jscott
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Hi Dorien,
Best of luck to Kyle on his procedure next Tuesday. I know you have done your homework on this one, and it does seem like such a good option for liver cancer. It is not the right time to do this for Andrea, but I would not be surprised if she needs it later. My bet is many more patients will have this done in the future.
Please keep us updated on how it goes.
Jason
Hi Gavin,
I couldn’t get your link to work. I went to the website directly and found the press release. Here is the link…
looks just like yours! Oh well maybe it will work for someone.
EDIT — nope…mine doesn’t work either.
Jason
Mary,
I am incredibly saddened to read this. I have read your previous posts, and I know you are so kind and caring. This is so unfair! I truly admire your attitude and “grace under fire.” Gem/Cis has worked for many others, so hopefully it helps shrink your tumors as well. Stay strong and know that so many others are pulling for you. You are in my thoughts and prayers,
Jason
Hello everyone,
I can’t believe that I haven’t posted an update since before our trip to MD Anderson. I thought I would let everyone know what we have learned, and how things are going.
Here is a little background on the situation as of October — Andrea was getting treated at Stanford, and had been doing well on her Gem/Cis treatments. However, we were well aware of the fact that Gem/Cis usually gets either ineffective or too hard to endure. We decided that during Gem/Cis cycles 7/8/9, we would get 2nd/3rd/4th opinions on what would be a good next treatment for Andrea.
Our first visit was to UCLA, which I think I already described. Next up was MD Anderson. Wow, that place is huge! Two tips if you decide to go to MD Anderson. First, be sure to use their online web application. This is how we found out the timing of our appointments. Second, if you have a port, don’t be surprised if they refuse to use it. They would not use Andrea’s port for her CT scan even though we had all of the documentation for what type of port it was and where it was. Their policy is that if they did not put in the port they will not use it without a chest x-ray!
Anyway, I think the standard MDACC review includes a meeting with the surgeon (Dr. Vauthey), and a meeting with Dr. Javle. We first met with Dr. Vauthey. We were not surprised at all to hear that Andrea was not, and probably would never be, a candidate for surgery. We have a long list of surgeons with that opinion! We next met with Dr. Javle. We found out from Dr. Javle that the CT scan indicated stable disease since the prior scan. We were hoping for shrinkage, but thankful for stable. Dr. Javle said that in his experience with stable disease, two approaches have been effective at prolonging the time to progression: radiation or Tarceva.
Dr. Javle’s recommendation was to:
1. Get a PT scan to get a baseline for current cancer activity.
2. Continue on Gem/Cis for 3 more cycles (12 total)
3. Come back to MDACC in January and get a PT/CT scan.
4. Assuming the January scan confirmed stable disease, pursue either radiation or TarcevaI believe the type of radiation would either be proton beam or IMRT depending on an analysis of the collateral radiation (the involvement of the duodenal seemed key here??)
We next met with Dr. Kelley at UCSF. Dr. Kelley recommended continued Gem/Cis for 3 more cycles, and then to use IMRT radiation treatment on the primary tumor location. Given this is the biggest tumor and given the central location, Dr. Kelley thought this would be the area that would cause problems down the road. Hitting it with radiation while it was smaller and well-contained will hopefully extend the amount of time Andrea is stable. Dr. Kelley also suggested Xeloda during the IMRT treatment, and then continuing on Xeloda as a maintenance drug. Xeloda apparently makes the tumor cells more radiation sensitive.
We have decided to continue on Gem/Cis at Stanford until January, and then switch to UCSF and do IMRT + Xeloda. We have found a good match with Dr. Kelley and feel great about the plan (although still apprehensive about new chemo and new radiation treatment).
Andrea also got a PT/CT scan at UCSF to get a new baseline. Fantastic news…the CT part indicated additional shrinkage! The PT part indicated that there were NO VISIBLE SIGNS OF CANCER ACTIVITY! All of the tumors in the liver now have sugar uptake that is indistinguishable from the sugar uptake of the surrounding liver (or less if necrotic). That is just awesome.
