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reporting in from Nashville

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hey Everybody! This is for all of you who were following my posts about going to seek alternate treatment of Lovastatin and interferon for cancer treatment. This, by the way, is something you really should save for if/when the "standard" treatments have run out/failed. So, here I am! I'm writing this from the hotel lobby's computer where I'm staying here in Nashville, TN (Brentwood, TN technically)(Mainstays Suites, right next door to the office- the Baymont Inn is another hotel right next door- rates are not bad- check them out if you're planning on visiting Dr. Cantrell). Anyhow...I had my 2nd and final appt. w/ Dr. Cantrell earlier today. Everything went very well and I really liked Dr. Cantrell. He's a very warm, welcoming, and caring person. I'm starting on the Lovastatin tonight & will build up to my full dose (which will take about a week and a half for my dose, which is based on weight).
After that, I'll add in the interferon injections and will inject myself 3 times a week for 8 weeks. At that point, I'll get scanned again and then we'll see what's happened to my tumors!

Funny, as I was getting ready to leave the Neoplas Innovation office, a woman and her husband came in for the next appt. The woman looked at me and asked me if my name was Lisa and did I post on the cancer board. Of course I answered yes, and she told me I was the reason they were there! In fact, Dr. Cantrell told me he had heard my name mentioned by 3 or 4 patients in the past couple of weeks. That's so exciting to me!! (I've never been famous before-lol!)
If any of you out there reading this are the patients that have seen Dr. Cantrell, I'd love to hear from you! If you'd rather not post here, you can send me a private message via the board's private messaging system (go to CSN Home, then New Message, then type it to lisa42).
I wish you all nothing but the best!! It also might be interesting to compare our journeys through this and to be of support to each other.

Dr. Cantrell was very thorough, open, and honest about everything- he said he knows how this treatment has worked with other patients, but that of course everyone is different. He belives I'm a very good candidate for this treatment, but of course no one knows what will actually happen until we try it. He did say that sometimes lung mets are kind of tough, which is what I'm mostly fighting, but that I could still hopefully expect good results.
By the way, a couple of you asked about his success with bone mets. Although I don't have any bone mets, I did ask about that so that I could report back to you. He did say he's had patients who have had bone mets- from colon cancer and other cancers- and that, yes, he has had some good success in some patients with that. Brain mets are really the only area of mets that he says outright don't have a good response (something having to do with a barrier within the brain that doesn't allow certain chemicals/medications to cross that barrier, which doesn't allow certain meds to work as well on brain mets). With that said, he also did say that he still does have some patients with brain mets, and that they knew this info going into it & were still wanting to do the treatment to work on "other stuff" within them.

I'll check back with you all in a couple of days when I'm home and settled again.

Take care and keep the chin up everyone- THERE IS HOPE, whether it's through this treatment or other clinical trials or other offline treatments- don't ever take "there's nothing more we can do" as an answer- keep seeking new alternatives out! THERE IS ALWAYS HOPE and those people who keep that hope alive and going are often the ones who pull through this cancer beast the best.

Cyberhugs to all-
Lisa

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

I'm expecting a wonderous miracle Lisa! Still praying for you to be fully and forever healed.

Much love and God bless,
Diane

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Diane,

Thank you- I know and believe that you really do faithfully pray for me and many others here on the website. I appreciate that and I wish for and pray for blessings for you and your family.

Hugs,
Lisa

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

Good to hear from you and what wonderful news. When will you be home? I still owe you a lunch. LOL
I hope the rest of the trip goes as well.

Life is funnysometimes
Brooks

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

So glad to hear from you, you really sound happy through your posting, I can feel your smiles! I am so happy to hear you like the doctor, and you got me wanting to see him as well! He does liver mets? I really hope this treatment works out for you, if so, I'm going there! lol...I don't want to be on maintenance chemo, I want more...though, I don't know about injecting myself with anything, yowch! I'd be chicken too. I do have a friend though who is a nurse and could probably do it for me though lol...

