Back again…
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Trevor,
Hello from a former Jax, FL resident! Lived there in the Mandarin area off of Scott Mill and Beauclerc from ’95 thru ’05 and both of my kids were born there too!Regarding Dr. Javle, as you may have read in some of my posts as well as Kris’s, I emailed Dr. Javle out of the blue and was very clear/concise in my situation and he literally emailed me at 11:30 pm about an hour after I sent the email. I hear he has done this with several other people as well. He is a doctor that truly cares, that’s for sure. Wish you luck, and go on that trip and have fun!
Thank you everyone for their support. Yes I have bought travel insurance, never go overseas without it.
I met with my nurse practitioner yesterday. She said my doc wanted to explore two possible trials for treatment. They have to first determine if I’m eligible or not. I don’t know how I feel about this path (by the time I get back from my trip it will be a month since I last had chemo, I was unable to receive treatment yesterday, body was too weak).
Having said that, I have read that people have contacted Dr. Javle in MD Anderson and heard nothing but good things about him. If I emailed him, would he be open to hearing my case?
I had tried scheduling an appt at MD Anderson and they said they would only see me for a 2nd opinion when my scans starting showing disease progression…
Thanks everyone!
Trevor…I can only agree with Kris and Percy. A few things to consider though;
Do you have medical coverage for out of country emergencies?
Travelers insurance: if so offered, consider activating it.
Take along medical records on a disk. (at least the latest developments and basic history.)
Enzymes for digestion (just in case.)
And most of all – have fun.
Hugs,
MarionHi,Trevor,
I totally agree with Kris. get the pill;go to Europe;enjoy what you can;send me a post card with your bike or car with the Alps on the background, some green grass in the foreground(like the Trevor I saw on that Mayo magazine).
Do not worry, God has a plan for everybody, enrich your life ,help people along your way, and enjoy the best that God gives to you –what a beautiful world He created.
See you in a month and keep in touch.do not forget email me the picture I wanted from you.
God bless.Trevor:
As far as the CA 19-9, I have noticed that mine occasionally goes up and down. Unfortunately, mine has been steadily rising the last couple of months and it turns out the tumor has grown a bit and lymph nodes are now affected.
I just started on Xeloda by pill form. I do not know how good it works yet, and won’t have another scan for at least 4 weeks, but it is easy and maybe you can ask your onc about it? It’s expensive, with very high copays, but Genentech will help if you are not on state funded insurance and if you make less than $100K/yr. I am suggesting this because maybe you can do both: get the Xeloda in pill form and go on your trip. Of course, if you have side effects, you would have a problem, but it might be a win-win.
I hope you get to go on your trip, athough I can understand your concern about not receiving treatment for so long. Whatever decision you make will be the one for you.Hey Marion,
As my tumor markers have increased I have become increasingly fatigued. Very little energy. I meet with my oncologist tomorrow. I don’t know if my body could withstand another chemo treatment.
Having said that, I am supposed to go to Europe next week. Here is my dilemma. Should I go and risk not having treatment for a month (it will be a month by the time I get back)? Would it make much of a difference?? Or should I stay and invariably receive treatment next week??
I had scans done last Thursday. Things were stable despite the hike in the CA 19 9.
Thanks again guys.
Trevor
Trevor…..we have seen tumor markers rise and then go down again with the next treatment. When is your appointment with the oncologist?
Hugs,
MarionHey everyone,
I had scans and blood work today which I am somewhat confused by. My tumor markers are up to 1,600, yet my scans remain stable, no new growth in my omentum/peritoneum. Should I take this as good news?
The tumor cells are obviously developing resistance to the GemOx. Not sure what next steps will be. Switching up treatment-but to what?? Second opinion??
Thank you to everyone for their support!
Hi Trevor,
I received your email earlier today and thought I would reply here for future reference. I do believe my Ben’s case is similar to yours – stage IV with mets to the surrounding lymph nodes and Omentum. He was diagnosed on 8/30/2010, underwent chemo from November 2010 until April 1st, 2011. (Gem/Cis standard protocol – made it through all 8 cycles with very little side effects).
Some additional growth in October caused blockage (and some surgery) along with some additional pain in December. Ben restarted the same Gem/CIS protocol in January. In the beginning he had some nausea (which he hadn’t had before), but after the first couple of rounds that’s no longer an issue. At this point he is halfway through the 8 cycle regimen. He definitely gets fatigued but so far is exhibiting no other side effects (hair loss isn’t as bad as last time), although chemo brain is lurking around.
As for what to do after the primary protocols become ineffective, it does seem that it’s still kind of a guessing game. Ben and I were at MD Anderson last week and they stated that once the standard protocol is done – they potentially recommend oral Xeoleda or possibly Tarceva. Apparently MD tracks CC closely with pancreatic cancer – they told us that they are finding that there are certain people with a certain genetic mutation that seem to respond well to Tarceva (at least for pancreatic) so they were exploring that for CC. They are going to do some tests on Ben’s tumor to see if it’s favorable in that direction – however, they recommended he continues with the GEM/CIS since he is responding so well – and Tarceva was just an option for when this regimen is over.
That’s all I have to add for now, feel free to email or reply with any additional questions (email is sometimes faster because I don’t come out here everyday…or sometimes weeks – but I will definitely respond to email).
tom
Hi,Trevor,
To response to your email also,( the 2nd one today) ,please check under the chemotherapy experience forum here title” Systemic chemotherapy for cholangiocarcinoma”
You will see about half way down the newer regimens used for this CCA including Avastin. remember there are NO FDA approved standard regimen established for treating CCA,including the reference standard of Gem/CIS or GEMOX . So your oncologist may be right if he just base on his/her institutional approved general guidelines to treat CCA instead of using what other clinical trial regimens such are mentioned in the experience forum that I put on this web site.
If you are still under Chemotherapy treatment at Mayo,it seems to me( just my observation for a day there ) ,they are not that enthusiastic in using newer targeted therapy or in clinical trials as compare to other institutions ; Mayo is in my mind a bit conservative on this front.
Email me again if you have question after reading the current regimens.
God bless.Trevor…unfortunately it is the case for many drugs that at one point they become ineffective. We have seen at times for the older agents to be re-used or, a combo of drugs including one or two of the previously effective agents may be applied. I don’t believe that all options have been exhausted. You are young – you are strong and you are ready to fight again.
I am hoping for others to chime in and enlighten us also.
Hang in there, Trevor.
Hugs are coming your way,
MarionYou’re right Marion about the maximum benefit of GEMOX. Now that I had a good yell and cry, I can deal with the next step, finding an effective chemo. I’m reaching out to you guys, what other treatments have been successful? When GEMOX or Cisplain/Gem have stopped working?? Have there been effective outcomes from the treatment?
We don’t think about feeling bad when we feel good. I’m just so overwhelmed right now. I feel like I have exhausted all my treatment options. I don’t know what else can be done. Sorry for the defeatist attitude, its just that when things stop working so suddenly, I feel lost.
Please help.
Trevor
Trevor….appears that you have reached maximum benefit with the GEMOX treatment. Another type of chemotherapy of which there are several will most likely be chosen. Let’s see what your doctor recommends and what others have been successful with.
Hang in there, we call it the roller coaster ride.
Hugs
MarionSo I think I found out the problem. Come to find out, my tumor markers jumped from 117 on March 12th to 789 on March 27th. This would explain the nausea I think. I am due for scans next week. Anyone know of any alternatives to GemOx? My tumor markers were stable for 5 months or so. I am being treated at Mayo in Jacksonville.
Bad news is never nice.
Thanks.
Trevor
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