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For Craig - Sundance - my update and experience with Irinotecan + Zaltrap

Kathryn_in_MN's picture
Posts: 1258
Joined: Sep 2009

Hi Craig,

I was the first one on Zaltrap in Minnesota, right after it was approved.  I haven't been around CSN, but am very active everywhere else.  I heard about your troubles and thought I'd pop in to share my experiences with you in case they may help.  I've still not had any organ involvement, but I have been chasing distant lymph nodes for 4 years, and bone mets for over a year.  Other than my original emergency resection, I have not qualified for surgery ever - chemo only.  I know it is a bummer to hear "chemo for life" but at least I'm still here, and so are many others who are managing a chronic disease this way.  I've had chemo breaks - I've done radiation a few times and RFA, and lots of chemo, and taken some breaks.

Last summer when I had more progression to distant nodes and they finally found my bone mets (CT missed them, PET/CT found them), we had to decide a new plan of action.  I do NOT do 5-FU anymore and have not for over over 2 years.  I've been on Irinotecan since August 2010, with 5-FU & Avastin, and then tried "chemo-lite" of 5-FU plus Avastin.  I progressed.  Added back in the Irinotecan and everything started shrinking again.  Asked to have 5-FU dropped and chemo was easier, plus tumors kept shrinking!  You can't get Oxaliplatin w/o 5-FU, but you can get Irinotecan w/o it.  When I have 5-FU in the cocktail my counts drop so badly that I have to be on multiple Neupogen shots, or Neulasta.  Without it, I do not need the shots and my counts stay better.  Also, even when I got 5-FU, we stopped the bolus after the very first FOLFOX, and I never got it again.  If you get the bolus ask to drop it for sure.

As time went on (I was on combos with Irinotecan + Avastin for 14 months straight) I couldn't tolerate chemo anymore.  I had one reduction in the Irinotecan towards the end.  I then pushed for radiation to 4 stubborn node mets.  Due to location I could not have SBRT.  I did daily IMRT for 2 months.  No chemo during that time, so it was heaven!  And I also earned myself a chemo break for a few months! 

I got a second opinion the first time I was told chemo only - from the Duke Tumor Board.  They agreed.  It was "chemo for life."  But when I started researching and thinking outside the box, "for life" has not been "for life" but "for now."  When I had progression to many more nodes and bones, I got a second opinion.  My oncologist wanted to put me back on Irinotecan since it has always worked for my tumors.  And he suggested I try Zaltrap instead of Avastin to see if there would be any difference.  The second opinion from the U of MN was that I try their clinical trial for Erbitux - every week and I'd have to drive into the city (our winters really suck and the drive could be anywhere from 45 minutes to 3 hours).  I am KRAS mutant, but it is codon G13d, which so far it is about a 50/50 crap shoot on whether Erbitux will work in my case.  So which made more sense?  The proven route, plus trying something new with it, or a crap shoot?  No brainer for me.  I first did radiation to my shoulder, collarbone, T1, T2 and 1/2 of T6 with the machine that was the predecessor to Cyberknife.  I could not have radiation to T5 or 1/2 of T6 because they were in the field of radiation previously and had maximium lifetime radiation.  That sucked because T6 was the biggest most painful tumor...  But I really needed to get on chemo and get things under control, so I dropped the bone worries for a bit.  I did get Xgeva shots to strengthen my bones and I still get those monthly.  Then I went on the previous dose of Irinotecan + Zaltrap intsead of Avastin.

