trips to the ER, been hospitalized a few times, had 3 blood transfusions along with almost every side effect out there - not to mention I have been bald for 2 years now.

SO... I am just wondering if anyone else out there has been doing chemo for a long period of time with no end in sight and what keeps you going?

I am trying so hard to stay positive mentally but my body is not helping with this. I am so fatigued all the time, nauseated constantly, and have issues with severe pain - all of which I take medicines for yet still have issues. I feel as though I am in a dark tunnel with no light at the end.

I have 2 kids and a husband that I am fighting this fight for but lately I feel as though I am not much use to them - having more bad days than good and no energy to do much of anything. Yet I have to walk around with a smile on my face saying "I'm fine" all the time because no one wants to hear anything else - or should I say no one can tolerate the thought of anything else. What I really want to do is cry.

The only thing that keeps me going is that the thought of leaving my kids and husband alone is more than I can bear. But how do you keep on going through chemo after chemo after chemo knowing that chances are you will be doing it forever - however long that is? My scans are not good enough for my oncologist to consider letting me stop right now and I know if I do stop the cancer could take over and I may not be able to get it back under control. I think I am struggling with the quality of life vs. quantity of life idea right now.

Oh well - sorry about the rant - I really do know that I am blessed to still even be here at all when my prognosis at the start said I would not be - I am just really tired of feeling so bad and feeling as though I am becoming a burden.

Tomorrow is a new day and I will continue to put one foot in front of the other and be thankful for what I do have. I just think it would help to not feel so alone, to know that someone else might understand.

Thanks for giving me a place to vent! Lori 

Please don't appologize for talking (or ranting). This is a horrible cancer.  My husband was diagnosed two years ago Thanksgiving Weekend.  He has had a stent in (temporay) and also a Whipple procedure.  But it just slowed this disease down a little.  Now he is Stage 4 and it has spread to his liver and a little on his lungs.  It is hard for him to be so weak from chemo (the only thing they haven't tried is Tarceva) that he sleeps a lot, but stubbornly is still working, maybe just to the end of the year. So talk, talk, talk and stay fighting.  My husband is only 52 and we have been married 33 years.  Thanks for listining.  God bless you and anyone that has this horrible disease.

Thanks so much for the words of encouragement. It really means alot!

I have to say as hard as it is dealing with this dreadful disease I can only imagine what you caregivers go through. I just don't know how I would deal with it if it was my spouse or child that was sick.

I remember when I was first diagnosed my son was almost 13 and at that stage where you understand why some animals eat their young - the I am not a boy but not yet a man stage that is just so lovely. We sat him down and told him in very basic terms what was going on and were very positive about everything. Well for weeks and weeks after I would wake up every morning and find him sleeping on the floor by my bed using whatever shirt I had worn that day that he had dug out of the dirty clothes as a pillow. And I would hear my husband locked in the bathroom sobbing when he thought I was not around. I felt as though my heart was being ripped out because they were so scared and felt so helpless.

So I know how awful it is for you as well - and I just want to say thank you for all that you do for your loved ones that are dealing with cancer! I know I could not make it without my support system.

God Bless You and Best Wishes! Lori

Lori:

I, too, have PC, going on 16 months, and I get frustrated with the fatigue and other side effects, just like you do!  Mostly the fatigue frustrates me!  However, I consider myself a warrior doing battle against a powerful enemy, and I am not going to come out of the fighting without some battle scars.  But I also look to Christ as my general, Who is aware of our suffering, and He will take the burden from us...just have to remember to give it over to Him!  We have a little grandchild due December 6th, and I feel so fortunate that I am going to get to be here to welcome him, hold him, rock him.  After I have one of my meltdown rants about the "problems" that go along with all this treatment, then I have a "blessing" session, and thank God for all the blessings He has sent to me. Right now, I am asking God to grant you some peace and comfort, and that you will feel His presence. 

Marti

My 45 year old wife was diagnosed with Stage IV stomach cancer in March of 07.  She has been on some form of chemo continously since that time.  In August of 07 she was in remission but they continue to recommend treatment.  She was on heavy duty chemo for the first year and half but for the past year she is on only Xeloda (pill form of 5fu).  She remains in remission today and tolerates the chemo ok.  She has recently been more fatigued and the question that continues to stand before us is when is enough enough.  The doctors continue to represent that as long as she is tolerating it, she should stay on it.  Who knows?  My best to you and your supporters for continued success with treatment.

Steve (aka momwithkids)

Hi Lori,

God bless you through this tough time for you and your Family.  My brother got diagnosed with late stage PC.  He has also been on Gemzar and some clinical trial for 1.3 yrs.  He was given 2 to 4 months to live so we are greatful for everyday we have with him. 

My brother also feels like he has been on Chemo forever.  1.3 yrs non stop.  Although his cancer is in control right now. CA 19 is below 3, blood work good, and shows shrinkage of tumor to about he size of a dime, and in some CT scans his liver lesions cant be seen.  The doctors still dont give him much hope.  We dont understand if he is improving why other alternatives are not being discussed.  His oncologist just keeps saying that his cancer is terminal. 

My brother also has a beautiful wife and 4 kids.  He 49years old and great and loving person.  Just thought I would share our story.  This has been tough on our whole family because we love him so dearly.