1

(24 replies, posted in Introductions!)

Dear Nikole
I am so happy you found this site.  You will get a lot of great advice and direction, and I know there are a lot of resources in your area.  I am sure someone will weigh in soon with recommendations and referrals.
The one thing I learned early on - and I know everyone will tell you- is to get a 2nd, 3rd, even 4th opinion until you feel comfortable with what you are hearing.
You will learn a lot, more than you ever imagined, about this horrible disease, but with knowledge will come understanding and power to make informed decisions.
Good luck and know we are all with you.
Sandy

2

(11 replies, posted in General Discussion)

Thanks so much Marion!
You have no idea, you are such a source of comfort - it is so easy to second guess every little thing.  All I want to do is make my hero comfortable and feeling better!

3

(11 replies, posted in General Discussion)

Thanks so much Marion!
Yes the Trial is in pill form - he takes 3 -200mg tablets twice a day
(a real pleasure compared to the AGiOS one where he had to take 24 pills each time because they were at an advanced dosing stage but the size of the pills hadn't caught up yet with the larger doses).
So far no side effects other than being very very tired but they cautioned us to expect that on all the trials
No new side effects fortunately to speak of.
He takes Dilaudid when he has Tumor pain (with a Compazine chaser as the D brings on nausea) and that seems to do the trick.
The biggest discomfort the last month or so has been the Ascites - the belly seems to be filling up less after he was drained the second time.  It is his feet, ankle and legs swelling the last few days that are giving him the greatest discomfort.
Anyone know what can help here?  They have him on diuretics and of course we are cutting out all salt wherever we can.

4

(11 replies, posted in General Discussion)

Dear Melinda - Thanks so much for the great wishes and the positive juju as Lainy would say :-) !
I will definitely scour the list of Trials you sent to investigate - I am a big believer there is always something and you just have to look to find it!
Dear Kingston - much of your journey sounds very much like our own - the FUDR immediately seemed to reduce the size of the main liver tumor significantly, and then kept in check until it didn't.  I can't help wondering whether we got off it prematurely, or should have returned to it after the Agios trial was unsuccessful.  But the consensus was that because of the extensive spread of tumors everywhere, we needed a different approach.
My thoughts are with you and I wish you the greatest success.
Dave was accepted into the CB-839 trial and started Friday.  He has had 5 doses so far so we are keeping toes, fingers everything we have crossed. 
Thanks all as always for your kind wishes, support, help, prayers and for the love you share with all the family members.

5

(14 replies, posted in General Discussion)

Duke-
Have they identified your specific mutation?  Appears that is what dictates which trials you are eligible for.
In no particular order, but for what it is worth:
Dave was on the Agios AG-120 which is already in advanced phase - specifically for the IDH1 mutation.
Merck has Keytruda in Trial - targeted at other mutations.
We are going into CB-839 - pretesting being finalized tomorrow - that is not specifically for Liver  tumors but solid tumors that also have the IDH1 markers.
There is a major study underway at NIH that may merit your looking into.
Good luck!!!!

6

(3 replies, posted in Introductions!)

Dear Daisy - Dr Schwartz was the first doctor we consulted with back when my husband Dave was first diagnosed.  He is a wonderful man and made us feel very comfortable, but gave us no hope.  He felt strongly he could not attempt surgery nor a resection and immediately recommended Chemo options, primarily Dr Holcombe also at Sinai who he works closely with.
We wound up going to MSKCC for a much  more aggressive approach.  He disagreed strongly with our decision,  and strongly advised against our choice, but continued to make himself very available to discuss the decision we made.   I can't help but think if we had stayed there Dave would only have had the 3 months he estimated.
It's been almost 2 years so I am not sure how his approach has changed - we just felt he offered very limited resources compared to MSKCC.
As everyone here will always tell you,  make sure you get a 2nd and even 3rd opinion.
At the end of the day, your friend  needs to go where she feels most comfortable.

7

(11 replies, posted in General Discussion)

Thanks so much Lainy!  You are the best and you always bring such positive energy!
Keep those prayers and cheers coming.

