Help – your advice needed
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I struggle to call out one moderator because you are all so very special to each of us. As a group, I hope you feel proud of how much you help people desperately looking for help, advice, guidance, condolence, and more.
I echo others comments regarding Marion. I have no idea how many hours are in each of her days because she does more in 24 hours than is normally possible. She truly is the driver that moves this foundation – not just this forum.
I have had some very personal, private interactions with this foundation. I won’t go in to details of the topics. I only bring it up because Marion was, and has always been, the steady influence who always tried to find the best solution for everyone. That is who she is and what she does.
I salute all the moderators. I also acknowledge those special persons on this forum who may not be moderators, but spend so much of their time trying to add value to others. What a special group.
My thanks to all of you.
CarlWell said Lainy, here’s to you Marion! We would all be lost without you!
Hugs and thanks to you all,
Gavin
And here is to you, Marion. NONE of us have a clue what all you do for CC. You are the energizer bunny and you go well in to midnight every day trying so hard to help find that missing link, finding the best ONCS and Surgeons and oh so many things I cannot even begin to write them all down. Since Bruce passed you literally spend every waking minute eating and breathing CC.Org. And like everyone else you have your own family situations going on at the same time. Some times I picture your head as a file cabinet and you pulling file folders from it all day long! This seems too simple to post about you, I could go on and on but it would blow up our Site! We love you!
What started with a very small group of people (I believe we were less than 15 in all) has grown to be the most sought after discussion forum for those touched by this cancer. The success of this board is directly related to the kindness, caring and compassion of those contributing to this site. This community has created an invaluable resource, shares experiences and offers support for those seeking answers to this disease.
Our moderators are not monetarily rewarded rather their commitment to all is based on true selflessness.
Pam lost her young daughter to this disease. We are devastated and still are reeling from the shock of it all. Although, she is the one in need of support, it is our Pam that has helped us, the members of this site to heal and move forward. While her heart is broken in millions of pieces, she continues to offer support and encouragement to others.
While fighting for his own survival, Percy continues to search for answers by attending conferences and symposiums, serving as FDA patient advocate, donating numerous hours to research and treatment options; providing support to the foundation and members of this site. He has undergone three resections and numerous, other treatments causing fatigue and tiredness and yet he continues to be there for us all.
Kris has undergone numerous treatments and has dealt with serious side effects. When speaking of a Cholangiocarcinoma roller coaster ride, our Kris has experienced it all. Personally, Kris has survived the ups and downs of this cancer and yet our Kris continues to be there for others.
Randi has conquered three cancers including Cholangiocarcinoma. Rather than turning away from cancer, she has chosen to volunteer her precious time to help others on this site. Additionally, Randi finds time to participate in APOS phone conferences in order to obtain knowledge beneficial to us all.
Lainy has lost Teddy to this cancer, is in treatment for debilitating UC and yet she continues to check in with this discussion board all through her waking hours. She is always here to lend an ear and to give advice and continuous to humor us through it all.
Gavin lost his Dad to this cancer several years ago. He has virtually no help in tending to his ailing mother and yet he devotes much of his life to this foundation. He supplies us with most of the new developments pertaining to this disease and has been especially helpful to those patients and caregivers living in the UK. His contributions to the Cholangiocarcinoma Facebook Page encompass the majority of entries.
We are mainly a volunteer organization. Thousands of hours have been donated to creation of this site and thousands more hours are needed in order to sustain the growth of this foundation. The work behind the scene is endless – we work with limited resources; we lack manpower. Donations to the foundation are carefully selected for specific research projects leaving very little for occurring expenses. Most of us have not only donated our time, but in order to grow we also have contributed financially to this foundation. At times we are overwhelmed, continuously understaffed, but we don’t waver from our goal by providing the best service possible to the Cholangiocarcinoma Patient Community at large.
Do we want to improve on this site – absolutely, we do. Though we love to please everyone, we simply are not always able to do so. Can we answer all questions – not likely. But, together we have built the platform for success.