Hope you have some fun while in Nashville, and hope you have a safe trip back!

Hugsss!
~Donna

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Donna,

Yes, I was smiling while writing it! Yes, he does treat for liver mets for sure. Also bone mets, as some people had asked me about on another thread before (although the Dr. noted that treatment on bone mets may take longer & that the liver usually responds sooner). Lungs mets, he noted, are also a bit tougher than in some places, such as the liver. He does say on his website that brain mets don't respond very well, due to the barrier that the brain has affecting some medications that don't cross over that barrier into the brain very well (which is the body's way of protecting the brain from substances that might be harmful). He does still have a few patients that have brain mets, and they still decided to pursue this avenue of treatment after being fully informed of the limitations.

Hugs,
Lisa

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Brooks,

Thanks for the reply and I made it home yesterday (Saturday) afternoon. Slept in this a.m. and am still sitting here in my robe as I type (yikes- it's almost 1 in the afternoon- better go get dressed and get going with my day)
We'll do the lunch sometime- probably sometime after the holidays & maybe we can get others in the area together too.

Take care-
Lisa

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

Hi Lisa, Sounds good to me. Let me know when you're ready. Is that Mexican restaurant still open in Bonsal ? (The one across from the Arco). I used to love there food!! Yum. Haven’t been there in years. Used to sit outside in the back area and eat outside. I’m making myself hungry!!

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Brooks,

Yes, Estrella's- the Mexican restaurant across from the Arco is still open. I'm told the center it's in will eventually be torn down when they expand Hwy 76, which will probably be in another year. We'll hopefully get to either go there or somewhere else in January!

Take care!
Lisa

AnneCan
Posts: 3692
Joined: Oct 2009

Thanks very much for sharing your experiences, Lisa. You are helping many, not only by sharing what you have learned but with your "take charge" attitude and inspirational words.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Hi Lisa

I can feel the warmth in your post and you sound so good and confident!

You're a trendsetter - but you have always been so!

You are provididng hope and inspiration to so many people here - as you always have.

I loved your story about the lady recognizing you from the Cancer board - now you're famous too! How interesting that the new Dr. is getting "referral" patients from you.

YOU are the Gift that keeps on giving!

Love you - Craig

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

that all sounds good Lisa. thank you so much for checking in.

Good Luck

mags

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Craig,

Thanks for the post- you are always so kind! How are YOU feeling lately???

Hugs,
Lisa

thready's picture
thready
Posts: 475
Joined: Sep 2009

Lisa,
It is good to hear from you! You are bringing hope to so many, and you are so brave. We hope that this is what it takes to make you well and rid of cancer. Know that I will be praying fo you.

Take care,
Jan

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

Thank you for taking so much time and care to share this journey with us.
This is indeed the season of hope.
Peace and blessings... Rob; in Vancouver

P_I_T_A's picture
P_I_T_A
Posts: 133
Joined: Oct 2009

Glad everything is going well at the Dr. Don't forget to treat youself to the local flavor, hit some of those honky-tonks while you're in Nashville!

-DJ

TxKayaker's picture
TxKayaker
Posts: 177
Joined: Jun 2009

Make it to Printer's Alley for some down home blues.

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi,

Thanks for the tip! I didn't see Printer's Alley, as you recommended, but my sis in law and I did walk down the main downtown area in Nashville and ate in a place called Rippy's Bar and Grill- had some great pulled pork sandwiches and listened to some fun live music.
My nephew, who lives there, is a small-scale music producer and has a studio right on music row (bradhillmusic.com). I got to visit him while he was at work recording a CD for someone. Lots of fun to finally get to see what he does.

Annabelle41415's picture
Annabelle41415
Posts: 6249
Joined: Feb 2009

So glad that you made it there ok and things are going well with Dr. Cantrell. Good luck in this new journey of yours and I'm glad that you are being so proactive and searching out other means of curing. Let us know how your first treatment goes. I am anxious to hear what their procedure is in all this. Thinking of you always.

