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Scan Results and Next Plan of Action

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Well, I got the results from my CAT scan after 8 Cycles of Xeloda. Definitely not what I was hoping for! The last CAT scan was in Sept and the results were great! Not only had the tumours in the lungs stopped growing, there was a 30% shrinkage, and that was after only 4 Cycles. So, 4 more Cycles and of course I was expecting another 30% (wishful thinking) shrinkage, but more realistically maybe 10-20%. So, you can imagine my disappointment when my oncologist said that the results certainly help in explaining why my CEA is slowly rising. There was 0 shrinkage in any of the tumours and the two largest ones had started growing. So the cancer is now not responding to the Xeloda. This is not unusual, but it is extremely disappointing that it has happened so quickly.

The plan of action is first, to give my system a break from chemo and allow the chemo that is currently in my body, have a chance to leave. I will be getting a port surgically inserted at my old port site, at the end of January. Then starting in February, I will be getting Irinotecan infused every 3 weeks.

In the meantime, she will be talking to my kidney surgeon/specialist to see if he thinks it would be a good time to ablate (RFA) the tumour in my kidney. It is stable... it has not grown and is not showing any activity, but it's a tumour we don't need to hang onto, so it will be up to him if he thinks this would be something we should do while on the break from chemo or ??

I am now going to have to see if I can dig up some of the old discussion threads where people were talking about Irinotecan and how they found the chemo and it's side affects. At the time, I skipped over those threads since it wasn't a chemo I was on or had tried. Now I'm going to have to go through having the port and probably new side affects since this is a new (to me) chemo.

Cheryl

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

I'm so sorry. George and I know the "rug pulled out from under you" feeling for we recently also received very disappointing news. We see our doc on Monday for the results of the second liver biopsy that was done this week. The plan, if the growth is indeed CRC mets and not something new, is CPT-11, which as I understand it is what you will get, just a different mix. Diarrhea is what we were warned about. Seems more people get it than don't. George also has lung mets. Some experience hair loss and some don't so be prepred for that. Some board members advised me that this chemo is much easier to take than Folfox and since George did not experience horrible side effects from Folfox we are hoping for the best.

Last visit the doc said after the "we now have to treat this as a chronic disease speech" that the CPT-11 will be weekly, 3 weeks on and 1 week off.

George was on 5FU and Avastin for over a year and it kept things stable and shrinking and he had a wonderful respoonse to Folfox so we are hoping for the best. When dignosed in March, 2009, he was advanced Stage IV.

Hang in there, as hard as it is, and we wish you success in your new treatment.

Take care - Tina

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

Hello Cheryl....not great news but we can go with that one hon....sorry i have not done irinotecan ....they are saving that one for me. I asked last week what my next drug for lung mets would be and that was the choice.

It is a bummer to have to start over and over....just when you think you get stable....so i think a little rest would be good, and a new mind-set and then away you go....there must be lots of people here with irino experience

hang in sweetie....sending big canucky hugs and a Timmie's

mags

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

What tough news CheryL, especially after having had good responses so recently! I empathize. Keep us posted, and sending you lots of hugs.

all the best, Leslie

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

I can only imagine your disappointment. BUT you are one of the strongest people I know...and so I am sure you will face this latest challenge as you have all the others...with grace and strength and fighting like hell!!!

I'm wrapping my arms around you, dear soul!!!!

Hugs, Kathi

standbyme's picture
standbyme
Posts: 41
Joined: Sep 2008

My husband has had 2 years plus....52 rounds of folfiri,(irinotecan, 5-FU and leucovorin) plus avastin. He, just this past week, was switched to folfox because of progression with lung mets. The side affects for him were minimal...thinning hair, drippy nose, easily controlled diarrhea, and some tiredness. We hope he has good response to folfox.
He didn't find it awful and was able to do most things. That said, I know the side affects are different for everyone.

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

is going to be just an small unforeseen in your way to the victory!
Hugs!

