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

2

Comments

  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    Brooks is right!
    What about Mexico? Maybe those meds your insurance won't cover would be an option there.

    Don't worry about making us sad. We're sad because we love you but it would hurt so much not to be a part of this time too.

    We'll keep watching for other things and you keep searching, too.

    Enjoy your weekend and have a wonderful day in church tomorrow. One thought: Have you asked the elders to anoint you with oil and have them pray over you?

    Love and prayers,
    Diane
  • geotina
    geotina Member Posts: 2,111 Member
    Dear Lisa
    I was just checking the board and saw your post. I'm so sorry you are having to go through this. I was hoping these doctors would have something up their sleeve to help you out. You can never give too much detail, with this disease we must learn and in that learning process need to hear the good along with the not so good, it keeps us on our toes to face the future. I'm sorry you are not getting the family support you need and deserve.

    The financial end of cancer drives me crazy. Unless you are living in a tent or in your car you are out of luck. I just don't understand why medicine has to cost so much and just because you work you are screwed.

    Take care Lisa - Tina
  • Brenda3.16
    Brenda3.16 Member Posts: 209
    geotina said:

    Dear Lisa
    I was just checking the board and saw your post. I'm so sorry you are having to go through this. I was hoping these doctors would have something up their sleeve to help you out. You can never give too much detail, with this disease we must learn and in that learning process need to hear the good along with the not so good, it keeps us on our toes to face the future. I'm sorry you are not getting the family support you need and deserve.

    The financial end of cancer drives me crazy. Unless you are living in a tent or in your car you are out of luck. I just don't understand why medicine has to cost so much and just because you work you are screwed.

    Take care Lisa - Tina

    Lisa,
    Sorry to hear your

    Lisa,

    Sorry to hear your news. I know you will move on quickly and figure out the next move. Your knowledge amazes me. I have learned so much from reading your postst. You are in my thoughts and prayers.

    Brenda
  • Paula G.
    Paula G. Member Posts: 596
    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

    Crap
    Lisa,
    John told me about your post. It makes me sick. There was someone at the infusion center that did mention doing Oxy on a slower drip. John had a bad reaction to it also. It did work for him. He still has the Folfri to go on if the Xeloda and Avastin fail.

    I hate to hear that people have to search and search and insurance won't pay and Damn it it make me sick. We are thinking of you and keep us informed. Love Paula
  • lisa42
    lisa42 Member Posts: 3,625 Member
    hard to stay away!
    Hello,

    Here I said I'd take a weekend break from the board, but here I am checking in! I just wanted to quickly share that Dr. Fanta from UCSD called me this morning. Knowing that my insurance hadn't approved me for the upcoming appt on Tuesday, he thought he'd just call me to discuss and save me the drive and appt. expense. He feels strongly that the Gemzar/Xeloda regimen that Dr. Lenz recommended (but that isn't FDA approved for colorectal cancer)that he can get insurance approval. It has so much data from studies to back it up that by his writing a letter to the insurance and getting all three drs. to sign it. He said he'll be right on that Monday and to not worry.

    What a difference hearing those words made! I can relax and enjoy my weekend.

    Hugs to you all-
    Lisa (I'll pm some of you Monday)
  • luv3jay
    luv3jay Member Posts: 533 Member
    Oh Lisa! I kept reading
    Oh Lisa! I kept reading your post hoping I would get to the *good news*...but it never came. My heart is heavy for you right now, but you have such a strong spirit...I feel like I'm not being strong with you. I'm not understanding why insurance companies won't look past money and see the human side of treatment. In the meantime, I will continue to pray for your strength and healing.

    -Sheri
  • luv3jay
    luv3jay Member Posts: 533 Member
    Oh Lisa! I kept reading
    Oh Lisa! I kept reading your post hoping I would get to the *good news*...but it never came. My heart is heavy for you right now, but you have such a strong spirit...I feel like I'm not being strong with you. I'm not understanding why insurance companies won't look past money and see the human side of treatment. In the meantime, I will continue to pray for your strength and healing.

    -Sheri
  • just4Brooks
    just4Brooks Member Posts: 980 Member
    lisa42 said:

    hard to stay away!
    Hello,

    Here I said I'd take a weekend break from the board, but here I am checking in! I just wanted to quickly share that Dr. Fanta from UCSD called me this morning. Knowing that my insurance hadn't approved me for the upcoming appt on Tuesday, he thought he'd just call me to discuss and save me the drive and appt. expense. He feels strongly that the Gemzar/Xeloda regimen that Dr. Lenz recommended (but that isn't FDA approved for colorectal cancer)that he can get insurance approval. It has so much data from studies to back it up that by his writing a letter to the insurance and getting all three drs. to sign it. He said he'll be right on that Monday and to not worry.

