Example & Experience of A 2nd Opinion-@ Mayo Clinics

This topic has 22 replies, 10 voices, and was last updated 10 years ago by pcl1029.

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March 23, 2014 at 5:31 pm #79073

pcl1029
Member

Hi,
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 #79072

lola
Spectator

Hi Percy,
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.

Thanks,
Lola

February 9, 2014 at 11:36 pm #79071

darla
Spectator

Percy,

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,
Darla

February 9, 2014 at 10:15 pm #79070

lainy
Spectator

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 #79069

marions
Moderator

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.
Hugs,
Marion

February 9, 2014 at 8:56 pm #79068

Randi
Spectator

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 #79067

gavin
Moderator

Hi Percy,

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,

Gavin

February 9, 2014 at 5:46 pm #79066

tivers
Member

Percy
Nice to see you back on-line

I pray for your quick recovery, be strong.

T

February 9, 2014 at 4:49 pm #79065

willow
Spectator

Dear Percy,
Praying for your recovery from the RFA side effects. This includes return if your appetite and your spirit.
Love,
Willow

February 9, 2014 at 4:25 pm #79064

pcl1029
Member

Hi,everyone,
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

tivers
Member

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

Theresa

January 29, 2014 at 9:09 pm #79062

tivers
Member

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.

Theresa

January 29, 2014 at 7:42 pm #79061

bananaf1sh
Spectator

Hi Percy,

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,
Caroline

January 29, 2014 at 3:10 am #79060

pcl1029
Member

Hi, Theresa,

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

tivers
Member

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.

(((((big hug)))))

Theresa
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