Home Blog Resources Oral Chemotherapy: My Experience Taking the Chemo Pill Oral Chemotherapy: My Experience Taking the Chemo Pill January 12, 2020 • By Fight CRC Resources Share on Facebook Share on LinkedIn Share on Twitter Copy this URL Share via Email Back in the early 2000s, after 21 months of traditional chemotherapy, radiation, and surgeries, my body was struggling with blood counts, nutrition and overall existence. My oncologist and surgeon wanted me on chemo, but Irinotecan was doing me more harm than good. I had been on it for about 17 months after surgery and I was at the point I didn’t know if I could receive the treatment any longer. I felt I did not have a good quality of life because I was constantly sick, always in the clinic and having to take shots to boost my white blood cell counts. At this point, we decided to stop the chemo and see what we could do once my body recuperated. "There weren’t as many options back then compared to today. After a few months of being off chemotherapy, I was feeling healthier; however, I started fearing that cancer would take over and I would not make it. I knew my body needed the break and I would start back on some chemo soon, but the anxiety of not being on it when I needed it was weighing heavily on me." - Pam Seijo, Stage IV survivor In Search of New Treatment Options As I was waiting for my next appointment with my oncologist, I attended a conference in Washington, D.C. covering new treatment options. I met a cancer survivor/professor from Harvard University that talked to me about an oral chemotherapy drug, Xeloda. The thought of taking a chemo pill and his suggestion to take it on a long-term/low-dose regimen intrigued me. I was excited to discuss this with my oncologist. Early on, he and I had become a team. When chemo and radiation didn’t shrink my tumor and a surgeon told me that surgery wasn’t an option and to get my affairs in order, my oncologist comforted me by assuring me we’d find an answer and make it work. He found a new surgeon and together we made decisions about my care. When I talked to him about Xeloda, he and I both felt oral chemo was the answer for me. Taking Oral Chemo AKA the Chemo Pill Soon I began taking oral chemotherapy. This was a big change, and a little overwhelming. Chemo from home and not the clinic brought anxieties. What if I had a reaction? Who was I going to talk to about cancer and chemotherapy? What if it didn’t work? I didn’t have the chemo nurses to answer my questions. I didn’t have other patients to talk with. Most importantly at the time, I wondered if the chemo pill would work as effectively. In the beginning, I struggled with not having someone closely monitoring me when I took chemo, but I soon overcame the fear and liked the comfort of being at home. I could do things when I wanted to, and I didn’t have to visit the cancer center biweekly. Once the dosage was adjusted and side effects were few, I liked the idea of oral chemo. I missed the cancer center, but I enjoyed the freedom. I could travel when I wanted to and do activities as I was physically able. It allowed me to live my life to the fullest. Ten years later I’m still on oral chemo. At first, I continued taking it because of nodules in the lung. Now I’m on a long-term, low-dose regimen, which is considered a maintenance plan. I see my oncologist every three months for blood work and receive yearly scans and colonoscopy. My side effects are minimal (I do struggle with diarrhea, fatigue, and neuropathy on occasion), and I’ve not had any cancer growth. Over the years, my regimen has changed several times but I’ve found the chemo pill to be a good option for me as it’s kept my cancer at bay. This summer I will be a 15-year survivor. Is Oral Chemotherapy For You? Oral chemotherapy may be one treatment option for some patients, but not for all. It’s critical to discuss your treatment options with your medical team. It is also important to note that some health plans require patients to pay higher coinsurance or copays for oral chemotherapy compared to intravenous chemotherapy. Fight CRC has been working closely with the Coalition to Improve Access to Cancer Care (CIACC) to pass the Cancer Drug Parity Act, federal legislation to increase patient access to oral chemotherapy by ensuring it is covered in the same way as intravenous chemo. Click here to learn more about the legislation. For patients wondering about oral chemo, discuss this option with your oncologist, and watch Chemo in a Bottle, our webinar on oral chemotherapy presented by Dr. Anna Varghese, MD. Oral chemotherapy may be one treatment option for some patients, but not for all. It's critical to discuss your treatment options with your medical team. Disclosure: Fight Colorectal Cancer has received funding from companies in the form of unrestricted educational grants, including oral chemo manufacturers Genentech – the producer of Xeloda and Bayer HealthCare – the producer of Stivarga. We maintain ultimate authority over website content and the content written in this article. More Resources We know a colorectal cancer diagnosis is overwhelming. We’re here to walk you through it from the day of diagnosis through survivorship. Download your FREE digital copy of Your Guide in the Fight, a 3-part book designed to empower and point you toward trusted, credible resources. Download your guide in the fight Additional Resources: Everything You Need to Know About Oral Chemotherapy and CRC Chemo in a BottleColorectal Cancer Chemotherapy: Options, Side Effects, and More 17 thoughts on “Oral Chemotherapy: My Experience Taking the Chemo Pill” In May 2017 I was diagnosed with a 75mm Colorectal tumor,..I received Chemo in tablet form, (little