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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español. Por favor publique sus preguntas en Español y un intérprete le va responder.
Posts found: 23
Get a second opinion. My friend was diagnosed about 60 days ago. His first doctor said it was inoperable and chemo and paliative care was his only option. Through this site I found Dr. Selby and USC/Keck and Dr. Selby said it was absolutely operable and he operated. Today my friend has no "visually detectable" cancer. They are giving him one round of followup chemo, just to be cautious, but there is no sign of cancer. For a doctor to say "inoperable," and not to even suggest the patient get a second opinion, is so wrong--and it happens all the time apparently. That has been my biggest surprise throughout my friend's experience. Needless to say, get anogther opinion, particularly with an oncologist and a surgeon who see lots of CC patients. It is a fairly exotic, and some doctors simply have more understanding, resources and options than others.
Good luck Mary. You are in my thoughts and prayers.
I'm so happy to hear that Lauren had her surgery and is recovering. My friend went through all the same things--extreme pain, extreme weakness, tubes everywhere, no appetite, discomfort from morphine, etc. I think it's very common from this surgery, so don't worry. It all passes. But I should tell you that even three weeks later, my friend still feels sharp pain at odd times, and is still using a cane to walk. I'm told it really takes a good six to eight weeks to get back to normal, and I believe it. (He also needed two stents, and that prolonged his recovery.) I pray Lauren is past the worst of it. I'm glad she's strong and determined, and she's certainly lucky to have a mom like you by her side.
Thanks Marion, you've been so wonderful and I meant to thank you by name. Your replys to my posts have been so helpful and informative, and really did guide me to Drs. Selby and Lenz. Like I said earlier, I can never thank you enough. God bless, J.
Thanks so much. I'm sure there are others, even that we don't know about, and all stories are appreciated. They all give hope. Thanks again everyone, J.
I just read a post from 32Coupe and it was so great to read about a CC survivor of 16-years! Does anyone know of any others? I know Sue (scragots) is 6+ years. I think it would be so uplifting to everyone fighting CC to have more success stories to focus on. Perhaps if you know of others you can mention them here. Thanks so much, J.
Thank you Lainy, Mark, Gavin, Randi, and Pamela. I've read so many of your posts I feel like I know all of you. I wish you all happiness and recovery for you or your loved ones, whichever the case may be, and I'll keep ckecking in, just to see how you're doing. My friend knows of this site, but this whole experience has been so terrifying for him that he's "assigned" the research to me, so I sort of monitor it and report back to him. Hey, that's what friends are for--especially at a time like this. Take care everyone, I'll be back soon. I appreciate you so, J.
My friend had his surgery with Dr. Selby five days ago. He will be released from the hospital Monday. As per Dr. Selby, there is "no cancer in him that we can see." I know there might be microscopic cells that they can't see, but they'll deal with that as they come up in the future--perhaps with chemo, perhaps with sterotactic radiation.
He went from a death sentence to a manageable illness in 30 days, and it is all because of this site. I learned what CC was on this site. I learned to get a second opinion and maybe a third, from a knowledgeable doctor who has seen many, many CC patients. I learned the names of Dr. Lenz and Dr. Selby on this site. I immersed myself in the tremendous wealth of information here.
I read the touching posts about the sons and daughters and mothers and fathers, and read about their treatment, down to the last detail. And I learned not to quit until you find a doctor who won't say no.
This site saved my friend's life. Whoever runs it, you are an angel and you are doing something so important for so many people. I wish I could repay you but nothing would never equal what you've done. God bless your great work here. I will never forget this experience or this website for as long as I live.
Congratulations. So happy for your success and look forward to reading your positive posts long into the future.
Congratulations--what a wonderful success story. I wish all the outcomes were as positive. Maybe one day...
The surgeon has spoken with the oncologist and apparently the oncologist now agrees with the surgeon that they should "go in" immediately.
It was a bit unsettling that there was a disagreement, but the surgeon was VERY confident and apparently the oncologist came around; it is the situation Pam referenced above.
My friend really hated the first round of chemo. I think the thought of getting the cancer out quickly and not having to undergo months of difficult chemo is almost irresistable.
I hope he's choosing the right path. It's potentially a life and death decision of course. Thanks for all your input. It really gives me perspective.
It seems to me that the general goal of CC patients is to try to have the surgery if at all possible, because if I understand it correctly, a successful surgery gives one the best chances of beating this disease. If a surgeon you respect says "I want to go in and get this" and an oncologist you respect says "you need chemo first," what would be your considerations in making such a potentially life and death decision? I imagine many of you have faced this precise decision; I am wondering what factors you considered. Thanks for your valuable input.
