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my scan results after 9 weeks of Dr. Cantrell's treatment

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

Hi Everyone,

I had my PET/CT scan Wednesday and got the scan report today. I did already mention on another thread how I was sent home after yesterday's scan with a CD of the scan images. I looked at it and saw some lit up spots on my lungs, liver, and what I thought might also be elsewhere. Here's some of the news written on my scan report:

"Previously identified innumerable pulmonary nodules have increased in size and number as well as intensity of uptake compared to the previous examination... Activity is also seen along the right hilum, suggestive of a nodal metastasis.
There is evidence of interval progression of malignancy within the liver as well. There are three new hypermetabolic foci within the liver, each measuring approx. 1 cm...
Focal progressive activity is also seen within the left posterolateral aspect of the rectum, measuring approx. 1.4 cm."

So, the summary is that I've got new stuff and old stuff growing in both lungs, the liver, and in my rectum.
Obviously, Dr. Cantrell's treatment of Lovastatin and interferon that I've been on since early December has not worked for me at all.
So... I see my regular oncologist Dr. Helton on Monday. I'm again sending my scan info to Dr. Fanta at UCSD- I've consulted with him before. I'm adding in a new doctor to the mix now- Dr. Lenz from USC in L.A. I'm already working on having my records faxed up to his office. I'm not sure how soon I can get in yet- he wants to look my info over and then his assistant will get back to me about getting in quicker than the March 15 appt date that had already been set up. I'll let you know how that goes.

Today was kind of a weird day in the fact that I'm about as unemotional to this kind of a scan report than I've ever been before. It was my youngest daughter's birthday and I was trying to not talk about any of my news (which is also why I'm writing this so late at night on the day I got the news- I tried writing a couple of times earlier today & then my daughter seemed to always be looking over my shoulder, so I just decided to wait.) She was off school today and she waited for me in the hospital waiting room when I went to pick up my scan report from the records room. I read the results before I came back out, and then didn't mention them at all. We had a nice day, just the two of us, down at the Oceanside Pier. Later at home this evening, we had the family meal, cake, opening of presents, etc. When we were on the pier, it was a beautiful day (sorry to rub it in to all of you covered under snow!) and we ate lunch at the restaurant on the end of the pier and had fun watching boats go by and watching pelicans dive into the ocean. It was good for me too, as I still feel amazingly calm about my news today. I was not feeling calm about it yesterday after I saw the images on the CD, but I somehow am tonight.

One more thought to those of you who were following my news of Dr. Cantrell's treatment in hopes that it might be something for you... well- I don't know what to say, except that Dr. Cantrell HAS had some patients who have done very well on it which is why I went to him in the first place, of course. I know of two other patients also on Dr. Cantrell's treatment who also had to stop the treatment within the last month. Of course I'm disappointed, as I really had high hopes for his treatment. BUT... onward and forward I go again. I imagine I will need to start something pretty quickly. Boy, do I dread the idea of more chemo- but I will do anything that I have to do to try to kick this cancer's grip on me.

Please don't lose hope- I haven't.

Hugs and thanks to all of you who have thought about me, inquired, sent me PM's, and those of you who have been praying for me-

Lisa

ann2008's picture
ann2008
Posts: 119
Joined: Nov 2009

I look at your picture and just feel the person looking back is a very calm, patient, giving person. So glad you have not given up after reading the scan results. Looks like you have a plan and I just want you to know that you are in my thoughts daily. I am up late too. Can't sleep. But I am glad to know your daughters day was good and good for you.Please keep us informed and know you have my prayers and hugs. Ann

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Dear Lisa,
You are quite a mom my dear. Isn't that like you to make sure your daughter had a beautiful day. Your love for your family will continue to give you strength. I will continue to pray for you on a regular basis.

Dick saw Dr. Lenz about a year ago. They are very good about returning calls. Dr. Lenz's assistant is fantastic. I am so glad you are hopeful that your cure is coming. You are a wonderful person who really let's the light shine.

Aloha,
Kathleen

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

Hi Kathleen,

I was amazed at how easy it has been to communicate to Dr. Lenz. You're right- his assistant Roger has been very good about getting back to me quickly and has been easy to talk to. If my local Dr's offices get all the records faxed to him today, he said I can get in to see him this coming Thursday.

