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visit w/ Dr. Lenz

lisa42's picture
lisa42
Posts: 3663
Joined: Jul 2008

Hello everyone,

Hope you're doing alright and will have a lovely Thanksgiving! I'm getting off pretty easy this year- just taking rolls, green salad, and two pies to my mother in law's house.

I had planned on posting sooner than this about my visit to Norris Cancer Center/USC with Dr. Lenz on Monday, but I had chemo yesterday & didn't feel well, then my internet was down for much of today.

The appt went well and Dr. Lenz was very nice & spent a good hour with me explaining things, answering questions, and going over with me what I should look for and not look for in a clinical trial. It was all very helpful.
I admit that I was disappointed at first because I will not be doing the PR1724 trial (the one with the drug that targets the cancer stem cells). I was really hopeful about this or about finding another clinical trial there or somewhere. Dr. Lenz explained to me that he doesn't believe my cancer has advanced enough to really be considered disease advancement (which would be required to participate). He feels that as long as I still have another option, I should wait on doing a clinical trial. He said that he believes in this PR1724 drug and is excited about it, but said in a phase I trial that he can only give just that drug, not the drug combined with chemo which is what he said would actually be best for me. He told me what would be considered disease advancement is if my scan had showed new tumors growing in new places. He did not consider the increased PET uptake in all areas as concerning (although said it should be watched carefully) & one lung tumor growing a few millimeters when all the other many tumors had not grown meant it was considered an overall stable scan. The radiologist who wrote up my scan report worded it as "slight disease advancement". Dr. Lenz said that since his drug in this trial is not yet proven on humans, that there could be more risk to me to go off what I'm on and go onto something still not proven. If my next scan should show new tumors growing, then I should find something else & maybe his or another trial. He did say I'm now being put on a list that if a trial should come up that I meet requirements for that they would call me. Prior to this, the patient just had to keep calling and checking themselves.
When Dr. Lenz was explaining to me what I should look for in a clinical trial, he said at least at Norris Cancer Center, that I need to look only for trials that do not include any of the drugs I've already had. That's hard to find, except in phase I trials where they're just testing one new drug- there are a couple of phase II trials out there that combine new drugs w/ chemo and don't exclude the patient if they've had the chemo but most do. He talked about a clinical trial they have going there at Norris which includes a new drug and a different form of irinotecan (the main drug in Folfiri), but said that particular trial needs "irinotecan virgins", which I am not! It does make clinical trials that I can look into and be considered for much more difficult to find, but it helps me to know what to look for and not waste my time looking into trials I won't qualify for.
He talked highly of phase I trials coming out of Vanderbilt in Nashville and of those coming out of a facility (forgot the name- wrote it down though)in Scottsdale, AZ. He also thought one trial I had brought a copy of in from Bethesda, MD looked like one I should look into. Not for right now- he still thinks I should stick with what I'm on, but just to have the information and get my name on their list for future.

Monday was a long day, although I know my drive was nothing compared to what some of you do. L.A. traffic is no picnic, though. I was gone from about 11 a.m. to 5:45 pm & within 15 minutes of being home, we took off in the car again to meet relatives for a birthday dinner for Amy, my now 15 yr old. She was grumbly in the a.m. that I was leaving her on her birthday, but got over that and had a nice evening! One of her gifts this year was a request of hers- to go with a friend to get a manipure/pedicure for the first time. That is where she is right now & I've got to go pick her up from the salon in about 20 minutes.
I am doing alright and still feel like there is hope and possibilities.
Oh- I also discussed the cyberknife and transanal excision for the rectal node with Dr. Lenz. He thinks I should go ahead and get the node removed surgically- that will probably happen in January, as it's not an emergency status to need to to do immediately. He did not think I should do the cyberknife, mainly because it involves an invasive procedure first of putting a gold bead in each tumor & that is invasive in the lungs. If it really starts to bother me (which it really isn't- was just more of a concern to find out it was growing)- then he suggested going more the stereotactic radiation route which is very precise, but doesn't involve my lung being pierced first.

Well, happy turkey day everyone- hugs to all!!!!

Lisa

Annabelle41415's picture
Annabelle41415
Posts: 4304
Joined: Feb 2009

Well it sounds like your doctor's appointment went fairly well and you learned something along with it. It's wonderful you are so proactive in all these trials and your doctor is willing to work with you on it. Hope you have a wonderful Thanksgiving. Be careful!

