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scan results aren't what I had hoped for

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

Hi everyone,

Well, I had my PET scan Thursday and I went to the hospital and got my results today. This is the third summer in a row that scan results have brought bad news since my original diagnosis in Aug 2007. I suppose it could have been worse, but I was definitely hoping things would be totally gone or at least no worse than before. It definitely wasn't what I was expecting or hoping for- especially since I've been on a maintenance regime of Avastin and Xeloda since going off of irinotecan when my last PET on 4/2/09 showed no activity.

This one showed numerous subcentimeter nodules lighting up in my lungs, especially in the right lung. The hilar node which had shown activity in the past but didn't in April, has again shown growth and activity this time. There are some new subcentimeter nodes lighting up in the right lung as well- in both upper and lower lobes. In addition to the lungs, I now also am showing hypermetabolism in the right hepatic (liver) lobe along the area where part of my liver had been surgically removed in May '08 (entire left lobe had been removed & I had a wedge resection in the right lobe) The report didn't mention an actual nodule in the liver, just hybermetabolic activity along the resection margin that is "suspected for recurrent metatastic disease". Nothing was found in my rectum or anywhere else.

I was not expecting this, since I thought I was "protected" from further disease advancement while on the Avastin and Xeloda. I went off the irinotecan in April, following my good PET scan results then & that's probably when things start growing again, I imagine. My CEA levels starting rising above normal within a few weeks of going off the irinotecan (nothing terribly high, but above normal). I was concerned then & I guess it was a founded concern. My CEA level was just tested this week again & it tested at 3.2- so nothing too profound, but it was above normal. 4.8 was the highest it's been tested at in the past couple of months.

I see my oncologist on Tuesday to discuss it all. I'm wondering if he'll want to put me back on irinotecan, since it seemed to keep things at bay before, or if there's something else to look into. I'm not looking forward to it, but I guess that's what I'll have to do.
I feel so bummed, though to realize that I can't even just stay on a minimal chemo dose- that I need to be on "major" stuff or else my cancer will progress. I was told before I'm not a candidate for any surgery or radiation treatments because of sizes and the number of nodules.

I'd appreciate prayers from any of you who are believers. I'm not falling apart or anything, but this is a definite setback.

Blessings,
Lisa

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

I am praying for you Lisa, just finished a prayer!! Keep your spirits up, I know that's easier said than done. I am only 2 mths. into it and going on my fourth treatment on Tues. I am stage four with multiple mets to liver. I can't have surgery until they shrink. I understand your bummed attitude but we must look forward and take it one day at a time. God Bless, Patti

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

Hi Lisa,

I will definately say a prayer for you. I know you are bummed but keep that positive attitude you always have. You did it once.... you can do it again. I know all this sucks. I too have the multiple mets to lungs and liver. Faith... and the people here keep me going... and of course my family. Take care...... Jennie

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

Thanks Patti and Jennie,

I know that I will keep pressing on and doing what I need to do & I appreciate your thoughts and prayers. I've done the major chemo twice now plus the maintenance, so I guess this will be considered third-line. I know I can do this, it just sucks though- I just saw several people on my vacation at my nephew's wedding. It felt niceto get several compliments on how well I appeared- now to go through the chemo craps all over again. I fortunately haven't really had many symptoms from my cancer itself- just from the chemo in the past. I think I had been seeming so well and energetic lately because I had finally gotten the irinotecan out of my system- now just to have to start it (or something like it) up all over again- arrgghh!!! Okay- getting it out of my system... now onward in my fight and working on getting positive in my attitude again with God's help and the support of all of you!

Thanks everyone & blessings to you all,
Lisa

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

Try and keep a positive atittude,and keep doing what you have to do to fight the cancer,and I will be praying for you.You have to keep faith.

