jscott
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Carl,
We are in a similar situation. My wife (ICC) is starting round 6 of Gem/Cis today. She had a positive scan after round 3 (20% shrinkage), and is getting another scan after this round.
She is being treated at Stanford. Radioembolization is also available and encouraged at Stanford. Evenso, there has never been any discussion regarding a max number of Gem/Cis cycles. They do monitor kidney functions and we spend a lot of time and effort hydrating to help minimize the kidney impact. While things can change, the current plan is to keep on with Gem/Cis until it no longer works and then likely move to radioembolization.
I would ask the doc the rationale for a max of 8. Are more cycles less effective? Are they seeing something in the liver function bloodwork they don’t like? Research out there supporting this approach (I haven’t seen/heard of this)? Hunch? what?
Best,
Jason
Hmm. Not sure what happened to the link to the presentation, but here it is again.
http://www.biocompatibles.com/uploads/document_r/APP20.pdf
Jason
Hi Jules,
I can’t comment from experience, but I am also looking into this therapy area (my wife has unresectable ICC).
One promising chemoembolization therapy I found was Drug-Eluting Beads with IRInotecan (DEB-IRI).
Here is a presentation that discusses the procedure:
http://www.biocompatibles.com/uploads/d … /APP20.pdf
A research paper describing some of the results is here:
The paper reports on results from this procedure on 24 patients. The paper describes the number of partial responses and median survival. The part of the results that caught my eye were:
“Three patients were downstaged to resection and
underwent subsequent hepatectomy with radiofrequency
ablation. Three patients showed a complete response with
100% loss of positron emission tomography scan activity.
Of these, 1 patient remains free of disease (follow-up time,
33.8 months) and 2 patients are alive with disease (followup
time, 33.3 and 80 months).”***Although I can’t figure out why the abstract claims only 1 patient was downgraded to resection…
Here is a clinical trial evaluating the procedure:
http://clinicaltrials.gov/ct2/show/NCT01648023
please understand that I am not a doctor and I am just doing my own research the same as you. As such, I can’t really say whether this is a good idea or not for you. However, I did want to make sure you knew it was out there.
Jason
Is there any secret to getting the video and audio synchronized?
All of the videos presentations that I have watched do not have the slides match up with the audio.
The genomic presentation doesn’t seem too bad (the audio is only a slide or two behind the video), but some of the others have the video numerous slides ahead of the audio. Some even have the video finished before the audio is half way done!
Is this somehow just my system or do others have this issue? Any workaround that I could try?? (two screens, perhaps?)
Thanks!
Jason
The second link describes the procedure as
“Tiny radioactive ‘beads’ are injected into branches of the artery that supplies blood to the liver”
so definitely talking about radioembolization.Percy: My wife is being treated at Stanford, and radioembolization seems to be a likely treatment path. I share some of your concerns. I would be grateful if you could elaborate on this concern you have “its subsequent influence on the decision making process of both the oncologists and surgeons when the tumor recur.”
What types of future procedures are impacted by radioembolization?
Thanks,
Jason
Do metal stents prevent radioembolization? I seem to recall that the doctor from Moffitt that did the radioembolization video (linked in the video section of this website) was down on metal stents. If you haven’t watched that video, I highly recommend it for understanding the procedure and its benefits.
Anyway, let me echo Marion and suggest you ask your oncologist about what treatment options are impacted should they put in metal stents.
Jason
MLayton,
It sounds like you are doing a fantastic job researching and advocating for your wife. I am in a very similar situation advocating for my wife as well (age 45, locally advanced ICC, no symptoms, 2 kids…very similar).
I realize you have been bombarded with amazingly bad news lately, but one piece of good news that I saw in your post is that resection is a potential option. The research suggests Gem/Cis has a pretty good chance of stablizing the disease for at least a while, and also has a decent chance of shrinking the tumors.
One regional chemotherapy you might look into is Drug-Eluting Beads with IRInotecan (DEB-IRI).
Here is a presentation that discusses the procedure:
http://www.biocompatibles.com/uploads/document_r/APP20.pdf
There are some papers noted in the presentation that are worthwhile to track down.
Here is a clinical trial evaluating the procedure:
http://clinicaltrials.gov/ct2/show/NCT01648023
Even though this is all based at U of Louisville, my understanding is that this procedure is more widely administered.