It almost killed me!  But it also really killed the cancer.  My CEA started dropping very quickly - back to normal within 4 tx!  On Irinotecan + Avastin I would hold steady mostly - I did not get this kind of response!  I do not tolerate chemo well.  I am bedridden for the first several days.  But this was even worse.  I am lucky if I can leave my house by day 5 or 6.  Usually not.  On that combo it was not.  It shut my stomach down.  Nothing would go through at all.  SEVERE gastroparesis.  My oncolgist had never seen that.  My GI doc had never seen it - not that severe ever.  I tried several drugs to help - nadda.  And most of them had awful side effects.  After the first two my BP rose also.  It never did rise on Avastin.  I started BP meds but my BP was still crazy.  I lost over 20 pounds within 4 weeks.  I lost almost 30 total.  Anything I put in, liquid or solid, sat in my stomach for 5 minutes or 5 hours, and then something triggered the eject button and up it came!  Totally recognizable, layer by layer, completely undigested.  Friends had to drive me in for IV hydration and I could barely crawl in the door, where they took me immediatelly back to the one room with a bed, where I would vomit during the IV's too.  After the 2nd tx I did some research and suggested to my onc that we hold the Zaltrap for one tx and then go back on it at 50%.  This was the suggestion for anyone who had severe BP issues on the drug.  We reduced my Irinotecan to 75% for #3.  For number for we kept the reduction in Irinotecan and dropped the Zaltrap to 50%.  The BP was controlled ok by meds then, but the gastroparesis did not stop.  My husband was pretty sure I was going to die after the 4th tx.  He didn't want me to do anymore.  I wanted to make sure I beat the cancer down as far as I could, since I knew I would not be able to continue chemo.  I pushed on through one more.  So I stopped after just 5 tx - only 4 of them with Zaltrap.

My CEA was normal - actually the lowest it has ever been!  My scans were clear except for the bones.  After several weeks rest I did STAR Ablation RFA to T6, which changed my life.  Finally most of my pain was gone!  I was able to stop the Fentanyl patch (which is what I eventually had to give in and use for pain - I hate pain meds, but could not live without them).  The tumor at T5 is smaller and can't be reached by RFA and can't have radiation... stuck with that one.  I took a chemo break again.  My stomach would not start back up and I had all sorts of scans and GI appointments.  What got it moving?  Medical marijuana!  A friend in California sent me stuff from her neighbors lab.  (My friend is also a stage IV CRC patient and has a medical MJ card.)  They were pills - capsule form with the weed inside the see-through capsule.  They worked wonders for taking the edge off the nausea.  They also helped with pain.  But the big thing is they got my stomach working again!  I had tried smoking it before, and I coughed and choked and vomited... not the solution for me.  I tried a home-made vaporizor but that didn't go too well either.  The pills are great!  It takes a while for them to kick in though.  Remember your friends getting the munchies after smoking pot back in the teen years?  Well it turns out that MJ makes the stomach empty - so you get hungry!

I had a chemo break.  A few months later more progression.  So I went back on Irinotecan + Zaltrap at those same reduced rates I stopped at.  I have been using the medical marijuana pills again and have not had the gastroparesis issue.  My BP has been nuts though - I went through weeks on end of tachycardia and a very high diastolic number, even when we could get the systolic down.  The issue turned out to be two-fold.  One was Lisinopril was not the right drug for me, and as they increased the dosage it made more trouble for me with my heart rate.  Instead of my usual resting under 60, it was 90-110.  And if I exerted myself at all, like going up a flight of stairs, I would collapse afterwards.  My BP would be crazy like 160/120, then drop to 120-100.  My normal BP is about 110/60 - sometimes lower.  Part of the problem was my pleuresy and ascites.  I've had the pleuresy drained before when it got bad (it is benign fluid).  I have not had the ascited drained - it lights on a PET so is likely malignant.  Chemo helps make the ascites go away, but it does come and go - better days and worst days.  The same for the pleuresy.  It had partially collapsed my left lung, causing shortness of breath and discomfort.  Now it comes and goes, but it affects my BP.  On top of the fluids within the upper body, I was retaining it in my legs and feet on and off too - there were days I was not recognizable.  Now I am on Norvasc (for BP) and Hydrochlorothiazide (diuretic).  I take my BP twice daily (more often if I need to when I feel it gets high and I get a bad headache, etc.).  If my systolic goes over 140 I take one pill, over 160 I take two.  If my diastolic is over 90 I take one.  And I take the diuretic.  If I take one pill and later my BP is up again, I take another.  It isn't a perfect system, but it is working a LOT better.