    What a difference hearing those words made! I can relax and enjoy my weekend.

    Hugs to you all-
    Lisa (I'll pm some of you Monday)

    See what happens when you NEVER stop believing
    I KNEW SOMTHING GOOD WAS GOING TO COME!!!

    Life is funny sometimes
    Brooks
  • Lisa,
    Sorry to hear your

    Lisa,

    Sorry to hear your news. I know you will move on quickly and figure out the next move. Your knowledge amazes me. I have learned so much from reading your postst. You are in my thoughts and prayers.

    Brenda

    This comment has been removed by the Moderator
  • Aud
    Aud Member Posts: 479 Member
    lisa42 said:

    hard to stay away!
    Hello,

    Here I said I'd take a weekend break from the board, but here I am checking in! I just wanted to quickly share that Dr. Fanta from UCSD called me this morning. Knowing that my insurance hadn't approved me for the upcoming appt on Tuesday, he thought he'd just call me to discuss and save me the drive and appt. expense. He feels strongly that the Gemzar/Xeloda regimen that Dr. Lenz recommended (but that isn't FDA approved for colorectal cancer)that he can get insurance approval. It has so much data from studies to back it up that by his writing a letter to the insurance and getting all three drs. to sign it. He said he'll be right on that Monday and to not worry.

    What a difference hearing those words made! I can relax and enjoy my weekend.

    Hugs to you all-
    Lisa (I'll pm some of you Monday)

    Lisa, I was frustrated for
    Lisa, I was frustrated for you and now hopeful that Dr. Fanta can get that approval for you.
    In the Light,
    Aud
  • sfmarie
    sfmarie Member Posts: 602
    lisa42 said:

    hard to stay away!
    Hello,

    Here I said I'd take a weekend break from the board, but here I am checking in! I just wanted to quickly share that Dr. Fanta from UCSD called me this morning. Knowing that my insurance hadn't approved me for the upcoming appt on Tuesday, he thought he'd just call me to discuss and save me the drive and appt. expense. He feels strongly that the Gemzar/Xeloda regimen that Dr. Lenz recommended (but that isn't FDA approved for colorectal cancer)that he can get insurance approval. It has so much data from studies to back it up that by his writing a letter to the insurance and getting all three drs. to sign it. He said he'll be right on that Monday and to not worry.

    What a difference hearing those words made! I can relax and enjoy my weekend.

    Hugs to you all-
    Lisa (I'll pm some of you Monday)

    Fantastic News
    I am glad you have doctor willing to go to bat for you! Awesome.
    Enjoy the weekend. Marie
  • linandtom
    linandtom Member Posts: 67
    lisa42 said:

    hard to stay away!
    Hello,

    Here I said I'd take a weekend break from the board, but here I am checking in! I just wanted to quickly share that Dr. Fanta from UCSD called me this morning. Knowing that my insurance hadn't approved me for the upcoming appt on Tuesday, he thought he'd just call me to discuss and save me the drive and appt. expense. He feels strongly that the Gemzar/Xeloda regimen that Dr. Lenz recommended (but that isn't FDA approved for colorectal cancer)that he can get insurance approval. It has so much data from studies to back it up that by his writing a letter to the insurance and getting all three drs. to sign it. He said he'll be right on that Monday and to not worry.

    What a difference hearing those words made! I can relax and enjoy my weekend.

    Hugs to you all-
    Lisa (I'll pm some of you Monday)

    Xeloda and ?
    Ask dr about using Xeloda - which is 5FU in pill form and Avastin. Folfiri plus Avastin worked for you and 5FU has been used for years for colon cancer. Avastin cuts off blood supply to the tumors - and they have to have blood supply to grow. I'm going to ask our dr our next visit if he is using this combination for others. He has always said it is a matter of finding a combination that will work for Tom. He has not had the Xeloda in this form but had the 5FU pump when on Folfiri. He hated the pump so taking it in pill form each day would be much better for him. Will not hurt to ask about any combination - especially ones that are already FDA approved. Look at the Vanderbilt Cancer Clinic and Sarah Cannon Cancer Researach here in Nashville as they have many clinical trials. Check on the clinicaltrials.gov website and just seach on these clinic names. You'll see all that they have. You can refine the search and only search active/open trials. Come to Nashville....we'll be sure you have a place to stay and get you to treatment. Read all eligible req and not eligible...as this makes a big difference what you can or cannot participate in. Don't give up Lisa....there are a lot of trials out there. Just got to find a doctor who will take the time to find one that fits you. Thinking and praying for you today. Beautiful weekend in Nashville....60 degrees!! Going outside now to enjoy! Hope you found peace this weekend and enjoy time with your family.
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    lisa42 said:

