New to CSN - Stage 4 Colon Cancer
Hello, my name is Scott. Over the past several days, I have been trying to research information about upcoming chemo treatments and side effects relating to the Avastin/Irinotecan/Xeloda regiment. The research journey has taken me everywhere and eventually to the CSN discussion board where I have found solace in the discussions, experiences and recommendations. Following a routine colonoscopy in March of 2015, I was diagnosed with colon cancer that metastasized to 6 lymph nodes. The next 7 months consisted of colon resection surgery and biweekly chemo treatments. Post treatment scans and blood work looked good. Fast forward 1 year, blood tests and CT scan identified new spots in the liver and lung confirmed by a biopsy. Week before Christmas, I underwent liver resection surgery and currently healing with chemo treatments scheduled for January 27, 2017.
During treatment, I must continue to work and be active as a frequently interface with customers and run project teams. I am very concerned with the management of Avastin/Irinotecan/Xeloda regiment and predicted side effects. I know that treatments impact each of us differently. I also know that there are high levels of probability that I will experience nausea, diarrhea, hair loss, hand-foot syndrome and a long list of other undesirable side effects. From those who have experienced this, or similar situations, any advice?
Much appreciated…..
Comments
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Welcome to the forum, Scott
I'm sorry you find yourself here, but now you are, you'll no regret finding us.
It sounds like your journey has already been a rough one, and you proablby know the next round is not going to be a walk in the park.
My treatment was the Oxi/5FU combo, so I can't help you with advice on your new cocktail. Many others here have done, and will be along soon to share thier wealth of infor. What I can share is support as you move forward. We're here for you with answers and as much emotional support one can get through a computer screen.
TRU
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Welcome Scott. Sorry you're
Welcome Scott. Sorry you're here. We'd all love it if nobody ever had to join this group again. I'm sorry, I have no information to share. I didn't lose my hair but I was on a different chemo cocktail. I was told that if I drank a cold drink during chemo it would reduce the chances of having neuropathy. I found that it didn't work.
My only suggestion is to make sure you're not prone to blood clots. I have a long story about being on chemo and almost dying from a blood clot, which chemo can cause, but I understand that it's rare.
Best of luck with everything!
Jan
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I take Xeloda and Avastin
Scott,
I have been on Avastin and Xeloda as maintainence chemo since July 2016. I have not had too many bad side effects yet.
At first I had problems with heartburn, and took prescription antacids for that, but they caused constipation so I discontinued taking the antacids and just avoid foods that cause heartburn. If I take the Xeoloda after eating, drink alot of water with it, and make sure not to lay down for at least an hour after taking it, usually don't have the heartburn.
Other than that I have dry skin on my feet and hands, some issues with fingernails being more brittle to the point of splitting or breaking off even when I try to keep them short. I use alot of coco butter lotion on feet and hands, also use coconut oil, mango oil, and bought some mango nail oil. The pharmacy recommends Eucerin or Udderly smooth hand and foot cream, but I havent tried those.
My hair has actually grown in since I got off the Oxaliplatin. It is healthy and growing about a half inch per month.
I have been more tired than usual, seems like I need 9 hours of sleep per day. I also run out of energy more rapidly, so am not as active as I used to be. I heard that chemo can cause chronic fatigue syndrome in some people, so that may be what is happening with me. I do have some trouble sleeping at night where I have a hard time falling asleep and/or wake up in the middle of the night and can't get back to sleep. Trouble sleeping has been reported as side effects, and can also cause my lower energy levels. When I am able to get a good nights sleep I function much better.
I consider myself to be very fortunate to be surviving with Stage 4 colon cancer! It is truly an answer to the prayers of myself, my family, and many people who care about me. I have some other chronic health issue, such as arthritis, carpal tunnel syndrome. but am able to manage the pain most days without taking pain killers. My doctor believes I have many years of life ahead of me, so I am going to believe him.
There are many days that I forget I even have cancer - usually the 7 days I am off the Xeloda I feel great! I feel pretty good even the 14 days on too.
Hope this helps you. Feel free to read my page about my past treatments.
