Any long timers out there?

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 

Wellcome Lori

My wife and I have just started down this road as she was Dx the first Monday of Oct. 09. We will keep you in our prayers.

Gene and Joy

On Nov 12, 2009 6:37 AM Grog1 wrote:

Wellcome Lori

My wife and I have just started down this road as she was Dx the first Monday of Oct. 09. We will keep you in our prayers.

Gene and Joy

17 years with prostate cancer 2 years with advance prostate cancer, how can I help you, cheers Randall

My mother was diagnosed 2 1/2 years ago with pancreatic cancer. She had the whipple procedure, radiation, and she also has had chemo off and on (since she was diagnosed), until her body could no longer take the chemo treatments. She was in a lot of pain and could not sleep at nights. She has been on an alternative treatment called Lifeone for one month and we have seen a remarkable improvement. Her pain is gone and she is able to sleep again. See cancertutor.com  for alternative treatments available and information recommended by the Independent Cancer Research Foundation, Inc. 

God bless you and your family

Lori and all  

If you are interested in researching some alternative protocols here are some excellent links which I hope will be helpful for you and bring you all some hope.

THE LONG TERM SURVIVAL OF PANCREATIC CANCER PATIENT  http://ict.sagepub.com/cgi/content/abstract/5/1/83

http://ldn.proboards.com/index.cgi?board=links&action=di


http://www.townsendletter.com/Dec2007/alphalipo1207.htm

http://www.libnot.com/2009/05/31/pancreatic-cancer-and-autoi

The first human clinical studies using alpha-lipoic acid (ALA) in the United States were conducted by Fredrick C. Bartter, Burton M. Berkson, and associates from the National Institutes of Health in the 1970’s.[9][10][11] They administered intravenous ALA to 79 people with acute and severe liver damage at various medical centers across the United States and 75 recovered full liver function. Drs. Bartter and Berkson were appointed by the FDA as principal investigators for this therapeutic agent as an investigational drug and Dr. Berkson went on to use it successfully for the treatment of chronic liver disease (viral hepatitis, autoimmune hepatitis, etc).[12]    ref:   http://en.wikipedia.org/wiki/Lipoic_acid

Blessings

Sheila