8

(11 replies, posted in General Discussion)

Hi All-  I haven't posted in a long while - but I read everything on this site every day - sometimes it makes me scared, sometimes angry - but lots of times it does give me hope - and it always fills me with wonder at the compassion, caring and love you all share.
My husband Dave was first diagnosed with CC in May of 2013 and what  a "long, strange trip it's been".
After multiple opinions, we settled in on MSKCC (Memorial Sloan Kettering).
From when we first found the tumor in his liver, to when surgery was scheduled, the tumor grew from 9 1/2 cms to 14 cms.
Dr Fong operated but determined that a resection was not possible, due to several satellite tumors - he determined there was not sufficient good liver to regenerate.   He burnt off as many of the satellites as he could.  At the same time, he also implanted an intra-hepatic pump which would be used to administer Chemo (FUDR) directly to the liver.
We then met with the Oncologist, (July 2013), Dr. Kemeny who would be administering the FUDR into the pump while also administering systemic chemo, Gem/Oxy every two weeks. Dave tolerated the Chemo treatments very well and experienced minimal side effects.
They always told us a time might come where the Chemo would stop working.
After losing 35 pounds over the first few months, and barely getting out of bed due to being so tired and short of breath, all of a sudden it was like a switch had been flipped and Dave came back to life,  for the most part pain free and energetic.  And the weight came back along with his appetite.
Dave remained on the regimen until December 2013 when they found that the cancer had spread to his left lung (very minute) and ribs -  the pain was excruciating as it had penetrated the bones -
He had surgery Christmas Eve (also the eve of his birthday) - they removed ribs 5,6 and 7 and put in mesh to protect the now exposed chest cavity.  They also cut some of the lung to insure there was no spread from the bones.  The recovery was very painful but the relief of getting rid of the ribs provided enormous - going forward they added Exgeva to the regular treatments to protect the bones.
2014 started off so much better - After all the pain, exhaustion, shortness of breath, Dave really enjoyed a quality of life
After about 9 months of the Gem/Oxy cocktail, neuropathy began to set in so the Oxy was replaced by Teecan (Irinotecan).

In November 2014 after 17 straight months of Chemo every other week, our Onc, , Dr. Kemeny determined based on a CT Scan that the Chemo was no longer working - the spread to the Abdomen had become extensive, and the 2 newest Liver lesions had doubled in size.  The original liver tumor which had been reduced dramatically in size and then dormant, had begun to increase in size again.
The tumors in each lung remained unchanged and very small.
At this point we began to review the results from the Gene testing done earlier in the year to explore the availability of Clinical Trials.
Our Onc determined that the Agios AG-120 trial was a strong option, as it was targeted at IDH1 mutations, the exact one that the testing had identified.  IDH1 mutations appear to be present in about 35% of CC patients, and particularly present in Patients with longer survival rates,
Unfortunately we had to wait a minimum of 3 weeks from treatment to even be considered for any Clinical Trials so Dr Kemeny suggested we cease treatments immediately in order to be ready should a  spot become available.  Unfortunately MSKCC did not get the spot they anticipated getting in December, but January 2015 we were informed a spot had become available and it was Dave's!!!
We couldn't have been more excited as this Trial seemed so promising for Dave's particular mutation.
We started on February 1st.  As per the trial guidelines, we reviewed CT scans and bloods on the 56th day - unfortunately the liver tumors had continued to grow and Dave was feeling considerably weaker, and very short of breath.  So the decision was made to take him off the trial.
We revisited the possibility of putting Dave back on chemo, but the Onc was concerned that might preclude Dave from being considered or eligible for any other trials.
Today we met with another Doctor and his team who was also running a trial : a Glutaminase Inhibitor CB-839 targeted at Patients with advanced Solid Tumors.
We are awaiting confirmation Dave is eligible based on recent PET scans, biopsies and bloods.
If accepted, we begin next week. 
What else should we be considering?

9

(7 replies, posted in Members' Cafe)

Congratulations Kris!  What a milestone - you are a HERO
Keep it up

10

(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.

12

(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

13

(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

17

(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!

18

(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!!

20

(45 replies, posted in Introductions!)

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

21

(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!

22

(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.

23

(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

24

(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!

25

(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!!