Many of you have written with prayers and support. Thank you so much! Sorry that was a bit rambling. Feel free to post or email me if you have questions about our experience to date.
Hopefully, Andrea and I can continue to keep ahead of this monster…
Jason
Percy,
Is there any research that indicates this drug might be active against cholangio? I did a quick search and didn’t see any.
Great to see things get approved so fast and work so well on a tough cancer!
Jason
Ceci,
Here is the pattern for my wife:
Wed. is chemo day —
long day but not too bad (steroids + emend = ok
Ativan at night to help sleep (every night actually)Thurs —
Zofran in the am.
Steroids and emend still working. Pretty good day.Friday–
Getting a bit more tired. Zofran if needed in the am
First few cycles had a slight fever from Gem on this day (99?)
neck / shoulder pains (kind of like flu)Saturday–
Worst day of the cycle.
neck / shoulder pain
worst fatigueSunday
much betterMonday
Mostly normalTuesday
Mostly normalHope that helps!
Jason
Hi Ceci:
Lots of great information already. My wife, Andrea, is in the middle of her 10th cycle of gem/cis. The one thing I would add is that the doctors added a small bag of “emend” to the chemo process after the first treatment. I believe emend is an anti-nausea drug, but whatever it is, Andrea swears by it. It made a huge difference in how she felt after chemo. I have heard this from other people as well. So much really that I am surprised it is not a standard part of treatment.
I hope things go well,
Jason
Hi Rick,
Great to hear that a wiki is possible. It sounds like you guys have some experience with what does and does not work.
In my (very limited) experience, a successful wiki starts with one (or a few) people that set up the structure and begin the updating/editing process. At that point a few more people see the potential and show interest in adding and changing the wiki. Those folks are given editing access, and they then contribute articles and changes.
As the wiki improves in scope and quality, more and more are interested in learning how to make updates, and it grows from there.
I’m not sure if restricting the contributor list is possible with the updated website, but I think that is critical to keep out the bots and make it successful.
Hopefully there is a way to make it work.
Jason
Why Wiki? Great question!
I probably will not do it justice, but here are some quick thoughts on why wiki
Wiki is a technology that allows members (likely after an approval process) the ability to alter/change/enhance a web page quickly and easily (an immediately). It is often used in collaborative projects to help aggregate information.
When is wiki really useful?
-When key information needs to be regularly updated
-When key information is held by a diffuse group of people.
-When maintaining/updating all the information is too big a job for one person/group, but is a manageable job if spread out across the membership.Just to give one recent example, consider the threads on metal vs. plastic stents.
I am not sure if the updated website will have information on metal vs. plastic stents, but there was a ton of great info in the recent thread. Within a day I could have turned that information into a “metal vs. plastic” stents wiki page. Within a week there would probably be enough comments / changes so that the “metal vs. plastic stents” page would likely be one of the best sources on the web for real life experiences and information on this issue. As time passed, the page could be further enhanced with experiences and paper references, etc.
I am not sure how frequently the website gets updated, but I would not be surprised if it occurred every 1-3 years. So the difference I see is that a wiki would allow world class information to be user-created in days, whereas a process that relies on traditional web updates may take years (and likely stent information does not even make the cut)
As a second example, consider clinical trials. I could imagine a wiki page that lists the 10-15 clinical trials that have CC patients participating. I think it would be great if we could get those members to give updates as to how things are going on a particular trial. It is maddening how little information is available, and how frequently clinical trial experiences and results never make it into the literature. With a wiki, members would have an organized place to record and compare their experiences with others.
I could go on, but I think the key thing is that we have lots of members with important information. However, it is difficult for those members to incrementally add to the knowledge base their key piece of information. People are busy, and people dealing with CC are often really busy. If it is not easy to contribute your piece, the information is often lost.
A wiki makes capturing and organizing all the little bits of information much easier and efficient.
My intuition is that it would be a huge boon to our members, and I am hoping to figure out a way to make it happen.
