1

(9 replies, posted in Members' Cafe)

Dear Kris -
Sorry to hear about the loss of your friend.  I am sure you were a huge comfort to him and his family during the process with your strong spirit, spitfire energy and relentless positive attitude.

Hi Rob
Thank you for taking the time to reach out to all of us and for the commitment of your time and passion.  I know we all derive enormous assistance, insight and comfort from this site,  whether we are daily contributors or regular "lurkers".
Please keep us posted on your travels - we are all together in our hopes and prayers for a cure to this awful disease.

3

(5 replies, posted in Introductions!)

Hi Marion
I tried to find the book - the link took me to an error message .  I also tried the "search" feature which also brought up the same link, which then unfortunately also resulted in an error, not found message.
Is there another way I can download it?
Thanks
Sandy

4

(3 replies, posted in Introductions!)

Hi Marion
I tried to find the book - the link took me to an error message .  I also tried the "search" feature which also brought up the same link, which then unfortunately also resulted in an error, not found message.
Is there another way I can download it?
Thanks
Sandy

What a wonderful story of hope and faith.  Thanks so much
for sharing.

Great news Lainy - truly the best news I have heard in so long!!
So time to go back to keeping us smiling, laughing, crying, entertained, but most of all,  full of life and hope and light.

Kris - so glad to hear that you have found an ONC you feel so comfortable with.  We are still with Dr K so I feel your relief.
I am still laughing at the Vision Lainy painted of you ala Marlena Dietrich.
Best
Sandy

8

(13 replies, posted in Members' Cafe)

Sorry Kris to have missed you this time, but I hope you got dug out.
We actually did not get all that much snow here but it sure is cold - I for one do not like when the temps drop below 70 degrees so I'm glad I saw the tree early this season!
Stay warm safe and dry and get rid of that cold!

9

(13 replies, posted in Members' Cafe)

Hi Kris
I am definitely up for meeting you there.  Let's coordinate.  You are more than welcome to stop by while you are in town.

Such wonderful news - Enjoy the holiday and big big Congratulations!!

11

(45 replies, posted in Introductions!)

All our thoughts and prayers are with you Dakota!  Best of lucj

12

(56 replies, posted in Introductions!)

Thank you Lainy and Chris - as always - for bringing me back from despair, and putting a smile on my face.
Thanks also  PCL and Marion for weighing in.  Your support, experience and insight are invaluable.
So based on the feedback we went over today to see Doctor Fong - we would have seen him immediately upon hearing the latest developments but today was his first day back after a week of conferences.
He was actually very pleased with the liver - back in July when we started Chemo he said that ALL the blood vessels were constricted and Dave could well not have made it to August.  Now they were all open,and the original tumor was down in size again, this time to 8 cm.  He was not particularly concerned with the second tumor in the liver - all the original satellites he burned off during Dave's surgery no longer appeared.  He felt strongly that the FUDR was still the most effective way to treat this that they had found - also he was thrilled all the Markers were normal.
Of course he was less happy with the bone lesion - he said this would not be a killer, but rather a quality of life issue  (rather than a longevity of life) as it had the possibility of causing a significant amount of pain.  He said he was glad there was only one, he could easily have seen a number appear and that one alone was a very decent sign.  He set us up to see a Thoracic Surgeon tomorrow to evaluate whether it made sense to remove the rib in order to do away with the pain - his biggest concern was that having surgery would mean stopping Chemo and that was probably not a good option at this point.  He was more inclined to see what Dr. Yamada would say regarding Radiation options. 
I asked about Clinical Trials - he said that would at some point be an eventuality, but really was a last resort and something we would explore only when the Chemo stopped working.  He felt strongly we were pursuing the best Chemo combination out there, one that had demonstrated the greatest success.  Same for Molecular Profiling at this stage.
Overall, feeling a lot more positive and less helpless than before meeting with him.   Felt we left with a game plan and a much better understanding.  I think Dave also felt a lot more hopeful.  All in all, a good day!

13

(56 replies, posted in Introductions!)

Thanks Lainy and Kris for the quick and always loving and supportive words especially in light of this setback.   May I find both your strengths to keep a dedicated focus on what matters most, Dave's well-being,  and not let the "noise" derail me.  I am a Taurus and have repeatedly been told I give new meaning to the dominant traits of stubbornness, being headstrong  and relentless pursuit of what I want!!
I know with you keeping us in your prayers, when things seem the bleakest, we will move beyond this and get a handle on this terrible disease.

14

(56 replies, posted in Introductions!)

Though I haven't posted in awhile, I check in very frequently, mostly daily, and read each and every one of your posts and updates with great interest, caring, excitement for the good news, and heartfelt pain for the disappointments.  I still know so dreadfully little about this horrible disease (to paraphrase Lainy, writing its' name would give it too much credit),  and still feel so overwhelmed by the diagnoses, side effects, options available.