Good luck!
Joan
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So sorry you are here. 10
So sorry you are here. 10 years survivor for me as a stage 4 guy. I am a teacher and coach and continued those the entire time. Tired...yes... bowel issues...yes. I was very open and people knew I had to have access to bathroom as I went from one extreme to the other. Consistent diet helped even though it was boring. You can read profile but I had liver and lung mets and surgeries for them. Just try to be honest, take time when you need it, try to keep positive things and people around you. Working really helped me as it allowed me to stay focused on something else. I did go on an antidepressant for a while as I hated the big mood swings around each scan.
All my best
chip
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I've done that regimen
I've done that regimen and other than infusion day, I was able to work. Keep your hands and feet moist to keep from getting blisters or peeling. I used Gold Bond aloe formula lotion, but others have had equal success with other lotions, basically it needs to be thick and creamy. Use it morning and night. As far as the irotecan goes, I had no problem for the first 4 rounds, but round 5 was a doozy! I had uncontrolled diahrrea that forced us to cut short a trip to NewYork because I was so tired and dehydrated. Reducing the amount of irinotecan helped with the diahrrea. Some folks had success with Lomitil, but it did nothing for me. Basically the irinotecan killed my intestinal lining and until it recovered there was no way my intestine was going to absorb water. At least that was what my Oncologist told me. I had a bit more hair fallout than normal, but definitely kept my hair and I was even coloring it every 2 months. It definitely grew slower when on chemo. The only time I had nausea was during infusion, even with the anti nausea drugs. I would throw up towards the end of the infusion and was fine after I did that. This is definitely easier with far less fatigue than FOLFOX. Good luck to you, Traci
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Thank you for your replies and support
I wish to thank everyone for their replies and support as this has greatly helped me in many ways....
As events progress, I will provide updates as appropriate.
In am very appreciative of the CSN website, valuable resources and especially the network support offered by those whom this disease has touched. As a result, I will contribute when I can. As have learned, a few simple words can make all the difference in the world for those in need.
Scott
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CRC with liver mets
Hello Scott - I have CRC with liver mets - told I have 15 lesions in liver throughout lobes, and have been told it is inoperable. My treatment is called Folfuri every 2 wks - chemo involves three steroid pills and anti-nausea pills, then 10 minutes of avastin, then 1 1/2 hrs of irinotecan (have 2 shots of atropine 45 min apart for cramping that irinotecan can cause), then 5 Fu push (about 2 min I think), and then I have a 5Fu bolus attached to port for 2 days. A nurse comes to take off the bolus. I take one steroid and ondansetron for nausea the night of chemo, and one am and pm the next day. I usually don't sleep the first night (they say it is the amt of steroids that keep you wired up). As a result, I am quite tired for some days afterwards. I also have had treatment reduced and delayed due to low white blood cells. Have 5 days of neupogen shots to help with WBC counts. Have had spinal, chest, sternum bone pain from shots - take tylenol and it helps control the bone pain. My main side effects - mouth sores, nose bleeds, sharp heartburn (take pantolac 40 mg - helps a lot), nausea and lack of appetite, each treatment has caused diff issues with constipation and diarrhea (just have to see how things go each time), fatigue. Because of the side effects of the WBC shots, I feel pretty good about 4-5 days before next chemo - you may feel better earlier if you don't have to have these shots to maintain your WBC counts. I am losing lots of hair, very thin - wear a wig when I go out, and may have to buzz it shorter soon (have had 7 treatments). I have not had any hand/foot syndrome side effects - just a little numbness in toes first night of chemo. Best of luck to you Scott.
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CRC with Liver Mets
Bellen,
Thank you for sharing your history, treatments and side effect experiences. While the chemo and support medications are critical for disease irradiation, the physical and damaging impacts to the body are phenomenal. Pain, nausea and other side effect management are critical throughout. I was lucky in that my liver met was operable and appears to be healing. Due to the fact that the liver does not heal well while taking chemo, my treatments were delayed and start the end of this month. In preparation, my port install is in two weeks. I do not look forward to the stronger chemo drugs previously taken and impacts of resulting side effects. While a person can become more educated, plan and prepare, the ongoing and ever changing symptoms will dictate what a person needs to do each day to survive to the next day. Your sharing of information has been helpful...