This seems like a good option in general, but what made me think of it is that you seem to be choosing between systemic and regional therapy. One interesting aspect of this treatment is that they are now explicitly combining systemic gem/cis chemotherapy with regional DEBIRI therapy.
If the name of the game is to get a chemo response to facilitate resection, then a combined regional and systemic approach might be something to look into.
Of course, I am not an oncologist, and you should not make critical decisions based on my advice, but I do think it is something you might ask your doctors about.
Good luck,
Jason
Hi Willow,
Very glad to hear your sister handled the radioembo so well. I think we are probably going to go down that path as well. Our oncologist is Dr. Cho-Phan. She has been supportive (maybe a little passive for my taste, but ok).
As far as radioembo goes, do you know which Dr. did the procedure for your sister (Louie or tze)? What did you think of the doc? Did you stop chemo before and after the procedure, and if so how long?
Sorry for all the Q’s, but thanks for any answers!
Jason
Carl,
One thing about the CA19-9. A good friend of mine from high school is an oncologist. When discussing my wife’s case, he actually said he looks for a spike up in CA19-9 when starting chemo. According to him, dying cancer cells release the antigen, so he takes a spike up as a good sign.
Of course, you do want it to come down eventually, but I thought I would let you know a spike can be good. Hopefully, it is in your wife’s case.
Best,
Jason
The article is behind a paywall (any easy way to get access?)
Anyway, here is an important table from the article that I found very useful:
http://www.nature.com/onc/journal/vaop/ncurrent/fig_tab/onc2012617t2.html
Jason
Hi Percy,
From your comments, I think we are thinking along similar lines. Anyway, let me try and answer your questions.
Q – What is the current plan?
A – The liver board at Stanford reviewed the scans and suggested we do another 3 cycles of gem/cis. We are going to do this. However, my thinking is that a linear approach to therapy (do one therapy until it fails, then try another) is not ideal. There are so many therapies out there that could be active against the cancer, that I think it makes sense to try as many as possible. Our plan is to add other therapies to the mix over the next 9 weeks. We have a consult set up with a dr. in the immunotherapy group at stanford. Hopefully that will identify a therapy that can be added with minimal toxicity.
Q – What about Radioembolization?
A – This is still a strong possibility for the future. Stanford specializes in this therapy, and the data does suggest it helps. However, I share your concern that the residual effects of the radiation are poorly understood. One of my concerns here is that I think they want to do the therapy to both lobes at once. My research suggests this is dangerous and not any more effective. They are going to have to explain that better before we do radioembolization.
Q – Heard back from Dr. Kato?
A – We sent the new scan to Dr. Kato to update his files. He has not reviewed our case yet. Given the timing of the scan, we thought it would be better to have him look at the latest scan before the consult. I talked with his assistant Sarah, and I think we should hear from Dr. Kato in the next week or so.
I am concerned that some forum members have had bad outcomes from Dr. Kato. However, I agree with you that given Dr. Kato is accepting cases that are so poor that they are rejected by other surgeons, a much poorer outcome profile is expected.
Is there any more concrete data on patient experiences with Dr Kato?
Anyway, thanks as always for the support and helpful comments.
Jason
An important tip I got after my wife’s diagnosis in April was to create a personal copy of all of her medical records.
I would recommend you (or have your dad) request a physical copy of all of his reports and lab results. Most importantly, you want to get a copy of his scan images (CT, Pet or whatever) on CD disks. Whereever he got the scans are usually set up to provide these disks.
In my experience, armed with this information, you can quickly get a second opinion from most doctors and hospitals. You do have to contact them directly and send them a copy of the information, but every doctor I have contacted has been very willing to spend a few minutes talking and has been willing to take a quick look at the scans.
If you don’t have a personal copy of this information, a second opinion requires the hospitals to exchange information. This process can be much slower, and often starts with a formal referral request. At that point, two hospital beauracracies and your insurance company become involved which can add lots of time to the process.
I am not sure how often you will seek a second opinion about some aspect of your dad’s care, but my experience has been that the “get a copy of all your records” tip has been hugely helpful.
Jason
I had no trouble getting a hold of Dr. Kato’s assistant using the provided phone number.
Doing some research, I did come across a document with an email for Dr. Kato at Columbia (although I don’t know if it is out of date). If calling doesn’t work, I can send you his email contact information in a private message.
Let me know,
Jason