How has Dick been doing?

chicoturner's picture
chicoturner
Posts: 285
Joined: Apr 2009

Thank you for sharing. You may get upset when we tell you how strong you are, but you are amazing. Please know that you are in my prayers and the fight you fight is for so many of us. We are blessed to call you friend. Keep up the fight, you are doing great. Your daughters will someday understand what a wonderful mom they have! Jean

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

It's inspiring to hear you say that, after all you've been through, you haven't lost hope. I think about you all the time and I'm really sad that your scans don't show the progress that you deserve. My son had a birthday this week - right in the middle of treatment. It was hard to drag myself down to his party, but I though of all the parents out there fighting cancer and trying to be there for their kids, and that helped me a lot. You're a great mom and a wonderful woman who is much love by many people.
Take Care,
Roger

linandtom
Posts: 67
Joined: Dec 2009

When we receive a report that is not the best of news we give thanks that we did not continue it for a longer period of time and waste time needed to move on to something else. Tom is also KRAS mutated. They are having some really good results with the MEK Inhibitors. The one he is on now is very potent as you well know. But since they have lowered the dose he has done much better. The good news is it is given by pill so no being hooked up to IV! And we don't have to go back to clinic for 3 weeks! He takes the pills twice a day. Scans are scheduled for March 1 with seeing doctor for results on March 3. If we don't see good results we will stop and move on to something else. Tom had great results on Folfiri with Avastin. We feel we will go back to this regimen and stop all clinical trials. This trial is our 3rd clinical trial and nothing has worked. I'm telling you this Lisa to say search, search and search again for all info you can find on the clinical trials you consider. If we had it to do over again....I don't think we would have gone with any of these from what we know now. We are trying to trust and be open to this trial working but it gets harder each day. The calm, peace, you felt yesterday, came from your God above. As I know you strong faith and in times like these it can only come from Him. Blessings to you today and as you search for your next steps.

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

Hi Linda,

Thanks for the comments and encouragement. Dr. Lenz said there is a clinical trial at USC for PARB inhibitors, but I've not heard about MEK inhibitors except for what you have talked about. I will google it and talk to my oncologist about it Monday.
I will look forward to hearing how Tom's scan comes out on March 1st. There's always lots of drama and waiting for results going on around here!

Onward and forward,
Lisa

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

I was so hoping, along with you, that Dr. Cantrell's treatment would have a positive effect on the cancer. I'm so sorry the opposite has happened. I'm at a loss for words right now I feel so badly for you. Well, its back to square one and finding a treatment plan for you. Take care - Tina

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

Lisa,
I really don't see how we could lose hope when we have you to spur us on. You are such a beautiful example of goodness, and it is not because of the cancer it is because of who you are.

I am glad you spent time with your daughter, and to spending at the ocean how fun! (Yes even in Texas we are covered with snow and cold but even the snow is beautiful)

I will keep you in my prayers as you move forward toward a cure.
jan

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

I am glad you are taking control and pushing to see different doctors to re-start your treatment. I do know that Dr. Lenz is quite booked, but press on asking for him to see you sooner.

I too am sad Dr. Cantrell's treatment did not work for you. This is a beastly cancer!

Thank you for sending the message of hope out there. I do know we all need HOPE in our lives and sometimes it seems as if it is not there.

Marie

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

Lisa, I am so very sorry to hear this news. I'm just heartbroken.

You haven't given up and I'm going to continue to pray for you to be healed.

Praying now.
Diane

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

Diane,

Like you said in your other post... Mountain, be moved. Maybe I just have to do some more climbing around that mountain first. I believe that my calm demeanor (which keeps amazing myself today) is truly from the Lord. I will let Him be the calm in my storm. I keep listening to and thinking of the Casting Crowns song "Praise You in This Storm".

Hugs,
Lisa

Kerry S's picture
Kerry S
Posts: 607
Joined: Dec 2009

Lisa,
You are my kind of woman. Keep fighting!!!!!!!

PhillieG's picture
PhillieG
Posts: 4888
Joined: May 2005

I'm sorry that the news was not the greatest but I am very happy that you had a wonderful day with your daughter. That IS what's it's all about I believe. Enjoying the time we have with loved ones, especially our kids. It doesn't get any better than that for me.

Glad to hear your attitude is good, I know it's not always easy but that is the one thing we all have control over.

