two dr. appts down, one to go- now what? Updated

lisa42
lisa42 Member Posts: 3,625
edited March 2014 in Colorectal Cancer #1
Update: Hi Everyone- thank you so much for your replies, suggestions, and prayers! I did write a short update Saturday, but a couple of people replied after that- guess they didn't see it down there. I had said that Dr. Fanta (Dr. Fantastic, as someone said) called me Saturday morning. I was supposed to have an appt w/ him this coming Tuesday. My insurance denied me to go to Dr. Lenz at USC (which I paid over $500 cash for), and they denied me seeing Dr. Fanta again (they said I already got a 2nd opinion from him w/in the last year). I could probably fight that & I will still try to get reimbursement for Dr. Lenz's appt. Dr. Fanta said that I might as well cancel my Tues. appt w/ him and that since he got all my recent medical info & the appt. notes from Dr. Lenz, we can just take care of things over the phone, fax, and email. What a guy! He is going to talk to Dr. Helton (my main onc) Monday a.m. to get him to write a letter to the insurance to explain why they need to pay for me to get Gemzar with Xeloda, even though it's not yet FDA approved for colorectal cancer. He thinks it will get approved & he's going to have all three oncs I've just dealt with sign the letter & he'll send the important good data on Gemzar (gemcitabine) to them as well. Dr. Fanta said he didn't want me to worry all weekend so that's why he was calling me Sat. a.m. He said "don't worry- we'll get this taken care of". So, I was able to relax and not think about it all weekend.
Now... I'm going to go help my 14 yr old w/ studying for her Mon. morning social studies test! Take care & I'll let you all know what happens with this. I'm thinking of you all too!!

Hi,

As you may remember, my PET/CT scan on 2/10 showed disease progression in my lungs, liver, and rectum. Three months before this time, I had stopped chemo when my November scan showed disease progression even while on Folfiri/Avastin. I then chose to start an offline treatment through Dr. Cantrell of Lovastatin and interferon. It worked well for several people, but not me.

This past week, I've set up appts. with my regular onc Dr. Helton, and Dr. Fanta,an onc I've consulted with before at UCSD and, for the first time, with Dr. Lenz at USC.
I had my appt. w/ my Dr. Helton on Wednesday. He said I should go for either of the clinical trials that Dr. Lenz or Dr. Fanta have to offer.
Then I had an appt w/ Dr. Lenz at USC yesterday, where I was really interested in pursuing the PARP inhibitor clinical trial and went up yesterday with hopes of this. First thing after Dr. Lenz walked in the room, he said "well, because you do not qualify for the PARP inhibitor trial, we will talk about what else we can do." Boom- I kind of felt like I was punched with that news right away, but had to keep my composure to keep up with everything else he started rattling off. Meeting him was an experience.
Anyhow- bottom line- even though I can't do the PARP inhibitor trial, there is a clinical trial that I would qualify for at USC (EPO 906 w/ Celebrex) BUT it is full and there's a waiting list of 18 people. I signed up for the waiting list, but don't know what the chances are and don't think I can just wait around for it. There are two other drug combos that show good promise and Dr. Lenz recommended for me to take (Gemzar with Xeloda or Pazapanip). The kicker is that only Xeloda is FDA approved & since the others aren't approved and there are no trials with them right now, I probably would never get insurance approval for them. Both Dr. Lenz and Dr. Helton told me that prior to Jan. 1, 2009, they could pretty much prescribe anything at all and insurance would cover it, but not anymore. Dr. Lenz said he knows that will only get even more restrictive with upcoming health care reforms. After asking me my income level, he told me I probably wouldn't qualify for help from the drug companies either.
So, I said, "well, then what should I do?" I also brought up the clinical trial that Dr. Fanta at UCSD thinks I should go on. That's called EZN-2208 with or without cetuximab. Cetuximab is Erbitux and anyone with kras mutations would be given it without the Erbitux. This EZN-2208 is a type of irinotecan/Camptosar that works just a bit differently and may have less side effects. Sounded good at first, but since I had disease progression on irinotecan before, I would worry to risk that this might not work either.
Dr. Lenz agreed with my concern and said I should not do it. That leaves me again with "well, then what should I do??" Due to the "diffuse, innumerable lung nodules", I am not a candidate for surgery, RFA, or cyberknife & I need to take some kind of chemo or other drug ASAP. I brought up "what about Folfox again?" That was what I took the first 6 months I was dx'd & my tumors shrunk and stopped lighting up on the PET on it. The issue for me, however, is that I had an allergic reaction to the oxaliplatin & had to go through desensitization each time for it so they are hesitant to try it again. Wednesday, Dr. Helton said he'd only consider that as a last choice. Well, I just might be at that last choice point. I was on the NCI website for clinical trials within 500 miles of where I live & I am only qualified for two of them- the same two that I already wrote about above. Maybe there will be more in the future or farther away. I'm going to see what my local options are first. I see Dr. Fanta at UCSD on Tuesday and will be talking more with Dr. Helton. Dr. Lenz said if I hear of any more trials, to email him and let him know. He also said to call and check every week to see if any more trials open up and to see if my name moves up the waiting list on the EPO 906 w/ Celebrex trial. I'll let you know within the week if I find out more.

