TAS-120
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Since doing the wash out period from this trial Rich has been having a hard time. Yesterday he went in to have the ascites drained from his stomach, they could only get 2 liters off because the tube kept getting clogged so they said we’ll be seeing you in a few days to try to get the rest. This fluid was very painful for him with his stomach so extended. I had noticed for like the last 4 to 5 days he seemed a little confused, after coming home from getting the ascites drained he was REALLY confused, talking like he was having a conversation with someone, acting like he was hammering something, dropping his glasses of milk and juice then he started to fall one time he hit the oven, the other he was standing up and just fell backwards hitting his head on our ceramic floor in the kitchen, that one left a huge goose egg on his head, he was up all night walking around talking. Took him to the ER today and they admitted him did a CT Scan and nothing wrong with his head from falling but, his ammonia levels where 3 times to high, I was thinking that might be the problem but, at times he was lucid so I thought he could be the morphine they just put him on.
He is so mad at me now for taking him to the ER. They have him in a bed with a alarm and will have a CNA sit in his room all night. Bad thing is tomorrow we were suppose to be going to Mayo for the new lung and liver biopsy and start the TAS102 trial. I’m not even sure he could go on the trial now because as of this morning his eyes and skin are yellow. He has lost like 50 pounds in the last 2 months, his collar bones are sticking out his legs look like toothpicks and his once muscular arms are smaller than our 11 year olds. He’s wasting away before our eyes.
So it gets me to wondering if he should even try another trial, as I look back over the last year and half with all the chemo and 2 clinical trials was it all worth it? Yes it gave us time together they said he had 3 months to live but, each one of these treatments had such horrible side effects for him that he was in pain most of the time and to weak to do the things he liked he spent most of that time drugged up to control the pain and slept a lot. Would it of been better to take no treatments and have a few great months than do them and feel like shit for a year and half? The doctor asked me tonight what our plans were going forward and I said the trial and he said there are doctors who will always have a treatment for you but when is enough-enough? Not sure what I’m gonna do about that statement part of me says I can’t stand to see him in pain anymore but another part says I can’t stand to lose him. He has said right from the beginning he will do whatever I want so, if I say to him it’s been “enough” isn’t that just saying I don’t want you anymore, I have no more hope for you? I think it’s gonna be a long week.
Hi Kim,
The news from Rich’s scans was not what you were hoping for, but it is positive he has been feeling well and that a new trial is lined up. Thank you also for the information about the additional genomic testing he is having – please let us know how that turns out.
The doctors’ concern that the new tumors may have different mutations than the earlier ones has implications for testing and treatment. There was discussion at the annual conference about how often the genomic testing should be repeated, and your posting highlights two of the factors for this question – the other one is that the tests themselves are evolving and over time are adding new mutations to look for.
I hope Rich’s washout period goes by quickly and easily.
Regards, Mary
Rich has been taken off this trial. Recent scans showed new growth in a vertebrae, lymph nodes around his heart and the lining of his stomach also some new ones in his lungs and on the liver, but the original tumors on his liver and in his lungs still shrunk. So his doctors at Mayo want him to start a new trial TAS102 after a 3 week wash-out period, but before he does this they want a biopsy of the new ones in his lungs and on the liver. They will send those to Tempus Labs he already had a liver tumor biopsy sent to Foundation One which found the FGFR mutation. The doctors said this lab(Tempus) test for more mutations and for new immunotherapy drugs than Foundation One does, also they will be testing new drugs on the tumor biopsy itself at their Mayo lab. Doctors are thinking maybe these new tumors have a different mutation than the FGFR since the original tumors still shrunk and these grew.
I am worried about the lung biopsy because people have said it hurt a lot, he’s never a had one before because the tumors he’s had before were too small to biopsy but these new ones are big enough.
These scans results came as a shock to us he has been feeling good even working in his shop restoring a car for our son to have when he turns 16. Hoping the next 3 weeks aren’t hard on him, whenever he’s not on a treatment he gets so sick and in so much pain quickly that I worry by the time the 3 weeks are up he’ll be in no shape to start a new trial.
Rich is back on the trial now after his week break. They reduced the drug to 16mg from 20mg. The bone pain and his hands are better and all labs today came back fine. The only thing is he lost 16 pounds in just a week, the Dr said some of it could have been water weight. He says food doesn’t taste right, either too salty, or like vinegar, I made him a chocolate malt and he said that tasted like dirt. This is the first time he has ever lost weight, he didn’t on the other trial or even while he was chemo, so it’s got me worried that something else might be going on. Will have to look into the recipe books this weekend to find something he’ll eat. Hope everyone has a good weekend and Happy Mother’s Day to all the moms out there!
