March 23, 2014 at 5:31 pm #79073
MASS GENERAL will have more clinical trials available.
J H is also very good too.
The main things is the desire of your mom wants to do treatment or not.
Side effects of treatment or clinical trials will affect the quality of life.
God bless.March 23, 2014 at 3:38 pm #79072lolaSpectator
Would you recommend going to Hopkins for cc treatment and/or clinical trials over Mass General or John Hopkins? If so, why? My mom has cc with mets, she’s 70 yrs old.
LolaFebruary 9, 2014 at 11:36 pm #79071darlaSpectator
Glad things went well. Have to agree with the others as to the eating thing. As hard as it is to do or even think about at times, please try. Hope things start to improve soon.
Love & Hugs,
DarlaFebruary 9, 2014 at 10:15 pm #79070lainySpectator
Percy, YIPPEE for the RFA going so well. PLEASE try to eat even little bits. I was in that spot a year ago and really got in to trouble. Perhaps we should send you some of Duke’s Fortune Cookies! My wish is for you to be comfortable and to heal quickly!February 9, 2014 at 9:14 pm #79069marionsModerator
Percy….hydrate, hydrate, hydrate and please, try to eat a bit. Four days is way too long to go without solids and especially protein. Don’t worry about us – we are worrying about you this time.
MarionFebruary 9, 2014 at 8:56 pm #79068RandiSpectator
Good to see your name pop up on the discussion board Percy! I too am glad that the RFA went well. Here’s to a speedy and easy recovery.
-Randi-February 9, 2014 at 6:12 pm #79067gavinModerator
Great to hear from you again my friend! Was getting worried after not seeing you around for a while. So glad to hear that the RFA went well and I hope that you make a speedy recovery from that and the flu like symptoms too. Get your strength back and once you do get eating again too. We’ll see you when you get back here.
Stay warm and be well,
GavinFebruary 9, 2014 at 5:46 pm #79066
Nice to see you back on-line
I pray for your quick recovery, be strong.
TFebruary 9, 2014 at 4:49 pm #79065willowSpectator
Praying for your recovery from the RFA side effects. This includes return if your appetite and your spirit.
WillowFebruary 9, 2014 at 4:25 pm #79064
Sorry,Theresa,we could not find time to meet.
My appointment including one nite stay after the RFA procedure. Everything works perfectly. It was the flu like symptoms that dragged me down after went back home.
Have not eating for 4 days, it just don’t have the mood .
Thanks for your concern, I hope I will be back shortly to join the discussion board.
God bless.February 7, 2014 at 1:57 am #79063
Percy, I’m hoping you are well and your appointments went well in Rochester. I know how those appointments can get behind and time gets away. Let us know how you are.
Prayers to you
TheresaJanuary 29, 2014 at 9:09 pm #79062
Percy, I work in Rochester at the college, RCTC, anywhere from 2 -5 days/week during the school year. Give me a shout if your looking for someone to talk to. I have gained so much knowledge from reading the posts on this website, to the point where one Doctor said “you’ve really been doing your homework”. I feel like I need to be an advocate for my mom since she really does not want to research this disease because of the prognosis received. I do have a medical background, I’m a Certified Veterinary Technician, and do know the terminology, blood values, side effect issues, etc. etc. etc. My saying is “a little knowledge, can be harmful”, but not in this case, you need all the info you can absorb.
TheresaJanuary 29, 2014 at 7:42 pm #79061bananaf1shSpectator
I also want to join in the chorus of thanks for this post. It’s really helpful and informative. My favorite part is that your liver test numbers are normal! I’m also glad to hear that your son accompanied you to the appointments.
Sending you warm & positive thoughts for more good news to come,
CarolineJanuary 29, 2014 at 3:10 am #79060
Thanks for your complement.
I was at Mayo between 1/20-1/22 with my son. We might actually cross path with you if you were at Mayo during those days.
If Mayo set a date for my ablation ,I will let you know to see where we can meet @ Mayo if it will work out between our schedules.
As I said before here on the message board, I have no choice but try to learn and share about this disease hoping that we can someday, finding a better treatment alternative or more tolerable therapy for patients like your mom and me. I can honestly say to you, I am still learning about this disease like you and I will go to conferences to learn more and let all of us, patients and caregivers, know about the most up-to-date information about this disease. As far as I know, the information on this message board is very up to date even when I discussed options with doctors at Mayo. Mayo Clinics ,if you understand , is more conservative among other medical institutions which specialized in CCA.
Anyway, nice to talk to you and appreciate your kind offer of”just being there”.
God bless.January 28, 2014 at 11:00 pm #79059
Percy, you’re willingness to share your story with soooooo many strangers who have become your friends, support line, listeners and most of all learners is priceless, I thank you. Maybe we’ll meet you in Rochester when we are there, or if you need someone to be there, just to be there, I’m not far from Mayo at all.
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