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

Cheryl,

Crap... so sorry to hear that the Xeloda isn't working any more. It will be good to let your body heal up some over the holidays. I hope you get results from the new treatment. I am thinking of you and just sorry you have to get the port back in. I know you are a fighter.

Aloha,
Kathleen

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

First... I want to thank you friends who jump in with support and encouragement. Even though we sometimes are given these challenges that appear to be quite daunting... it's amazing how just a comment/note from friends who totally get and understand what we are going through, can change one's "poor me" attitude. I think it's ok to have a "poor me" moment, whether it lasts a whole evening or into the next day... that's ok because, damn it, no one has done anything to deserve this disease. Just like no one has done anything to deserve a brain aneurysm, or a stroke, or a fatal accident. Sure, we can blame contracting the disease on lifestyle, or attitude, or lack of certain beliefs (no one really knows why so many get this, although there are lots of opinions)... but the bottom dollar, no one DESERVES this nasty monster who has moved into our lives.

So, it's time for me to regroup my thoughts, readjust my outlook so this new scenerio fits into my comfy world of denial and then readjust my daily schedule of always being on the go to fitting in chemo appts. and a day or two to laze about "recouperating" if needed.

Tina... thanks for the heads up on how George is handling it. At this point, I won't be having the Irinotecan (which yes, is the same as the CPT-11) mixed with any other chemo... I'll just be getting the Irinotecan by itself and I'll be on the once every 3 weeks for a 90-minute infusion. I did find this fairly comprehensive information about Irinotecan (Campto, CPT-11) that might be of interest to others who may be starting this chemo at some point::

Irinotecan

Click on the link above and then on the link listed for Irinotecan when you get to the page.

So, time for me to regroup and I already have started. I have an 8 week break of no chemo starting now. It's possible Dr. So (kidney surgeon) may recommend that we get rid of the kidney tumour during this 8 weeks, hence there will be an RFA procedure to blast the little sucker. But there will be no chemo for at least 8 weeks. Although I'm busy with all my theatre projects, I am purposely going to make some time for ME. Nothing planned other than to just enjoy some down time... maybe scheduling some days just to laze about reading, or doing some "Me" projects on the computer like updating my blog, or just going out with the dog and my camera. I'll still have all my theatre work but rather than work on that 24/7, I'll actually call a time out and some days I just won't be available ;) This next 8 weeks will be to do the things I always enjoy doing (my theatre work) but also to focus on ME to get rested, relaxed and psyched up for the next 6 months of this journey. Hmmm... I may even look at doing some rearranging of stuff in my apartment, on the off chance that while I'm on this new (to me) chemo, if I end up having to spend X days of each 3 week cycle at home, then it will be all set up for so that it's all about me and my convenience ;) I've already started with the bedroom, making that my "entertainment" room. I bought a new 32" HDTV, a PVR (I think the equivalent is a TIVO machine (?) in the States), a Blu-Ray Disc player. Last spring, I bought a new adjustable queen size bed with one of those new latex/memory foam mattresses... so comfortable and quite decadent to have a wireless remote where you can lift the top of the bed so you are in a comfortable position for watching TV, or raise the foot of the bed, should you need your feet/legs elevated. Total luxury... not a necessity at all but what a difference in comfort! I guess now, I need to go on a shopping spree and pick up a bunch of Blu-Ray movies/TV series that I haven't seen before ;)

All is good... and it will get better as my mind grapples with the reality, chops it up into easy pieces that I can put on different shelves in my mind and then just tackle what I need to tackle at the time I have to tackle something. I'm very good at compartmentalizing so I only have to deal with small chunks of life at a time. But when someone throws me a big whopping thing like all the complexities of "Your chemo is not working. We will stop it. We will start you on a new chemo that will have different side affects than what you've had so far. We will surgically insert a port again. If the surgeon recommends to get rid of a tumour in your kidney, then we will have that done as well. More scans. More blood work. More...more... more! It can be overwhelming and I zone out and/or get upset because I can't work with all these different things in one appointment/conversation. But once I can compartmentalize the information, then I can deal with it much easier when I just have to deal with one chunk at a time :)

