I'm gonna need folfiri and a pet scan. info please?

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arizona mom
Posts: 127
Joined: Thu May 08, 2014 10:25 am

I'm gonna need folfiri and a pet scan. info please?

Postby arizona mom » Wed Sep 16, 2015 6:41 pm

I am so grateful for my friends here to help me through my latest setback...

So... I had a hysterectomy on Friday and my oncologist just called. Path results showed colon cancer in both ovaries. :( He mentioned some syndrome by name (i think it started with a "c") saying it is likely the cancer was in there from the get-go and the chemo slowed it down (my last chemo was in December). I have had a few clear ct scans since then and my CEA has been low, so it was hiding in there pretty well.

My oncologist "drilled" the surgeon who assured him that she removed all visible cancer during the surgery. So, for that, I should feel very, very grateful. I guess that means I am NED?

He is ordering a PET scan. I have never had one of those. Do I still drink the nasty prep? How is it a different experience than a ct scan?

He also says I should do 6 months of folfiri, starting 1 month after my surgery. So how is folfiri compared to folfox? My experience with folfox was on day 2 I would crash for a day or two and gradually get better. I had lack of appetite and a little nausea (but not really throwing up), but mainly just exhaustion. After a week I would feel reasonably normal....and then it would start all over again. I lost a lot of hair on folfox. I hear that with folfiri it is even worse... :(

I know I should be grateful, but I feel so discouraged. Is it dilutional to think I am still on the path to a "cure". Do I need to deal will the probability that I am going to be playing wack-a-mole with something popping up every 6-12 months?

Can anyone offer a little prep talk?

Thanks, Lara
47 yrs mom of 4
5-7-14 - dx stage IV-3 liver mets. CEA 76
5-20-14 Folfox w/Avastin
7-24-14 - Colon/liver resection and HAI implant at MSKCC
11-18-2014 - scan- NED!
12-19-14 finished 12 treatments of Folfox (dropped Oxali after 9)
2-19-15, 6-18-15 clean scans - NED
9-11-15 mets in ovaries - hysterectomy - CEA 1.0
Folfiri 10/15 to 3/16
3-24-16 CT scan NED
7-1-16 It's back. 1cm in lung and 3 peri mets. :(

PEEJAY
Posts: 54
Joined: Thu Aug 27, 2015 2:28 am

Re: I'm gonna need folfiri and a pet scan. info please?

Postby PEEJAY » Wed Sep 16, 2015 7:13 pm

PET scan is definitely longer than a CT and with more direction. ("Hold your breath. Now breathe normal") but I don't remember any nasty prep, just a kind of smoothie drink an hour before.

Irinotecan is a tough drug but, for me, it was better than with Oxaliplatin. Oxali gave me bad neuropathy while Irino just added to my overall "blah" feeling. I was lucky enough to not lose any hair, but the doc did tell me to expect it with the Irino and was surprised that it didn't even thin. Maybe you will be as lucky as me in that department!
Age 33
Stage 4 CC with 20+ mets to liver 1/20/2015
8 Rounds Folfoxiri feb - april 2015
Colon Resection 5/2015
Permanent Colostomy
Peritoneal Carcinoma found
Folfiri + Erbitux 6/2015 - 9/2015
Angiomapping for Y90 9/24/2015
Y90 Treatment 10/13/2015
Power port re-placing sched. 10/23/2015
Due back for chemo 10/29/2015 (right before trick or treating!!!)
11/26 Chemo not working
My colon cancer podcast "I'm Dying Here" in iTunes: https://itunes.apple.com/us/podcast/im- ... 1035722798

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: I'm gonna need folfiri and a pet scan. info please?

Postby midlifemom » Wed Sep 16, 2015 7:32 pm

Sorry to hear of your bad news.

Never had a PET, but I've been on Folfiri since end of January.
For me, it is easier than Folfox. I get tired, but not as bad.
Watch out for cramps and diarrhea - which there are options for control.
My hair was thinning at about the same rate as folfox, until avastin was added, now it's thinning faster. Butt, it's been almost 8 months and I still haven't had to wear a scarf or hat - although those days are coming.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

JDinNC
Posts: 771
Joined: Fri Jul 05, 2013 9:49 pm
Location: Murphy, N.C.

Re: I'm gonna need folfiri and a pet scan. info please?

Postby JDinNC » Wed Sep 16, 2015 7:49 pm

I've had a lot of PET scans done. You go in...they test your blood sugar...they give a shot of a dye...then you sit quietly in a dim room for about an hour to allow the dye to circulate in your body. You go to the room, you lay on a platform ...and they put you in the PET scanner. I hope you can handle closed in spaces because the machine is right in your face. It's a tunnel opened at each end. I find just closing my eyes works...they move you inch by inch through the machine..taking about 45 minutes to an hour. Depending on what section of your body being scan. Then you are done. There no nasty drink.

Hope everything comes back clear...