Dave had his pump installed on June 24th.  He began Chemo in July with FUDR being administered directly via the Pump , alternating every 2 weeks with an off cycle of steroids and nutrients.  In addition he was getting systemic chemo every 2 weeks -Gem/Oxy.
He had his first follow up scan in October at which time Dr Fong did the greatest happy dance ever as he delivered the news that the tumor on the Right side of Dave's liver had shrunk from 14cmX9cm to 9cmX5cm, a reduction of close to 70%.  He was beyond thrilled and confirmed we would continue the regimen we were on and meet again in January to reevaluate.  He continued to hope that removing the tumor at that point would be a possibility, but restated that would be dependent on shrinkage at that point as well as evidence of spread to the other side.
After losing close to 35 pounds, feeling exhausted, winded, barely able to 
get out of bed for all of July and August, all of a sudden in September it was as though a switch had been flipped and he said he felt as good as he had ever felt!  His energy was back and much of the weight crept back on.
Then the last 3 weeks he was feeling worse and worse by the day.  Tired, winded, constant pain even though he was taking Oxycontin regularly, running daily fevers around 100.1 to 101.0 and just all around lousy.  When he went in for his bloods this past Monday and appointment with Dr. Kemeny all his bloods were still very good, all within range, with the exception of slightly elevated White Blood cell count.  Dr Kemeny was concerned that with the elevated count in conjunction with how he was feeling he had an infection so she cancelled chemo for the day and sent him for a Scan.
When we returned Wednesday for the results, Dr Kemeny was as somber as I had ever seen her (guys- those of you who have been treated by her and have written here about her - this was DIFFERENT) - she sat with us for a long time.  She was beyond shocked to have found a second NEW tumor of good size in the liver and a lesion on the bone on his lowest left rib.  She prescribed a PET Scan next week, and an appointment with a Radiologist December 18th to begin Radiation treatment.
We did our chemo that day  (the FUDR plus the Gem/Oxy)plus she added an injection to treat the bone as well as a prescription for Xeloda complete with all the warnings that seem to accompany that drug.
She wanted to double the FUDR but decided to hold off until next round just to minimize introducing too many variables all at once.
As you can imagine this news was a devastating setback - we completely were prepared that at some point the Chemo would stop working but were completely unprepared for all this at this stage.
This is where we are at - Dave is destroyed and I have no idea what to think or what I need to do.  Any/all wisdom or feedback gratefully appreciated

15

(20 replies, posted in Good News / What's Working)

Oh Kris!!  That is such wonderful news!!  You ARE our Hero!!
You are here every day for every one of us - let's all celebrate you today!

16

(7 replies, posted in General Discussion)

Hi Chris
Wishing you the best of luck, fantastic results and all around great JooJoo (sp?) for your tests oh AND luck at the tables - enjoy! you have certainly earned it!!

17

(56 replies, posted in Introductions!)

has anyone heard of Andrew dela Torre
http://www.njlivercare.org/specialist/s … Torre.html

he was recommended by someone as doing advanced clinical trials in advanced stage Liver Cancers?

any/all insight gratefully accepted
Thanks as always for the help, love and support!

WOOHOO!!!  You deserved all of it!!!  well done!

19

(56 replies, posted in Introductions!)

Thanks so much Lainy - you are always the best!! 
Actually he watched the end of the Yankee game first - fortunately they won - and then crashed big time.
Sadly I have to head to Atlanta tomorrow for business, but our daughter will be home after work to be with him.
Breakfast in bed sure does sound nice though!

20

(16 replies, posted in Good News / What's Working)

WOOHOO!!!  You ARE our hero!!!  well done, keep up the awesome work!

21

(56 replies, posted in Introductions!)

SO we had our 3rd appointment today with Dr Kemeny.   Full of anticipation! We got there 30 minutes ahead of the 11:15AM appointment as they request (I suppose to take bloods etc).  We finally saw her around 1:30PM (they said she was running late).  She informed us Dave would be getting a 50% strength dose of FUDR and a second round of the Systemic Chemo.  Of course it took a while to prepare the cocktails so we sat,  went out and had lunch, came back and sat and sat.  Finally at 6PM the chemo was delivered and we were brought into the Suite to begin the 3 1/2 hour ordeal. 
Dave had lost 15 pounds since the last appointment exactly 2 weeks ago so they reduced his self-administered blood thinning injections from 2 a day to one as they are based on body weight, and took him off the Lisinopril he had been taking for high blood pressure as he was now around 106 /60.
Also took him off the diuretics as he was so dried out and dehydrated  they couldn't even get the IV into him to administer the chemo until they wrapped his arms in hot towels for 15 minutes.
After a total off 11 hours there he got home exhausted and glad just to be able to lie down in bed and be comfortable.
Waiting to see what this round brings.

Hi Matt
Best of luck today! Sorry to hear about your long journey - we seem to be right in there with you.
Maybe we will see you at MSKCC today - Dave's second (at least scheduled) pump session is with Dr Kemeny today at 11:15AM but I have come to learn visits there are typically an all day affair!

23

(30 replies, posted in Members' Cafe)

Hi Kris
I replied on the other thread but would love to meet - I am in NYC so something in the Basking Ridge to Phila area would be doable for me.
Thanks for your help here!

Hi Kris
Thanks for your wonderful posts and offer to meet up with "locals".  Whereas we are in NYC, sounds like you have so much experience, success and wonderful energy to share. I would gladly make the trip if you are willing to put something together.  Please keep me posted!

25

(56 replies, posted in Introductions!)

Thanks Kris, Lainy and Marion and all of you who have responded and have been so patient with me and so full of care, concern, wisdom, support and fight!!
Each day seems to bring a new challenge with it- the sleepless nights, the night sweats, the loss of appetite, the shortness of breath was a new addition, the constipation from the pain meds and all the usual stuff - today is the first day of the reaction to cold that Chris predicted but also the first day Dave just can't get out of bed at all as he is so exhausted. At least he appears to sleep on and off.