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

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

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

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

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

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

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.

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.

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 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

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