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

Lisa,
I am so sorry that the scan showed more growth. I know you are strong but I know this hurts like crazy. I know that you are in a tough spot since you look so healthy and feel good. I will pray for you right now. I am praying for God's peace. The peace that seems impossible at times but the peace we know God has promised us. I am praying for the peace from Philippians 4:6-7.
With prayers and aloha,
Kathleen

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

I'm so sorry, Lisa. I hardly know what to say. I guess i'm shocked. We have to keep faith though, that getting you back on the irinotecan will shrink the tumors. I can't remember if you were doing a trial? I know xeloda isn't new, but maybe that with the avastin is? I don't know. I've heard such wonderful things about xeloda treating stage IV colorectal. I hope this news doesn't stress you out too badly. That will just make things worse. Are you still consulting with Dr. Fanta? Maybe he has some ideas?

Know that i am always thinking about you (you are so much one of my heroines), and i hope your onc has some wonderful new ideas that will annhilate those BLEEPING tumors.

Please let us know what he says.

Many hugs,
Krista

ADKer's picture
ADKer
Posts: 150
Joined: Aug 2008

Lisa - I am sorry to hear about the disappointing results from your most recent scan. There is no justice or reason in this disease. I read about your experiences with trepidation because I also have multiple small lung nodules and am concerned about the options available to treat them. Your good health and strength otherwise are assets that I hope your doctor can use to your advantage. Best wishes and keep up the fight.

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

Lisa, this just breaks my heart. I had really hoped you'd get some good news.

I certainly will increase my prayer efforts for you. You are a precious friend.

Diane

dixchi's picture
dixchi
Posts: 438
Joined: Jun 2008

I can't remember the details of your story but I wonder if you have
gone the second/third opinion route.....if not maybe it's time to
get additional input from other docs about what treatments they
would recommend. There are many more options than we used to have
and even tho docs are very savvy they don't always know all the
options. Trying to give some hope here; I know this is so difficult;
you have had a long road....I keep remembering philleg and snoj....sp?
and they have had a long road too so there are people that can give
you support from a personal standpoint. Will keep you in my thoughts
and prayers.

Huggs,
Barbara

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

If this is of any help, I went through 3 consecutive spring/summers where I had to have lung surgery to remove nodes. One year ago today, as a matter of fact, was my last lung operation. Maybe the third one was the charmer. I still have 2 small nodes in me between my lungs that seem to be staying stable with only Erbitux. I know how you feel about irinotecan. I was on that stuff for over 3 years, the cramps and all were real bad.
Hang in there, your in my thoughts
-phil

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

Lisa, were you ever on Folfox with Avastin....alot of big words in folfox I can't spell, but I did not notice you writing anything about it, and it seems alot of CC patients with mets to the liver are on this treatment plan. Just curious what you were on originally. God Bless you, Patti

Fight for my love
Posts: 1530
Joined: Jun 2009

Hi Lisa,I truly understand the frustration you have.I am very worried about my husband for the following check with surgeon.I understand how you feel.I am praying for you and sending you my best wishes.Please keep an optimistic and positive attitude.A good attitude will always help.I believe things will get better.Take care.

dorookie
Posts: 1736
Joined: Jul 2007

Lisa,
I am so sorry to hear this news. Please try to keep a positive attitude. It might not be as bad as you think. Your ONC might just have a simple answer, ya never know. I will pray that you have peace during this until you find out what the next steps are. Your a very strong woman and I know you will beat this. Keep fighting NEVER give up..

God Bless ya
Beth

eric38's picture
eric38
Posts: 588
Joined: May 2009

I just said a prayer for you. I prayed for peace and healing.

Eric

lmliess's picture
lmliess
Posts: 331
Joined: Dec 2008

This whole cancer thing is getting old to me and it has been about a year since my 'symptoms' showed, so I can't imagine how you feel going through this so many summers!
I send you positve thoughts and prayers. You are such a positive person anyway so just take this step by step. Claim yourself as being cured! In fact everyday when I am getting ready I look in the mirror, smile, and say thank you God for ridding my body of cancer forever and making me healthy and letting me feel great. I say that even on my crappy feeling days!!! I feel if I believe it it will come to me.