Sorry if this is too detailed- *See update at top*
Lisa
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Comments

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    I Follow You...
    But that is quite sobering, dear Lisa.

    You have fought so hard and researched everything and have jumped thorugh every hoop and climbed all the rungs on the ladder - thinking that the options have run out sent a chill right up my spine - I'm scared straight now.

    Waiting lists and insurance approval is a big "stick in the mud" when you so despearately need some answers and/or a treatment, to say the least. Your composure is remarkable. There should be a picture of you in Wikipedia under STRENGTH and COURAGE.

    But you are not taking this lying down and I continue to admire you for your perseverance in not taking No for an answer. I wish you could get in this trial that you are wanting to do.

    Oxy again? Last resort? I'm not sure if I understand the desensitizing part of what you were saying - do they dilute this further so you can take it? Is that what that means?

    This is very hard news and will be for the others that come behind me...but I'm going to continue to hope and wish for something to turn around - and fast.

    I'm at a loss of words right now - my other wish for you is that your family will "pitch in" and help you more and take some of the burden off of you, while you fight this. From what you've said, it sounds like they rely and lean on you too much - and this is your time right now - we all take each other for granted, but maybe if they knew how serious this was, they would all step up their game and "lighten your load." You've been a SuperWoman for too long - I'd like to see you get a break and have them wait and care for you now. Not being preachy, but I just worry about you and I know your plate is full - you're sick and they are healthy. I'm sure the day to day stress can be hard on you.

    Love you, Lisa :)

    Still your friend
    -Craig
  • lcarper2
    lcarper2 Member Posts: 635
    Sundanceh said:

    I Follow You...
    But that is quite sobering, dear Lisa.

    You have fought so hard and researched everything and have jumped thorugh every hoop and climbed all the rungs on the ladder - thinking that the options have run out sent a chill right up my spine - I'm scared straight now.

    Waiting lists and insurance approval is a big "stick in the mud" when you so despearately need some answers and/or a treatment, to say the least. Your composure is remarkable. There should be a picture of you in Wikipedia under STRENGTH and COURAGE.

    But you are not taking this lying down and I continue to admire you for your perseverance in not taking No for an answer. I wish you could get in this trial that you are wanting to do.

    Oxy again? Last resort? I'm not sure if I understand the desensitizing part of what you were saying - do they dilute this further so you can take it? Is that what that means?

    This is very hard news and will be for the others that come behind me...but I'm going to continue to hope and wish for something to turn around - and fast.

    I'm at a loss of words right now - my other wish for you is that your family will "pitch in" and help you more and take some of the burden off of you, while you fight this. From what you've said, it sounds like they rely and lean on you too much - and this is your time right now - we all take each other for granted, but maybe if they knew how serious this was, they would all step up their game and "lighten your load." You've been a SuperWoman for too long - I'd like to see you get a break and have them wait and care for you now. Not being preachy, but I just worry about you and I know your plate is full - you're sick and they are healthy. I'm sure the day to day stress can be hard on you.

    Love you, Lisa :)

    Still your friend
    -Craig

    Lisa42
    I read this with a heavy heart I to agree that your family should lighten your load and allow you to get much needed rest this illness is very taxing to our body soul and mind. I pray for a healing for you and that God will touch you now and you won't need any trials...I wish I had more to say but am going to get a prayer chain going tonight for you...
  • cowman
    cowman Member Posts: 61
    Lisa,
    I had been looking all

    Lisa,

    I had been looking all day for your post and was getting a little worried when we hadn't heard. This was hard to take no matter how you look at it. Craig said it well and I hope you do get the support you need and deserve at home. I will be praying for an answer to this and you know there are alot of prayer warriors out here!
    Diane
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Sundanceh said:

    I Follow You...
    But that is quite sobering, dear Lisa.

    You have fought so hard and researched everything and have jumped thorugh every hoop and climbed all the rungs on the ladder - thinking that the options have run out sent a chill right up my spine - I'm scared straight now.

    Waiting lists and insurance approval is a big "stick in the mud" when you so despearately need some answers and/or a treatment, to say the least. Your composure is remarkable. There should be a picture of you in Wikipedia under STRENGTH and COURAGE.

    But you are not taking this lying down and I continue to admire you for your perseverance in not taking No for an answer. I wish you could get in this trial that you are wanting to do.