I wish you the best during your journey and hope the treatments effectively do what they are intended to do. Please keep me / everyone updated.
Take care,
Scott
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I was wondering if any of you know good places in s. calif to go to for a second opinion for resection...two new spots in right lobe, possible one in dome of liver..four small possibilites in lungs and one retroperotenial node in abdomen.......doc wants to put me on lonsurf and i have wanted these darn things out from the beginning but none would refer me to a surgeon so i called a place in newport and have an appt there soon...If impactzone will respond about stanford i would appreciate it...as he went about how i wanted from the beginning.....
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Stage Four Colon Cancer
Scott,I have lots of experience with stage four colon cancer and am now in remission. If you would like to read my story and learned what worked for me just go to my blog and read my story entitled "How I Beat Stage Four Colon Cancer" blessed39
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Stage 4blessed39 said:Stage Four Colon Cancer
Scott,I have lots of experience with stage four colon cancer and am now in remission. If you would like to read my story and learned what worked for me just go to my blog and read my story entitled "How I Beat Stage Four Colon Cancer" blessed39
Hello blessed39,
Thank you for sharing your story and experiences as I have found them to be very beneficial. Your insight has given me / others the hope we all need.
For me, liver resection and incision appear to be healing. Post op follow up on Monday with surgeon to confirm. Reinstall of the port on the 20th, and then chemo start up again on the 27th. Not looking forward to it, but it must happen.
Thanks again for taking the time and your continuing support…….
Scott
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dancer2 said:
I was wondering if any of you know good places in s. calif to go to for a second opinion for resection...two new spots in right lobe, possible one in dome of liver..four small possibilites in lungs and one retroperotenial node in abdomen.......doc wants to put me on lonsurf and i have wanted these darn things out from the beginning but none would refer me to a surgeon so i called a place in newport and have an appt there soon...If impactzone will respond about stanford i would appreciate it...as he went about how i wanted from the beginning.....
Hello dancer2,
While originally from warm and sunny southern California, I now live in a snowy and very frozen Minnesota for the past 25 years and do not have the resources to make second opinion resectioning recommendations. I am sorry to hear that you have suffered a relapse with new spots identified. Hopefully someone reading these discussion threads can offer a recommendation. To reach a broader audience, I recommend starting a new stand alone discussion post that may deliver option responses.
Wish I could help further. Good luck, and please keep everyone updated.
Take care,
Scott
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Stage 4 Colon Cancer
Hello Scott,
I had a liver resection in October and started chemo again on December 19th. Before surgery i was on Avastin, Irinotecan and have been put back on that. i lost my hair after the first treatment. What gets me more is the fatigue but I've still been able to work through it, I'm an assistant manager at a bank. The gastrointestinal issues are a bit tough also. Wish you the best on your new treatment.
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Update
Update:
- December’s liver resection healed fine.
- Completed first round of port infused Avastin and Irinotecan on Jan 27th . Round two tomorrow.
- Completed round one of Xeloda pills on Jan 10th . Two weeks on / One week off. Round two starts tomorrow.
- Side Effects:
- Hair progressively falling out at a high rate. I have been trying to retain it by not touching it and other means. Stepped outside yesterday in 40 mph winds. Lost a week of retention. Now I wear a hat. Most likely going to have to shave it this weekend. Very depressing….
- Work and social life now revolves around close proximity to a bathroom. Bad cramps / ongoing diarrhea. Lessons learned: Don’t eat large meals especially bean laden Mexican food.
- Ongoing nausea being managed through diet and meds.
- Path forward: Another PET Scan in early April which will be the deciding factor as to lung surgery, more chemo, no chemo….
Throughout my life, I have always been in good health until cancer. I rarely took any medications and was adverse to them. Now I take a collective 20 – 25 prescribed pills a day of various types (chemo, side effect prevention, side effect management, neuropathy, etc. etc.) .
