Bad PET scan - need input - Zaltrap, radiation, etc.

[NWgirl]

I got my PET scan results yesterday and they weren't great. The spots in my lungs that have been stable for the past couple of years have all grown and a new one has shown up. There are also suspicious areas around some lymph nodes. I'm waiting to get a bone scan to be sure it hasn't spread to my bones, since my ribs have been sore lately. I'm also waiting to meet with a thoracic surgeon to discuss options. I may also want to meet with a radiation doctor - not sure yet; we'll see what the bone scan and the surgeon have to say. My oncologist is "thinking" about chemo options. I've been on Xeloda, Avastin and Erbitux (not all at once) the past couple of years and have had a good response up until now. I tried a couple of rounds of FOLFIRI and it was hard on me, so we set that drug aside for the time being. I may decide to revisit FOLFIRI to at least try it. With the colostomy, the bathroom problems are much easier to manage with that drug.

I saw Allie's post about Zaltrap - and several of you having had luck with it. If you don't mind being repetitive, would you mind sharing your experiences with me on this thread? I will search other posts as well - but I haven't kept up on the Zaltrap chatter since (until now), it didn't really apply to me. I'll go back and read Traveler's posts as well as I know he's been going down a similar path for some time now.

So anyone who is dealing with this or has dealt with it recently - i.e. lung spots/lymph nodes - with a recurrence; I would love to hear from you - especially if you've found something that is working for you. Has anyone revisited Avastin after discontinuing it previously? That was an easy drug for me and I thought since I've been off it for a year, maybe we should reconsider that one.

This is the worst place to be in right now - knowing I have a problem but not having a plan. I need a plan - and I'm working on it - just hoping to gather some more information here so I can talk to my oncologist about options when we meet next week.

And yes, I'm still going to Call on Congress. Leaving next Friday. Surgery, radiation, chemo - bring it on; but not until I get home. I will feel better though if I can go to D.C. with a plan. I just need a plan. I told my friend even if the plan is "you've exhausted all options - get your things in order" (I'm not there just yet); but at least it's a PLAN!!!!

[sadysue]

Belle...you are truly a warrior and I admire your strength and courage. I have no helpful words or advice but want you to know I will be praying for you. I had my one-year post chemo scan last night - talk about scanxiety. I have learned the true meaning of that word. Good luck and stay strong!
Mary Ann

[juliej]

Belle, okay you've been given some bad news. Is the game over yet? Hell, no!

I'm just like you about needing a plan. All my docs know this about me and they make sure I have one as soon as possible. It makes me so much calmer to know what's going on and what we're going to do about it.

I wish lung things weren't so damned enigmatic. You live in the Northwest, right? Lots of moss, mildew, and mold is "waking up" right now because of the warmer temps. If it was just a little growth in your old spots, I'd say that might be the cause. But that new spot has me worried. Hopefully, the thoracic surgeon will look over the scan and give his opinion. I trust a thoracic surgeon's opinion more than an oncologist simply because he/she deals only with the lungs and has a better feel for cancer-on-the-move versus inflammation and granulomas. As far as Avastin, at the last ASCO they presented solid evidence that revisiting Avastin helps even when the patient has failed a first-line treatment that included Avastin. I'd definitely talk to your doc about it, especially since it was an easy drug for you.

So while I can't help with Zaltrap or lympth nodes or recurrence, know that I'm in your corner, worrying about this with you. I love that you're still going to Call on Congress! It says so much about you and your vital approach to life. I hope you get a plan soon. You will be in my thoughts and prayers!

Hugs to you,
Julie

[Bev G]

Dearest Belle,

With you in thoughts, prayers and spirit! Kick ass in DC, then return home and kick that cancer ass to the moon, and beyond. Am anxiously awaiting hearing your plan. Admire you as a woman, and you as a warrior, more than I can say.

Love, Bev

[ams5796]

Belle,

I just want you to know that I'm thinking of you. You've been an inspiration to all of us. You're right, it's much easier to deal with all of this with a plan!

Ann

[edinaman]

Belle, I just want to let you know I am thinking of you. I'm hoping they get a plan soon, and you kick cancer's butt.
Jeff

[vancouver eve]

Belle, there is still options, such as radiation or surgery. I was informed that radiation can be done and surgery after if necessary. Ask your Onc.? Chemo does not seem to be an answer for a cure.

[Rob in PA]

Belle, so sorry to hear about your scan results. Give em' hell in D.C. and when you get back home get your plan going and fight the beast! I've no experience with Zaltrap. I do have experience with lung thangies. Used SBRT on mine which I've written about before. PM me if you have any further questions.

Best to you,

Rob

[novascotia]

Belle,I'm so sorry for the bad news from your scan. I have been reading all of your posts over the years and have admired your spirit. I really don't have any advice for you except go say that the current round of folfiri with avastin has been easier than the last. I think probably that is due to the almost year without chemo that I have had. You may find the same. I hope you get a plan in place soon and that you find some peace of mind before your Call on Congress.
Carm

[KarMel]

I did Zaltrapltrap for three cycles. While on it, I was "stable.". Taken off due th GI Bbleed. I was talking to onc at MDAnderson yesterday. The irinotecan induced diarrhea created inflammation of colon lining. One of parts of Zaltrap interferes with healing tissue...so my GI lining would not heal itself. So...if I could have somehow avoided or prevented the diarrhea, maybe I could have continued the Zaltrap.

BTW, this onc is not yet convinced of what place Zaltrap will have in future treatment choices. May be of some use, for sure, but he doesn't believe we know yet.

[CRguy]

...- bring it on....

I believe that is the Belle we all know and love,
and it is certainly the one who personally inspired me to steal the "Don't retreat...ReLoad" mantra for her

Every Journey of one thousand miles begins with a single step, but dammit Belle...
don't know how many more "first steps" we gotta keep taking here....
I just DO know in my heart, without any doubts at all...

we WILL keep taking first steps,
we WILL stay strong on the Journey,
we WILL not retreat,
we WILL reload,
we WILL swing chickens,
we WILL send prayers,
we WILL keep living life scan to scan,
we WILL ......we just WILL,
and we WILL all be here to do it with you, every step of the way.

You know where I am right now, on another's Journey, but my I-FIVES are burning up the Interstate for you.
I am always in Harmony with you.

If Colorectal BUTT needs kicking...you got a buddy, and a friend forever..so let's get Kickin' !
That's the plan.

CRguy

[tammylayne]

Belle - your cancer should be afraid...very afraid!!!! I am sure that once you get back from Call on Congress and your docs roll out "the plan",,,your kick butt attitude will send that cancer running!!!!!!!!

Sending you lots of strong thoughts.....

[NWgirl]

Thanks everyone for the support. It means the world to me - I mean that sincerely. No call from the docs today - so I guess I'll be bugging them tomorrow. Right now I'm just sooooooo tired of it all.

[dianne052506]

Belle,
I'll admit to not always reading, or re-reading signatures, but a post from you about a bad PET scan caught me off-guard. I hope this comes off as complementary as I mean it, but you write with a confidence of someone who has fought the battle and won, not like someone who is still having to fight. May that strength and confidence you have - in yourself, in your loved ones, and in your God - carry you through Plans B, C, D, and whatever path you choose now.
Best wishes,
Dianne

[michelle c]

Hi Belle,

This is not what I was expecting....I'm sorry to hear this, cancer sucks! I really hope that you get a plan in place real soon. Thinking of you and sending you love, hugs and strength to get over this bump in the road. Hang in there.