    Oxy again? Last resort? I'm not sure if I understand the desensitizing part of what you were saying - do they dilute this further so you can take it? Is that what that means?

    This is very hard news and will be for the others that come behind me...but I'm going to continue to hope and wish for something to turn around - and fast.

    I'm at a loss of words right now - my other wish for you is that your family will "pitch in" and help you more and take some of the burden off of you, while you fight this. From what you've said, it sounds like they rely and lean on you too much - and this is your time right now - we all take each other for granted, but maybe if they knew how serious this was, they would all step up their game and "lighten your load." You've been a SuperWoman for too long - I'd like to see you get a break and have them wait and care for you now. Not being preachy, but I just worry about you and I know your plate is full - you're sick and they are healthy. I'm sure the day to day stress can be hard on you.

    Love you, Lisa :)

    Still your friend
    -Craig

    Craig says it all
    Craig said it best. Will be praying that you can find a doc and trial that will work for you.

    Marie
  • just4Brooks
    just4Brooks Member Posts: 980
    Have you thought of treatment in Mexico
    I've been hearing more and more about treatments in Mexico. No FDA.... Oasis of Hope Hospital,Cancer Treatment Center in Tijuana, Mexico is one that I can remember people talking about.

    Brooks
  • Crow71
    Crow71 Member Posts: 679
    Lisa - This is hard to take,
    Lisa - This is hard to take, but thanks for sharing. I've been thinking about you. I understand the hesitancy to do Oxi again, but that sounds like your best choice. Oxi worked for you once, may be it will again. Just don't give up. Stay strong.
    I've got a nice big fire going outside tonight. Sending you many, many sparks of Hope and Healing.
    Roger
  • ann2008
    ann2008 Member Posts: 118
    Lisa
    My heart is heavy just reading your struggle. Please know my prayers are with you. Ann
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    ann2008 said:

    Lisa
    My heart is heavy just reading your struggle. Please know my prayers are with you. Ann

    Lisa
    The folfox is always there, and it did slow the progression ...Do you think that infusing it very very slowly would be a benefit in your favor...If all else fails the folfox will work, you know it will.......Love to you and yours , we're here for you..Clift
  • Jaylo969
    Jaylo969 Member Posts: 824
    Lisa
    I am new to this forum but I have been keeping up with your posts and hoping good things for you. You seem to be one strong,determined,& proactive woman and my hat is off to you for the strength and courage you manifest.My heart just broke when I read this post because I can only imagine how tiring all of this is for you.I know I'm tired and I haven't had to go through many of the things you have. I hope your name will come up fast for the trial and in the meantime know that if prayers, sparks, & good thoughts mean anything then you should be just fine because I know everyone in his own way is pulling for you and your well being.

    Best wishes,
    -Pat
  • Fight for my love
    Fight for my love Member Posts: 1,522
    Dear Lisa,I have been
    Dear Lisa,I have been praying for you and I will still do.Wish you all the best.Take care.
  • JR
    JR Member Posts: 139
    Dear Lisa
    My heart goes out to you. You are and always have been an inspiration to me and my wife. Your strength and courage will carry you through until something comes along, and I'm confident that something will. Until then, I agree with Clift, pursue the Folfox. Did you get treatments of Folfox without the Oxy ? If so, did cancer keep shrinking ? Maybe Folfox without the Oxy will help. I don't know but something has to work for you. You are in my prayers.

    John
  • robinvan
    robinvan Member Posts: 1,012
    Thank you for the update.
    Lisa,
    I hope some treatment emerges for you from the midst of all you have described.
    You are in my thoughts and prayers.

    Rob; in Vancouver
  • dorookie
    dorookie Member Posts: 1,731
    Keep Fighting
    I know you will, you are such a strong and courage woman. I pray for you daily. I totally agree with what Craig said, he has such a great way with words. Please know we are here for you if there is anything we can do just let us know. Keep the faith, Girl, it will work itself out.

    Love your friend
    Beth
  • lisa42
    lisa42 Member Posts: 3,625
    Thanks
    Hi Everyone,

    Thank you for all of your kind words and prayers. I feel badly now that I've made so many of you sad. Maybe I gave too much detail, but part of writing it all out actually felt good for me as I was typing it. My onc Dr. Helton never did call me back after I left a message this morning that he or at least his nurse could please call me back, as I really was wanting to discuss options after my appt. w/ Dr. Lenz. Now I guess I wait over the weekend. I'm not going to let this totally ruin my weekend, because I believe options are still out there, even if they've become harder to find. I think maybe if my onc will agree to give me the oxi (he was very hesitant), that might be my best bet for now anyhow. In spite of the recent disappointments, I still believe that there is a divine plan here and that belief is what gets me through it all.

    I was so glad to hear some good news from some folks on this board over the past couple of days- sorry I couldn't be part of that- but maybe my day's still coming for that.