As with all of us, I can’t wait until it’s all over and celebrate being NED.
Scott
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Here with you
This is my second time with Chemo. My first time with Mets (lung and adrenaline gland) though. I am on FOLFIRI. TOmorrow will be treatment #16 for me (every other week). I am not taking the Xeloda pill though. For the last 3 treatments I have been on maintenance chemo (FOLFIRI without the IRI). I have lost a lot of my hair. Nothing like being a single female with thinning hair. (grumble grumble) but I have resorted to wearing hat and like to try to limit how much it shows. I like FOLFIR better than FOLFOX though, the oxali just messed so badly with me. Anti-heartburn meds really helped with my stomach stuff. I am on Pepcid and Priolsec together. It helps so much. I can eat whatever I want. However I will admit the gas is horrendous. If I could do something about that and the hair I would be somewhat happier.
Keep fighting the fight! Keep going out and having fun, even if you have to plan closely. Just keep having good times. And remember, those around you understand!!
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welcome
just wanted to add my Welcome to you Scott. You are heavily involved in treatment now and it is tough . There is no getting around that but it can be done as evidenced by we Stage IV survivors who just keep keeping on. My mets from colon went to the liver and I had resection and chemo. The liver mets came back a second time and I had another resection this time with oxaliplatin and zeloda. Thought I was doing well after five years NED but last year I was diagnosed with breast cancer.....dang.
The zeloda bothered my digestive system.....I had actual stomach pain not just nausea but I cannot help with much else because the oxy is very different. You should know I am from Canada from the seond snowiest city in the country so I feel your winter pain my friend. I can barely see out my front window for snow. I think in some ways that chemo is harder to do in the long cold dark winter so you will be feeling better in a few weeks Scott.
Oh and Scott chemo made me lactose intolerant. I just assumed the constant diarrhea was a result of chemo. Took me years to figure that milk and ice cream and some cheeses just were not being digested......when I cut these out I felt much better.
All the very very best......maggie
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Folfiri - 10th treatment
Hi Scott - just wanted to update you, as I will be having 11th folfiri treatment this week. Had CT scan after 6th and report indicated still numerous lesions in liver, but "markedly reduced" (only good news I had since last June). I have asked for a break soon, and sounds like after a few more treatments will get a break - not sure how long). I have a small bowel stricture (area of scarring from radiation several yrs ago) that unfortunately causes partial blockages with very painful spasms and twice I have had "bad days" dealing with this. I would think the chemo also aggravates the intestines, so makes things worse for me. The other day had chills, fever of 101F, partial blockage pains for many hours, and bone spinal/sternum pain probably from WBC shots (was my 5th day of shot - usually pain gets progressively worse by day 5). In bed all day - worse day overall. I was told this was quite dangerous and I should have gone to ER if my temp was above 100.4F. Took 8 tylenol throughout day and by next day, temp back to normal and feeling not great, but 100% better than previous day. Just a heads-up that this seemed to come out of nowhere- started a week after chemo treatment, so not sure what started it. Will talk to my Onco next visit. My side effects right now Scott (10th folfiri) are nausea, not great appetite - food tastes off, heartburn (take daily med), sore mouth a lot (very diligent about baking soda brushing), some teeth bleeding, nose bleeds, hair loss (yuck- I look like an old, old lady without my wig or hat - very upsetting, just another thing to add to my feeling of well-being), out of breath more, constipation and diarrhea issues. It's weird because I can feel okay one day, and next days crappy or very tired. My situation may be more pronounced because I have that small bowel stricture or the added WBC shots for 5 days in between treatments - which also have side effects, mainly muscle aches and fairly bad spinal, sternum, bone pain controlled quite well with tylenol. Just wanted you to know how things were going after 10 treatments with Folfiri Scott. As I said, you hopefully won't have as many side effects, as I have this pre-existing intestinal issue, which my Onco says causes more issues. Usually feel pretty good 3-4 days before treatment. Having every 12 days, after 5Fu bottle off, actually doesn't give much time to have too many good days - up and down, but I get out whenever I feel good. Wishing you well, and let us know how things are going. Bellen
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