Apt. with Dr. Lenz
A number of people were curious about ****'s appointment with Dr. Lenz at USC. **** has seen Dr. Lenz four times. When he was first diagnosed (Jan 2009), before his second surgery at USC and after that surgery (May 2010) and then on Monday. **** went with a list of questions. As of ****'s scan on October 12, 2010 he is NED. That is after colon resection, 12 rounds of Folfox, 12 round of Folfori + Avastin, lymph node surgery, 8 more rounds of Forlori + Avastin. Here's the info he got pertaining to his case. Remember he has mucinous adenocarcinoma, moderately differentiated.
•Dr. Lenz recommended that **** get scanned every 3 months (not 4) for the 1st year.
•He said that if consulted right after **** finished those last 8 treatments of Folfori + Avastin he probably would have kept him on some regeme of Avastin and Xeloda but since **** had been off all chemo for 2.5 months he will wait and see the Pet in January.
• Blood test every 3 months including tumor markers and LDH (what's that?)
• Discussed the tumor study that stated that Avastin would be good to attack ****'s cancer.
• Discussed that ****'s body will take awhile to bounce back and not to be alarmed (****'s neuropathy is improving)
• Said something about a cytosine profile and that those patients do well. Sorry that is so vague. Here's a link I found. Very scientific
http://www.ncbi.nlm.nih.gov/pubmed/17938268
• For supplements Vitamin D 3000 IU, aspirin and milk thistle (for liver support)
• Confirmed that there is no easy way to know if you have peritoneal mets (**** did not in May) Confirmed that the mucinous stuff makes it hard to see on the scans (I hate this! ) Wait and see approach. Said if they popped up would recommend Chemo ( irotecan + Erbitux since **** can have this and has not yet) and then HIPEC. (Sorry about spelling)
• Said that **** taking good care of his health is great and to keep going.
• Didn't say much about the vaccine from Dartmouth but **** and I are going to pursue it anyway.
Nothing Earth shattering but it was good to make contact with him again in case we need his services in the future.
Aloha,
Kathleen
Comments
-
Yayayaya!
That sounds wonderful, Kathleen!! Even if, for no other reason, that right now... just before Christmas 2010, he is NED! NED has such a wonderful sound to it!
o/~ Deck the Halls with NED Covered Berries... Fa la la la laaaaa, la la la la o/~
o/~ I'm Dreaming of a NED Christmas!! Just like the ones I'd like to knowwwwww o/~
o/~ Oh Little NED of HA-WA-EE o/~
I'm thinking you and **** can be singing lots of NED songs after this long haul you've been on! I'm so happy for both of you!!
Cheryl0 -
This comment has been removed by the ModeratorCherylHutch said:Yayayaya!
That sounds wonderful, Kathleen!! Even if, for no other reason, that right now... just before Christmas 2010, he is NED! NED has such a wonderful sound to it!
o/~ Deck the Halls with NED Covered Berries... Fa la la la laaaaa, la la la la o/~
o/~ I'm Dreaming of a NED Christmas!! Just like the ones I'd like to knowwwwww o/~
o/~ Oh Little NED of HA-WA-EE o/~
I'm thinking you and **** can be singing lots of NED songs after this long haul you've been on! I'm so happy for both of you!!
Cheryl0 -
Thanks Kathleen!
for the great news about ****!!!!! and for all your info. I'll be talking to my medical oncologists soon after I get back path results from needle lung biopsy yesterday (should have by Friday). My Huntsman oncologist is a research doc too so info like what you get from Dr Lenz is very helpful to me.
Happy happy holidays!
all the best, Leslie0 -
This all sounds very good.
This all sounds very good. It's great to get a 2nd opinion. Keeping contact with Dr. Lenz is really smart. I hope you feel really good about the trip.
This list give me a few things to look into as well.
I have a few responses and questions.
- I'm curious about the avastin study. My onc told me yesterday that he and lots of other oncs are more and more disappointed with avastin - particularly when using it for the 2nd or 3rd time. Can you tell me where to find the study Dr. Lenz referred to?