Over the years both the early and late onset Irinotecan diarrhea have been a big problem for me.  The first time around for 14 months I could not get Atropine - I had a bad reaction to it.  So I suffered with awful cramping and diarrhea during infusion, plus extreme excess secretions - saliva, nose, eyes.  I also couldn't take Lomotil - bad reaction.  But when I went back on Irinotecan with Zaltrap instead of Avastin, I asked to just try the Atropine again.  And it worked!  It is so much better with that drug as a pre-med to the Irinotecan!  I also had allergic reactions to Irinotecan and had to get Benadryl pre-meds always.  I hated that.  I asked to try w/o and I did not have the reactions!  I think it was the Avastin messing with me - somehow the combo of getting Irinotecan following Avastin.  Imodium stopped working for me last fall and I tried Lomotil and it worked.  This time around the Lomotil has stopped working.  I am now on Tincture of Opium.  It was working, but not lasting long enough. I just got permission today to take it every 3 hours.  I can't even have water without it, or I am running to the bathroom constantly with SEVERE stomach and intestinal pain.  I do have bad pain in my intestines on the left side always from about day 4 or 5 until day 10 or so.  It is like the same area as my resection, and feels like it was just cut open.  It does resolve within a day of stopping the diarrhea.  My early onset Irinotecan diarrhea doesn't hit till about day 3 or 4 due to the pre-meds.  I get that under control fairly well, but then the late onset hits about day 6-8 and is very severe and hard to stop.  It isn't a matter of the B.R.A.T. diet or anything like that - just taking a pill with water sets it off.  That is one of the most frustrating issues!

I am not losing weight this time.  After taking the MJ pills I get the munchies (about a 30 minute window an hour or two after taking one).  I take the pills the first 3 days and then stop.  I now have home health care come give me Aloxi (antiemetic) and IV fluids two days after chemo.  That helps a lot - not having to use up energy to shower, dress and ride to the clinic (and find a driver), plus not have to deal with vehicle nausea is great!  My cycles have been running 2 1/2 to 3 weeks apart this time due to one thing after another - a hospitalization, my son's graduation, my grandmother's funeral, a family reunion...  My CEA is not dropping as quickly as before, but after 6 tx I just had a PET/CT.  Everything has reduced a little in size and a little in metabolic activity.  My CEA has come down from where it started - it has been bouncing a bit, but is down.  So I had this "great" idea to try to bump my Irinotecan back up to the higher dose I started with last fall (but kept the Zaltrap at 50%).  I asked if I could do this, and keep my cycles pushed out to 2 1/2 to 3 weeks.  Then instead of 2-5 good days out of 14, I can have at least 12 out of 21.  That has been so much easier physically and mentally - but with such slow results that I thought I needed to get back on 2 weeks, or bump the dosage.  BIG MISTAKE.  This cycle is so awful!  I am going back to the lower dose next time.  And for now I am going with 2 1/2 to 3 weeks for the next 3 cycles at least.

My suggestions for you (you may have already tried some of these):

►Ask to remove the bolus of 5-FU

►Ask to remove 5-FU all together (or at a minimum test you for the enzyme deficiency which makes tolerating it hard)

►Ask to reduce the Zaltrap

►Ask for a reduction in Irinotecan dosing (or at a minimum to test you for the enzyme deficiency for that one)

►Ask for Atropine before your Irinotecan infusion

►Ask to set up home IV hydration and extra IV antiemetics.

►Give yourself an extra week off here and there, and if over time things are well controlled, ask to go to a 3 week schedule.

►If you get BP problems ask for Norvasc, and for hydrochlorothiazide if Norvasc alone does not help.  I've run across several others who had the same problem of Lisinopril not working when on Zaltrap.