    hard to stay away!
    Hello,

    Here I said I'd take a weekend break from the board, but here I am checking in! I just wanted to quickly share that Dr. Fanta from UCSD called me this morning. Knowing that my insurance hadn't approved me for the upcoming appt on Tuesday, he thought he'd just call me to discuss and save me the drive and appt. expense. He feels strongly that the Gemzar/Xeloda regimen that Dr. Lenz recommended (but that isn't FDA approved for colorectal cancer)that he can get insurance approval. It has so much data from studies to back it up that by his writing a letter to the insurance and getting all three drs. to sign it. He said he'll be right on that Monday and to not worry.

    What a difference hearing those words made! I can relax and enjoy my weekend.

    Hugs to you all-
    Lisa (I'll pm some of you Monday)

    YEAH!
    I am so happy I kept reading. I was so disappointed for you, and with so many posts I almost didn't read all the way through to the end. This is great news. I am glad you have a doctor that will fight for you with the insurance companies - and not just one, but three that will do it!

    Have you taken Xeloda yet at all? Even though it is very much like 5-FU and most people have about the same end results, some people do much better on one than the other. And in those cases it is often Xeloda that works better for certain patients. Combined with a new drug you haven't tried, it could be just the combo for you!
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    lisa42 said:

    hard to stay away!
    Hello,

    Here I said I'd take a weekend break from the board, but here I am checking in! I just wanted to quickly share that Dr. Fanta from UCSD called me this morning. Knowing that my insurance hadn't approved me for the upcoming appt on Tuesday, he thought he'd just call me to discuss and save me the drive and appt. expense. He feels strongly that the Gemzar/Xeloda regimen that Dr. Lenz recommended (but that isn't FDA approved for colorectal cancer)that he can get insurance approval. It has so much data from studies to back it up that by his writing a letter to the insurance and getting all three drs. to sign it. He said he'll be right on that Monday and to not worry.

    What a difference hearing those words made! I can relax and enjoy my weekend.

    Hugs to you all-
    Lisa (I'll pm some of you Monday)

    Hi Lisa,
    I am sorry that you

    Hi Lisa,

    I am sorry that you didn't get the news you wanted to hear when you met with your doctor, but I knew your diligence + hard work would pay off..... I was so happy to read this post which said that Dr. Fanta (should that be Dr. Fantastic?) has a solution to the issue. I know what a difference words like his can mean + I hope your weekend is much brighter with this news. Thanks so much for updating us despite your desire to have a break.
  • kristasplace
    kristasplace Member Posts: 957 Member
    luv3jay said:

    Oh Lisa! I kept reading
    Oh Lisa! I kept reading your post hoping I would get to the *good news*...but it never came. My heart is heavy for you right now, but you have such a strong spirit...I feel like I'm not being strong with you. I'm not understanding why insurance companies won't look past money and see the human side of treatment. In the meantime, I will continue to pray for your strength and healing.

    -Sheri

    Distressing
    Lisa, this is such distressing news. You know me, i'm going to agree with Brooks suggestion full heartedly. The time has come to take drastic (and expensive) measures that can change all of this. I recommend Gerson, of course. With a 90% success rate treating terminal patients, it just may be worth the $5500 per week. It's easy to say it's only money when you don't have any, but this is your life. We can run a fund-raiser for you if we have to. I'd be more than willing to help organize that. Let's send you to Mexico, girl! Email me!

    Hugs,
    Krista
  • jscho
    jscho Member Posts: 62
    lisa42 said:

    hard to stay away!
    Hello,

    Here I said I'd take a weekend break from the board, but here I am checking in! I just wanted to quickly share that Dr. Fanta from UCSD called me this morning. Knowing that my insurance hadn't approved me for the upcoming appt on Tuesday, he thought he'd just call me to discuss and save me the drive and appt. expense. He feels strongly that the Gemzar/Xeloda regimen that Dr. Lenz recommended (but that isn't FDA approved for colorectal cancer)that he can get insurance approval. It has so much data from studies to back it up that by his writing a letter to the insurance and getting all three drs. to sign it. He said he'll be right on that Monday and to not worry.

