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visit w/ Dr. Lenz

lisa42
lisa42 Member Posts: 3,625
edited March 2014 in Colorectal Cancer #1
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

Comments

  • Annabelle41415
    Annabelle41415 Member Posts: 6,711 **
    Appointment
    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
    maglets Member Posts: 2,576
    whewww
    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
    chicoturner Member Posts: 282
    Lisa, thank you for sharing
    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
    Lori-S Member Posts: 1,277
    Lisa
    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
    AnneCan Member Posts: 3,673
    Lisa
    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
    msccolon Member Posts: 1,917
    sounds promising
    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
    tootsie1 Member Posts: 5,036
    You're amazing
    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
    plh4gail Member Posts: 1,238
    Lisa
    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
    Sundanceh Member Posts: 4,392
    Lisa:)
    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
    lisa42 Member Posts: 3,625
    wow
    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
    serrana Member Posts: 163
    lisa42 said:

    wow
    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

    trials
    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
    pepebcn Member Posts: 6,331
    serrana said:

    trials
    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

    Hi my dear, glad about your discussion with dr.Lenz has been
    Has been useful to you, please keep us informer about any trial you can find in your search!.
    Hugs!
  • lisa42
    lisa42 Member Posts: 3,625
    serrana said:

    trials
    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

    Serrana
    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
    geotina Member Posts: 2,111
    Lisa:
    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
    krystiesq Member Posts: 240
    geotina said:

    Lisa:
    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

    You're a warrior
    Lisa- I admire your strength. Keep going and going and going!!!