The "chemo for life" plan is not what any of us want to hear.  But it is doable with tweaking.  There is no more race to finish X amount of treatments - totally a marathon - no sprint.  Scans are a tool to formulate the plans going forward, not something to fear and be anxious about, but to look forward to for information.  Chemo sucks.  No way around it.  Some people have an easier time with it than others.  I'm in that 2% club where everything goes wrong, and no matter how many antiemetics I get, I deal with severe nausea for at least a week.  And as soon as I'm feeling a bit better, and my BP and pulse comes back up (it drops very low the first 5 days), the diarrhea hits hardest.  Very frustrating.  But, I wasn't supposed to live more than 12-22 months.  Since my dx I saw my 3rd child graduate from high school, my second from college, my youngest from Basic Training (in between his junior and senior year of high school - he has been National Guard for 2 years), and finally my youngest graduate from high school!  My BIG GOAL was to make it until he graduated, and chemo helped me do that!  My new goal is my 3rd child's college graduation next May.  I realize I have to set smaller goals at this point.  But I'm not ready to give in anytime soon!  Four years since dx and still going (after 2 years of misdiagnosis)!

I hope you can tweak your treatments to make them tolerable for you, yet effective against the cancer.  It still won't be a picnic, but with some tweaking you can do it!  I'm not on here much, but you can find me on FaceBook or by email or phone if you want to talk.  Kathryn Finn-Blume on FB.  And I facilitate a "secret" group there for stage IV CRC patients only - no other stages, no friends, family or caregivers - just others who totally "get it" so you can vent when you need to or ask questions or whatever.  Lots of collective experience within the group for every treatment imaginable.  We have over 100 members now - very supportive community.  You are welcome to join us.  I am active with ACS CAN and other aspects of the ACS, but I just really do not like the set up of this website and had so many problems of pages not loading and posts not posting that I kind of gave up on it and went elsewhere...  Colon Club, CCA, COLONTOWN.  Luckily I keep up with most of my friends from here on FB, because that was the only hard thing about stopping the use of this forum.  I keep very busy with advocacy these days - running a support group in my area, and facilitating online, buddies through Imerman, CCA and CT, and several trips to D.C. and my state capitol to call on my reps for issues regarding colorectal cancer, digestive disease and access to medical imaging.  I figure there is a reason I am still here and I use the time I can to make a difference so that hopefully others don't end up in my situation.  It does help me a lot too - focusing on others instead of my misery is a big help.  ;)

steveandnat's picture
Posts: 887
Joined: Sep 2011

Our paths are very similar. I'm starting 5th year of chemo only. I'm currently fighting diareaha from recent chemo and radiation. Im running out of chemos. I'll get ahold in FB.  Thanks Jeff.

herdizziness's picture
Posts: 3642
Joined: Apr 2010


Posts: 1170
Joined: Sep 2012

Very nice of you to take the time to post this, Kathryn.  I hope Craig sees it soon.  I'm sure he and others will find it very helpful and hopeful.

Sundanceh's picture
Posts: 4408
Joined: Jun 2009

Thanks for all of this info, Kat;)

Much of that I've mentioned to the PA today as a matter of fact....they will be making some kind of adjustment...

They think the bleeding I've been having (bad) is not from the Zaltrap...but is my intestinal lining and such sloughing off etc.

Bingo!  That made sense to me...I knew it looked familiar but couldn't place it...I thought I've seen this what is it?

Anyway, I put them on notice that we need to think outside the box and be more flexible.....and not stay to the STANDARD this time.

I won't be able to finish it...

You're a tough gal, Kat.....much stronger than me.  I just can't do this indefinitely....if it's chemo for life and we can't make it any better than this.....and I mean marginally better....then I'm going to consider just stepping down.

All you described is right on....and for me Irinotecan is a zero quality of life drug for me....I can't stand it.