Congratulations, you are an inspiration.
Wonderful news! Wishing Lauren a speedy recovery and may her success inspire others to get many opinions and never give up and never stop fighting. Lauren is lucky to have had you as her guide Pam, and when you both get on the other side of this terrible experience, may you have a lifetime of health and happiness and laughter and love together. You certainly deserve it.
Kathy, just a thought. If you are near The Cleveland Clinic why don't you pursue another opinion about surgery. You may find another surgeon there (not an oncologist) who feels he can do the surgery successfully. I just found this to be the case in with my friend in Los Angeles. One oncologist said "inoperable," and a leading surgeon has said just the opposite. Frequently doctors will disagree, and since surgery is the key to survival, it would be worth a second opinion if you ask me. The surgeon Dr. John Fung at The Cleveland Clinic has extensive exprience according to this site. Perhaps consider calling him...and I pray for your father's recovery.
Thank you so much for your posts Marion and Kris. I read your link with great interest Marion, and your input on having multiple doctors was very helpful Kris. I so appreciate it.
My friend saw Dr. Selby today and it was a very positive meeting. He feels my friend may be a candidate for surgery, and sooner than later. He needs some confirmatory data, but we are cautiously optimistic.
I have to say that the people at USC, both Dr. Lenz, Dr. Selby and their assistants have been absolutely wonderful, patient and explanatory. I can see why they are so highly thought of here.
They just might save my friend's life, and if that is the case, I will never be able to thank everyone on this site whose posts directed me to them. I will be grateful to the day I die, and I mean that.
You are doing such an invaluable service here...you are truly angels for the support, knowledge and comfort you provide. Now I only hope I can report good news tomorrow. Say a prayer please.
Sadly Dr. Lenz cannot take on new patients at the moment, but he agreed to monitor my friends treatment, and in fact he suggested a couple of modifications to the chemo protocol, and asked for three additional tests. What a great guy--I was thoroughly impressed--and as others have noted, his assistant Taline is truly exceptional as well.
My friend sees Dr. Selby Monday and I hope he is optimistic about the possibility of a resection. Does anybody have any input as to the parameters that make resection possible? I know adjacency to major blood vessels is a factor. I assume metastases are as well. Any input would be appreciated...especially if it helps me get through the weekend. Thanks, J.
I'm so sorry. The speed in which this disease can act is just startling. My heart is with you. I hope with time your memories of the happy times displace these difficult ones. God bless, J.
Good luck Lisa. You are an inspiration--I know you can beat whatever comes your way.
Thank you Pamela and Marion. I appreciate your concern. My friend is seeing Dr. Lenz tomorrow. I am hoping and praying that he either says it's resectable or he thinks it will likely be recestable after chemo and/or radiation.
I now there are some cells in the lymph nodes, but apparently this is not unusual for when CC typically presents itself. I do not believe it is in his pancreas thankfully. He was told it's Stage 4, but this was by an oncologist who far from specializes in CC. And regardless, I know that others with Stage 4 have had successful surgeries and are in remission, so I am hopeful.
I'm just relieved he's seeing an expert tomorrow; I know Dr. Lenz and Dr. Selby are real fighters and don't give up. That's what he needs.
He is otherwise healthy, in his 50s, and this is just a shock to all of us. He's a very well-liked guy with many friends, and of course we are all worried. I am just glad I found this site. It's been a life-saver...literally, I hope.
I think Dr. Venook might be a good answer. He seems to be very highly regarded and San Fransisco is nearby. I'm just not sure my friend has the strength to travel across the country.
Thank you for that link. I read through the entire seven pages and oddly enough there is not a single comment about Mayo, Scottsdale. If anyone has had any first-hand experience there, I would love to know. And thanks again for the link--what a great resource.
First, thank you for having this wonderful forum. It is amazing to have such a wealth of information and support at one's fingertips. My deepest thoughts and best wishes go out to everyone here who is battling this rare and serious condition. I admire your strength and courage.
A dear friend was recently diagnosed with CC. Thankfully he will see Dr. Selby and Dr. Lenz at USC Norris next week, but from my reading here it seems that he might benefit from a second opinion at Mayo, Scottsdale at some point--particularly if a liver transplant is a consideration.
Does anyone have specific experience with an oncologist there that's been particularly rewarding? I'm just looking for a name as a starting point for an appointment. Any help would get greatly appreciated.
Thanking you in advance, J.
Posts found: 23
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