Jan
61 y/o female @ DX...........
T3N0M1
6/13 DX- stage 4
Sigmoid colon cancer.
One met to lung
7/13 colon resection
8/13 lung resection
7/17 four years....NED
8/18 five years....NED
MELANOMA
63 y/o @ DX
6/15 stage 2a
7/15 surgery on arm
7/15 NED
4/16 recurrance
5/16 remove metastasis from back
5/16. Started immunotherapy
8/16 discontinue treatment
7/18...PET scan...NED

User avatar
Mastan
Posts: 433
Joined: Sat Feb 19, 2011 11:12 am
Location: Albuquerque, NM

Re: I'm gonna need folfiri and a pet scan. info please?

Postby Mastan » Wed Sep 16, 2015 8:31 pm

Based on your recent path results you are not NED. You have metastic disease. Sorry. The PET is simply to find out where else the disease may be. If you are lucky it will be contained to the ovaries at this point in time. In which case a surgical option may be on the table. Regaring the PET scan itself, lying perfectly still for 45 mins has been the biggest challenge.

Good luck on your scan,

Mark
Dx 6/2010 rectal CA

Nik Colon

Re: I'm gonna need folfiri and a pet scan. info please?

Postby Nik Colon » Wed Sep 16, 2015 11:19 pm

As far as PET, I remember them injecting me with what i believe they call a radioactive sugar? then waiting 40-60 mins or so b4 scan, it's like a longer ct and moves very slow and quiet to the point I was wondering when it would start! So a bit of a wait to finish unlike the quick ct. Iri, I felt crappie as far as nausea and fatigue plus lost my hair, but you don't get the tingles and such like oxi.

Just adding to other comments...I lost half my hair in 1 day going into the 3rd week after 1st iri. And yes it's tighter space but not as tight as MRI and not noisy like MRI, As I said, you may feel like it's not even moving. Also, iri can cause diarrhea, if so you can ask for atropine, in my case I asked right away and actually got constipated, 2nd I didn't have iri but 3rd had 80% iri and no atropine which works cuz I also take pain meds which cause constipation so it seemed to equal it out, so you may want to try w/o atropine at first, they can give it during if you are having cramping, etc, or wait til next tx to see if you need it or not if you get diarrhea.

Hope you have a better iri experience than me
Last edited by Nik Colon on Thu Sep 17, 2015 2:28 am, edited 1 time in total.

stu
Posts: 1394
Joined: Sat Aug 17, 2013 5:46 pm

Re: I'm gonna need folfiri and a pet scan. info please?

Postby stu » Thu Sep 17, 2015 1:34 am

Hi.
Regarding still hoping for a cure. That still seems within reach to me. My own mum had a quick recurrence after her liver resection. It was so disappointing. Back to chemo and more surgery. The last four years have been treatment free and lots of living.
Glad you have had it all surgically remove and a plan in place.
Much love
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

PainInTheAss
Posts: 663
Joined: Tue Jul 02, 2013 3:08 am

Re: I'm gonna need folfiri and a pet scan. info please?

Postby PainInTheAss » Thu Sep 17, 2015 6:36 am

My tumor broke through my vaginal wall so I had my ovaries and uterus removed pre emptively to avoid this kind of spread. Ovaries are in the pelvis so this type of spread is less worrisome than, say, lungs or another liver met. Sounds like it just wanted to hang around the pelvis area, so maybe that's as far as it went. Yes, you do still have a chance for a cure. Hopefully the PET will show you are all clear.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

debb
Posts: 186
Joined: Sun Dec 21, 2008 9:03 pm
Location: NJ

Re: I'm gonna need folfiri and a pet scan. info please?

Postby debb » Thu Sep 17, 2015 1:24 pm

Hi...hope you are recovering well. As I've told you before, I did not have systematic chemo after my recurrence on my ovary. But I did just complete 10 weeks of Folfiri & avastin to help deal with a plueral effusion in my right lung, where I have 3 small nodes.

Folfiri was easier than Folfox for me. I never had any major symptoms, like bad diarrhea or bad nausea. I think I had a lot of info from this forum and from my Folfox experience. I felt like an "educated consumer." I knew what to ask for and did it right away, before anything got out if control. Of course, I generally felt more yucky with each treatment, but not as devastating as evil Folfox. My hair thinned, but not worse than Folfox, and I noticed but no one else did.
Good luck!
Stage 3C, Dx at 42, mom of 4
Colon resection 7/08
Folfox 9/08-2/09
Met to right ovary, both ovaries removed 7/10
HIPEC 8/10
VATS 7/12, 2 nodes, right lung
10/14 3 lung nodes, Stivarga clinical trial
3/15-7/15 Folfiri & avastin for lung things
Break! One+ year of freedom
8/16 Folfiri & avastin..lung things again
Break! 10 months of freedom
1/18 rib mets, radiation, folfiri & avastin
1/19 rib mets again, radiation, folfiri & avastin

hummingbird3
Posts: 56
Joined: Sat Sep 14, 2013 5:11 pm

Re: I'm gonna need folfiri and a pet scan. info please?