Soooo... another babbling post by yours truly. Sometimes (for those who are new here and wondering who the heck is this CherylHutch person?) I find that if I just type what thoughts are running through my head at the time I'm at the computer, disjointed as they might read, it is actually very therapeutic. So you all are my therapists... sitting there, nodding your heads up and down with the occasional "Hmmmm..." "Yes, but how do you REALLY feel?" :D

Cheryl

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CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

This is so great.. you are the first person on this board that I have ever known to be able to say you have met my onc. Sharlene is absolutely fantastic!! There are not enough fantastic words to say about her. Not only is she extremely smart and intelligent, she is magic when it comes to compassion. She can be compassionate without being sucky sweet. That's not exactly the words but I think you know what I mean. I agree, anyone who has her as an oncologist is in good hands!

If you don't mind, I may PM you on occasion (or maybe we can exchange email addresses in PM). You have a headstart on knowing the side affects of this chemo, so I may have questions as we go :) I won't be starting it until February... Sharlene wants me to have a good break so that there is no trace of the Xeloda in my system when I start the Irinotecan. I know in the past when we talked about if/when I might need to go back on chemo, she would not put me back on the FOLFOX since I got such bad nerve damage in my legs/feet that didn't go away when I was finished the 12 rounds. So she mentioned Irinotecan/Avastin as one combo.... and that is probably still an option down the road. Yes, I have high blood pressure, but it's totally under control with meds.

I have started a little list of the pros/cons that I can be expecting and one of the pros that I've come up with is... I go in every 3 weeks for a 90 minute infusion. That is a shorter time than when I did the FOLFOX for 3 1/2 hours... and then had to go home with the pump for 46 hours. I won't be needing to go home with a pump!!! YAYAYA!! Just get it done at the Cancer Agency and then go home, with no attachments :D

It almost sounds like the symptoms are very similar to the 5FU.

I will talk to you in PM about your Vit C IVs... and which integrated health clinic you get them at. Thanks for all the information!!

Hugggggs,

Cheryl

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scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

Sounds like you've got a good plan though! Go get the ******* cells, sending southern vibes out and up your way.

Lisa P.

PS I want a Timmies too and you, Mags and the others living up there in snowbunny lands come get this cold weather snow that I have. I'm not used to it and don't want to be.

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

Hi Cheryl,

Good to hear from you again- I've missed you on the board lately, but I'm sorry you're back reporting that you're not responding as well to the Xeloda anymore. I know that feeling all too well, unfortunately, of having scan results that leave you with a punch in the gut and the worry of having to do new treatment, change treatment, wondering if it will even work, etc.
But I also know how fiery and on top of things you are, so I know you will muster the strength to go on the irinotecan and fight it harder again!
I'm glad that your onc is consulting and cooperating with other specialists. Sounds like the chemo break would be a good time to take care of the stable kidney met. I do know I'd want it out of there, if it were me.

Hope you can look at the upcoming break from the Xeloda as a time to regain strength and relax over the holidays before having to start the tougher fight again.

Hugs to you Cheryl,
Lisa

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

So sorry about your disappointing news. Glad there is another plan of action.
I can't tell you a darn thing about the Irinotecan, but hoping it'll be easy on your body.
Thinking about you, wishing for the best.
Winter Marie

taraHK
Posts: 1961
Joined: Aug 2003

Hi Cheryl

So sorry to hear this disappointing news. Glad you are getting a plan of action in place.

I am on Irinotecan (CPT-11) now. I'm actually on Xeliri (xeloda plus CPT-11) plus Avastin.

My side effects from CPT-11 have been minimal. The only thing to watch out for is acute diarrhea (and by acute, I mean acute. As my onc said "you will know"). Not necessarily right after infusion -- for me, it hit on day 8 or so. You will need to be prepared (immodium, or stronger). I had this several times. Then my onc decreased my dosage, it went away, increased dosage again, no problem (weird). Other than that, I don't really notice any side effects -- (the usual fatigue, mild nausea).

