When we lose a moderator to the disease of Cholangiocarcinoma, we lose

Discussion Board Forums In Remembrance When we lose a moderator to the disease of Cholangiocarcinoma, we lose

Viewing 15 posts - 1 through 15 (of 19 total)
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  • #46436
    darla
    Participant

    Somehow I missed this post. Yes, I totally agree with everything that has been said here. They will all be with us forever and their voices on this board will be sadly missed. RIP

    #46435
    debrah
    Participant

    We are so sad, we were so blessed, they are so missed… forever in our hearts. <3

    #46434
    kathyb
    Member

    Tom,

    I was diagnosed at stage 4, inoperable with 3 to possibly 14 months. That was over 17 months ago. I’ve had radiation with 5FU chemo in 09 and Gem/Cits in 2010. My tumor has never changed size and no new tumors have presented. I am STABLE!

    The first year was the roughest with a couple of hospitalizations for blood infections, but most of the time I have felt great (except during the two months of radiation and 5FU chemo which were given shorty after diagnosis).

    God bless you both. There is always hope.

    Kathy

    #46433
    marylloyd
    Participant

    Tom,
    Believe me I understand about getting down. My husband had an attempted resection and when the surgeon came out and said he couldn’t do it we were devastated. We thought that was the end. Fortunately at OSU, they use a team approach and all of the specialists were called in to review his case, Surgical Oncologists, Radiation Oncologists and Medical Oncologists and they put together a very aggressive treatment plan for him that worked. Has Ben seen a Radiation Oncologist? Not everyone is sent to one and that bothers me because all of the specialists approach treatment differently. It was really interesting at the time to deal with the three different doctors and teams. I found the surgeons and radiologists to be the most optimistic. They were all great but the Medical Onc. basically pushed chemo more and we weren’t and still aren’t too keen on that. Take care and best wishes for Ben. MAry

    #46432
    tlsinftl
    Member

    Mary, thanks so much for taking the time to post…obviously there some shining lights out there so I think every time I am feeling down I am heading to the good news section. It always helps!

    Tom

    #46431
    marylloyd
    Participant

    Tom,
    I’m sorry that I can’t go back through all of the good news section to point out everyone- I have horrible internet service and it just takes too long to go back through hundreds of posts. I don’t know about being stage 4. My husband was never actually told what they considered him. He was told he would only have 6 – 18 months with or without treatment. Anyway, look up Andy from Britain, someone from Vancouver wrote about their father who had received no treatment and was four years out. Lisa is three 1/2 years and did not have a resection. Someone actually wrote the other day about doing well, staying stable, for at least three years now and they did not have surgery. There are others that have posted through the years. I don’t know about moontje. They were doing alternative treatments but her Tom may have had surgery eventually. I spoke to a woman I met at a flea market that told me her husband had been living with cc for over 4 years and had remained stable and doing well. He could not have treatment because of cirrhosis. Andy and my Tom are the only ones that I know of that have had their tumors actually go away, but the others have remained stable and are doing well without going through the ordeal of surgery. Someone just said the other day that their surgeon told them there was a fifty per cent chance of the tumor coming back even with clean margins. It really seems to depend on whether the cancer is aggressive or not. If it is the aggressive type then I’m not sure there is anything anyone can do. My point is that surgery is great if you can have it but I’m not sure that it is the only cure. You shouldn’t lose all hope if it isn’t possible! Take care, Mary

    #46430
    tlsinftl
    Member

    Mary,

    I have a follow up question to your comment about people doing well here that didn’t have resections. I must admit they are hard to find, and I a so glad your husband has done so well. If someone could point me to some of the good news patients who have done well when diagnosed at stage IV, I would love to read them as I can’t seem to find any and would sure like to read some good news in those cases.

    Thanks!