Kim

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

glad to hear the news and to see you are excited about it.i am only 80 miles north of you in ky.to bad i dont have the gas money to come visit you.if you get a chance go to the opryland hotel it is awsome around the holidays.sorry i missed you and Godbless....johnnybegood

snommintj's picture
snommintj
Posts: 602
Joined: Mar 2009

I've been doing some research on the interferon he's using. If I've been told correctly it is interferon-2a. I was also told that it was very expensive. Will your insurance cover it? If not, does he get some kind of discount. I was told that one treatment for me would be 7000. I hope this is incorrect, did he say which interfeon he's using?

DAN R
Posts: 4
Joined: Nov 2009

hi the inteferon cost about $1200 a month. if your insurance doesn't cover it and you can't afford it, the drug company that makes it has a commit to care program that will give it to you. you have to be within certain finincial guidelines, about $50,000 for a family of 2. i just got a month of the drug while i was waiting for my insurance to approve me.

Annabelle41415's picture
Annabelle41415
Posts: 6249
Joined: Feb 2009

I was wondering how insurance would pay for something that is not given to patients on a regular basis and I'm sure we would make too much for some discount but not enough to sustain us as we are facing enormous deductibles for our insurance plus paying a monthly premium. I think that between the deductible we have to pay plus a premium we still wouldn't qualify. Just wondering about insurance coverage too. I know that my insurance wouldn't cover Nuelasta (shot for low blood counts) or Emend (anti neausea meds), plus I have to pay every time I have lab work done and for every prescription. As of the first of the year, things that we pay go up 7 times what they are now. Just curious.

Hope all is going well for you tonight.

Hugs!
Kim

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi,

snommintj- I'm not sure where you got the $7,000 figure- maybe that was figuring with having to pay for the interferon cash, along with the Dr. visits over time?
This first initial visit, which consisted of two days of visits, two hours each (and he spent a total of 4 hours with me with his undivided attention & no one else even sitting out in the waiting room)- cost me a little over $900 (with a 7% discount for paying it all at once and for paying with a debit card or check). He gives a 5% discount of the main price for paying right then with a credit card and an additional 2% discount for paying with a debit card or a check. He has no control over the cost of the drugs, but he does recommend the type of interferon that is the most cost effective and the most likely to be covered by insurance. The Lovastatin is not covered by my insurance because it is FDA approved for cholesterol, not cancer (if you have high cholesterol, then your insurance probably would cover it). Anyhow, it is VERY CHEAP even just paying cash. I called Rite Aid first, because that's where I get my medicines when at home, and they quoted me $65.99 for my first month's worth. Next, I called the Wal Mart pharmacy there... $8, literally just eight dollars! Cheaper than what my insurance copay for medicines! Wal Mart is where I'll be getting it from.
It was just Friday that the info for the interferon was submitted to my insurance, so I'll be following up Monday and Tuesday to see about coverage. It is covered for cancer, but not specifically colon cancer, so it is actually possible that they'll deny it. The cash cost of it varies (depending upon your dosage, which depends upon your weight) anywhere from $800-$1300 a month, is what I was told. Dr. Cantrell also said that some insurances will deny it outright, but may end up covering it after all when reasons are submitted as to why it is needed. He said many states have laws now that when a patient has gone through all standard treatments and has "failed" on standard treatments that the insurance companies must pay for clinical trials and "reasonable off market treatments" (which this qualifies as). It just may take a little convincing by the doctor writing a letter, etc. to convince them that this is a reasonable "next step" treatment that should be covered.
I have Aetna HMO and Dr. Cantrell said it may do nothing, but it certainly couldn't hurt to try to submit a form to my insurance for reimbursement of what I'm paying for these Dr. visits. I hadn't even thought of trying since it's an HMO, but you never know, so I'm going to try to submit for reimbursement.
I also have heard about from Dr. Cantrell and DAN R. (who went earlier in Nov) about how the company that makes the interferon (can't currently remember what it is) has a foundation that helps out when people's insurance companies don't pick up the cost. The help they offer is based on your income. I imagine I wouldn't qualify for that, but if it comes down to me not getting coverage, I will definitely seek them out to see if I could at least get at least some financial help, even if it isn't for the full amount.

