my scan results after 9 weeks of Dr. Cantrell's treatment
lisa42
Member Posts: 3,625 Member
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
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
0
Comments
-
Lisa
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. Ann0 -
Dear Lisa,
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.
**** 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,
Kathleen0 -
Lisa
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! Jean0 -
It's inspiring to hear you
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,
Roger0 -
Your report
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.0 -
Oh Lisa
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 - Tina0 -
Hope
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.
jan0 -
Lisa42
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.
Marie0 -
Heart broken over this
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.
Diane0 -
Hi Lisa
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!
-phil0 -
Hey Lisa, you do sound soPhillieG said:Hi Lisa
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
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, Patti0 -
Lisa You Keep on Keepin ON
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)0 -
Lisa,ittapp said:Hey Lisa, you do sound so
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
I am glad that you are
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,
Brenda0 -
LisaGOOFYLADIE said:Lisa You Keep on Keepin ON
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)
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,
Joanne0 -
LisaGOOFYLADIE said:Lisa You Keep on Keepin ON
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)
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...
Louann0 -
The Rock
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
Brooks0 -
Lisa
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.
Pam0 -
We will keep on hoping!
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.
Marie0 -
Thanks for being you...
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 - Craig0
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