Hi-
Very happy to hear that the bone pain was not a symptom of spreading ( but hope they get all pain under control). I hope with spring here, it is the start of not only great weather ( keep 90 degrees away for a bit), but that Rich responds well to treatments and you can savor the season.
Take care,
Catherine
Thanks Mary for the idea about the numbing cream will give it a try.
They said the bone pain is coming from the phos levels being so high, he had a scan so we do know for sure that nothing has gone to the bones and that was a relief. Hoping this break will get everything settled down and he can start again!
Not sure I would be liking that 90 degree weather!
Hi Kim,
I hope the break gives Rich relief from the side effects.
When my hand-foot syndrome got really bad, I found some relief using the lidocaine numbing cream I had been given for my port on the sore areas. I also put those donut-shaped corn pads on every single sore spot on the soles of my feet, and there were lots. Of all the side effects encountered, for me the hand-foot one was the most discouraging, so I really feel for the discomfort Rich is experiencing. Not fun. On the more positive side, it did go away quickly for me when the chemo was stopped and during one chemo break I had – hopefully it will ease up during the break.
Do you know what the cause of the bone pain is?
Spring weather was a long time in coming this year. Where I live, we seem to have gone straight into summer. We were still having nighttime freezes, then suddenly now three days of 90-degree weather. Gardening sounds lovely.
Regards, Mary
Rich went to Mayo again today for his check-up and they have put him on a 1 week break. His phos levels, creatine and alk phosphatase are way to high. They said after the week break if everything is back to normal they will reduce the drug from 20mg to 16mg.
He is in so much pain now with a lot of bone pain and the hand and foot syndrome has gotten so much worse. He’s been using all sorts of creams and wearing socks and gloves to bed with the creams on but, nothing seems to get ahead of it, his finger tips look as if they have been burnt off and very painful.
They also talked to him about how much muscle mass he has lost, he says everything tastes too salty or sour. Doesn’t want to eat anymore, has a few mouth sores but the Drs think with the dose reduction they should go away quickly. Wish I could find something that really tastes good to him, hard to make meals for someone who has no interest in eating and I’m a good cook (or that’s what he’s told me the last 35 years of marriage) all the foods he’s liked before now make his stomach turn.
At least spring is finally here and we can start planting our garden maybe home grown fresh veggies will entice his appetite.
Hi Kim,
What wonderful news that Rich is responding well to the TAS-120 trial. I hope the pain meds bring his joint pain under control and fingers crossed the next scan brings more good news.
Where I live, spring is arriving late and we had our first warm day today. I am so done with cold weather this year, so I hope your upcoming April snow storm does not stray this way!
Take care, regards, Mary
Rich had his first scan since starting this trial on 3-1-18, the scan came back with great results-tumors on the liver and in the lungs have all shrunk! Once again he is having the same side effects as he did on the INCB trial-a lot of joint pain and hand and foot syndrome. His doctor gave him some pain meds for the joint pain and said hopefully as the trial continues and his body gets used to the drug maybe some of this joint pain will go away. He didn’t want to do a dose reduction yet until his next scan and then maybe he’ll be down to the 16mg instead of the 20mg. So far so good considering his other doctor gave him 3 months and it’s been 16 months since being diagnosed-boy it’s been a long and busy 16 months!!! Hope everyone else is doing well on their treatments! Have a good weekend- we are expecting snow again here this weekend- can’t wait for spring to really be here, I think the sunshine and warm weather will do us all good.
Hi Kim,
I hope the start-up of Rich’s new clinical trial with TAS-120 is going smoothly and that he enjoys positive outcomes.
Regards, Mary
Rich has started the TAS-120 trial on 3-01-18. He takes 5-4mg pills for a total of 20 mg each day. So far nothing to report on any side effects I believe to early for that to happen. The last month has been really hard on him with it being the “wash out” period for the INCB054828 trial. He has had a lot of nausea and vomiting. This is the first time with the vomiting he never had that even while on chemo. He’s lost about 25 pounds in the last month because of loss of appetite and the nausea, thank goodness he had a little extra weight on him so the weight lost hasn’t been to much of a issue as long as that doesn’t continue. The scan he had at Mayo before being put on this trial did show again some growth in all the tumors in the last month while not being on any treatment, so with the growth while on the INCB trial and last month’s his tumors are all bigger than when he was first diagnosed in Dec 2017. Praying this trial will work and he will be given more time to spend with me and our son.
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