I've done 14 cycles now. My onc has one patient who has done 26 and is coping well. So, some people at least can tolerate it well.

Good luck!

Tara

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Your attitude is awesome and inspiring.

First off - my wish for you is that you have the same side effects of irinotecan that I did, but with better results. Tecan was a piece of cake (compared to oxaly), for me and my tumors. I was fine and my tumors grew. I kept waiting for the runs, but they never came.

I hope they blast the ******* **** out of your kidney tumor and the Tecan takes care of the rest.

Enjoy the chemo break. Keep smiling.

Roger

AnneCan
Posts: 3692
Joined: Oct 2009

I sorry you didn't get the news you wanted to hear. It sounds like you have a great onc. And your attitude is so fantastic. I am on folfiri + avastin (26 rounds so far). For me, the greatest side effects from the irinotecan are hair loss (extensive), diarrhea, fatigue and some nausea. I do also get the stomach cramps during infusion + they have been getting worse, so now they give me atropine (sp?) first. Enjoy your chemo break, + best of luck with next steps.

bruins1971's picture
bruins1971
Posts: 227
Joined: Nov 2010

Cheryl,
I am very sorry to hear about this new set back. I am sure that you were disappointed but at least there are still options and so long as you have options you have a road to beating back this cancer. I hope you enjoy the Christmas and New Years Holidays and then it's time to get on your kicking cancers butt boots and do what you do best and that's fighting this beast.

Bobby in Dallas

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hey Anne!

Wow... it just goes to show it really is true that no two people react the same to treatments, hence even though we can call our cancers by the same names, they are as unique as we are. I have a hard time getting my head around that concept. I mean, I read it, I understand it, but then when it comes to starting a new treatment or having a new development in the pattern of my cancer, I immediately come here and ask if anyone else has had this treatment or this development and want to know how it was for them. Your experience with the Irinotecan is so totally different than Kathy's (up above). When you were in the Irinotecan was that with in the Folfiri + Avastin mix? Or did you have Irinotecan all by itself?

I know I have a good break over Christmas/New Years and then the month of January... so I'm taking that time to prepare myself for the worst of side affects and the best of side affects, so that I'm prepared for either and everything in between. The worst thing for me would be nausea/vomiting and/or severe diarrhea. Anything else, I can pretty much handle. Oh, and when I was on the Oxypilatin , that was horrible for me. That's when the nerves in my lower legs/feet got damaged and I was super super sensitive to the cold. To the point if I was in a room and the temp was lower than 72F, my throat would freeze up just from breathing the air. I have never experienced anything like it and hope to never again. Even my onc said that she would NEVER put me on the Oxy again ;)

Ok... I'm taking notes :D Thanks for your input!!

Huggggggs,

Cheryl

AnneCan
Posts: 3692
Joined: Oct 2009

I have never been on irinotecan alone, only as part of folfiri + avastin. I really have found it mostly tolerable. It also has been pretty effective for me so far. I hope you have great success with it.

BTW, my oldest daughter is doing her masters in theatre studies.

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AnneCan
Posts: 3692
Joined: Oct 2009

I am high-fiving you back! Yes, it is 26 unless I lost track + it is 27! I have short breaks when neutrophils are low or I am dehydrated. My dilemma now is whether or not to take a break over the holidays. I will be seeing my onc tomorrow + will discuss. How are you doing?

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

Hi Cheryl, first of all, thank you for your support of me. But more important is you- you don't quit! I did irronotecan for over a year. Not much hair, but it was pretty easy on me. So, it didn't work well, but better then most of the stuff I took. It can and will work for you! Take this time off to rest and recop! I am trying to use that attitude so I will be ready for the next round of whatever! Best to you always - Jean

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

i am thinking about you hang in there

michelle

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