Onc wants to switch me over to Oxy again and yank my spleen.....I'm sure we'd get some 'response' but the neuropathy fallout (for me) and then having progression would just be upsetting. I don't want to go....but I just can't continue every day like this.....

I told them about dosage, infusion times, 3 weeks etc...and a break here or there....like you said what does it matter now?

Take care and we;ll see how it goes.....so happy for you and your ability to keep going.  After nine years though, I'm getting a little tired.

And you know....KNOWING can sometimes work against you now as you get more experience....than when you didn't know what you know now....you know? LOL!


lp1964's picture
Posts: 1240
Joined: Jun 2013

Don't know if you feel better, but at least you sound better. Work with your doctors and fine tune your treatment. It's understandable how you feel and even though I cannot comprehend what you are going through I wish you a state of mind that's beneficial to you.

We all want you better and better days for you.


Kathryn_in_MN's picture
Posts: 1258
Joined: Sep 2009

I'm glad you talked to them about making changes so you can have quality of life.  No point in going through the hell if you can't have good days to enjoy!   I really doubt I would ever do FOLFOX again - that was absolute complete hell for me.   Irinotecan is hell, but not that bad.  Oxy need 5-FU or Xelox with it.  Irinotecan can be done alone.  5-FU is of no benefit to me and only causes troubles.  Oxy was my worst nightmare - severely allergic...  If we can tweak to the point that we have more good days than bad (but of course we also slowly get more fatigued) then I think it is worth it.  When we get stuck in the 2-3 ok days out of 14 stuff, NOT WORTH IT!  I met a survivor tonight at the support group I facilitate who was cancer free for almost 17 years and just had a recurrence.  The onc put her on Irinotecan + Avastin every 3 weeks.  So that is close to what I've been doing - just Zaltrap instead.  I like ideas like this a lot better than sticking to the "standard" and pushing us till we wish we were dead.

I hope you can find a tolerable plan that keeps everything controlled or eliminates it so you can get another treatment break!

tachilders's picture
Posts: 313
Joined: Jun 2012

Irinotecan has been tolerable for me but only at 60% of a normal dose. We tried 80% the first time and I was sick for 5-6 days and ended up in ER as I thought I had an intestinal blockage. Currently getting 5fu at 80% dose, irinotecan at 60% dose, and avastin at 100% normal dose. Have done 2 of those with minimal problems. I have been "chemo for life" from day one of diagnosis 14 months ago. My philosophy is if I am taking these drugs for life, then I have to find a regimen I can live with. I'm not going to be sick for 1/2 my remaining time on this earth. I'd rather feel better but live a shorter time. Life is to be enjoyed, not suffered or endured like some type of torture. Best of luck friend. 

thready's picture
Posts: 475
Joined: Sep 2009

Well it's been a long time my friend.  I'm very sorry about all this. Just wanted you to know that I know of a guy who had his spleen taken mostly because all of his  counts would never come up but 24 hours later things improved a lot.

Also the issues with Oxy nothing to be ignored.  You know the issues and for me they have only gotten worse even though the onc I have to continue with says they have resolved, my primary doctor disagrees, so does the GI guy, neurologist, Internest ophthalmologist and audiologist. 

Take care my Texas brother, keep in touch. Sorry I have not  been around, life has not been fun the past years, but I'm staying on the green side of the grass! 


annalexandria's picture
Posts: 2573
Joined: Oct 2011

So nice to see you pop in here!

I've read that some folks get results that are just as good at lower doses, and my doc confirmed that when it was being discussed for me (the dreaded oxy got dumped completely for the last two sessions, just couldn't hack it anymore).  

You've gotta have some quality of life, and quantity too, of course, but for me, the quality will always have to be the primary consideration.

Taking breaks also helped me.  I added an extra week here and there just to get a little more time for recovery.  It did make a difference.

I'm in your corner, bud...we all are!

