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my scan results

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

Hello,

I had my PET/CT scan yesterday and got my results today at an appointment with my oncologist. Results... CT portion of the scan showed that all nodules in liver and lungs are stable- all except for one nodule in my lungs & that one more than doubled in size from 0.6 cm to 1.4 cm. The PET portion of the scan showed increased activity in all areas of lungs, liver, and rectum. The weird thing about the rectum is that two scans in a row have shown increased PET activity, but nothing shows up there on the CT portion of the scan. I had an exam by my colorectal specialist (Dr. Ramamoorthy, for those of you in San Diego who know her) last week and she felt a nodule, which she estimated about a 1/2 cm. I asked my oncologist why that wouldn't have shown up on the scan. He said that if it's on the inside of the rectum under a certain size, it often won't show up on scans.
Given that it's been bothering me more lately (lots of blood and mucus), Dr. Ramamoorthy and my onc Dr. Helton both agree it should come out. I'm going in this coming week for a cyberknife evaluation on that (and maybe they'll look at that growing lung nodule too). He did say, however, that sometimes the cyberknife rad docs are hesitant to do it on the inside of the rectum because it could possible cause a hole in the rectum, which would result in emergency surgery. So I told him that I'd rather not consider it then, but he said still go for the evaluation and see what they have to say. If that doesn't work out, it looks like I'll be having an internal rectal excision of the nodule at some point. We'd have to figure out the timing, since it would mean I'd have to stop the Avastin for 6 wks prior and 6 wks after. We're also going to be looking into clinical drug trials & I'm most interested at this time in pursuing the one with Dr. Lenz at USC with the drug that targets the cancer stem cells. On that, I emailed Lenz's assistant 2 days ago & she replied that they still haven't been given the green light yet on the trial & to email back in 2 more weeks. I don't know that I'd even qualify- it's so hard waiting. Also, as with all clinical trials, all chemo would have to be stopped 4 weeks beforehand. We won't stop it yet though, because we have no idea when it's going to start and if I can get in.
Dr. Helton talked about how the combo of the Gemzar/Xeloda/Avastin seems to be working now like a dam wall- holding things back, but now it may be springing a few leaks. He's convinced I'd be worse off if I weren't taking anything, but with the constant increase in PET uptake the last two scans now, it clearly isn't giving us the results we'd like.

So far as all the supplements I started a month ago...I stopped them two weeks ago because I decided I better be just on the chemo for my scan to see what it's doing. My thought was that if the supplements were actually helping (which there's really no way of knowing), I then wouldn't have been certain if my scan results were influenced in any way by the supplements & we needed to know how the chemo alone was affecting it.
So, I did have a drop in CEA of 14 points when I first started the supplements, then just a 1 point drop the time after (3 wks later). It was at that point, about 2-1/2 wks ago, that I stopped them. I'm going to resume them again now- my onc told me he doesn't know if they'll help or not but they really won't hurt so, why not?

Emotionally, I really am okay today (& my husband is too- I believe that's an answer to prayer- he usually gets so down and depressed anytime I have a scan that doesn't show tumor size reduction). I don't have that nervous upset feeling in my gut at all. I honestly and logically don't know why, except that I know many are praying for me and I am a believer who believes God hears all those prayers. As a believer, I don't believe He is ignoring the prayers and that he does hear them, but I believe that there must be a purpose in all this. I'm even wondering if maybe God allowed one nodule to grow, because I do know that Dr. Lenz has a requirement of some kind of tumor growth showing on a CT scan in order to even be considered for this stem cell drug clinical trial.
So, a lot is still uncertain & I will let you all know how the cyberknife eval goes. Oh- I mentioned nanoknife to my onc & he said he has referred a few patients there (UCI, the only place it's done in Calif) & all of the patients he's referred there ended up not getting it done. Supposedly the docs up there said surgery or cyberknife would be better to do (at least on those particular patients)- so he said he'd rather me not go there.

So, thanks again to all who are wishing me well and/or praying for me- I value you all & I want to let you know that you are all on my mind and in my prayers too.