PS: the snow is beautiful!
-phil

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

Hey Lisa, you do sound so calm...and I think that is the Lord guiding you on this journey. I know there will be something out there that will help you, it's just a feeling I have. I mentioned before cyberknife on the lungs...is that an option for you? also, I just did the Sir Spheres procedure on my liver, there is alway's that to fall back on. Let me know if there is anything I can do to help or research for you. Love ya girl, Patti

Brenda3.16
Posts: 211
Joined: May 2009

Lisa,

I am glad that you are feeling better today. You day with your daughter sounds awesome. I am glad that you have your next appointments being set up. I have always gotten a good feeling when I read your posts. I also have gotten a feeling that there is something out there that will help you and that God is right there with you.

Love,
Brenda

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

I am sorry to hear of the horrid beast still a travelin in you. It just infuriates me, overwhelms me that after 12 years so much of this still goes on. I have seen great strides but I want more I want to be a little greedy especially when it has to do with our lives. I am happy to hear you and your daughter enjoyed her birthday, seemed good for both of you. Life is good, God blesses us in strange ways even in the midst of pain. Keep pushing for your appointments and we will all be right here with you. Hugs Warm Hugs
Goofyladie (Cass)

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

My hopes were so high that Dr. Cantrell's treatment would be effective. I am so glad that you have not let your current scan results take away YOUR hope. The calmness that you feel is such a blessing, it will allow you to focus all your energy on the next steps of this journey. You are so strong and truly an inspiration to so many.
Your day with your daughter sounded lovely and I know it was good medicine for you. Those are truly the moments we live for.
Warm regards,
Joanne

lcarper2
Posts: 638
Joined: Dec 2009

I am sorry for the results you have gotten and admire your spirit and the love for your family. I to believe that this the path God wants you to take to grow and know he has a plan for you. I am praying for you and claim the healing he has for all of us...

Louann

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

Lisa I just want to let you know that you are the rock for many of us. The other day when I heard about my CT scan I remembered how strong you are and based my feelings on that "What would Lisa do?" I believe that in this short life that we teach others as we go along through this journey. You have taught me to be Strong yet Calm in a emotional storm, to be Brave when things are very Scary and to live for today while looking ahead to tomorrow. Remember you have many people pulling for you that you have touched throughout this crazy trip. My family and I are here whenever you need us.

Life is funny sometimes
Brooks

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

Hi Brooks,

Wow- I am amazed and touched at hearing that you would actually ask yourself "what would Lisa do?" "Strong yet calm in an emotional storm"... I like the way you put that. I thank the Lord that I've always been able to be that way. I think a few "Rocks" on this site would qualify- you included.

Thanks for your comments!
Lisa

PamPam2's picture
PamPam2
Posts: 376
Joined: Jan 2009

Hi Lisa
I am so sorry that Cantrell's treatment did not work for you. I was so hoping it would be the answer for you. I hope that whatever you try next helps you. I hear a lot of good things about Dr. Lenz on here, he has helped a lot of people. I am hoping things turn around for you soon.
Pam

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

You are an inspiration to us all.

I don't have any hard feelings that you were able to enjoy a wonderful outing with your daughter while I am shoveling snow, snow and more snow. Would gladly take double what we have gotten this season (over 80 inches) if it meant that the next treatment for you would be THE ONE!

Prayers coming your way that you can start a new treatment quickly and that is has success.

Marie

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

Well, that's not the news I know you wanted to hear. I can't put any kind of spin on this one, 'cause I ready what you wrote and understand enough.

I wish Cantrell's program had worked for you - I applaud you for your willingness to reach out and tackle something new and on the forefront. That's what makes you Lisa. Everyone here sure does appreciate what you have done and who you are.

You remind me of myself sometimes in how you can deliver bad news in one sentence and then in the next sentence let everyone know it is ok and that you have a new plan. This lets everyone know not to worry, it's all under control and you'll keep everyone posted.

I think we both use that as a shield to bolster our inner-self, so we can keep ourselves strong and not show anyone that we are concerned...I know you are scared Lisa, and I'm scared with you. I like the others have followed your story and I think you have handled yourself with the Grace and Dignity that all of us want to live our life with.

As I've mentioned before, you are a light that everyone gravitates towards and folks are looking to you for hope - and you have provided that and so much more.

I admire you and your fighting spirit! I await what the next step(s) will be for you. You deserve all the good things that life can offer us. Congrats on your daughter's birthday and your wonderful day - that's in the record books now and the Memory Remains - nothing can take that from you.

