September 21, 2014 at 3:09 pm #84195lainyParticipant
Please, please get one more opinion, perhaps he needs a change in treatment. We always suggest this and then there will not be shoulda, coulda. What is the ONC recommending if you stop treatment? Hospice? Teddy was very fatigued at times and the ONC started shots of B12 once a month which really helped. Wishing you the best and please let us know what is happening.September 21, 2014 at 1:27 pm #84194
Dad had his CT a couple of weeks ago followed by a PET scan because they found a new spot. Turns out the disease has progressed so they’ve stopped treatment. Now his billiruben is 3.5 which is beyond the inclusion criteria anyways, and the GI can’t do any more stenting so I feel our treatment options are limited. Damn this is a frustrating experience. I feel so helpless, and wish I can do something to help my dad.
I’m going to call about NCT02178722 on Monday. Seems others have reported some success but I fear it too may have billiruben maximums of 2.0. For the record, the early results from MK-3475 which is the PD-1 therapy used in this new trial was mentioned as having mediocre results with the trial site in AZ (sample size this was based on was very low however, so it can’t be considered indicative).
As for dad… he’s sleeping all day, and is extremely fatigued.August 16, 2014 at 3:12 am #84193
I have not at this time heard of the results of the most recent treatments of the TIL trial, but I will see what I can find out. I do know that there is a cholangio patient who is due to have treatment in about a week. She had tumors resected from her liver and she tells me her cells are growing, of course her outcome will not be determined for at least 2-3 months from now. The treatment takes a month….and then first checkup a month after that, but truly they wait for the 2nd month checkup to consider it is working. I am praying so hard for success for her! I have asked her to share her experience with us on the board as well and I believe she will.
I also know of lady with colon cancer who is due to repeat the TIL treatment soon….with very promising outlook. It sounds like they were able to narrow done her t-cells with a good response to mutation as well.
Thanks for the info on your dad’s trial….positive thoughts coming his way! Keep us posted!
MelindaAugust 15, 2014 at 5:41 pm #84192
Thanks for that Cholango.August 15, 2014 at 3:26 pm #84191
Thanks…Just realized I didn’t answer Melinda’s question about the trial.
In terms of side affects, there’s the usual laundry list of gotchas but from what we’re told and from what my dad has gone through, they’re reversible. The only side effects dad has had is a rash around his nose and neck which is common for this treatment, and resolved with a little creme (he looks fine now). He’s had a bit of diarrhea but nothing major, so I’d say in 2 months of treatment he has had no other side effects. There is the fatigue factor but it’s not clear if this is the MEK or dad because he was fatigued before starting treatment too.August 15, 2014 at 5:48 am #84190
Thanks for the update on your dad, great news. Yes the clogging of stents is very common and more so with plastic ones over the metal ones. Plastic ones last around 3 months or so before clogging can happen and metal ones around a year. Glad to hear that your dads med team is on the ball here and got this sorted, and really happy as well that your dads trial is going so well. Fingers crossed that the good news continues for your dad and please keep us updated on everything.
My best to you and your dad,
GavinAugust 15, 2014 at 12:46 am #84189
Update – Dad was released from the hospital today. Turns out the cause of his delirium and fatigue was a clogged stent that sent his liver levels through the roof. Par for the course I’m told. A quick rotor rooter flush and plastic inner stent cleared things up (literally as his urine is now ultra clear). He now has his wits about him and is full of vim and vigor. Blood culture levels came back with no indication of UTI or any sort of infection, but they did test AFTER administering general antibiotics so they’re not sure if pre-admittance there was any sort of infection (not smart, I would have taken blood cultures before hand to know for sure).
So the take away for others interested in this trial from this one data point at least, is that the study drug is working, and this was not a related adverse event so he will continue to take it in a couple of days (A single 2 MG pill per day).
I noticed Melinda Bachini chimed in. Curious if you know of any other successful outcomes with the TIL NCT01174121 trial (or if anyone knows). I know it’s in Phase 2, but I’m so curious if Melinda is the only CC patient to have taken it that anyone knows of, and if not, what is the preliminary feedback.
BTW – Thanks to all for the well wishes.August 11, 2014 at 5:50 pm #84188
Here is a good explanation of sepsis from the Mayo Clinic…
Basically, a weakened immune system puts us at risk for an infection to turn into sepsis. I hope the antibiotics work quickly. Prayers to you both.
MelindaAugust 11, 2014 at 5:44 pm #84187marionsModerator
tango….from what we have seen, sepsis can arise from different sources some of which I believe are unknown however; on this site, the majority of incidences arise due to stent infections. Being that your Dad is in a Phase I trial testing a new drug or treatment in a small group of people for the first time to evaluate its safety, determine a safe dosage range, and identify side effects, his current condition may be related to just that.
You should receive an answer real soon.
Best of luck and please keep us posted.
MarionAugust 11, 2014 at 5:30 pm #84186lainyParticipant
So sorry to hear this. My husband used to get what they called “blood infections”. Fever could go up to 103o and chilled beyond belief. Very weak. I would call an ambulance right away and take him to ER. Every time they put him on an IV of Levaquin and by the next day he was like a different person again. They never called his Sepsis but his ONC said Levaquin will kill anything you have. Good luck.August 11, 2014 at 5:26 pm #84185
Set back today. It’s actually the 2nd time dad has a hard time getting up, foggy mind. Last time was a month ago. Turned out to be Sepsis (infection of the blood). Same symptoms today, on way to hospital.
If anyone has had or seen a blood infection before, and knows the cause (doctors are reluctant to give their opinion for whatever reason), it would be good to know. Could it be ammonia build up from a malfunctioning liver, the trial drug ? Don’t know but would be good to hear opinions. Hope this is not as bad as I think it is. Last time this happened they gave him anti-biotics and he was fine a day later.August 11, 2014 at 4:36 pm #84184kris00jParticipant
I agree, it’s a great name!
And I’m so happy to hear the word stable! I also hope you keep us informed on all aspects of this trial, from keeping your dad stable or better yet, shrinkage, to any side effects.
Yes, cc is extremely scary, but at least the hope for a cure or stability is growing every day. And I completely understand leaving one onc for another facility… I did it after 2 years. Kudos to you for being such a great advocate! Good luck to your dad. It sounds like you’re on a good track.August 11, 2014 at 3:59 pm #84183
It is a tango isn’t it? This dance we do! Love the name! I am so happy to hear the STABLE results from your father’s first scan! It is always so inspiring to hear some good news coming from some hopefully new treatments….could you elaborate a little more on the treatment? How is it given? Side effects?? and any other pertinent info….please keep us posted on his progress and thank you so much for the information.
MelindaAugust 10, 2014 at 5:04 am #84182
Thanks so much for the update on how your dad is doing with everything. That is very good to hear that he is stable right now on this trial and I hope for the good news to continue after his next scan on the 1st Sept. Please let us know how things go with that as well. It sounds to me like you are doing an excellent job in looking after your dad and thanks as well for your informative post, I know it will be of help to many. My fingers are crossed for your dad.
My best wishes to you both,
GavinAugust 10, 2014 at 12:13 am #84181marionsModerator
Cholangotango….I too would like to congratulate on the success with the trial and wish for all good things to continue. Given that you are such a strong advocate for this trial I would like to ask you to continue to report the progress to us, in this particular thread.
Keep up the good work and many good wishes are heading your way.
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