TAS 120 Clinical Trial
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bgeo…. Stable disease with relatively few side effect makes for excellent news. Most importantly, you have outlived the grim predictions of your life expectancy with fairly good quality of life. The fact that other treatments are available to you (if, and when needed) should give you a sense of relief and empowerment and resemble that of living with a chronic disease.
I attached a link to the trial you are participating in:
https://targetedcancercare.massgeneral.org/My-Trial-Guide/Clinical-Trial/NCT02052778.aspx?context=/My-Trial-Guide/Genes/FGFR1Phase I trials are designed to establish toxicity levels by identifying the the optimal dose needed for effective drug response (efficacy) and patient’s tolerance to the drug. Phase I trials are intense, require significant time commitment and as noted by you, often require drug escalation or drug reduction. You seem to be handling this very well and I congratulate you for that.
I think it’s important for people to remember that when participating in a research study, their voices must be heard. After all, science applied to humans must integrate the patient’s input.
Although you are asked to respond to questions posed by the physicians, know that some points not necessarily fit your response. And, this is where you come in. For example: In comparison to yesterday you have a fair amount of energy, but how exactly did you feel the day before? If you are up to it, try to have a note pad and record each and every symptom experienced and integrate this information in the discussion with the nurse and/or physician. Ultimately, you are to benefit from this study and this is one way to assure that your needs are met.
Again, congratulations on doing so well and thank you so much for sharing this invaluable information with us. Perhaps the other cholangiocarcinoma patient enrolled in this trial will join us in this discussion and help you feel less isolated while undergoing this treatment.
Hugs,
MarionDear Bea, this is pretty good news and I am sure that your wonderful attitude helps things along the journey. Wishing you the best of luck on the next Scan and thank you for the post on something that may soon be available to others. Please continue to keep us posted on your progress!
The good news is that I’m still on the TAS120 trial. I have been considered stable after CT scans every 6 weeks. There has been reduction in the size of my liver tumors and some of my lung nodules and some minor growth, thus, the stable status.
My mouth has improved and I’m able to eat more things that are low in phosphates. My latest challenge is fatigue. That too is getting better. I try to do a few things every day and that makes a world of difference. I do something and take and a rest and then do something else, etc. Some days I just rest and don’t do much more than make my breakfast and lunch. I believe there may be another person on this trial from Mass General now.
I have another scan next Tuesday. One concern is that my CA19-9 is increasing, yet the scans show shrinkage of tumors. So there is some uncertainty there.
Since I was told in May, 2014 that I only had about 1 year, it’s a wonderful thing to say that I continue to lead a pain free life. Although there are side effects from the trial drugs, I’m still able to do a lot of things, just in moderation. There are many things I can’t do, but I’d been doing those things for years and years and quite honestly, the break is nice.
My team at MGH already has two other trials in mind for me if and when this trial stops working for me, so I always have hope.I began this trial in December, 2015. It’s a Phase 1 trial for Multiple Myeloma and Solid Tumors with FGFR2 Abnormalities. It’s kind of scary being on a phase 1 trial, but I trust my team of doctors, etc. at Mass General in Boston. The team reviewed my cancer and felt this drug would be good for me. I have several FGFR2 mutations – not sure how to describe it, but it’ slide extensions of the FGFR2 mutuation. It’s been a roller coaster ride until recently. I’ve been off and on the drug since the beginning due to phosphate levels being too high. I’ve had the dosage lowered. Started at 24 mg, went to 16 mg and now I’m at 8 mg. Finally I’m on week 4 of taking this drug. Prior to this the longest I was on it was 2 weeks. My CA19-9 has been going up and down also. As of yesterday, it’s back on it’s way down, so feeling hopeful. It’ll be a couple of more weeks before I have a scan. Side effects are minimal. My mouth gets inflamed and tender, no sores. Some hair is growing and other hair is not! I feel more tired than when I was on the BGJ398 trial. My phosphates were up this week from last week’s, so I have to really watch my intake of phosphates which is difficult as they are in everything and because my mouth is sore, I can’t eat anything that is too spicy or acidic. I have to drink tons of water and take a ‘binder’ drug to help remove the phosphates from my system, but that pill ‘binds’ me up. So I take a prescription for that. I’m also on water pills to help my body eliminate phosphates. It’s a challenge to say the least, but I’m trying. There are only 10 people on this trial. I’m number 10 and I’m the only one at Mass General on this trial.
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