All my best - Craig

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

Hi Craig,

Thanks for your comments. You mentioned how I've delivered bad news in one sentence, then in the next tell how it's going to be ok. I guess that's been how I've been approaching it. I remember when I had my first recurrence (almost a year to the day after my original dx)... my biggest worry that I first had was that I didn't want anyone to know because they'd be discouraged. Obviously, my thoughts moved on fairly quickly to getting going on treatment.
Like you mentioned also- the Memory Remains. I do think a lot about how I interact with my husband and kids- more now than ever. If I don't make it, I want the memories to be good ones. (Not always easy though, as I just yelled at my 14 yr old daughter quite angrily for leaving a big mess. But, such is life, right?)

Hugs to you,
Lisa

AnneCan
Posts: 3692
Joined: Oct 2009

Lisa,

I am so sorry that the reponse to Dr. Cantrell's treatment wasn't what we all hoped. I really admire you for having tried that treatment + I hope your next treatment will be a great success.

I applaud you for making your daughter's birthday wonderful for her.

dorookie
Posts: 1736
Joined: Jul 2007

I sure hate to hear this news. I am so glad you too the day and spent it with your daughter, this cancer cant take everything that day away from you. I was so hoping that this treatment would work for you and for others. Its good to hear that you are not losing hope, as we all know its very important to have hope and faith. I will continue to pray for you, especially that the new docs you are going to see will have a good plan for you. Stay strong my friend.

*HUGS*
Beth

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

Thanks, everyone for the support and encouragement! As I've said so many times before, you guys are wonderful! I started to address people's individual comments, but then my phone rang, and several other distractions came up- so I'm addressing the rest of you here. My heart is warmed every time I read any of these words from you all! As my kids say, I'm "addicted" to this board of supportive friends!
I will be okay and I will keep pushing on! I'll keep in touch after my appts with my oncologist and Dr. Lenz. I got an email this a.m. from Dr. Lenz saying that if he can get all of my records today, then he can get me an appt. this coming Thursday (moved up from March 15- I was originally told that was the first available appt, when I called a few days ago to set an appt up). I've been busy scanning and emailing stuff, as well as following up w/ two Dr's offices to make sure they send all the needed info.

Hugs to you all as we're in this together-
Lisa

**Edit: I just got a phone call from Dr. Lenz's assistant- I now have an appt. this Thursday at 3:30. It will be a long day & I'll probably get home pretty late, but I'm looking forward to meeting with Dr. Lenz.

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

Lisa,
Thank you for being so open in your sharing of this treatment program with us. I am very sorry the results were not what we had all hoped for.

Peace and blessings... Rob; in Vancouver

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

It ain't over til its over, and its far from over..We sound like we are saying our final goodbyes, nope, sorry, your not getting out of here that easy. You have a lot of spunk, you also build your life on the "Rock", yes I know what the ROCK is all about. Its what keeps us knowing that everything will be ok, and you know it will. You will not allow this to take away dignity or your peace of mind, or the meticulous beauty that you bring to us through your words of solemn but kindness that only you can muster. Your not going anywhere anytime soon, we're not gonna allow it, so toughen back up, get your game face back on, and go at it like you did last time. You are the driving force behind your treatment and your well being and with that said I think your in great hands...Keep doing what your doing.......Love Hope and may your new path be the best journey.....Clift

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

Thanks for the encouraging words- you have a way of saying things that is very helpful. I will be okay & you take care too!
I'll definitely be around for awhile!

Lisa

kersha
Posts: 63
Joined: Jul 2009

I am so very sorry to hear that your trial with Dr. Cantrell did not work and that now there are new growths. However, glad to hear you are not brooding but moving on. I think that is what is going to help you through all this. I follow your posts because my husband's case is similar to yours. He had multiple mets to liver and lungs and in the omentum. Was put on Xeloda, Oxaliplatin and avastin 5 cycles and last week scan came back clear. So I hope for you that if you do go back on chemo it clears everything. My prays are with you.

mom_2_3
Posts: 964
Joined: Nov 2008

It's hard to add to what everyone has said here already. You are a strong and courageous person and you will now simply look for an alternate path of treatment than you were on. I am sorry Dr Cantrell's treatment didn't seem to work but I have heard so many wonderful things about Dr Lenz. He seems very empathetic, driven, and of course, brilliant. I am happy that he is making the time to get you on his schedule and I believe that to do that he must feel that he has some good treatment options for you.

