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Pats75's Message Board Messages

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Hi Lili,

I am so sorry to hear what you are going through especially at your age.  Jamie was diagnosed when he was 31 as well - sometimes we felt isolated because none of our friends were dealing with something so serious.  I hope you have a good support system.  Jamie always maintained a positive attitude..........of course we would have our pity party days but realized we had to fight this!!!

Jamie had a simple knee surgery six weeks after our honeymoon that he just couldn't heal from.  He began getting sick to his stomach and vomiting all night and losing weight.  He then began having terrible back pain in between his shoulder blades.  About 2 months later they finally did a CT scan and found a very large tumor up against his pancreas.  They originally thought it was pancreatic cancer but after biopsy that was ruled out.  The tumor had no primary origin.........it was so frustrating not knowing where this was coming from and thinking how are they going to treat it if they don't know what it is.  After sometime they came up with a Poorly Differentiated Tumor with neurodendocrine features.  So we went forward with chemo (cisplatin) to shrink the tumor followed by surgery and radiation. 

Jamie and I never wanted to know the prognosis (i made the mistake of reading a note from one of the docs indicating he may only have a year- Jamie proved them wrong).  This cancer is so rare how can they possible give us an accurate prognosis.  We chose to just live and fight the disease day by day.  We did get to enjoy some months in remission.  His tumor was just really aggressive and didn't want to go away. 

Do you have a Comprehensive Cancer Center near you?  The problem with the cancer that Jamie had was that not many docs really knew how to treat it.   My insurance was with another health care system so we weren't treated @ UW in the beginning.  My advice would be to see an oncologist that specializes in treatment of neuroendocrine tumors.  Is your tumor poorly differentiated?  Of course I don't know if you and Jamie have the same exact tumor type.

If there are any questions you have for me or just want someone to talk to...please don't hesitate to write. 

Take care,

Patti

 

 

Sadly my husband lost his battle April 16th, 2008.  Shortly after I made my post things really went downhill.   I haven't been on this website since last year.  I pray and hope all of you are doing ok.  When Jamie was diagnosed they only thought he would live for a year..........he fought this cancer with everything he had and survived (and lived life) 3 1/2 years. 

The good news is that the drug Jamie was going to start on clinical trial is showing signs of stablizing tumor growth!  This is such a rare cancer that we need to raise awareness for.  Shortly after Jamie passed away his family and I decided to have an annual fundraiser to raise money for neuroendocrine cancer research here at the UW Carbone Cancer Center.  We got to hand the check directly to the researchers and oncologist that are trying to find effective treatments for this cancer.  It was a very powerful and motivating moment.  There are so many things that are out of our control when it comes to this but disease, but I thought here is something i can do that might make a difference.  www.rudysroadtrip.com

My thought and prayers are with all of you who are fighting this disease and all the caregivers that are right by there side.

Sincerely,

Patti

 

 

 

 

Hi Lynda,

As I read your message it takes me right back to 3 months ago when my husband was losing his battle with cancer.  He was only 34 and to see him decline and be so helpless just killedme - I couldn't make it better.  He was such a vibrant spirit and to see that be taken away was unbearable - although it is so hard we just want their suffering to end.   God will take him when it is time and he will not suffer anymore.  My heart just goes out to you - cherish every moment, every touch and tell him everything you want to even if he can't respond.  They know your there and  feel blessed to be with him when he needs you the most.  I will pray for the both of you.

 Sincerely,

Patti

 

On 5/19/2008 sweetbabegirl wrote:

This is hard!!!

As I posted before, my husband was diagnosed with EC cancer with 1 node the last week of November. He went thru chemo and radiation. They told us he was *fixable*. February they scheduled surgery. The day before surgery we arrived for the pre-op stuff, and the surgeon gave us the news that it had spread to the liver, and there was nothing else he can do. We met with the onc. March 13th, and again was told that they could start chemo again, but it would only prolong the reality. My husband declined the chemo, because it made him deathly sick.

On May 12, my husband left us and went to a much better place. He is pain free and cancer free!

I find that by reading this message board, I was prepared for his dying, but was not prepared for the grieving. I am so lost. He was my rock!

I feel like he's just away and will be coming back, yet my heart is so heavy it hurts.

I know I am not the only one who has lost a loved one, can anyone please tell me if this will get easier in time?  How long before I can go a day without the crying, and begging he'd come back?

Diana


 

Hi Diana,

I know how you feel and I am so sorry for your loss.  My husband passed away April 16th from a rare tumor, he was 34.   We were married Oct. 16th 2004 and he was diagnosed December that same year.   I feel lost without him and not sure what to do with my time.  I spent the last three years caring for him and can't believe he is actually gone.  I just try to remind myself that he is better now and never has to worry about cancer again.  Sometimes when the tears won't stop I tell him my feelings and ask him to help me get through this.  I believe he is listening and watching over me.  Telling stories about him and our lives together helps..................but sometimes it makes me long for him even more.  I think crying helps so let out any emotion you have.  I don't know if this helps at all but talking to other people on this site makes me feel like i am not alone. 

Patti 

 

My husband was diagnosed with cancer six weeks after our wedding in 2004 and he has been battling it ever since.  He is only 34 years old and it has been so difficult watching him go through this.  Has anyone tried any clinical trials?  We are out of chemo options so we are looking at starting a clinical trial.  We had such a hard time even getting a diagnosis in the beginning, very frustrating.  My husband has had 4 major surgeries, 10 different chemotherapy drugs, and many radiation treatments.  We haven't gone more than a month without treatment.  The past month we have been in and out of the hospital due to a new tumor in his small intestine.  We are both in need of some good news.

 

 

My husband was diagnosed with cancer six weeks after our wedding in 2004 and he has been battling it ever since.  He is only 34 years old and it has been so difficult watching him go through this.  Has anyone tried any clinical trials?  We are out of chemo options so we are looking at starting a clinical trial. 

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