dukenukem
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https://clinicaltrials.gov/ct2/show/NCT01237236
https://clinicaltrials.gov/ct2/show/study/NCT02187783?show_locs=Y#locn
Phase 2
This is an experiment with a study drug. I’m an engineer – you’ve got me hooked.
Don’t look for me on YouTube dancing – ain’t gonna happen.
Duke
Based on my experience, one reason I can see to go right to a trial is that there is some requirement (like platelets >100,000) that you might not meet in a few months or some exclusion that you might meet that would rule out the trial. There were some trials I was eligible for in September that I am no longer eligible for because of low platelets.
Duke
From the ICPR studies, 18 of the 177 responders checked that they had been exposed to asbestos either at home at at work. This is old data so there may be more data available now.
Duke
What a difference a day and a different doctor make.
Yesterday went to my local center for FOLFOX treatment. Met with the doctor and she said the radiologist evaluated the scan from last Friday and determined that the FOLFOX was not working (larger and more numerous tumors and possible met to the spleen. She was stopping the FOLFOX treatment and sending me to the Cleveland Clinic for further treatment. She also said I could stop all treatments and just be content with being comfortable. Not something to inspire hope and confidence in a patient.
Anyway, the onc I saw at the Cleveland Clinic is on vacation so I got an appointment today with Dr. Estfan. He and a radiologist reviewed the CT scan from last Friday and compared it with the scan from the end of November. They had a totally different read on it. There was some growth but it was less than 10% which is considered stable. His recommendation was to continue with FOLFOX for four more rounds, get another scan, and re-evaluate options. He was going to have the scans reviewed by others and then contact my Mentor onc with a recommendation to continue FOLFOX in Mentor.
Interestingly, I got a call from my Mentor onc this morning. She had just gotten word that University Hospitals in Cleveland had approved a clinical trial for LEE011 which was opening next week. Dr. Sohal already was conducting this trial at the Cleveland Clinic since last August. It was Option E on my list.
So put away the long faces for now and join me in a happy dance!
Duke
No experience, but an opinion.
If he qualifies for the trial, go for it. If he goes to second line chemo (FOLFOX?) he may get to a point where he no longer qualifies (maybe due to low platelets). I originally thought that trials were the last resort, but there are many people here who had great results from trials. Plus, in some cases, certain chemos rule out some trials.
Do you have genomic testing results to support going for the FGFR trial or is it based on something else?
I assume they ruled out another resection.
Duke
Lorraine and Donnie-
I second what Lainy said.
Also, it has been my unfortunate (and hopefully atypical) experience that some doctors have huge egos that prevent them from acknowledging that someone else may know more or be able to provide better treatment for the patient.
Keep on doing what you are doing.
Duke
Kathy –
I understand how you feel about telling family members. I can (most of the time) handle my feelings. But it’s so hard making your loved ones know that it is OK, no matter what happens. But they are adults and need to know so they can best support you. Some will accept this better than others. That’s life.As Lainy said, you are doing all the right things. It’s easy to say but hard to do: Try to reduce your anxiety about the scan. Either way it turns out you have a plan on going forward.
Duke
If you want any more encouragement, go to “General Discussion” and look for “a year later and a second resection…” from pfox2100. Should be close to the top. That’s a success story for all of us.
Duke
I agree with everything that has been said, especially getting a second opinion immediately. (Not sure how close you are, but Johns Hopkins has a great reputation overall – not sure about treatment of CC or how close you are. Hopefully others will comment or you can use the Search function.) My current onc is very traditional in her line of treatments. (BTW, I was not eligible for surgery but went straight to chemo.) Do not confuse enthusiasm for experience. There is no substitute for an oncology team that is experienced with treating CC. Your onc seems a little “relaxed” about a subsequent treatment plan.
Why are you having two days of scans? CT takes less than an hour. Not sure about MRI.
Are your other blood numbers in band? Alkaline phosphatase, billirubin, creatinine, WBC, RBC, among others.
Survival 50-50? Horse pucky. From what I’ve read here, 50-50 seems more applicable to needing further resections, not survival.
One year? Even deeper hp. I’m still going on chemo 20 months after diagnosis. And there are members on this site who have had resections who are living even longer and stronger.
Kathy, give yourself a big hug and feel the support from all of us. Pick your head up and take control of your life.
Duke
A lot will depend on how “traditional” your onc is. I started with gem/cis but my onc went to gem/carbo after one treatment because she was worried about my potential hearing loss.
It seems that gem and a platin is the accepted first line chemo treatment. You might be hard-pressed to find an onc who will go against that right out of the gate. looking back I would recommend getting genetic testing as soon as possible if for no other reason than to find out what you are fighting and to look for trials. Then it depends on your onc as to how he/she feels about trials. Some seem to view it as as last ditch effort without hope for long term success and might not support it until all other efforts have failed. Also, some trials seem to require some indication that chemo is no longer working. But, having identified potential trials, you can keep an eye out for things that are under your control that might otherwise exclude you from a particular trial. For me, many require a platelet count above 100,000. Haven’t seen that in a long time. Knowing what these exclusions are might make you go for a trial earlier than later.
Once you get past the platins, there seems to be little agreement about what the “right” thing to do is. Some oncs seem to have their own preferred secondary treatment plans. This is where second and third opinions can help or possibly add more confusion to the issue. My potential replacement onc has rejected opinions from the Mayo Clinic and MDA. “They are not supported by hard evidence.” My guess is that his is not either, other than his own experience. Add to that that individuals respond differently. And it certainly depends on where you are starting – I was initially diagnosed as Stage IV with mets to the liver, lungs, and distant lymph nodes. My options were limited.
Sometimes I think it’s all a crap shoot and I’d get better odds in Vegas. But that’s my dark side speaking.
Make an informed decision and go with it and don’t look back.
Duke
