debnorcal

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Viewing 15 posts - 46 through 60 (of 324 total)
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  • in reply to: First time #95398
    debnorcal
    Moderator

    Celia, welcome and congratulations on your successful surgery and continued good health. Thank you for sharing your success story with us.

    P.S. My son is starting his junior year at Orgeon State University and I have been getting to know parts of Oregon. It’s a beautiful state!

    Debbie

    in reply to: Hello, new to this. #95403
    debnorcal
    Moderator

    Hi Jack,

    Welcome to our group! This diagnosis is, at first, devastating, scary, confusing, and more. Far too many of us have been in your shoes. Hopefully, through contact with our members, and reading posts that resonate with you, you will begin to have hope. We have many success stories on this board. My husband was deemed inoperable (peri hilar CC), but did achieve some shrinkage with gem/cis and then ultimately found a fantastic surgeon that successfully respected him. That was 2.5 years ago and he is healthy. Everyone’s story is unique, but there are many treatments and trials that are allowing patients to live happy, productive lives with their CC as a chronic or manageable condition. My best advice would be to stay calm and focus on getting e pert opinions and making the best decision for yourself every step of the way. Please lean on us for information and/or support.

    Debbie

    debnorcal
    Moderator

    Dear Hopeseeker,

    I am sorry your MIL is experiencing low platelets, thus preventing her from staying on schedule with the Chemo (especially since it seems to be having a positive effect). I know low platelets is a common complication, but I don’t know much about how to address that. I’m sure others will chime in with good advice. You can also use the search function at the top of this screen and type in “low platelets” and you should pull up many prior conversations on this topic- perhaps there will be some helpful info applicable to your MIL’s situation.

    Your MIL is young so hopefully with the break/rest, her body will produce higher platelet levels. I would also suggest raising the topic of transfusions with her onc. They may have a good reason for not considering it, but sometimes doctors can be a bit passive and family members need to be more assertive.

    I hope this gets sorted out soon and her platelets improve quickly.

    Debbie

    in reply to: Saying good by – but not really #95333
    debnorcal
    Moderator

    Dear Marion,

    We are heartbroken over the news of your cancer. We know your personal strength and your depth of knowledge about cancers and treatments will be huge assets in your battle. You are not alone – you have a strong family, and I pray the prayers , love and positive
    thoughts of your CC Foundation family, which loves you dearly, will also have a positive impact on your health.

    Hugs,

    Debbie and Mike

    in reply to: My mom has Cholangiocarcinoma #95324
    debnorcal
    Moderator

    Agree. Many good points made in the article.

    in reply to: Eight Years and still fighting #94614
    debnorcal
    Moderator

    Don’t know how I missed this post back in April but, WOW, what an incredible story! Such an inspiration for so many, and is a great example of why we should never give up hope!

    Blessings to you, John.

    Debbie

    in reply to: Hello from Houston, first post, sister with Cholangio #95227
    debnorcal
    Moderator

    Dear Jonas,

    Welcome to our group. I am so sorry that your sister is so ill and that your family is going through this awful nightmare that many of us on this board have experienced.

    You didn’t mention molecular profiling in your message. Was this done and if not, can you have it done? Some of the newer treatments have been proving to be effective against specific profiles. Also, some of the clinical trials are targeting patients with particular profiles. You may have already explored this option, but I wanted to raise it nevertheless.

    Debbie

    in reply to: Hello from Spain #95222
    debnorcal
    Moderator

    Anelko,

    I am sorry your father has been diagnosed, but glad that you have found us. As you know, Cholangiocarcinoma is a very rare cancer. For that reason, it is very important that a patient be evaluated by a medical center that has treated many patients with the disease. Is your father’s Doctor part of such a team? If not, perhaps he can get a second opinion from an expert.
    I hope the test results come back favorable. Please keep us updated.

    With your Mom battling another type of cancer, this must be so difficult for you and your family. My thoughts are with you all.

    Debbie

    in reply to: My beloved MOM #95147
    debnorcal
    Moderator

    Dear Red,

    You have my deepest condolences on the passing of your husband, Tom. I hope that, in time, memories of wonderful times will bring you comfort.

    Debbie

    in reply to: Here to support my brother in law #95211
    debnorcal
    Moderator

    Laura,

    I would also like to welcome you to our group. I think it is wonderful that you are educating yourself about this disease in order to support your bil . There is not a lot of information available on the general Internet about this rare cancer. Our board is an excellent source of information and a supportive community of patients and their loved ones.

    One of the first things you will find on this site is that it is critical that a new patient be treated by one of the medical centers that is highly experienced in treating CC. Is your BIL located near you? If so, there are several excellent medical facilities in New England that are on our recommended list.

    Distal CC is one of the less common forms, but recently we have had a few new patients/caregivers diagnosed with distal. Hopefully, they will respond with their experiences.

    Debbie

    in reply to: How bile duct cancer develops and how it can be prevented #95201
    debnorcal
    Moderator

    Positivity,

    Thank you for posting this – it’s interesting, and encouraging!

    Debbie

    in reply to: Camp LeJeune Water Contamination #95202
    debnorcal
    Moderator

    Kathy,

    Welcome to our group. I’m sorry that you had reason to find us, but I am glad you did. We can be a good source of information and support for you and your husband.

    I am sorry that your husband’s CC has recurred. Hopefully, it has been detected early and can be effectively treated with the 5FU. Is John Hopkins still involved in the follow up tests and 5FU? I hope so, as they have considerable expertise with this disease.

    I am not familiar with the VA procedures, but I know we have members who are. Hopefully, they will chime in soon.

    Again, welcome to our board.

    Debbie

    in reply to: Walking The Road #95180
    debnorcal
    Moderator

    Hi Tilly, and welcome to our group. I am not very familiar with Distal CC (my husband had Hilar CC), but we also live in the Bay Area and initially had medical insurance through a large regional HMO that did not have much experience with Cholangiocarcinoma. We also consulted with UCSF, and ultimately changed health plans so that my husband could undergo a resection with them. That was two years ago, and the surgeon at UCSF saved my husband’s life! The entire team there is beyond outstanding- can’t endorse them enough.

    We also were disheartened when we looked at five year survival rates for this disease. Through this board, we learned that you can’t assume that those statistics will apply to your individual case. Remaining positive and making the best decision based on the information/situation occurring at the moment has huge benefits- it allows the patient to get the best treatment available. Plus, increasingly, new discoveries and treatments are surfacing. Many of these are promising. We have many patients on this board that are living happy, productive lives with this disease as a chronic condition. A number are also living with NED!

    I wish you didn’t need to be on this board, but am glad you found us. Please keep us posted on your husband’s progress, and of course, reach out for help whenever you need.

    Debbie

    in reply to: ” Sally Toad” #93225
    debnorcal
    Moderator

    Michelle,

    I agree with Hercules. You are an inspiration!

    Debbie

    in reply to: Riding the roller coaster #94458
    debnorcal
    Moderator

    Dear Gail,

    I am so sorry for your loss. You and your family have been, and will continue to be, very much in my thoughts. As Darla said, in time the pain will ease and the happy memories will shine through.

    Wishing you comfort and peace.

    Debbie

Viewing 15 posts - 46 through 60 (of 324 total)