Jason
Hi Danna,
My wife has had 18 gem/cis treatments so far, and I completely understand your concern. Some treatments follow a similar process, but often, the treatment nurses have quirks in their approach…maddening.
Anyway, here is what I can say about your questions.
For Andrea, the Gem is supposed to be administered over 30 minutes, and the Cisplaten is administered over one hour. Total would be 1.5 hours, no? Well no. The treatment also includes 2 bags (liters) of fluids and a small steroid bag as well. How long this takes depends mostly on the total flow they allow.
The chemo has a very proscribed flow rate (to hit the 30 min and 1 hour tagets). However, the extra fluid flow rate is not specified, and in our experience is nurse dependent. Some set the aggregate flow at 500-600 mL per hour, and others at 700-800 mL per hour. The faster the flow rate, the faster the process goes.
I don’t think there is an exact right answer. If you have a port, you can probably handle a faster flow rate. Without a port, I know they slow things down a bit.
The main thing that they are looking for, I believe, is that you are well hydrated before/during/after the cisplatin. If you are dehydrated to start, it could take a while to get your hydration enough to allow the cisplatin (for Andrea they monitor urine outflow to assess hydration). You might even have to take an extra bag of fluids if your hydration is low (adding 90 minutes or so to the process).
Anyway, I think it could reasonably take 4-6+ hours based on the nurse’s approach and the patient’s hydration and ability to take the chemo (port vs. standard IV). Perhaps MD Anderson lists the required time as an estimate if the patient requires hydration and does not have a port?
As a patient, it seems that the absolute best things you can do to protect yourself is to drink lots of liquids (all through the process), watch the nurses, and ask lots of questions! You seem to be doing great so far.
good luck with your treatments,
Jason
“knowing that the chance of getting a cure or a better tolerated treatment is much closer than 54 months ago.”
“new era of cancer research.”
Percy…I think I detect a higher level of optimism about the future.
I somehow feel more hopeful about all the new approaches coming out. If you feel that way too, that makes me feel even better!
Jason
On a positive note, I am doing some research into how to host and support a wiki page. I am hoping that ultimately a lot of the new patient, procedure and clinical trial information can be member created and kept up to date via a wiki.
More on that as I learn more!
Jason
I actually think it would be a shame to lose all the old posts and insights. Many of the procedures don’t seem to have changed that much, and of course, many of the older posts contain tons of wisdom.
One member recently (2000miler??) used the older posts to create a database of patients/procedures/outcomes that I think helped him make a treatment decision. Without the older posts, that analysis would not have been possible.
I can certainly see a rationale to get rid of older information (and it is often terribly sad to go back through them), but my intuition tells me that would represent a big loss to many current and future members.
Jason
Hi Pat,
It does sound like your situation and Andrea’s are similar. I know chemo sounds scary. Some people do have bad experiences, and for us, the warnings from the “chemo class” were alarming.
However, I think many people handle it well. In Andrea’s case, the main side effect has been feeling tired and achey for a couple of days. In fact, Andrea said that the fear of the unknown actually made the first few weeks tougher for her. Once she did it, and found out she could handle it, later cycles were actually easier. (She is sitting right here finishing her 18th infusion, and says if you want to talk or e-mail she would be happy to give you more details
)I can’t recall the specifics, but I am pretty sure that people that start chemo while feeling healthy tend to tolerate the side effects better. I do know that starting off healthy is associated with better outcomes from chemo (later progression and longer survival).
Of course, all of these decisions are highly personal, and everyone has to decide what is best for them. I did want you to know Andrea’s experience, and I hope this information is helpful to you in making some of your decisions.
Jason
PS As far as an update on Andrea, there is not much to tell yet. We get another scan later this month and have a visit to MD Anderson scheduled in a couple of weeks as well. Hoping for a good report at that time!
$24,000. Wow, that is a lot for a consult.
We have Cigna PPO as insurance. Prior to Andrea’s diagnosis of cancer, we had some hassle trying to get all the needed tests covered to figure out what was going on.
Though, after the diagnosis of cancer, they have been very reasonable. We will see how they react to an MD Anderson review…
Jason