We deserve a hug. So, here we go.
MarionDorian,
You have committed to a treatment protocol and are feeling regret because you feel like you didn’t get all of the information from people on this site to make a decision. I understand your frustration since these are life and death situations we are dealing with here. Keeping that in mind, I personally only post information to posts that appear close to my own experiences.
I know it’s easy to lay blame elsewhere when we are feeling loss of control over our personal situations. It is natural to be angry and direct that somewhere, so don’t feel badly.
The people on this site (moderators and others) are really here only to help out of the goodness of their hearts. The sharing of experiences is the power if this site. Searching through older posts or being directed to them is sometimes the most helpful answer to questions.
We try hard here and I know you are trying hard too.
Hugs
RandiMy advice for anyone on this site is to be fairly specific in the topic if it’s a new post. For example, when discussing the clinical trial, I usually put the drug number. Or if I wanted side effects from gem/Ox that was the topic. It helps when using the search function.
While no website is perfect, I, too, await the changes. I’m not sure how it will affect how we do “business” here. Hopefully it makes searching easier.
I try hard to answer posts where I feel my experiences as a patient are relevant. However, I have not had many of the newer, less tested treatments, so all I can do is empathize with people over nerves, etc. I, also, find it difficult almost all the time to read some of these posts. But I want to help.I struggle to even get into this mix but, for many personal reasons, I feel I must respond.
First, I want to say thank you to all those who try to add their input to benefit others. The moderators are truly caring people who clearly would do anything in their power to help. And it’s not just the moderators. It’s so many people who have “been there” and want to try to help others.
Second, I feel Dorian’s pain. It is challenging to find answers – or even a path forward – by using this forum. Yet there is a mountain of information and a plethora of experiences. The hard part is digging through all of it to find what is truly relevant to a particular patient/caregiver.
This forum is useful, but it has become the primary vehicle with which to seek answers. And that is not the structure nor design of a blog (i.e. this forum). Where else do you peruse through hundreds, if not thousands, of personal messages to find an actual answer to your questions? It’s not the people, it’s the tool that causes frustration.
I know the foundation is working on an improved website and I eagerly await the revision. I also understand that, in some cases – myself included – we are searching for immediate solutions. This foundation, and this website, has become the standard “go to” site for guidance by Cholangiocarcinoma patients and caregivers around the world. That is a huge challenge – keeping ahead of the information associated with CC, and then providing it to everyone in a consistent manner.
There are no easy answers, but I will still come to this forum in the short term to look – even if that doesn’t happen daily. I know I will miss out on possibly key information on those days where I cannot log in – and I wish there was a better way.
I also know I truly admire and respect every person who is willing to come here to post their personal information so it may benefit others.
Carl
Dorien,
I gave you the most honest answer I could. Y-90 was not a last resort for Lauren. As I said before, it did help her and killed all her tumors. Everyone on this board tries to help everyone as best they can. I, for one, cannot spend 24/7 on here. It is difficult enough for me to come on here and try to give people comfort. We all volunteer our time here. Everyone else is in the same boat and scared. You said you wanted to hear from some “real people”. I’m as real as it gets. I could have left this group after my daughter died, but I wanted to stick around and help others by sharing our experiences. I hope you were just in a bad mood the day you wrote your post, because if you really feel the way you say about this board, it deeply hurts my feelings. You will never find a more kind and compassionate group. Cancer sucks. I know it. You know it. I am sorry you are having such a difficult time. My heart goes out to you, Kyle, and your family.
-Pam
Dear Holly and Willow, I want to thank you both for putting your posts into perspective and being able to say what I could not find words for. There is NO other site like CC.Org. The other morning I woke up to a post from India and one from Lebanon both at the same time. The reason I get excited as it shows we are reaching around the world and the more we touch the quicker we are noticed and the faster research will work for us. All of this from a small group of volunteers and a Board of loving people trying their best to help each other. Bless each and every one of you.
