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Viewing 15 posts - 16 through 30 (of 178 total)
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  • in reply to: Help for patients in the UK #20037
    stacie
    Member

    Pauline,

    I will check in with Prof. Lodge this week and give you an update.

    Stacie

    in reply to: Donations to charity to help cc sufferers #22237
    stacie
    Member

    Yes!

    in reply to: Donations to charity to help cc sufferers #22235
    stacie
    Member

    Pauline,

    For information to donate to the Cholangiocarcinoma Foundation you can look under the tag line at the top of the page “Donate” if you need any further information you can contact me directly.

    Stacie@cholangiocarcinoma.org

    in reply to: Gerson Therapy #22210
    stacie
    Member

    Carrieann,

    I felt the same way you did when Mark was diagnosed. As I did all the research, it was hard to deny the impact of eating healthy, exercise, and many of the energy therapies i.e. visualization, acupuncture, etc.

    You should be able to easily find a naturopathic Dr. in your area, just google everything. Cancer Centers of America are one that work down both paths at the same time. Modern and alternative. You may want to take a look there.

    I did look very heavily into the Gerson diet. I spoke with them quite a bit and filled out all the applications for Mark. He was accepted into the in-house program in CA but he was just too sick to go at this point.

    It was a hard decision for him to make, to leave his wife and 4 kids to try something that he wasn’t sure about or stay at home, continue what he knew, but remain with his family.

    These are very difficult decisions. We ended up working with a naturopath that was about an hour from us. She was suggested to us by a private insurance company. She had patients in her clinic from all over the world, but it was amazingly expensive. However, she had Mark on a very strict diet, which is on the discussion boards if you search, if you can’t find it let me know and I would be happy to pass it on. I researched every single item on that diet, because it didn’t make sense to me.

    It all became very clear soon – as I started digging through the research. Our family changed our diet completely. But I think too often these kinds of things are last resorts.

    stacie
    Member

    I absolutely love to see the energy running through the discussion boards. No offense could ever be taken by the board. We see patients and caregivers who are frustrated and want to see positive things happen with this cancer. We know, because we are experiencing the same thing.

    We are always keeping up with the posts and what is happening on the website. I personally do so less now as I am working with the day to day details of running the foundation and this takes up a significant amount of time.

    Jeff, Marion and Peter volunteering to be moderators on this site is a major reason that I was able to focus more on those things that will allow the foundation to push forward.

    Marion Schwartz has been working with Sara Hinkley as a patient advocate for several months and has just taken over as Director of Patient Advocacy, this allows Sara to take on other responsibilities that we were not able to focus on. Marion is seeing amazing things happen as she has been invited as an advocate to participate in several cutting edge cholangiocarcinoma conferences. You will see her report in the upcoming edition of the newsletter which we hope will be out in the next couple of weeks.

    We are preparing a new section of the website right now under “Get Involved” it is the “Volunteer Section” There we will list several opportunities to volunteer. If you don’t see something that interests you in that section, then send me an e-mail, tell me what you’d like to do, what your interests are or if you’d like to branch out and learn something new.

    Every one involved with this foundation is a volunteer and we appreciate the gift that each has given whether it be time, talent or funds.

    Lainy, I think sending the letters would be fine. I’d like to check with the other board members, but I don’t believe that there would be any conflict. I agree with IreneA that it will be more impactful if you also include some information about what orphan cancers are and how they are completely overlooked and under served by the NIH and NCI which is where the big money is for cancer research.

    Jeff, thanks as always for ignoring your own burdens and lovingly serving those around you.

    Stacie

    in reply to: Not sure what’s going on… losing hope #21172
    stacie
    Member

    There are several holistic options in your area. It sounds like you are in SLC. One is Dr. Marietta Bergdorf, she is in Bountiful. She is the naturopath that we worked with.

    Modern Health Clinic – (801) 397-2273

    in reply to: EFT Study Conference Call Information #21028
    stacie
    Member

    Any one interested in being able to view the web portion of the presentation can send me an e-mail at stacie@cholangiocarcinoma.org – I will send the link to you in your in-box.

    I will also put the link here on the website as we get closer to the conference.

    Be sure to let us know if you have a preference for doing the conference call in the morning 9:00 MDT on Wednesday or in the early evening at 5:00 pm MDT

    Thanks so much!

    in reply to: EFT Study Conference Call Information #21026
    stacie
    Member

    Hi all,

    We had a good introduction to EFT last night, as Jeff said. You have another opportunity to tune in and find out about this technique this coming Wednesday. Listening in on the conference call does not mean that you have to participate, it is simply a way to introduce you to this technique and what the study will entail. Then you can decide if you would like to participate.

    Just to clear up one thing. While there are only 25 web slots available to VIEW the presentation on your computer screen and see the graphics as the practitioner is going through the information. There are plenty of conference call lines for everyone. Everyone will be able to listen in to the conference call. I can very easily send you the graphics so that you can follow along and the explanations are clear enough that you will be able to follow along even if you can’t see the graphics at all.