Hugs,
Lisa

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

Lisa, I pray for you often. You have been battling this hard and I have been watching closely to see how things go for you. I am interested in what your results are regarding the nodule in your rectum. I have been having lots of problems with pain in my rectum and my recent scope showed no growth inside the rectum, so it's got to be related to the nodes outside, there are 2 that show growth. Are you saying that cyberknife would be more plausible for these? I really have to get something done now that we've determined there's no growth inside the colon/rectum.
mary

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

Mary,

Are the 2 nodules that show growth outside your rectum outside on the anus, or do you mean in the pelvic cavity- outside the rectum, but inside the body? If that's what you do mean, then what I was told by my colorectal surgeon is that "the cyberknife folks" (as she put it) prefer to do cyberknife on nodules that are on the outside of the rectum or colon, inside the pelvic/abdominal cavity, then they do on nodules inside the rectum.
If that's your case, I'd definitely pursue getting a cyberknife evaluation. For the evaluation (depending upon your insurance), you'd probably just need a referral to a cyberknife center from your oncologist. Then, they'd look at your most recent scans and evaluate if you are a candidate for it or not.
Best wishes to you on that- thanks for your prayers, Mary- I will be praying for you too. :)

Lisa

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

yes, they are in the pelvic/abdominal cavity, pressing on the nerves down there, at least that's what we figure must be causing all the pain. We do see enlarged nodes down there, and since we've confirmed there is no growth on the inside, i suppose it's process of elimination. I will definitely call my oncs office on Monday for a referral to a cyberknife center. Thank you for your prayers, i greatly appreciate them.
mary

newperson's picture
newperson
Posts: 76
Joined: Mar 2010

Mary, my husband has tumors in his pelvis which press on the nerves and cause extreme pain in his right leg. He is doing radiation in hoping to shrink the tumors to ease his pain. He has done 6 treatments with 6 more to go. So far we haven't seen any improvement yet. But I think cyberknife would be better. please look into it. You are in my prayers. - Lucy

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

and I will pray for your husband to get some relief as well. This stuff just really sucks sometimes!
mary

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

I am STILL gonna pray for you, if that's ok?!?!?!?!

hugs, Kathi

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

YES- most definitely & thank you!!! :)

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

Thanks for the update. I've been wondering how things went. All stable except for just one growing - you might be right. That one could be your ticket into the trial, and that trial looks promising. I hope you can find a way to get rid of the rectal nodule soon to relieve that pain. Continued prayers for you.

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

Lisa,
I don’t really know what to say. All that comes to me is I know you are a strong fighter with an even stronger faith in God. Darlin, with that attitude and God in the mix you can beat the monster.
Much love and prayers going your way.

Kerry

AnneCan
Posts: 3692
Joined: Oct 2009

but as usual you are putting the plan in place + continue to inspire us. I am humbled by your knowledge, strength + tenacity in fighting this. I honestly think you could teach a course in it.

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

I am sending out lots of hugs and prayers to you.

newperson's picture
newperson
Posts: 76
Joined: Mar 2010

Lisa, You are in my prayers. I'm sorry you got the mixed result. But you a true fighter. You can fight this monster back, at least put them under control. I pray for you that the cycberknife eveluation will go well. I pray for you that you will get into the clinical trial that targets the cancer stem cells. - Lucy

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

Lisa, you sound so strong. It makes me want to be also. Thank you for that. You and your family have my prayers and bestest of wishes!

Prayers, Gail

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

are with you , actually the Pope Benedict is going to be in Barcelona tomorrow and will celebrate a one million people mass ,I will pray for you there!
Hugs!

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Sorry for the mixed results, hopefully they can get rid of the rectal nodule and the rest goes smoothly. While growth is never what we want, if it gets you into Dr. Lenz' clinical trial, that would be great. Happy thoguhts, prayers and a big hug to you, Traci

sasjourney
Posts: 395
Joined: Jul 2010

Lisa,

This could be the blessing that you mentioned and allow you to take part in the trial. It sounds so promising and Dr. Lenz really believes that it may be the"cure" for colonrectal cancer. I know your faith will keep you strong and God is always with you. He will take care of you.

There are new treatments always in the works and I know that things will turn around for you. You are an amazing fighter and you will win this battle!!! As always, you are in my prayers and thoughts. I just know good news is coming for you.

Stay strong my friend,

Sara

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

Sorry you didn't get all good news but sounds like you are at least stable in most of them. Glad to see that you are informed as to what your options are and that you can make a sound decision with your doctors in how you want to pursue this. You are always in my prayers. Thanks for keeping us informed.

Kim

valley
Posts: 94
Joined: Jun 2007

Lisa

my husbands pet scans have lite up in the rectum since his first scan in 2006. He has had several biopsies, sigmoidoscopies and ct guarded needle biopsy, barium enema and colonoscopies in the past almost 5 years. Everything has come back no evidence of cancer.
The scan results state that imflammation due to radiation is causing the scan to lite up. Hope this help. I will be praying for you.

good luck
val

march15's picture
march15
Posts: 12
Joined: Oct 2010

You are so right in the peace prayer can give you. The night before my surgery I slept like a baby (and I've had many sleepless nights worrying about much less important things) but my friends were taking turns covering me in prayers. I'll be praying for you and your family. Pam

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

Lisa,
You will stay in my prayers. The peace God brings is often beyond our comprehension. I will pray that peace continues for you. You are strong, smart and amazing.