Dear Dorien,
I thought sharing my sisters y-90 experience was “real life” and helpful. My friend Martha’s experience was also not bad. Though not a cure, Y-90 is not a last ditch treatment but is one of many treatments for liver tumors. My sister went through y-90 with no complications beyond some pain that got bad around the 2-3 week point. The treatment did help those tumors targeted… Just doesn’t stop microscopic seed cells that were metastasizing. My sister is still here, almost a year from the Y-90 (15 months from diagnosis) and with no serious complications from the CC amazingly. She is still on palliative chemo to buy time (3rd kind) and her disease is still slowly progressing which is super scary. The unknowns can drive you crazy so we try to focus on one day at a time. There’s a book written by the wife of a CC survivor called “Every 15 minutes” and advises to focus and deal with life in small increments to keep from being overwhelmed and paralyzed with fear and grief. Because you have a family and husband to care for, I hope you’re seeking help for yourself. My other advice is to simplify home life as much as possible… This is what I’m doing… A LOT less than I used to. My kids had to cut back on activities too because we just can’t do it all and it makes for a calmer household.
I’m so sorry your husband is having a bad experience. You’re not alone.
WillowI cannot come on the discussion boards every day – it is very hard as things worsen rapidly for me. But I am one of those very “real-world” people who has done y-90 and have written here extensively about my experience, which was good. In fact I am considering doing it again (you can only go twice, total) because it bought me 6 months of wonderful life. Please do not be angry. We are all doing the very best we can with an extremely difficult disease that has no real protocols for treatment and every case seems so different. If you want to message me privately about y-90 or if there are just questions I did not answer for you, please write again. But don’t be cross. It is hard enough to die of this thing, as many of us are, while we try to still search for answers, help, and solace, without letting a lot of negative energies onto these lovely discussion boards. Holly
Dorien…….I feel you pain, agony and frustration and appreciate the forthrightness of your comments however; I don’t agree with the fact that you may have made a “bad” decision. The underlying clinical issues of Kyle’s disease set the tone for treatments which is primarily based on the implementation of evidence-based interventions. I for one am expecting the positive results to coincide with the expectations set forth with this treatment.
We must remember that “rare diseases” lack the necessary funding and research opportunities granted to larger population based illnesses. The current shift of patient organization involvement with the NIH, FDA, NCI will lead to acceleration of research however; we are caught in this developing wave of new approaches with outcomes not yet determined.
And, that dear Dorien, is it in the nutshell. We have to continue to search for answers, evaluate and decipher those treatments available for our loved ones and then move forward with our decisions in order to not be defeated, but rather to benefit from positive responses. In a far reached sense this relates to personalized treatment applicable for our patients at present. It is not until the molecular behavior and the underlying genetic components of this cancer are clinically validated that treatment options may change. At present and in the foreseeable future we must rely on the knowledge gathered, present to the treating physician and agree to a treatment plan available to us
Blogs such as ours provide a venue for those wanting to share thoughts and ideas and personal experiences as well. I can’t emphasize enough that we (the foundation) do not set the terms of involvement rather; we encourage the interactions amongst all members in the best way possible. Some prefer to share personal experiences – some do not. Some look for answers scientifically based whereas others prefer to read easy to understand comments. Many simply don’t fully grasp the complexity of this disease or, for various reasons are hesitant to comment or to make suggestions. It is for that reason that the moderators encourage people to peruse the older postings provided on this site.
Treatments are based on disease presentation. Possible Radiation treatments are determined by the tumor burden and based on these findings allow for possible intervention. Patients and caregivers can be actively involved by gaining knowledge and understanding ranging from basic to more advanced ultimately though; it is up to physician to implement the treatments.
Stage IV disease presents with enormous challenges, but we have learned and continue to witness slowing of disease progression and there is no reason to believe for Kyle not to be equally as fortunate. Other options may then become available.
You hang in there, Dorien. Tons of love and support is heading your way.
Hugs,
Marion
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