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

Hi Lisa

I'm sorry to hear about the change on your scans & tests. My heart is heavy because you are hurting so. You are a strong and intelligent woman and I've enjoyed reading your posts - missed you while you were out on vacation - I'm so glad that you got to go and enjoy yourself.

Let's see what your oncologist says on Tuesday and then you can tell us more about the new plan. I'm wondering if your onc would consider switching you over to Oxaliplatin instead of irinotecan? It's a hard one too as you've probably read about those of us who've had that. I was doing that - the Folfox + Avastin + Xeloda.

I know you dread having to fire up the big artillery again - I was doing Avastin & Xeloda at the end of my treatment and it was much easier to tolerate, so I see how you are feeling about that.

I too will pray for you - I've come to believe in the power of prayer alot more. It is something that I can do to help you. You've got all of us pulling for you.

I'm praying for calm and peace and strength in your fight. We all care about you.

Take care and all my best to you

-Craig

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

Thanks everyone, for your well wishes and prayers- I can feel them, and they do give me strength and hope! I appreciate all your thoughts and experiences & know several of you have gone through even more than I have. I'm sorry if I'm unnerving any of you who are not as far along as I am in this "game".
As to a couple of your questions, I've already done oxaliplatin (with the Folfox/Avastin), back when I was first diagnosed, starting in Aug '07 and had a lot of neuropathy, as well as had to counteract allergic reactions each time I was given it, so I don't think we'll be trying that again. Yes, I've done Xeloda and Avastin- that's what I'm still on. The irinotecan is one that seemed to work well for me, so I'm imagining I'll probably go back on that again. The Erbitux is out for me, since I have the kras mutation. I do have basically two oncologists giving me input- my main new oncologist, plus Dr. Fanta at UCSD who is very willing to consult with my new oncologist, Dr. Helton.
I'm feeling okay today and will trust in God that this is all part of his plan. I will, however, continue to pray for healing and thank him for the strength and otherwise good health I've been experiencing. I'll get back to you all after my onc. appt Tuesday afternoon.
Blessings to you all and have a nice weekend- I'm going with the family to my husband's work beach party in a couple of hours.

Hugs,
Lisa

dmdwins
Posts: 453
Joined: Aug 2008

I will continue to pray for you Lisa. So sorry that the news was not what you had hoped.

Dawn

regslady
Posts: 37
Joined: Jul 2009

I'm praying for you.

Annabelle41415's picture
Annabelle41415
Posts: 6722
Joined: Feb 2009

I don't know what to say but that I am sorry that your tests didn't come back like you hoped they would. You sound like such a positive person and I can only offer you my thoughts and prayers.

Kim

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

Lisa, what can I say or do to make it easier for you? I'm glad you seem to be in good spirits and I'm glad you have the peace of God with you. It really does pass all understanding! Well, just know you have many believers praying for you and most importantly, as you already know, God will never leave you nor forsake you. Be blessed, my friend.

-Sheri

tootsie1's picture
tootsie1
Posts: 5065
Joined: Feb 2008

Dear Lisa,

I'll certainly be praying for you. I'm sorry you've had this setback. It has to be so scary and worrisome for you.

I hope you get some better news from your doctor about what will come next.

*hugs*
Gail

Sigma34's picture
Sigma34
Posts: 207
Joined: Jul 2009

Like so many others on this site, my family will add you to our daily prayers. It is so sweet to hear my almost 4 year old twins say everyone's names.

Sincerely,

Christine~

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

Well, Piffle! This sucks. We were diagnosed the same month and I have another PET/CT in September after all my upcoming vacations. My NEAD PET/CT was in May instead of April. I'm hoping for what you were hoping for.

I have you and your family in my prayers. See what he has to say on Tuesday and make your decisions. You are strong. You can do this. It WILL be ok!

Hugs,

Kimby

nudgie's picture
nudgie
Posts: 1482
Joined: Sep 2006

sending a prayer your way as I type along with good vibes.

angelsbaby's picture
angelsbaby
Posts: 1171
Joined: May 2008

I also am praying for you.

michelle

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