Aloha,
Kathleen

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

Lisa I had a vitamin. C, B complex, A and D IV in Phoenix from a natural path doctor. The C was 2,000 units. I am going to check for a local doc. She said I was very low on Vitamin B. She also said I needed Folic acid...that contradicts what I have read. ??

She highly recommended an allergy blood test, I.e., my body could be fighting allergens and not focusing on my immune system. I may also be overly taking certain vitamins. She said that every body is different and we should get analyzed by a natural path doctor.

Hope things start working for you in a positive way!

dorookie
Posts: 1736
Joined: Jul 2007

I am sorry you didnt get the results you had hoped for. I too believe in God and that everything, everything happens for a reason, I truly believe that, will we always know the reason? NOPE probably not, but then I just have to believe there is a reason and someone somewhere else will benefit, will learn, and might even change their life for the good. I know I sound like I am preaching here, that is not my intentions. I just wanted to let you know that I think a lot of you, how strong you are, how strong your faith is, you are an inspiration to me, and I too will continue to pray for you and your family, my friend..

HUGS
Beth

cwork's picture
cwork
Posts: 37
Joined: Oct 2010

Lisa, you continue to amaze me in your ability to see the silver lining of any cloud. While not the exact results you were hoping for there is something to be thankful for and what you don't understand you trust God can use to your advantage. That kind of faith is something we all need more of regardless of our health. Thank you (again) for being a blessing to me.

Brenda3.16
Posts: 211
Joined: May 2009

Lisa, Thanks for sharing your results. You always have so much information that can help others. I am impressed with all the knowledge and research that you do. I am glad that you and your husband have had peace of mind this time. That is so important in this battle. I will pray for your to find the next trial of treatment and that you continue to be at peace. Love, Brenda

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

Hello again,

I just wanted to say thank you to so many of you- I feel like I know you all!
I just keep thanking God for giving me strength to be positive and see the silver linings.
I don't feel that way every day, but I do most of the time.
Just thought I'd mention that I got an email reply from Dr. Lenz this morning. It wasn't very long- just two lines. I had told him I was going to mail a copy of my scan report and CD and could he tell me any of the specific requirements for the clinical trial. Specifically, I asked him if my one lung nodule doubling in size from 0.6 to 1.2 cm was enough of tumor advancement to fit the requirement. (his assistant had said there had to be evidence of disease advancement). His reply (sent from his blackberry)just said "no promises of getting in this trial or any here, but I think you should come here and be evaluated". I emailed back to ask what he meant exactly by "being evaluated". Does that mean to set up a consultation appointment like I had with him back in Feb (which was not cheap- insurance doesn't pay for me to go there, but I'll do it anyhow), or do I first need to get additional tests done, and then see him? And was the scan I just had done enough? (as I know some oncs don't like PET/CT's and prefer regular CTs). Hopefully he'll answer again a little more specifically. I know he's very, very busy so it actually amazes me that he communicates at all by email to people who aren't even his actual patients. So that's pretty amazing.

I'll keep you all posted. Best wishes and prayers going out to everyone else facing scans, tests, surgeries, or dealing with chemo side effects for themselves or loved ones-

Hugs again,
Lisa

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

I'm glad that you heard from him. Since there is a rumor that he is taking "his patients" first for the trials would being seen by him for a consultation qualify you for being on "his patients" list?

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

Good point Lori- maybe I'll call up there Monday/tomorrow and see how soon I can get in.
I did hear back again w/in minutes of posting this last update- amazing that he does that- he must be answering back people all day long.
Anyhow- still no answer- he sounded annoyed with me and just said how it's easy to try to get information and even a prequalification for free over the internet. Oops- I think I struck a nerve (was just trying to be the "early bird that gets the worm")- so guess I'd better set up an appointment.

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

Don't get on his bad side ;)

Sometimes squeaky wheel gets the grease and sometimes gets the shaft. LOL Yep, better set up an appointment.

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Hope you got good luck and be accepted on the trial !
Best?

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

shouldn't you be sleeping? You got Rad in a few hours!!!

AnneCan
Posts: 3692
Joined: Oct 2009

I don't think Pepe sleeps!