    What a difference hearing those words made! I can relax and enjoy my weekend.

    Hugs to you all-
    Lisa (I'll pm some of you Monday)

    these drugs sound promising
    Hi Lisa, sorry to hear about the financial/insurance issues, but I looked up the gemzar/pazopanib drugs and they seem full of promise. Gemzar appears to have only mild side-effects and should act cooperatively with xeloda (both create base deficiencies for replication, but for different bases). The pazopanib targets growth receptors like avastin does, so acts quite differently. It has a nice track record of slowing progression (by factors of two!). This sounds like a potent cocktail, attacking cancer cells on multiple fronts, and I sincerely hope your doctors can get insurance to cover them.

    Best,
    Jeremy
  • lisa42
    lisa42 Member Posts: 3,625 Member

    Distressing
    Lisa, this is such distressing news. You know me, i'm going to agree with Brooks suggestion full heartedly. The time has come to take drastic (and expensive) measures that can change all of this. I recommend Gerson, of course. With a 90% success rate treating terminal patients, it just may be worth the $5500 per week. It's easy to say it's only money when you don't have any, but this is your life. We can run a fund-raiser for you if we have to. I'd be more than willing to help organize that. Let's send you to Mexico, girl! Email me!

    Hugs,
    Krista

    Brooks and Krista
    Hi,

    I've thought of the place in Mexico, but not really that seriously to be honest.
    I wrote an update of how I got a call from Dr. Fanta at UCSD Sat. a.m. & he thinks we'll get the Gemzar approved to take with Xeloda. Gemzar (gemcitabine) has some really good prospects in the couple of studies already done on it. So, that's what I'm waiting to hear about this week. Krista, I have been changing a lot of my diet and have started reading the Anticancer: A New Way of Life book that Nanab (Raquel) has talked about. It makes so much sense.

    I will keep in touch and let you know what happens this week.

    Take care!
    Lisa
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    lisa42 said:

    Brooks and Krista
    Hi,

    I've thought of the place in Mexico, but not really that seriously to be honest.
    I wrote an update of how I got a call from Dr. Fanta at UCSD Sat. a.m. & he thinks we'll get the Gemzar approved to take with Xeloda. Gemzar (gemcitabine) has some really good prospects in the couple of studies already done on it. So, that's what I'm waiting to hear about this week. Krista, I have been changing a lot of my diet and have started reading the Anticancer: A New Way of Life book that Nanab (Raquel) has talked about. It makes so much sense.

    I will keep in touch and let you know what happens this week.

    Take care!
    Lisa

    Good news
    Lisa,
    Good news from Dr. Fanta. I am so hopeful for you. We are reading Anticancer as well. **** is committed to starting it when he gets off chemo in March.

    Thanks for keeping us updated. I thought of you and prayed for you a lot today. :)

    Aloha,
    Kathleen
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    That sounds GREAT!
    Wow, what a nice and dedicated doctor! That's great, too, that he called to give you some peace of mind over the weekend.

    Praying the letter sways the insurance company and that this treatment works, really works for you!
  • HollyID
    HollyID Member Posts: 946 Member
    lisa42 said:

    hard to stay away!
    Hello,

    Here I said I'd take a weekend break from the board, but here I am checking in! I just wanted to quickly share that Dr. Fanta from UCSD called me this morning. Knowing that my insurance hadn't approved me for the upcoming appt on Tuesday, he thought he'd just call me to discuss and save me the drive and appt. expense. He feels strongly that the Gemzar/Xeloda regimen that Dr. Lenz recommended (but that isn't FDA approved for colorectal cancer)that he can get insurance approval. It has so much data from studies to back it up that by his writing a letter to the insurance and getting all three drs. to sign it. He said he'll be right on that Monday and to not worry.

    What a difference hearing those words made! I can relax and enjoy my weekend.

    Hugs to you all-
    Lisa (I'll pm some of you Monday)

    Lisa...
    So glad to read

    Lisa...

    So glad to read this! What dedicated physicians you have! I love that they're going to write the ins. company and tell them to approve it. I really, really pray that this works for you!

    I hope your daughter passes her test today!

    Love to you

    Holly