Aug 26, 2013 - 9:24 pm
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. ;)