Postby hummingbird3 » Thu Sep 17, 2015 4:26 pm

Wishing you lots of luck on the pet. Glad to hear you are getting one .. this will give you good information.

I did have to drink water to fill bladder for better image, then radioactive sugar injected followed by waiting for about and hour in a chair, resting with a blanket to keep body heated. This helps imaging. Then off to the table to be very, very still. "Take a deep breath, hold, now breath" will forever be in my memory :P . Instructions after.... drink lots and lots of water to flush.

Folfiri ... better for me than Folfox ... lost and thinning hair was the same. I would definitely ask for antiemetic's. Felt crappy on both as far as fatigue. I did get hot flashes beginning the hour after beginning infusion, and they continued every hour on the hour for at least 24 - 48 hours .. then subsided some. Nausea accompanied those flashes. Crackers, crackers, crackers for the first 24-48 hours .. by my bedside. Also, potato chips strangely helped.

Do the tx's ... aim for cure! Don't let anything else cloud your thinking. You got this! Just stay focused and positive. If you have to play whack a mole again .. then just whack harder next time! :wink:
9/11 dx CRC, colectomy/ileostomy, Stage IIIC :shock:
11/11 - 6/12 FOLFOX/nulasta
7/12 watching possible cyst on ovary ... 8/12 it grew
10/12 hysterectomy, oophorectomy, complications/blockage, TPN
Stage IVa
12/12 small bowel resection
3/13 -9/13 FOLFIRI/nulasta
NED
10/14 - 2/15 close monitoring
4/15 it grew
PET/biopsy .. local recurrence
8/15 surgery
NED ... No chemo!

arizona mom
Posts: 127
Joined: Thu May 08, 2014 10:25 am

Re: I'm gonna need folfiri and a pet scan. info please?

Postby arizona mom » Thu Sep 17, 2015 4:40 pm

Thank you all for your replies!

I'm feeling a little better now, getting over the initial shock of having to start chemo over again.

I'm not so good in closed in spaces. I might need to take an extra dose of ativan on pet scan day. I'm trying not to stress over the possible results. After all, just 10 days ago I had a seemingly clear ct scan and cea of 1.0! Of course, I always go into these scans terrified that they will find my body overcome with cancer.

Debb, How are your lung nodules? Isn't there another approach besides chemo? I hope they are getting those under control for you. Are you still being seen at MSK?

Lara
47 yrs mom of 4
5-7-14 - dx stage IV-3 liver mets. CEA 76
5-20-14 Folfox w/Avastin
7-24-14 - Colon/liver resection and HAI implant at MSKCC
11-18-2014 - scan- NED!
12-19-14 finished 12 treatments of Folfox (dropped Oxali after 9)
2-19-15, 6-18-15 clean scans - NED
9-11-15 mets in ovaries - hysterectomy - CEA 1.0
Folfiri 10/15 to 3/16
3-24-16 CT scan NED
7-1-16 It's back. 1cm in lung and 3 peri mets. :(

User avatar
rwightman
Posts: 211
Joined: Sat Jan 17, 2015 6:50 pm
Location: Southwest

Re: I'm gonna need folfiri and a pet scan. info please?

Postby rwightman » Thu Sep 17, 2015 4:58 pm

Lara, I am super claustrophic. If you take an extra ativan you will be fine. It is nothing like an MRI. When I had my MRI they had to do the IV anxiety drug and I was in the bigger machine too. LOL. Years ago I attempted to have an MRI for a shoulder injury and I requested the open MRI - that was false advertisement. I bailed off the table after about 30 seconds and looked up where a team of techies were watching through a window. It was super embarrassing but the tech that was in the room with me said about 3 people bail a day, so I guess I am not alone.
10/9/14 DX Age 50 - MSS
10/23/14 - Colon Resection - Stage II - 0/15 lympth nodes
12/30/14 - Stage IV - 1 liver met 2cc - Liver Resection - No lymph nodes and margins clear
3/10/15 - peri mets
3/15 - Folfox with Avastin - 7 tx
7/15 - HIPEC - 2 peri mets
10/14 - resection of abdominal met
11/12 - 5FU

CM35
Posts: 265
Joined: Tue Dec 03, 2013 1:16 pm

Re: I'm gonna need folfiri and a pet scan. info please?

Postby CM35 » Thu Sep 17, 2015 8:27 pm

Lara,
I have had at least half a dozen PET scans, the last just 3 weeks ago. PETs are easy, it has the big "donut hole" like the CT, but your body inches through it over about 25 minutes. I have never had to do the "breathe in hold your breath" instructions with a PET, so my experience in that regard is different than what others have mentioned. I take some "relaxing medicine" in the waiting room once I arrive and sleep right through it... :wink: You will be great!
stg IV 4/2013 @34 - liver, ovary/peritoneum
Lots of chemo, surgery and good luck - still doing well 03/2016...


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