-Why are you worried about peritoneal mets? Did **** have them before? I'm really embarrassed that I can't remember - sorry. When I was first diagnosed, there was something on the ct scan in my peritoneum, but it was impossible to tell what it was on the scan. When I had my colostomy done last year, the surgeon looked around with the camera and confirmed that it was cancer. Before my HIPEC in April, Dr. Shen had me come in for another look. He drove the camera all around to make sure he knew what he was going to be dealing with. It was a piece of cake out patient procedure. At some point in the future, if you see something suspicious, you could do the same thing. Peritoneal mets are bad for not responding to IV chemo. HIPEC is really difficult to recover from. You would want **** to be as healthy as possible going into it. A few cycles of Tecan + Erbitux may have little effect on the mets, but it would definitely weaken ****'s body. I can't believe I'm disagreeing with Lenz, but I really think any one should analyse the risk/benefit of chemo before HIPEC. Heck, the whole point of HIPEC is to apply the chemo directly to the area. Hopefully, you'll never need to think about it.
-Did you read Lisa42's post about vitamin D last week? It's really interesting.
You guys are in a good place right now. That make me so happy. Have a great Christmas.
Roger0 -
Great
Sounds like great news and he is still NED. Sounds like he is on a good plan.
Kim0 -
RogerCrow71 said:This all sounds very good.
This all sounds very good. It's great to get a 2nd opinion. Keeping contact with Dr. Lenz is really smart. I hope you feel really good about the trip.
This list give me a few things to look into as well.
I have a few responses and questions.
- I'm curious about the avastin study. My onc told me yesterday that he and lots of other oncs are more and more disappointed with avastin - particularly when using it for the 2nd or 3rd time. Can you tell me where to find the study Dr. Lenz referred to?
-Why are you worried about peritoneal mets? Did **** have them before? I'm really embarrassed that I can't remember - sorry. When I was first diagnosed, there was something on the ct scan in my peritoneum, but it was impossible to tell what it was on the scan. When I had my colostomy done last year, the surgeon looked around with the camera and confirmed that it was cancer. Before my HIPEC in April, Dr. Shen had me come in for another look. He drove the camera all around to make sure he knew what he was going to be dealing with. It was a piece of cake out patient procedure. At some point in the future, if you see something suspicious, you could do the same thing. Peritoneal mets are bad for not responding to IV chemo. HIPEC is really difficult to recover from. You would want **** to be as healthy as possible going into it. A few cycles of Tecan + Erbitux may have little effect on the mets, but it would definitely weaken ****'s body. I can't believe I'm disagreeing with Lenz, but I really think any one should analyse the risk/benefit of chemo before HIPEC. Heck, the whole point of HIPEC is to apply the chemo directly to the area. Hopefully, you'll never need to think about it.
-Did you read Lisa42's post about vitamin D last week? It's really interesting.
You guys are in a good place right now. That make me so happy. Have a great Christmas.
Roger
Roger,
Thanks for your input, it is valuable.
The study was a study of ****'s actual tumor. It said that Avastin should be effective and it did shrink the lymph nodes. When they took it out it was 15% viable and smaller than before.
**** has not had peritoneal mets. They looked real good when he went in for the lymph node surgery in May 2010. Everything looked good. It was an open surgery so I think they got a good look. The doctor who did it does a lot of kidney transplants and knows the area well.
Great point about the chemo before HIPEC. We hope we don't have to look at this at all but I just want all the info up front.
Thanks.
Aloha,
Kathleen0 -
thanks
Thanks for posting this, Kathleen. It is good to get an update on ****'s situation but also much information which is of interest/relevance to others (including me). As you know, I have consulted with Dr. Lenz a couple of times myself.
I am currently on Folfiri +Avastin but when I am finished with this regime (note I say WHEN, not if -- I'm counting on those last few bone mets disappearing!), my oncologist is talking about me going on Xeloda plus Avastin -- so I was curious/pleased about his statement on that (although of course I realise everyone is different).
There's some information on LDH here: http://cancer.stanford.edu/information/cancerDiagnosis/. I don't think I've had that tested myself (that I'm aware of). I do have CA 19-9 tested as well as CEA -- my oncologist told me he doesnt put a lot of faith in it (not sure why) but no harm to check....
Glad to hear all is going so well for ****!
Best wishes,
Tara0
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