AnneCan
Posts: 3692
Joined: Oct 2009

Lisa, I hope you have good luck with Dr. Lenz. Some doctors amaze me with the speediness of their responses.

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

you are right , I'm going to have my 2 Lorazepam and go to sleep, thanks for the remaining Girls!

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

Lisa, you continue to be a source of inspiration to me and many others. I am sorry your scans showed some growth and of course it is not what we want to hear at all. I pray that the right treatment/trial/surgery will present its self to you just at the right time. I am constantly amazed by Gods timing. I am still doing clinical trials at UCSF and will begin the 2nd cycle on Wed. this coming week. I won't have a scan until the end of this cycle. If at that point I am showing that the drug is showing progress with my tumors then I can stay on it. Part of me wants to just pretend it is doing well and not worry about scans that will possibly remove me from the trial, but the realistic part of me knows it is senseless to continue taking something that is not helping! So much of what we deal with is emotional. I also believe that God has a purpose for me and though I don't always know what or why, He proves it over and over again. You are in my prayers. Jean

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

Lisa,

I tell you what, cancer must be thinking, "Who is this chick?" You are battling this thing with everything you've got! I'm in awe of you.

*hugs*
Gail

luv3jay's picture
luv3jay
Posts: 534
Joined: May 2009

Lisa, you know I'm pulling for you and praying for you always! Don't forget about the experimental trial I'm on at Georgetown, which is so far working just as we hoped it would. Along with the power of our mighty Father in Heaven. Please let me know if you want further info on that and I can see if it's still open for patients. My prayers are with you.

-Sheri

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

Thanks, all, again.:)
I just called USC/Norris Cancer Center and was able to set up an appt. to see Dr. Lenz on Nov. 22nd. I'm glad I was able to get an appt so soon. We'll see what comes of it- I'm a little scared of Dr. Lenz (I saw him in Feb), but he's the brilliant researcher w/ the latest & so I want to go.
As excited as I am about going and seeing if I even have a chance of getting in this cancer stem cell drug clinical trial, the timing of the appt date isn't the best for me on that day. It's my 14 yr old daughter's 15th birthday & she'll be off school that week and was looking forward to doing something fun together on her birthday. Now I'll be gone all day, which will be sure to put her already bad attitude even worse (much of her attitude comes from hearing and worrying about my cancer & now something related to my cancer is going to ruin her birthday), but I've gotta do what I've gotta do! (it was the first available appt & I would have had to wait till the end of the month if I didn't take that day). Oh well, wish me luck (actually, prayers preferred over just luck wishing, lol!)

AnneCan
Posts: 3692
Joined: Oct 2009

Wow, you are making it happen! You got an appointment very quickly; good for you! It is unfortunate that your appointment falls on your daughter's birthday, but unfortunately that seems to happens sometimes. If you are a little scared of Dr. Lenz, I think he needs to be prepared for you - you are formidable with all your knowledge! I hope Dr. Lenz has all the right answers + everything goes swimmingly.

cwork's picture
cwork
Posts: 37
Joined: Oct 2010

This could be the best birthday present your daughter has ever had! She is 15, plenty old enough to understand, and easily bought off with an extra gift :) LOL. Instead of just looking forward to her birthday, she has new hope for her Mother to look forward to. Sounds like an extra special good day now. As for being intimidated by the doc. I can relate to that. As a nurse I remember the days when I used to almost tremble when some of them would call for so and so's nurse (and that was me!) They don't bother me any longer. I realize they get spit up on by the baby, clean up the dog poop, and get spinch stuck between their teeth just like the rest of us. He is obviously brilliant in his field, but you are top of the class is "Class" Mrs. Lisa and he could take a few lessons from you on that. Just smile and talk to him like you talk to us and when you leave he will be wondering why he feels so good about himself. I am definitely praying for this to work out for you.
PS taking homemade goodies to the doc never hurts either :)

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

You've got a great idea on how to present it to my daughter and thanks for the pep talk on going to see Dr. Lenz. :)

newperson's picture
newperson
Posts: 76
Joined: Mar 2010

Sending best wishes and good vibes to you. - Lucy

sasjourney
Posts: 395
Joined: Jul 2010

Lisa,

I am so happy that you are getting in to see him sooner than expected. I think that is fabulous news!!! I am praying so hard that you get in on the trial and this treatment kicks cancer's bootie. I am sorry that it has to be on your daughter's b-day, but hopefully you will both have something to celebrate that evening. I think it will be a great day...

Hugs,
Sara

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