    This really is a unique opportunity, we hope you will take advantage.

    We would like to know if there is more interest in having the conference call in the morning or again in the evening.

    Wednesday the 30th at 9:00 am MDT or Wed. 30th at 5:00 pm MDT, we would like to accommodate as many as possible. Let us know which you would prefer and we will schedule the call accordingly.

    Stacie

    in reply to: EFT Study Conference Call Information #21023
    stacie
    Member

    Sorry, Deborah

    I’ll give you a brief explanation as well. EFT (Emotional Freedom Technique) is a painless acupressure technique. It uses the same meridian points as an acupuncturist would use but instead of using needles you use your fingers to gently tap on those points and get the same results. It is very simple to use and can be done in the privacy of your home.

    A skilled practitioner has volunteered to help patients who have pain issues or any other emotional issues (despair, grief, anger, etc.) that can often times feel overwhelming in circumstances such as we find ourselves.

    This technique has been very successful in helping patients relieve side effects and also in gently helping to release the negative emotions associated with any kind of traumatic incident, cancer being a big one.

    If you are interested in more information you can look at the website http://www.emofree.com or you can get on the conference call next Wednesday. We are looking at another conference call at 5:00 pm MDT or at 9:00 am MDT, it will depend on the preferences of those on the website.

    in reply to: EFT Study Conference Call Information #21019
    stacie
    Member

    Thanks for the question Kris. We don’t have another number option at this point. However, the company we are using will be upgrading to VOIP in the next 4 weeks, that will give you the option to watch and listen with headphones.

    In the meantime, the call will be recorded and I can send the recorded call and accompanying materials to anyone who would like to listen or look through them.

    Send me an e-mail if you will not be able to get on either of the calls this Wednesday or next and we will get you everything you need. We want everyone to be able to participate who would like to.

    For the visual part of the call there are only 25 spots available. If you are not able to view the meeting, listen in to the conference call and send me an e-mail at stacie@cholangiocarcinoma.org. I will immediately send you the information via e-mail so you can follow along with us.

    in reply to: Help for patients in the UK #20033
    stacie
    Member

    Startreknewf,

    First I want to say how deeply sad I was to read your post.

    My own frustration, panic and complete feeling of being alone as I researched for my brother was the reason we started the discussion board, so that no one would have go through this alone again. That being said, I’m so glad you’ve found us.

    Unfortunately, your experience is shared by so many.

    We have a lot of work to do in the areas of education and advocacy. Fortunately, we are starting to see many who are standing up and demanding something more, this is part of the process and we want to stand beside, in front, or behind anyone who wants to see progress made in the treatment of patients with cholangiocarcinoma.

    We can do so much more together and yet each individual patient makes a difference, this is what the medical community needs to hear from us and this is what we are striving to do.

    Thank you for your comments.

    in reply to: Newsletter available #20518
    stacie
    Member

    Lainy,

    This is an excellent idea! It may be possible for you to add that to your little information profile, so that when people right click on your name they can see information that you want them to see. I’ll discuss this with Rick and see what he comes up with.

    Thanks for the appreciation of the newsletter. Several of us were involved in content. But as usual Rick put it all together and made it look fantastic.

    Thanks for the suggestions, we certainly couldn’t do this without you!

    in reply to: Does the way we eat raise the chance of getting cancer? #20586
    stacie
    Member

    Iris,

    I agree that nutrition is critical. When I was spending my days researching for Mark, nutrition just kept popping it’s head up everywhere I looked. It was difficult to deny that it was a key player, although I believe there are many keys. We spent an enormous amount of money working with a well known naturopath who gave us a diet, that didn’t make much sense to me, but as I started to research it made perfect sense. Our family eats this way today and I’ve posted that diet a couple of times on the discussion boards. If you can’t find it just e-mail me.

    Basically eat the way it was created, as much as possible. It was easy for me to make this change as I did all the research, but it was another thing for Mark. Eating was painful for him and he didn’t often feel hungry, but when he did – brown rice and fresh veggies didn’t have a lot of appeal.

    One of the books I like the best was called “Nourishing Traditions” now that said, they call it the bible of good nutrition and it’s about as big as the bible, but it is absolutely filled with research on nutrition and for me, I want to read the research. It is also filled with recipes that are based on the research. I think that accounts for it’s size.

    Eat well!

    Stac

    in reply to: Hi, I’m Patty from Chicago #20420
    stacie
    Member

    Patty,

    Good to see you back. Reference librarian, we will all be keeping that in mind :) as there is no end to the research.

    Stacie

    in reply to: Emotional Freedom Technique (EFT) #20839
    stacie
    Member

    Kris,

    Would you send me an email at stacie@cholangiocarcinoma.org

    Thanks!

Viewing 15 posts - 16 through 30 (of 178 total)