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PET/CT today

Kathryn_in_MN's picture
Posts: 1258
Joined: Sep 2009

I've made it through 8tx of FOLFIRI and Avastin. Not quite as hard on me as FOLFOX, but I've had a pretty rough time with this cocktail too. I'm surprised to realize I've gotten through 8 already. The whole experience is different when not trying to sprint to a finish line. It actually seems to go faster...

My last PET was after 4tx and it showed my 3 nodes shrinking a lot, and with a lot less activity. I'm expecting tomorrow's scan to show no active disease. If the results are different than that, I'll deal with it then. They will be what they will be. Just like the last one, I have no scanxiety. I left for Mexico before getting the results of the last one, and didn't find out for 2 weeks. I could have called to get them, but figured they would be the same whether I got them while on my trip, or waited till I came back. So I preferred to have a cancer vacation - avoid thinking about it, and work on getting strength back in my body and soul. I've come a long way - my early scans I had the scanxiety.

The results of this scan will influence how long of a chemo break I take the end of March for my stepson's wedding, so I am really hoping they are clear. I've got a one-week break for a vacation with extended family after my next tx on Thursday. Then I'll be back for two more tx before the wedding. My onc wants me to get 12tx of the current cocktail and then go on maintenance. But I will only have 11 in before the wedding. I might stop at 11 instead of 12. And while taking an extended trip, work on regaining my strength, and think about if I agree with chemo for life, or just want to monitor very close and go back on it if/when signs of cancer return. How would I even know if maybe FOLFIRI and Avastin were the cure for me? FOLFOX almost did it, but not completely. And maybe no chemo can get me completely clear. But who would want to be on chemo for life if they didn't really need to be? An otherwise healthy person would have their life shortened by chemo for no reason...

I'll have results rather quickly this time - Thursday morning before chemo. My parents are suffering scanxiety. They wanted to know exactly what time my scans are. I explained that it doesn't matter - I won't have results till Thursday. They haven't seemed this anxious before, but I reassured them I'm not worried, and I will let them know what I hear on Thursday.

I have a tiny bit of anxiety going, but it has nothing to do with my results. I have two problems. One is I am a bit worried about the IV. Pretty petty thing to worry about, but last time their tech that started my IV blew out my vein. I had a huge (large grape-size) lump in the vein in my left elbow for a few days. That is my best vein for labs, and the techs at my oncologist haven't ever caused trouble like that. I couldn't use that vein for months. I'm back to using it again now. I'm wondering if I should make them use my hand or my right elbow instead? I'm right-handed and normally don't like anyone messing with that arm or hand if I can avoid it.

My other issue is I've hit my days of back spasms again starting yesterday. I can't take my muscle relaxer and drive. I may ask my daughter to drive me even though I planned to drive myself. Otherwise if the spasms get bad, I don't think I can possibly lay still for the scan. I didn't get them too bad last cycle, so I didn't even take the pills. The cycle before I only had to take them twice and it all calmed down again. I didn't take anything yesterday, but it is getting worse, and I'm afraid lying on my back in that uncomfortable position of arms above head might set it off worse.

Once I get through the two hours at the scanners, I'll be fine again. I never worried about all this for any scan before - but they hadn't messed up a vein before, and I wasn't getting the back spasms before... Off to drink my water - looking forward to lunch today after the scan!

Posts: 3692
Joined: Oct 2009


I hope your scan goes well!

idlehunters's picture
Posts: 1792
Joined: Apr 2009

Sending good vibes your way for an awesome scan!!!! You take care!!


lesvanb's picture
Posts: 911
Joined: May 2008

I hope you can take a chemo break!

all the best, Leslie

herdizziness's picture
Posts: 3642
Joined: Apr 2010

Glad you had a good time.
As for the vein deal, I'm assuming you don't have a port (power port in particular), I don't know what to say other wise, I went for my ct scan a couple of weeks ago and after the fourth try it worked, after three very painful tries, he was ready to give up and I asked him to try one more time. He advised me to go to the oncology department and have them access my port the next time, I'm taking him up on his suggestion so I have great sympathy for you on the vein department, hoping it's a non issue for you this next time.
Hoping as well the pills work for your back spasms, I used to get spasms from the oxy, is that your case as well?
Have a wonderful lunch!!!
Winter Marie

CherylHutch's picture
Posts: 1399
Joined: Apr 2007

What a wonderful, wonderful post, Kathryn!! It is so positive on so many levels and I am sooooo happy for you. Without coming out and saying it, you have basically shown the newbies here on the board that Stage IV is just a number and it is what it is so we deal with it as it comes and goes. One of the major ways of dealing with it is with chemo.... and if one can handle the chemo relatively well, then the question does come up "Do I take a long break and just monitor my situation and go back on chemo when needed? Or do I just stay on chemo forever, not knowing if I need it or not?"

That is a question I would say 80% of Stage IV peeps will have to ask themselves at one time or another. I know I'm about to start another regime of 8 treatments of Irinotecan. At the end of the 8 (or before) when we know if it is doing me any good, I will take a break, but then the question will be... if it's doing good should I get right back on it, or should we just stop and let the body be chemo free until it's next needed. Right now I'm leaning towards taking the break and dealing with the treatments on an "as needed basis"... but until that time comes, I won't know for sure which one I will pick. 8 treatments will take approx 6 months which will take me into the middle of our summer. Hehehe... if all is looking good, I'm thinking a nice long break to continue enjoying the summer and welcoming a gorgeous Fall might be just what the doctor ordered.

As for your trip to get the scans. I say... take the pill! Be as relaxed as you possibly can. Arrange for a ride so you can take the pill without worrying about driving, etc. Don't feel bad about asking... you'd be surprised how much family/friends would JUMP at the chance to help out, but feel helpless because they don't know what they can do that would actually help. Something as simple as driving to/from an appt. they will grab onto that because it IS something they can do and they don't have to be nervous about being asked to do something they don't know anything about :)

You' are going to be just fine :)


pepebcn's picture
Posts: 6352
Joined: Aug 2010

I will send you my best vibes prayers and everything from here !

Crow71's picture
Posts: 681
Joined: Jan 2010

Nothing is ever easy for you, but it sounds like you are surviving Folfiri relatively well. I'm also a little surprised that you are at #8 already as well. It seams like you just started.

I hope your scan is uneventful and that the results are what you want.

And I really really hope that you get to take a good chemo break at the right time so that you can enjoy your step-son's wedding. I know that's important to you.

Keep us posted.

You're awesome Kathryn. Keep on staying strong.


just4Brooks's picture
Posts: 988
Joined: Jun 2009

let us know how it goes


lisa42's picture
Posts: 3661
Joined: Jul 2008

Hi Kathryn,

I'm glad you don't have the scanxiety of past scans. It will be what it will be, but I am hoping that it will be like you said- no active disease!!
Please keep us informed.

Take care- you are one strong lady :)


Buzzard's picture
Posts: 3073
Joined: Aug 2008

in all of my days I have never wanted someone to have a better day more than you...I love the calm but yet firm approach that you take in your journey...You are an inspiration to all of us especially me and don't think it isn't noticed around in here...Your grace and dignity outshine all the suns...you are one beautiful individual and I thought you should know that....Love to you and all that surround you......Clift

Lilmiss82's picture
Posts: 257
Joined: Dec 2009

I love your picture and think you look Amazing!! Clift sums it up nicely regarding your attitude, and spirit during this fight :) You are a GREAT woman and fighter that I admire you and clearly I am not the only one -Melissa

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