Lots o' love~AA

joemetz's picture
Posts: 493
Joined: Nov 2011


you've helped so many in so many ways.  I respect your words always... and I respect your words here as well.

you're a fighter and you've been fighting very hard for a long time.

I pray for you tonight and will continue to pray for a miricle for each of us... especially you.




Posts: 14
Joined: Aug 2013

 It has been one year since my dx and only found this site a few months ago. I have found comfort as well as some advise and answers in these posts.

I very much appreciate your story.



lilacbrroller's picture
Posts: 412
Joined: Jun 2012

Kathryn - You sound like  real trooper, and are an MCRC rock star!  don't give up on us, the "small town" of forums. Your posts contain real wisdom and insights. Nice to have "met" you - good luck with your treatments.


I might join your secret FB group, if I ever get around to compartmentalizing my friends.  I did change my privacy settings though.



Posts: 1428
Joined: Feb 2011

Ahhhh.....good to see you on this site helping Criag out Kathryn :)


Kathryn_in_MN's picture
Posts: 1258
Joined: Sep 2009

Your privacy settings and who you have for friends on FB don't matter when dealing with secret groups.  You cannot find a secret group in a search.   You cannot read any posts unless you are a member of the group.  No one outside of the group can even see that you are in the group.  For closed groups, depending on your settings, others may see that you belong to a group, but they cannot read any posts unless they are a member in the group.  In both cases, you cannot join a secret or closed group without admission by an administrator.

traci43's picture
Posts: 775
Joined: Jul 2007

Kathryn - Such a wealth of information.  I want to save this post in case I need chemo again.  Hope you don't give up on us.

My husband has been trying to get me to try marijuana when I'm getting chemo, and I've been resistant.  I was interested to hear about the pill form because I can't smoke it!  Last time I was on XELIRI and I can take the Irinotecan, but only at 50% because of diarreha and nausea.  Mybe marijuana would help.  Thanks for passing along your info.  Traci

herdizziness's picture
Posts: 3642
Joined: Apr 2010

I can't smoke it either, so I eat it in the form of brownies, cookies or chocolate truffles.  As for the pills my brother used them they weren't as gotheir helping as the real thing was for him.

I never took anti-nausea pills because the weed did so well for me, throwing up didn't happen with the weed.

Winter Marie

Kathryn_in_MN's picture
Posts: 1258
Joined: Sep 2009

I am not talking about marinol, the synthetic pill.  These are the real thing, but put inside a capsule - it is translucent so you can see the weed.  It is made by a laboratory in CA that is licensed and inspected.  The only drawback to taking the pills (or eating brownies, etc.) is that it takes much longer to take affect than smoking.  But smoking is not an option for me.

BusterBrown's picture
Posts: 221
Joined: Mar 2005

 My onc is giving all the rope I need and it's helped. I'm taking chemo every 3wks.  When I take chemo I limp along that following week, I do manage to go to work and get some things done, but I don't feel good. The second week I start snapping out of my chemo funk and start feeling normal, and by the time the 3rd week rolls around I'm feeling somewhat normal! I can live with this for a long while. Several years ago I was doing Folfiri about every 4weeks and treatment lasted for several years, it was totally do-able. I'm very fortunate that my cancer is very slow growing and does react well to folfox and folfiri. As a result, I've changed the way I think, I used to think I could beat this disease, but the last 8.5 years has proven otherwise. I now think that I have a chronic disease called cancer and it needs to be treated.  So, I'll make the best of it and hopefully keep this diseease at bay for as long as I can.


joemetz's picture
Posts: 493
Joined: Nov 2011


you have such a great view on things and your words are perfect. thanks for sharing your thoughts and your plan.

its amazing that you've only posted 162 times.  I wish i could read posts by you each day.

keep up the fight!



annalexandria's picture
Posts: 2573
Joined: Oct 2011

You have an amazing wealth of knowledge, and you do a terrific job of putting it all together in a way that's easy to understand.  


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