sara
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Gillian,
I do recall coming across some studies that have shown a correlation between celiac disease and some of the GI cancers. Rather than try to summarize from memory (scary!), let me try and track down those studies, and I will post them as soon as possible.
-sara
Glad to hear you were able to get into Mayo so quickly! I cannot tell you exactly what to expect, as I’ve never gone through their process myself. However, I do know that they do not experience the long wait times that you may find at MD Anderson. So, I think your time spent their may end up being pretty efficient. And if it is doable, bring another set of ears to sit in on all the meetings with you. It sounds like you’ll be shuffled around quite a bit during that 7-10 period – that’s a lot of information to digest, and it would be helpful to have someone else in the room with you when meeting with the doctors.
If they haven’t already mentioned it, talk with the folks at Mayo about their free housing option. I know they have a lodging option that is pretty close to the hospital, and frequently used by the radiation patients that have to be there for 2-3 months for daily radiation treatments. I’ll see if I can collect more information as well. It’s a great option for those staying in Rochester for a week or longer.
By the way, you may have already tried this route, but you can schedule an appointment at Mayo at this location: http://www.mayoclinic.org/patientinfo/appointments.html
Heather – I second Bill’s recommendation of Dr. Steve Alberts. He’s actually the Chair of Medical Advisory Board for The Cholangiocarcinoma Foundation, and I know he’ll get you through the system quickly. I’ll email you separately as well.
I’m so sorry that you are going through this.
Welcome back, Jeff! Glad to hear you had a great trip – would love to see some of the 181 pictures. Maybe you could add one as an avatar to your name.
Chase – this is a fantastic idea! There are quite a few kids and young adults affected by this cancer, and I imagine many of them will participate. Your entire family truly is an inspiration.
Thank goodness, Charlene! I second Jeff – thank goodness for antibiotics! Glad to hear he has turned the corner.
You guys are in my prayers. (as is everyone on these boards!)
-s
To follow up on devoncat’s thorough information: the transplant option is one that is only available to a select few. You should certainly explore this course with your health care team, as no one on this board could tell you whether or not your mom would be a candidate. That being said, devoncat is spot-on regarding the cherry-picking of patients for the procedure. It’s actually pretty difficult to meet the requirements – tumor size OR number of tumors; vascular involvement; lymph node involvement; what type of biliary cancer (intrahepatic vs. extrahepatic, vs. klatskin); overall health. While extremely frustrating, the US has a tremendous organ shortage, and the doctors end up being extremely selective to ensure the few available organs go to the most positive cases. I think at the end of the day that this drives home the point every healthy individual in the US should sign up to be a donor so that we can move towards loosening the requirements. Even if it is only a few people that are missed, you have to wonder how many people were just outside the eligibility criteria for the transplant, and may have been cured…So frustrating.
rjoday,
The doctor who established the transplant protocol (Dr. Gores) is at the Rochester location. That being said, I’ve read that the transplants come a bit more quickly at the Jacksonville location. I’m not sure why available livers are faster in Florida, or if this is truly even the case. I am merely reporting on what I’ve read. You may want to consider contacting Rochester first and exploring this option with the doctors there – I imagine they would know for certain whether liver availability is greater in Florida than in Minnesota.
Brenda – please do not feel guilty. I imagine everyone on this site is happy for you and Scott. I am not aware of a single person in this community that actually caught the disease in the precancerous stage, so I imagine many share the hope I feel that there actually are doctors monitoring the “at risk” patients, and catching the issue before it becomes cancerous.
As an aside, I have read that some patients have had quicker success at receiving the transplant by going to Mayo’s facility in Florida. I cannot recall why, but maybe that is worth looking into further.
By the way – I am in love with Scott’s work! He is so very talented. I just sent him an email regarding a couple of doodles.
You know, my sister passed away from a car accident the day before my 17th birthday. I spent my senior year of high school in a complete daze, and left for college right after the 1-year anniversary of my sister’s death. I struggled greatly during my freshman year in college, and towards the end I finally started seeing a counselor. I had mentioned during counseling how hard of a time I had been having with my undergraduate advisor, who basically disregarded me as being female and stupid rather than listening to what I was trying to tell him about my grief. My counselor finally called my undergraduate advisor, and tried to explain to him the grieving process. The reality was that the cold man was in complete shock and disbelief that I was still grieving almost 2 years after my sister had passed away. He actually told my counselor that I was milking the death, and I should have been over it by 6-12 months. ???? Seriously, there are freakin’ idiots out there that just don’t understand how difficult it is to lose someone important to you – how the loss shakes you to your core and can completely dibilitate you. All I can say is that these people are completely unfeeling individuals, or they are lucky individuals that have never lost anyone of significance in their lives. I always pray that it’s the latter.
At the end of it all, it took me a little over 2 years, and a lot of therapy, to walk through the grieving process after my sister passed. It took me about 1.5 years, and a bunch more therapy, after losing my friend, Kelly, to cholangio. It’s a tough road, and it cannot be rushed. I don’t know how long it will take you to start laughing when you remember your dear husband, (or your dear mother, jmoneypenny) rather than break down in tears. But the day is out there somewhere, and you will get there. Hang in there and know that so many in this community are walking the same road and are here for you. I’m so happy that you stopped back by…
Oh, wow, Robyn. That’s just terrible and completely unacceptable. I’m not sure the appropriate reporting authority for hospice workers into your state (aren’t they generally nurses?), but I would look into that and file a formal complaint. My friend, Kelly, also had the bile coming out of her mouth and nose, but there was never a question on how to handle. (we ended up having a suction machine that would help us clear her mouth and nose) Kelly’s hospice nurses were there 100% of the time once she asked to transition to hospice. That only lasted about 2 weeks, but never once was Kelly’s husband, or any of her friends, wondering what to do about the fluid, pain, etc… I just cannot believe that the social worker would say such insensitive comments. If you want to pursue further, I would wait for a little time to pass and then try working your way up the ladder until you find the right person that will actually listen to what you are saying.
Big hugs to you – you are in my thoughts and prayers.
Big hugs to you, Kay. Even having witnessed the final days of this disease, I am struggling to find words of “wisdom” to pass on to you. I suppose I’ll pass on what a good friend said to me – soak him up as much as possible. And I don’t mean soak up the sickness; rather, I mean to soak up as much of your dad, as you’ve always known him.
As for advice regarding experiences, I think you’ll find the people in this community to be very helpful. No doubt if you ask for help regarding a specific issue your dad is having, someone on this board will share their own experience and how he/she addressed the issue.
Hi, Brenda. Welcome to our community – I sure do wish that you and Scott did not have a reason to be here, but I’m glad that Stacie directed you our way. You guys are in my thoughts and prayers – I hope the transplant comes through quickly. I cannot even imagine the anxiety that comes with waiting. Big hugs to you, and support will be coming in spades from the community here.
