February 25, 2016 at 12:16 am #91647mbachiniModerator
I always tell people to give NIH a call. A phone call never hurts anything and they can tell you what is all available in regards to trials. Unfortunately, for the trial I am in, you do have to fail first line of chemo, and having an internal stent in place disqualifies you from the trial as well because the risk of infection is so high when your immune system is depleted prior to cell infusion. Here is the link to the trial, plus the new addition of pembrolizumab, and pembrolizumab alone. I still recommend calling to find out more information and if anything has changed.
Best wishes to you! Sending hugs and prayers your way!
MelindaFebruary 21, 2016 at 8:01 am #91646marionsModerator
David….although presently receiving chemo, I don’t see any reason for not inquiring about enrollment in Melinda’s study.
Not sure whether you have had a chance to look and listen to our recorded conference sessions.
Dr. Iyer presented a great overview of bile duct cancer, including explanation of stents.
You can find it here: https://www.youtube.com/watch?v=2jygol1_UXM
I hope others will chime in and share their thoughts as well.
MarionFebruary 21, 2016 at 6:03 am #91645lainyMember
David, the good news is that there are still lots of options. It is really so very true that a surgeon does not know what he is going to find until he ventures in and looks around. Never count surgery out down the road. If an internal drain begins to cause pain it usually is because they dislodged. Easy fix so to speak…..new stents. There are others who went on after an aborted surgery and down the road did get their transplant. Hang in, hang on and keep up the good fight there could be help right around the corner!February 21, 2016 at 5:03 am #91644
Thanks, everyone. I do have a port, middlesister1. I’ve grown to love that thing for labs and my first round of chemo.
I still don’t have a really clear understanding of why they had to abort my 2nd surgery, which was a resection attempt. I wonder if there’s a possibility that could be retried in the future.
What really sucked was that my surgeon had been so confident that there had been no spread of the cancer in the year I’ve had this diagnosis. I don’t blame him – you can only see some of these things when you’re in there poking around.
I’m a fighter, and I think my oncologist is very open minded and determined too. I have had experience with surgeons and oncologists who basically told me it was over and to get chemo and hope for the best, and I’ve had the great team I have now who have been in there right with me fighting all this time.
Was just reading about the T-Cell therapy – hard to miss since it’s all over FB these days, and just read Melinda Bachini’s Caring Bridge site. Not sure of the chances of getting on that, but I’m hopeful about the chemo study going on here at UCH, where I’m already receiving treatment. My onc appointment is Monday. We have a lot to discuss…
BTW, anyone have a metal internal stent, and do they have pain from it? The first thing we discussed is getting rid of these darn tubes I’ve had hanging out of me for a year. I did have a plastic stent for about a week and it seemed painful at the time. But… that was before a year of constant abdominal pain, so maybe I am just very sensitive there.February 15, 2016 at 7:34 pm #91643gavinModerator
Sorry to hear this latest news from you and as well for everything that you had to go through as well. Hoping that you will get some much better news from the onc and please let us know how that goes as well.
My best to you,
GavinFebruary 15, 2016 at 11:37 am #91642middlesister1Moderator
Very sorry to hear to results and what you went through, but hoping the next path is successful. With the IV troubles, have they offered a port? If your next line of treatment is chemo, it’s something you might want to consider. Even with Mom in remission, there’s still blood and scans every 3 months, so the port is still a big relief for her to have. Unfortunately the chemo damages veins, so in hind sight we wish Mom had her port put in much sooner.
CatherineFebruary 15, 2016 at 10:23 am #91641marionsModerator
dmr…….this cancer is resilient, but so are you. In the quest of searching out the next treatment I wonder whether molecular testing had been conducted?
Hugs and strength to you,
MarionFebruary 15, 2016 at 4:54 am #91640lainyMember
Oh, David, I am so very sorry what you have gone through! We have had quite a few members who have been through “krap” but then brought the tumors down enough to actually proceed with surgery. The good news is that you still have options to try and you never know how things can proceed in an upward direction. I hope you are feeling better and as usual please keep us updated on your progress. Wishing you the best!February 15, 2016 at 4:44 am #91639kvollandMember
So sorry, sounds like you have gone through a lot. And sorry about the transplant but I think it is so great that your wife was such a great match. I wonder what the odds are of that.
I can understand about the drain too. They pulled my husband drain as we were walking out the door at discharge. By the time we got home it had drained through everything absorbing in the car. I ended up having to place a urostomy bag (similar to a colostomy bag) and he wore that for a almost two weeks afterwards….at one point it was draining a liter a day. I called the surgeon and he said Oops! We must have pulled the drain too soon. Must have been plugged instead of done. Haha was all I could think.
The other thing I can add is lots of protein…..helps with healing but also with keeping the clear part of the blood in the blood stream.
KrisVFebruary 15, 2016 at 1:40 am #91638
I really had a hard time with this surgery. I had no end of trouble with IVs – burning pain, veins retreating, blowing up, IVs being moved. Had my usual trouble with my heart rate being high (due to a now known issue) and blood pressure low. Had to have two infusions of blood and lots of ascites – had to have a drain bag put on to replace the bulb they had in my abdomen, and it was filling up several times per day. The blood infusion seemed to help slow it and I got out of the hospital and back on diuretics.
I can’t say I’m sorry to be done with surgeries! Just wish one could have been successful.February 15, 2016 at 1:35 am #12195
I was due for a live donor transplant on 1/26. My wife was a perfect match and sailed through the donor approval process.
Unfortunately, they found a small tumor in my abdomen, outside the liver. They removed it and stitched me back up.
That pretty much exhausts surgical options for me. It was my 3rd attempt at some kind of a resection since being officially diagnosed in January of 2014.
So, it’s back to the oncologist to look at chemo options. My oncologist here at University of Colorado Hospital is supposed to be very up on the latest studies, research, etc. My surgeon is still working closely with me and him to try to facilitate anything he can help with. There is a study of a new mix of chemo meds that I started looking into when I first came out here that is supposed to be having very good results with bile duct tumors. It was recommended by my oncologist at Cancer Treatment Center in Atlanta. At the time, I had no doctor here in Colorado to refer me, but that’s not the case now.
My insurance (Anthem BCBS of CA) has shown a solid defiance to paying for any kind of advanced radiation treatment. I had to go with the most basic type of radiation available before this transplant attempt. Not sure if they are going to give me trouble on further chemo treatment.
On to the next chapter in this fight.
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