tess

Amy, I forgot to mention that regional cancer clusters has also been raised as a possible common thread. There are several people on this board that live within a close proximity to us in upstate NY. In addition to my Dad, my husband’s grandfather passed of cc in 98, and another local family friend’s brother just a couple yrs. back.

There’s also been debate on vets of asian-american wars experiencing cc at higher than normal rates.

You’re not alone with the heart disease, it is just within the last few yrs. that cancer has surpassed heart disease as the top killer of Americans under 85.

Wishing you the best Amy.

Tess

Hi, It’s really hard to go through with a parent, particularly when they can’t find the location of the infection. My Dad went through the same thing. They also brought living will papers into Dad – Mom thought it was protocol for inpatients on the cancer floor. Dad had a biliary cath instead of the stent and they finally determined that they believed this was the source of his infection, and they kept him in the hospital for a week until they could get it under control. I wish your Mom well and hope that they can get that infection & dehydration under control so she can go home!

Tess

Hi Beth, I asked Mom about what she gave Dad when he would get those low grade fevers. She was told to only give him Tylenol (as the liver has enough going on that it struggles to process other meds). She wanted me to suggest that you watch for chills, and a rising temp, these were signs that the low grade fever had progressed into something that shoud be looked at right away.

She said that she too had the problem of the docs not moving fast enough, in Dad’s case it was for the biopsy. She eventually had to tell them that if the doctor was too busy, that they needed to make a referral and have his records sent on, as there wasn’t time to waste, as they had already indicated it was a baseball size mass giving him the discomfort.

Best to you,

Tess

Hi Beth, I agree with Lainy… because of how rare cc is, I think it’s good to get a second opinion anyway, just to have a better idea of your options. We received nearly a dozen second opinions for my Dad, so that we know exactly what our treatment options were. And there is variation in what different docs feel to be the best course of action- having some background on their experience with cc is a good idea.

They inserted the cath in Dad the day of diagnosis, I think the fact that you’ve had to wait for over a week with no confirmed date on their part & no response, is just wrong.

Per my experience with Dad, you definitely want to keep an eye on the low grade fever. While these did come and go for him, they can also indicate infection when they spike.

Best to you,
Tess

Hi Ashley, I’m so sorry for your sadness. I hope and believe that your Dad is with your little one in heaven, holding that baby tight and watching over you. I too found it impossible after losing my Dad, to remember him before cc. I could only recall those last months, and final moments. I have found that the pre-cc memories do come back, and I hope that you too are able to find them soon, but grief is a difficult process to plan for. My heart breaks for you as I read your message, and I wanted to remind you that you’re not alone, and that you’re right- it’s ok to talk about it.

Best to you,
Tess

Hello Beth and welcome! It’s very freightening to sit and wait for results- that’s for sure. It is good that a panel of specialists are working together. It’s always a good idea to get second or third opinions when it comes to cc – and it’s not to early to start lining those appointments up. Per your question, certainly, anything could be possible, and you are right to look for hope, because nothing is written in stone. The catheter (if it’s a bili cath to divert the bile) should bring your husband some relief from the itching, and a lemon use to help settle the metallic taste for my Dad, before meals- so that he could enjoy food better.

I’m sure you’ll receive lots of responses, and help at this site- it’s a wonderful community that knows what you’re going through. Wishing you and your husband the best.

Tess

Hi Kimmie and welcome, great news about your Mom’s successful resection! My 3 yr. old son and I took my Dad to almost every chemo appt. He loved it when Jay held his hand enroute to the center. When I sensed that he wanted more space, I just disappeared to the cafeteria for awhile. Special foods that he had cravings for were always appreciated, but he hated it when we tried to push food on him if he didn’t feel like eating. Dad loved to do what he always loved to do… make small talk about sports, chat on the porch, have card nights, watch his old movies, go out for a soda- to get out of the house, etc. He never wanted to talk cc, and so we never did.

You already know what makes your Mom smile, better than anyone else- you’re clearly a great daughter…. trust your instincts, and give her a little more of what you know she loves!

Wishing you all the best.

Tess