sandynyc
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Thank you all for all the kind wishes and thoughts.
You were ALL my family – so many of the questions he and I were unable to talk about for fear that the other one would think we were giving up – I could ask here, and find answers on this site.
Thought I would share a picture we posted at his Celebration last week – taken at our last family holiday together.
Daddy Bear we love you and miss you and wish you were here..
Dear Kris
I am so sorry to hear about Mark’s passing. I have followed your fight with such respect and admiration for all you did and the love you shared.
Dave passed just earlier this week – I know that the emotions are overwhelming, the feeling of loss devastating.
Today would have been our 29th Anniversary – I WILL raise a toast to Mark at 3PM and celebrate his life along with everyone else on this site.
Sending love and hugs
SandyDear 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.
SandyThanks 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!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.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.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!!!!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.Thanks so much Lainy! You are the best and you always bring such positive energy!
Keep those prayers and cheers coming.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.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
SandyHi 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
SandyGreat 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.