I am glad that you were able to enjoy the time with your daughter and celebrate her birthday in such a special way. We had a fun day (snow day, no school!) here in NJ and spent the afternoon sledding. These are the moments that we all treasure, spending time with our loved ones.

All on the board love you Lisa, we are your extended family and your moments with us when you take the time to post such thoughtful entries to the threads are also treasured. Take comfort as you move forward towards a new treatment that we all go with you in spirit and with thoughts of caring and optimism.

Love to you (and hugs and kisses as well...),
Amy

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

GURL!!!!!!!!!!!! Yes, this news sucks...... but like Buzz says....it is sooooooooooo very far from the end and you know that. So it didn't work.... scratch that option...go on. Like you will do and are doing.... MOVING ON!!! There are so many options out there that this POS cancer crap ain't got a chance... I mean...for real! Like cancer thinks it can outsmart us????? say what???? NOT!!! Everyone on this board is at your side and you know we will support and help you every step of the way. My family says I am addicted to this board too... and I am...and I love every minute of being involved with people who can relate to what I am going thru and can share with me. I don't feel alone. You got my number. Use it if and when you want. I am always here for you.

Jennie

cowman
Posts: 61
Joined: Jun 2009

I am lifting you up, Lisa, along with all the others that are doing this for you. I know where your strength comes from and pray that you continue this calm, focused attitude. Am so happy that you were able to get into the new dr so fast. Yay!
Maybe it was good in a strange way that your daughter's birthday interfered with your chance to freak out over the unsettling news. (not that you would) I don't know that I could have accomplished that.

Your daughter will know someday what a special mom you are and what you did on her 10th birthday because you can tell her when she's 20 or so!

Fight On, Lisa!!! My prayers are continually with you.
Diane

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

Dang Girl... Look at all your friends here. We got your back baby!!! If you need anyone to sit with you during your appt let me know.

Brooks

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

Oh, Lisa.

I'm so very sorry that the treatments weren't the answer for you. I'm so glad, though, that you're going to keep searching and hoping for something that WILL. I'll be praying that just the right thing presents itself to you very soon!

Your day with your daughter sounds lovely, and I admire you so much for being able to give her (and yourself) that day. What a beautiful memory. I hope you will have many, many more of those.

*hugs*
Gail

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

I am sorry to hear that the treatment hasn't worked for you. I am glad you had a good day with your daughter and family.
Please keep us posted on what treatments you will be trying next. Always thinking about you and wishing you the best. Paula

JR's picture
JR
Posts: 140
Joined: May 2009

I am so sorry to hear of you scan results. I have been following your posts recently and am so impressed with your attitude. You have been through alot and deserve some good news. I am happy to see that you have an appointment with Dr.Lenz. Time for a new game plan. Let us all know how your appointment goes. Looking forward to your next post. Thanks for your strength.

John

betina61's picture
betina61
Posts: 644
Joined: Aug 2006

I am very sorry that your scan results where not as we all were wishing for you,you are just an amazing woman, an inspiration of courage for this board, we all need you here with that warrior spirit that you have,my prayers will continue for you everyday,and I will be waiting everyday to open that post from you, that will read,"Hey guys I finally met Mr. Ned"
God bless you Lisa

Julie 44
Posts: 479
Joined: Oct 2008

My GOD girl you are one remarkable person.To get the results then pick yourself up and dust yourself off and continue on with your day without so much as a word about it to your daughter so as not to ruin her day I COMMENED you..I am very sorry that the results didn't turn out for the best..Like you said before that its just another mountain you need to climb..You are very brave and couragous person and you have always given me insperation to go on..That is what I want for you too..Keep on enjoying your family and plugging along with finding treatment because to many people need and want you in their lives....Good luck to you...JULIE

kristasplace's picture
kristasplace
Posts: 956
Joined: Oct 2007

I'm so sorry about this news. I can only imagine how devastating it all must be. It's time for drastic measures, and i believe you can do it. You already have the great attitude that is so important. I have a feeling Dr. Lenz will help you. Isn't he the doctor that uses a more holistic approach? Stick to your guns with the juicing. It can only help.

I think about you all the time, and like Brooks said above, you're an inspiration to us all.

Many hugs,
Krista

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

You are an inspiration to so many. God has a plan for you and it shows through your courage and peace. Thank you for sharing your thoughts fears and faith. Keep searching because there is a cure out there for all of us. JIll

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