Forum Replies Created
September 6, 2017 at 5:11 am in reply to: Trial of FF 21101-Y-90 Phase I working! #94563
Thank you both for answering…No..genomic testing has never been done, but perhaps Dr. Javle will have that done. I also have a call into Dr. Christopher Wolfgang at Johns Hopkins who was written up as having a lot of success with NANO Knife. I am not sure how it is determined which would be better. That is something I will ask Dr. Javle. I have to go through this discussion board to see if anyone has had good results with the NANO Knife treatment..At the moment fares are quite reasonable to Houston..perhaps because of the hurricane’s effects? Thank you for, Mary, for mentioning that treatments have changed a lot. The doctor that I was assigned to after my beloved Dr. Choti and his successor left, said that not much had happened in the past seven year (when I asked him).
Do you know if surgery is ever offered a second time if it is still localized? If not, why not? (the Johns Hopkins doctor said he wouldn’t do surgery and my primary care physician said it wasn’t done again because it didn’t work the first time..hey..I’ll take 7 more years anytime!)
Thanks so much..Kathy I highjacked someone’s thread so I will start a new one…September 4, 2017 at 7:15 pm in reply to: Fear of recurrence #95208
The fear is real..as they say..thank you for posting.September 4, 2017 at 7:07 pm in reply to: Trial of FF 21101-Y-90 Phase I working! #94560
Katrina…I am back on this board after almost a year away. My CA-19-9 marker kept rising and in March 2017 was at 57.5 which is high for me (at time of surgery 7 years ago it was 85). Nothing showed on my scan at that point so the Johns Hopkins doctor took a wait and see approach. I have just had an MRI which shows recurrence. After 6 1/2 years feeling I was getting closer to being out of the woods, it is very discouraging. I have a conference call with Dr. Javle at MD Anderson on Wednesday of this week to discuss the recurrence. I would appreciate hearing more about what you are doing and the others you know of. It is daunting to think of going from Maryland to Texas so often ( I have a 17 year old still at home and a college freshman..Plus others way grown already)…but if it offers such hope, i’m going! Can I contact you? or you me? I’ll send my phone.
Thank you. It is wonderful to read such good news. Congratulations!
Does anyone else have experience with turmeric? I have been taking a tincture of it for the past 5 years and have considered it the reason I have been okay…maybe not? I know John Hopkins has been doing studies of the use of turmeric in fighting cancer and it has had some good outcomes.I, too, has hilar ccApril 22, 2016 at 11:44 pm in reply to: REPEAT PERFORMANCE #92128
How can it be that our cheerleader has to endure more. Since I usually go to the Good News section, I missed your January challenge. And now you have another one! You are one positive lady….wishing you Godspeed over this hurdle and looking forward to seeing you back doing somersaults! We will do a few for you this time….
Sending love…and also belated birthday wishes….
BIG HUG…KathyApril 22, 2016 at 7:09 am in reply to: Question for patients who have undergone resection #91962
I just want to chime in about the pain….I had my resection 5.5 years ago and from time to time I still have pain. Someone else on the website talked about pain, also, and was told that it was due to scar tissue. I was also told that. I did have an incisional hernia which was repaired after two years and now have a hiatal hernia which could also contribute to pain. But I continue to attribute it to scar tissue. Since my scans continue to be clear, I’m going to continue to believe it’s the scar tissue! Also the issues that Julie raised of food passing through. I notice that after emptying out, the pain goes away…important to keep everything moving!
Someone else who had kidney cancer at a very young age (21) who is now in his 40s told me he still has intermittent pain…again scar tissue. At this point, a small price to pay for being otherwise healthy!March 15, 2016 at 6:00 pm in reply to: inoperable, but clean scan at 15 months (now 39 months) #86210
Catherine, I just noticed that you are in Bel Air. I am in Maryland also, but nearer to Columbia (although in Montgomery County). Where did you mom go for treatment? I have been at Johns Hopkins. I am so glad to hear that she is doing well and thank you for all your support on my postings….Kathy
What a rollercoaster ride you and your family have been on for the past few months. I hope the ride can proceed without too many ups and downs from here on out. What a relief you must feel that it is not the c-word! Best of luck to you……
I have a special niche for the Irish…my son and his wife and their four little ones live outside of Waterford…too far away for a grandmother..but I do love Ireland…
Big hugs to you all,
KathyNovember 10, 2015 at 1:34 am in reply to: Hola from Mexico #90289
What a wonderful message. The picture is beautiful. I hope it’s been a wonderful vacation soaking up the sun…KathyOctober 7, 2015 at 3:19 am in reply to: B 4 I 4 Get Again! #89972
oh Lainy! I am so happy to see this today when I checked in! You have given all of us so much support and encouragement that it is WONDERFUL to see your good news. Keep on ordering it not to return…. Congratulations! xxKathySeptember 23, 2015 at 1:30 am in reply to: The Cholangiocarcinoma Foundation – a spot on the 2015 Top-Rated List #89803
CONGRATULATIONS to you loyal, faithful, loving people who have supported us beyond what you could even imagine. The information and caring are unbelievable….you deserve every accolade!September 23, 2015 at 1:27 am in reply to: 5 Years and Still Going! #89796
Thank you, all….Debbie, I do feel incredibly lucky and blessed with time that at one time, I doubted….you are on your way, too! And Pat, you are amazing..thanks for more info about scar tissue..if you figure a way to keep it at bay, let me know. Seems that’s where I am having trouble. And to Gavin, Marion and Lainy….you have been here the whole time I have been going through this…quite a cheer leading crew! THANK YOU … you are the best. xx00
Have a wonderful trip to Florida. You all deserve it! And two years is a great milestone!
This is indeed a red letter day! Congratulations on 10 years..did you ever think? Thanks for your explanation about the scar tissue…wish there was a way to stop it from developing. I was told today by the nurse practitioner that it is the reason why I have pain in my side and under my ribs at times. Of course, when that happens my immediate thought is that the cancer has come back…Thanks for your words of wisdom! And here’s to another 10 years! It is indeed good news!June 3, 2015 at 4:06 am in reply to: 4 year ct scan #88222
Fantastic news and wonderful, too, that you are looking forward to starting a family. Life DOES go on and good things in your future. Thanks for sharing…