    Tom

    #46429
    marions
    Moderator

    A big thanks to all of you too.
    Mary…I know that you have not signed up for this, but you have become a diet and supplement guru. Tom has done well albeit not without a few problems along the way and you are a big part of this success.
    Julia…..your involvement with cancer in the UK is admirable. Your enthusiasm and devotion will allow you to reach great heights. More power to you.
    Joyce…..I am thrilled to see you back on the board. We have a very special connection, as our days of sadness occurred at about the same time. I can’t believe that your little girl is eight years old already. When I think of growing then the last four years have flown by whereas, in other ways it moved painfully and slowly.
    Candy…..I have been thinking of you. Your brother had mentioned that you are very busy. I am happy that your brother had a good visit with his physician. I realize that he has to make a tough decision regarding his upcoming treatment and I so much hope for him to have a fantastic response.
    My very best wishes to all,
    Marion

    #46428
    candyz
    Participant

    So many people give so much on this site and each time one passes it is a huge loss to their family and to us. I was so sad when I heard that Kris had passed because she was so brave and she, Jeff and you, Marion, were so much help to me and my brother when he was diagnosed. This site was my constant companion for a while. I learned so much when it was so important. Marion, I know you have been talking with my brother (Mr J) and I’m so thankful for all the guidance and support you give. There is a special place for wonderful people like you.

    #46427
    jmoneypenny
    Member

    Ditto to everything you said, Marion – and thank YOU for always being there for all of us. You are priceless, too.

    Joyce M

    #46426
    lalupes
    Participant
    marions wrote:
    I much agree with yours and Tom’s comment in that this board can be difficult to visit. It is so very understandable. But, we are here for each other. And, that is priceless.

    Totally, totally priceless.

    I do so agree with your topic heading, Marion – we lose indeed. I thank God for the moderators who remain to greet & guide us & for those who have gone but who live on in their posts & in the love & fighting-spirit they have inspired in others.

    We WILL get there.

    #46425
    marylloyd
    Participant

    Marion,
    We all need to thank you, too for all of the time and support you provide and of course, the knowledge! Yes, we have been through a lot on this board. While we were going through our acute phase of treatment I was reading about your husband and Mark Clements and Valerie McCrea and so many others gone but not forgotten. It was sad to deal with those losses then and scary because I really felt Tom’s case was hopeless. Of course after all this time he is still here and doing well. As I said before, there is no rhyme or reason to any of this.
    Ben,
    My husband did not have a surgical resection and is still here and doing well. In fact there are others on this board that did not have surgery and are doing very well. Many have had surgery, like Kris, only to have the cancer recur, sometimes very quickly! I personally don’t believe surgery is necesarily a cure. At least not the only cure! I am a strong believer in diet and supplements as far as this cancer is concerned and radiation!! A lot of Docs don’t believe in radiation because of the damage it will do but the liver will regenerate and I believe any damage will eventually repair itself. Scar tissue is an issue but it is with surgery as well. I don’t really like the chemo approach but it has helped some. Take care. Mary

    #46424
    marions
    Moderator

    Mary……I so much wish for us not to have to encounter these painful times. We go way back, don’t we? These wonderful people helped us along in this difficult world of Cholangiocarcinoma and they continue to do so. Their postings are here to stay and are accessible to anyone, anytime. That in itself is great comfort to me. This board has enriched our lives and allowed us to share camaraderie unlike any other. And, although, we so much wish to have met under different circumstances the reality is we would not have had the opportunity to do so. Yes, we could have done without this type of reality, but we don’t have a choice in that. Like you, I so much wish for this cancer to become a curable disease and in some instances we have seen it to behave like that. But, only too often this board has given to us the opportunity to share the victorious times and to hold each other close in the time of extreme sadness.
    I much agree with yours and Tom’s comment in that this board can be difficult to visit. It is so very understandable. But, we are here for each other. And, that is priceless.
    Huge hugs are coming your way,
    Marion

    #46423
    tlsinftl
    Member

    I will say this is why I go through periods that it becomes difficult keeping up with the board because ultimately, when surgery isn’t an option (and many times when it is), the outcome is devastating.

    I too am so humbled by so many courageous moderators on the board who I have grown to know so well, even though many are no longer with us.

    The legacy they leave behind is profound, and while some days it’s difficult to be here – the courage with which they fought this disease keeps me going. When I needed help and information when first faced with Ben’s diagnosis – the detailed updates by so many helped me arm myself with knowledge.

    To all of our fearless, selfless moderators I am forever grateful. I don’t know what I would have done without you.

    Tom

    #46422
    gavin
    Moderator

    Well said Marion. They may be gone, but they will never be forgotten and will always be remembered by us all with the fondest memories possible. We all owe them so much and our world is a sadder place for losing them and everyone else to CC.

    To Peter, Jeff and Kris, may you all Rest in Peace.

    Gavin

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