Annabelle41415's picture
Annabelle41415
Posts: 6249
Joined: Feb 2009

Very interesting and that is nothing compared to what my doctors have been charging me. I hope that you are doing well and all is going according to plan. It sounds like you are in very good hands with Dr. Cantrell and he seems like a very pleasant, and worthy doctor, especially when he spends that kind of quality time with a patient. That has to make you feel so much better that he is a good doctor and has bedside manners at the same time. That is a rare find with doctors. Thanks for the updates.

Kim

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi johnnybegood-

It would have been fun to see you there! I did see the Opryland Hotel and it was amazing! It was pouring rain when we were there, so I took pictures from under my umbrella of the lit up trees outside and the lifesize nativity scene. It was so impressive inside, as well. The shops and restaurants were nice, but it was the giant arboretum (or whatever they called it)- huge rooms and rooms of trees, gardens, rivers that you could actually go for a boat ride on, etc.- very impressive). We paid $18 to park in their lousy parking lot, though! (later Dr. Cantrell told me we could have parked for free in the mall parking lot next to it. Oh well, live and learn, plus it was pouring, so we really wouldn't have wanted to walk too far in the rain. But maybe to save the ridiculous parking fee we would have!)

Lisa

ittapp's picture
ittapp
Posts: 385
Joined: Jun 2009

Lisa, you are making me so excited about future treatments if needed. I also have the question on how to pay for this? I know John was asking this question. Will he take medicaid? I will be seeing an Interventional Radiologist Tues.again, he wanted me to come back if the first line of treatment stopped working. He had mentioned Sir spheres. I will see where that takes me for now. I am so proud of you Lisa for your courage and kindness to keep us all informed. I have a really good feeling about this treatment.Keep us posted on how you are feeling with this medicine. God Bless you, Patti

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Patti,

See what I wrote back to John (snommintj) about payments and insurance.
I'm pretty sure, unfortunately, that he won't take medicaid, although I shouldn't say that because I never asked (since I'm not on medicaid). I know he doesn't work with insurance companies (so if your insurance were to cover his Dr. visits, we'd have to submit for reimbursement- his office doesn't submit to them.) You can certainly call or email his office and ask about medicaid. Maybe they some kind of discount or something for patients on that- I don't know.

I will definitely keep you and everyone informed of how things are going.

Take care Patti-
Lisa

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

Thanks so much for sharing all this info with all of us Lisa. Keeping you in my heart as you go through all this and yes 'tis the season.

all the best, Leslie

GOOFYLADIE's picture
GOOFYLADIE
Posts: 233
Joined: Aug 2009

Yes, Santa! We Believe!!!

You are a survivor, a fighter, a friend and I can say a lover because you have shown your fears, your hopes, your anger you have shared it all with this board wide open that my friend is true love and compassion. God Bless you, Make it a great Day!!!
Goofyladie aka (Cass)

andyc56
Posts: 42
Joined: Oct 2004

Lisa, thanks for your report. Sorry the weather was so cold for your visit! As I posted in another thread, Dr. Cantrell is indeed a warm and caring doctor and person. Good luck with the treatment; my wife is one of the small minority who have muscle and liver issues with statin drugs. She had surgery two weeks ago to remove a malignant brain metastisis and will probably try irinotecan again in a few weeks, but we are keeping Dr. Cantrell's treatment (at a lower dose) as an option down the road.

FWIW, our insurance covered the interferon-alpha except for a small co-pay. Many states (including our state, TN) have insurance laws requiring coverage of off-label use of certain drugs for cancer treatment, if there is scientific literature supporting it and other treatments have not worked.