    I think I may take the weekend off from the board- I'll be back soon though when I maybe have some news early next week.


    Love ya'll! (I'm not from the South, but just like the way that sounds!) :)
    Lisa
  • dorookie
    dorookie Member Posts: 1,731
    lisa42 said:

    Thanks
    Hi Everyone,

    Thank you for all of your kind words and prayers. I feel badly now that I've made so many of you sad. Maybe I gave too much detail, but part of writing it all out actually felt good for me as I was typing it. My onc Dr. Helton never did call me back after I left a message this morning that he or at least his nurse could please call me back, as I really was wanting to discuss options after my appt. w/ Dr. Lenz. Now I guess I wait over the weekend. I'm not going to let this totally ruin my weekend, because I believe options are still out there, even if they've become harder to find. I think maybe if my onc will agree to give me the oxi (he was very hesitant), that might be my best bet for now anyhow. In spite of the recent disappointments, I still believe that there is a divine plan here and that belief is what gets me through it all.

    I was so glad to hear some good news from some folks on this board over the past couple of days- sorry I couldn't be part of that- but maybe my day's still coming for that.

    I think I may take the weekend off from the board- I'll be back soon though when I maybe have some news early next week.


    Love ya'll! (I'm not from the South, but just like the way that sounds!) :)
    Lisa

    Enjoy
    Have a great weekend, try to get some rest and relax. I know thats what my plan is. Good Night my friend.
    Sweet dreams

    *HUGS*
    Beth
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    lisa42 said:

    Thanks
    Hi Everyone,

    Thank you for all of your kind words and prayers. I feel badly now that I've made so many of you sad. Maybe I gave too much detail, but part of writing it all out actually felt good for me as I was typing it. My onc Dr. Helton never did call me back after I left a message this morning that he or at least his nurse could please call me back, as I really was wanting to discuss options after my appt. w/ Dr. Lenz. Now I guess I wait over the weekend. I'm not going to let this totally ruin my weekend, because I believe options are still out there, even if they've become harder to find. I think maybe if my onc will agree to give me the oxi (he was very hesitant), that might be my best bet for now anyhow. In spite of the recent disappointments, I still believe that there is a divine plan here and that belief is what gets me through it all.

    I was so glad to hear some good news from some folks on this board over the past couple of days- sorry I couldn't be part of that- but maybe my day's still coming for that.

    I think I may take the weekend off from the board- I'll be back soon though when I maybe have some news early next week.


    Love ya'll! (I'm not from the South, but just like the way that sounds!) :)
    Lisa

    love and prayers
    Love and prayers to you Lisa. :)

    Aloha,
    Kathleen
  • banma
    banma Member Posts: 9
    Here's a new option
    Lisa,

    Keep at it - there must be something. Have you seen this one?

    http://www.cancercompass.com/cancer-news/article/32941.htm
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Praying for you
    Oh, Lisa.

    Yesterday was a rare day that I didn't get to check the board. Reading this post now makes me hurt so much for you. You're very brave in the face of daunting prospects, and still have the grace to apologize in case you've shared too much with us.

    I'm certainly not as well-versed in chemo as others here, but I will pray that just the right treatment will be found for you. Maybe WE don't know the answer yet, but it is there.

    Please come here as often as you feel you can, and we will be here for you. And I also hope you will be resting and treating yourself like a delicate flower, otherwise.

    I'll be praying for you and your family.

    *hugs*
    Gail
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    Don't know what to say
    Lisa,

    I really don't know what to say. I has hoping Dr Lenz would just breeze into that room and tell you he had the perfect solution for you. I am praying that the next oncologist you have a consultation with has some good ideas for you.

    You said you searched for a trial within 500 miles from your house. I know it's a lot to travel further from that but if you should find any trial within the NY/NY/CT area you are more than welcome to bunk here as long as you need with our family. We would greet you with open arms.

    I hope you have/had a nice relaxing weekend and enjoy the time with family.

    Love and many many hugs to you,
    Amy
  • mommyof2kds
    mommyof2kds Member Posts: 519
    mom_2_3 said:

    Don't know what to say
    Lisa,

    I really don't know what to say. I has hoping Dr Lenz would just breeze into that room and tell you he had the perfect solution for you. I am praying that the next oncologist you have a consultation with has some good ideas for you.

    You said you searched for a trial within 500 miles from your house. I know it's a lot to travel further from that but if you should find any trial within the NY/NY/CT area you are more than welcome to bunk here as long as you need with our family. We would greet you with open arms.

    I hope you have/had a nice relaxing weekend and enjoy the time with family.

    Love and many many hugs to you,
    Amy

    Thinking of you lisa.
    Thinking of you lisa. Sending positive thoughts your way. PEtrina