Kim

maglets's picture
maglets
Posts: 2416
Joined: Jun 2006

ahhh Lisa....good for you girl...you just did that Dr Lenz thing and now you are on a future list....when things apply more for you.....you must be exhausted Lisa....proud of you for working sooo hard

try to unlax and enjoy a bit of holiday....hugs

mags

chicoturner's picture
chicoturner
Posts: 285
Joined: Apr 2009

Lisa, thank you for sharing your experience. It sounds like Dr. Lenz gave you lots of well thought out advice. It is difficult when it doesn't always agree with what we were thinking. It must have been encouraging to hear them say the growth was not advancing! I admire how much you do and how much research you have done. Let us know if you get calls about trials. I was quite surprised to get a call so soon, however, I too am only on Phase 1 trials and mind has shown growth. I will end this cycle on Dec. 7 and await scans.!! Have a wonderful Thanksgiving! Jean

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

It sounds like the appt went really well and that you got a lot of good and vital information. I'm so glad that you went to see him. It's always nice to hear that a doctor will take their time to really educate you about your specfic situation. And it sounds like you have more information to work with to get a plan together that will work for you. Congrats. HUGS

AnneCan
Posts: 3693
Joined: Oct 2009

It sounds like Dr. Lenz is looking out for your best interest. It also sounds like you were there for the most important parts of your daughter's birthday. I think you set the bar high as a Mom + a woman - even when you say you don't have much to do for Thanksgiving, it still sounds like a lot.

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

Even though you aren't eligible for the trial you were hoping for, getting on the list to be called when you DO qualify for a trial sounds like really good news! It sounds like Dr. Lenz really took time to talk in depth with you regarding qualifying for trials and what to look for when you are researching trials; should help you not to waste time on trials you just won't qualify for. Sounds like your daughter's birthday celebration turned out well also, with her finally coming around and not being the complete sulky teenager! You are such an awesome, strong woman and seem to be able to somehow meet all of the requirements you have in your life; that's an amazing thing! I pray you enjoy Thanksgiving and I pray God continues to place angels in your path and leading you in the way which He means for you to follow.
mary

tootsie1's picture
tootsie1
Posts: 5006
Joined: Feb 2008

Lisa,

I just love your "get at it" attitude. You obviously do your research, and you are a strong advocate for options you feel would help your case. I'm always amazed at your knowledge!

I'm glad the visit went so well, and I really pray you'll find the right avenue for acheiving that lovely NED status.

*hugs*
Gail

plh4gail's picture
plh4gail
Posts: 1232
Joined: Oct 2010

Lisa, I am glad you are happy with the way things went with your appt with Dr. Lentz. I hope you have a great Holiday.

Gail

Sundanceh's picture
Sundanceh
Posts: 4306
Joined: Jun 2009

As always, you are out on point, blazing the trail for yourself - you always know what to do:)

As I've said before, you are always welcome to "play on my team" - you'd be such an asset! Of course, with all you've got going on at home, I think you've got enough going on there to occupy your time - like fighting cancer, and raising your family.

I know the role of "SuperWoman" must wear on you so much, from time to time, Lisa. That's the truth of the matter. I know you are the glue that holds your whole thing together there - I hope that one day that your family really looks at you - Lisa and the Mom - and realizes what a very strong, very tough, and very determined woman and mom that you are.

I alway delight in your strength and when I feel like I can't make it, I think of how Lisa would approach it and then I'm awed.

I hope I can be like you one day - if I ever grow up:)

Blessings!
-Craig

lisa42's picture
lisa42
Posts: 3663
Joined: Jul 2008

Hi Everyone,

Thanks for the interest and support!
Craig, you say some mighty fine words- makes a girl's day!
You are mighty strong, yourself. :)

Well, off I go to enjoy the day- Happy Thanksgiving to you all!

Hugs,
Lisa

serrana
Posts: 163
Joined: Apr 2009

Hi Lisa Glad Dr Lenz was so informative and spent so much time explaining to you; it will help the rest of us for sure. WOuld you email me the info on the Bethesda trial, I still have hopes of moving to Baltimore........Happy T Day, I am thankful for your example and spirit.
Serrana

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Has been useful to you, please keep us informer about any trial you can find in your search!.
Hugs!

lisa42's picture
lisa42
Posts: 3663
Joined: Jul 2008

Hey you! Good to see you on the board :)
We need to catch up & speak in person again- yes I will email you the info soon.

Hugs, :)
Lisa

geotina's picture
geotina
Posts: 2064
Joined: Oct 2009

Well it sounds like Dr. Lenz was encouraging and really gave you much information to mull over in the next few weeks. The 15 year old, well, it does get better at about age 17, just don't let her get to you too much until then. Just remind her that you brought her into this world and you can take her out (just kidding).

Yes there is hope and possibilities so hang in there.

Take care - Tina

krystiesq's picture
krystiesq
Posts: 242
Joined: Jun 2008

Lisa- I admire your strength. Keep going and going and going!!!

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