tess

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  • in reply to: HELP! LIVER CANCER #30755
    tess
    Member

    Hi, I am sorry for what your family is going through. You indicated that your brother is in NJ, below are a couple docs within close proximity that may be of interest should you decide to pursue 2nd opinions….. come back with more questions as your brother learns more, this site has proven to be a wonderful resource for many of us who have had loved ones diagnosed with cc, or been diagnosed themselves.

    Sloan Kettering
    Ronald DeMatteo,
    FACS Vice Chair, Department of Surgery; Head, Division of General Surgical Oncology;
    Director, General Surgical Oncology Fellowship Program
    Phone; 212-639-5726
    Online Bio: http://www.mskcc.org/prg/prg/bios/542.cfm

    Mailing address:
    Dr. Ronald DeMatteo
    Attn: Betty
    Room C8911275 York Ave.
    New York, NY 10065

    National Institute of Health (NIH)
    National Cancer Institute (NCI)
    Dr. Deborah E. Citrin
    National Cancer Institute
    Radiation Oncology Branch
    10CRC-B2-350010 Center Drive
    Bethesda, MD 20892
    Phone: go through (301-451-1288)
    E-mail: citrind@mail.nih.gov

    Best,
    Tess

    tess
    Member

    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

    in reply to: Help again – My Dad #30776
    tess
    Member

    Sorry for your frustrations Michelle, it’s true- they are par for the course! You may need to work with your Mom, if she’s going to be taking your Dad to appts. to have her record everything in a notebook, and you can place your notes/questions there for her to take back to the doc. when you can’t be there. Your Mom likely has her own rollercoaster going on, as she tries to digest it all.

    For weeks, my parents literally tuned out at the meetings, and got frustrated when the kids asked too many questions -because they couldn’t remember or didn’t know. They wouldn’t allow us to go to the meetings, for fear we’d ask too many questions or ruffle feathers…. so that’s part of where the ‘notebook’ came from.

    Keep us posted, you’re in our thoughts!

    Tess

    in reply to: New to the site Please help #30677
    tess
    Member

    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

    tess
    Member

    Hi Amy, my Dad had colon cancer 5 yrs. before the cc. He did not go for routine colonoscopys or checkups before this, and they believe it was a polyp that had been in there for nearly 10 yrs. He had it successfully removed, followed by chemo and radiation. That turned cancerous. I’m not sure about his meds, I want to say cholesterol and blood pressure.

    Tess

    in reply to: just some general questions #30720
    tess
    Member

    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

    in reply to: Fantastic News on todays CT scan! #30700
    tess
    Member

    That’s great news Deb, you’re a miracle gal & we love to share in your joy!

    Best,
    Tess

    in reply to: just some general questions #30719
    tess
    Member

    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

    in reply to: New to the site Please help #30671
    tess
    Member

    Hello and welcome. Sorry for what you, your Mom and your family are going through. There may be some options that your doc can offer specific to appetite stimulants or anti-nausea, to bring your Mom more comfort. As Marion mentioned, second opinions are always a good idea- to get an idea of what additional options your Mom may be a candidate for. My Dad had cc, and the group on this board was a wonderful support- I hope that we can be the same for you as questions arise.

    -Tess

    in reply to: The Sorrow Comes In Waves #30635
    tess
    Member

    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

    in reply to: My next Scan on August 18th #30627
    tess
    Member

    You are certainly an inspiration Deb, with a spirit that serves to inspire not only those fighting cc- but to all that read your posts! Sending you many good wishes for your appt. next Tues!

    -Tess

    in reply to: new and need advice #30611
    tess
    Member

    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

    in reply to: Port pain? #28399
    tess
    Member

    Hi Katie, sorry about the pain. I hope they can provide you with some relief! My Dad’s patches were yellow at times too- the patches that covered his port and pic lines. The window dressings would sometimes have a yellow film on them after just a day or two. The docs., nurses, and even the window patch manufacturer & distributor had no explaination for this… we sort of came to the conclusion that it was the bile leaking from his pores- but there was never any confirmation on this. The docs even tested it, as we feared that it was indicative of an infection, but not so…. it was just yellow.

    Wishing you all the best Katie!

    -Tess

    in reply to: advice needed from CC patients #30590
    tess
    Member

    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

    in reply to: New member with an old story :) #30530
    tess
    Member

    Hello, While I am no expert on CC, it breaks my heart to read your story. Rick, you and your kids were simply too young to have to endure so much heartache, but as you know cc knows no limits. I lost my Dad in March of this year to the disease. You’re right to applaud those that created & run this organization, they’ve been such a source of help to so many of us- as I think you too will find as you continue to explore the site. You’re in our thoughts….

    -Tess

Viewing 15 posts - 31 through 45 (of 290 total)