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Andy,

I'm glad your interferon was covered by the insurance. Yes, I heard how some states do have these insurance laws. At this moment, I don't know what the laws are about that here in California, but you can bet I'll be checking that out this coming week,
Thanks for the tip to everyone about that! I'm sorry your wife had issues with muscles and liver. I know they will be checking carefully for that & I have been told what to watch out for. Again, sorry your wife had problems with that. Is she still able to take the treatment?
I wish her well!

Lisa

grammadebbie's picture
grammadebbie
Posts: 429
Joined: Jun 2009

Dearest Lisa,

I was so happy to see your post today. I have been praying for you and was watching for your post. I'm so glad that everything is going so well. I so appreciate you sharing with us, you are amazing... Thank you, thank you. I will continue to lift you in prayer and think of you often.

God Bess You,
Debbie (gramma)

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tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Lisa,

Sounds like this trip was a very good thing for you! Thanks for remembering to even ask about other issues, so you could give that info to those who might need it.

We can't wait to hear what a wondrous miracle is going to happen to you!

*hugs*
Gail

Fight for my love
Posts: 1530
Joined: Jun 2009

Hi Lisa,it is really good to see your update.I have prayed a good outcome from this treatment and I am hoping your lung will be all cleared up.I will keep praying for you.Best luck with it.Take care.

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

Lisa, I am hoping that this works for you. I will keep watching the board for updates. It does sound good. Thinking of you, Paula

KFen725's picture
KFen725
Posts: 108
Joined: Jul 2009

Hi, Lisa! I have been keeping my eyes on the boards looking to see your update on the Teneessee trip. Praying that mighty and wonderful things happen for you with this new treatment! Like Diane, I am also praying for a wonderful and complete healing for your body.

Love,
Kelly

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Glad to hear you made it to Tenn praying for you as always!

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

Lisa,
This is all so exciting! Thank you for taking the time and letting us know the details. I love that you have been mentioned by various people and talked about as the reason people are reaching out and making the attempt to look at and do something different with their treatments! It is so way cool that this community expands out beyond ourselves and touches others in this fight against cancer! yeah for us! All the best to you in the upcoming weeks, prayers and good thoughts that this is it or part of IT!

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Thanks to everyone who replied! I'm now home again- got home yesterday (Saturday) at about 3:00 p.m. Went to the Christmas parade in my town with the family and had a fun time.
I'll keep you all updated on how the treatment goes.

Love to all-
Lisa :)

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

Just wanted to welcome you home... Sounds like you had a wonderful time. Good goig!!!

Brooks

Annabelle41415's picture
Annabelle41415
Posts: 6249
Joined: Feb 2009

Glad that you made it home safely. Wow that seemed like such a short trip. How are you feeling, besides tired from all that traveling?

Kim

jillpls's picture
jillpls
Posts: 241
Joined: Mar 2008

Hi lisa and thank you so much for keep us all abreast about your journey. You are very brave and I admire your perseverance. Thank you. I will pray for you that you will go into NED and stay there. Good for you and stay strong!!
God bless you
Jill

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

Thank you for sharing the information about your trip to Dr. Cantrell. I have looked into it, and will be interested to see how things go. It certainly sounds promising and I am glad you have had a great experience so far. Wonderful that you have inspired others! I pray for a great Christmas for you and that this treatment works wonders. Keep us all posted. marie

JDuke's picture
JDuke
Posts: 443
Joined: Nov 2009

What a courageous and generous soul you have. I wish you the best with Dr.Cantrell. Sounds like you are in exceptional hands.
Blessings,
Joanne

usakat's picture
usakat
Posts: 625
Joined: Jul 2006

Hello Lisa,

I'm glad to read you are marching forward and trying the alternative therapy. I will continue to keep you steadfast in my heartfelt prayers, sending you many blessings for renewed health and lots of positive energy for well being. You have such a strong and lovely spirit - I believe that will carry you through.

Keep us posted. And I think what Christopher Robin said to Pooh perfectly applies to you, "Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.”

Breathe in hope and embrace life!

Hugs, Katie

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