or no side effects from tablets), and daily Radiotherapy, the Tumor only reduced in size minimumly, so had to undergo a Total Pelvic Exenteration, removing my Rectum, Anus, Bladder and Prostrate, it was a big day out,..I have two Stomas for number 1s & 2s, … after 3 years I’m managing well, glad to be here. I’ve searched the internet for so many months to find this type of story. Not only for the medical standpoint but also for the uplifting inspiring side that I’ve long to find and have to regain the strength as well as attitude to continue my battle with stage IV colon cancer that has spread to both lungs and my liver. As a 46 yr old single mother of 4 awesome kids (3 girls ages 21,19,12 & my son is 10) I’m no stranger to dealing with the spare of the moment ordeals. But receiving my diagnosis in early February of 2017 was a total heart stopping surprise. Especially since in October there was no evidence of tumors or cancer on the multiple scans and test. I had barely enough time to think before I was in a battle to save my life. I had to do chemotherapy first to get the cancer under control and stable so it wouldn’t spread anymore than it had and would in the recovery time after surgery to remove the 3 huge grapefruit sz tumors plaguing my sigmoid colon, left ovary and outside of my uterus. I done well with both chemo and surgery and returned to chemo 6 wks after surgery which truly took what dignity and self-esteem I had left. I’m currently doing Target therapy and was terrified after only doing 4 infusions my CEA count went from 24 to 89. My liver is also covered in fatty tissue which it wasn’t before the infusions. My oncologist never even mentioned any of this and put me back on the same regimen infusions. After I got all the results myself I immediately called and was told that it was normal and working. I’m truly scared to death but what else can I do bcuz not doing treatment will only give the cancer time to grow. Battling Cancer is so difficult in so many ways. And living in fear is one of the hardest parts of it. ~Tonia~ Hi my mother has stage 4 colon ca and was very inspired by Pam Seijo’s story. She would love to be in contact with her. Would it be possible to get her information? Hi I just had a lumpectomy also had chemo before surgery now oncologist wants to put me on a chemo pill for 6 months as a precaution has anyone else have this Hello, so good to hear your story! I was diagnosed with rectal cancer on May 26th. I am on xeloda 1500 mg in the morning and 1500 mg in the evening along with radiation. I do this Monday- Friday for 28 days. I have had 6 days so far, and I am feeling tired and my legs are very achy. Every day it seems to get a little worse but I just tell myself it will be over soon. My main concern is that I spend a lot of time feeling like I need to go to the bathroom only to get there and go very little and then back again within a few minutes. Also when I think I am done peeing, I am not, is this normal? I have an appointment with my oncologist Tuesday, but I wanted to hear from someone who has gone through this. I will have surgery in the fall and then 4-6 months of chemo through a port. Thank you all for being here for us! Sharon Glad to read your awesome results with Xeloda. I have been taking it the drug for 18 months now but I also get Avastin with it. Have you taken that medication? I have some recent concerns as my sodium number has dropped and my platelets are very low. I’ve done some reading and feel it could be the Avastin but my Dr doesn’t agree. He removed me from the Xeloda to check my sodium again. It came back a little higher but still considered low. I would like to just be on Xeloda. Thanks for your encouraging story. Wow….love your story! My mom had colon cancer in 2008 and they got it all out and tested 29 lymph nodes around the area and none had cancer so they did not have her do chemo or radiation. Last month they found a mass on her bladder and they went in and removed it but it was cancer. They believe her colon cancer has returned but are surprised since she has been in remission for so many years. They do not see cancer any where else. PET Scans show no cancer CT scans show no cancer however her CEA levels have been rising the past year. January it was 15 and now its at 42! They have decided because of her age (83) that she is not a candidate for surgery due to the fact she just spend 22 days in the hospital from a colonoscopy that went bad. So they want her to start 6 weeks of radiation and start Xeloda the same day and for 6 weeks also. Just wanted to ask what side effects you had and when did they start….like how many weeks into it. I’m hoping this works for her but I also want to be prepared to help her along the way. Thank you for all your information and help! I was diagnosed with stage IV rectal adenocarcinoma with metastatic to the lung. I have undergone a surgery just this past December with a leakage in my intestines from the stint that was put in he tumor back in October when I was diagnosed! I had complete blockage and that allowed me to go to the bathroom! Then when I got my ileostomy bag in December I have lost all of my dignity and hopes that I could live a normal life. I get a treatment of oxaliplatin and get sent home with xeloda. I have to take 3500 mg of xeloda every day. For two weeks on and one week off.. I was told by my oncologist to make all my arrangements and get things in order. I can’t seem to except that as I want to have the tumor removed and hopefully that will happen when the tumor shrinks more. My tumor in my lung has shrunk by a .2mm and the cancer is stable.. I am hopeful. We are currently on xeloda at a dose of 3500 mg a day. Also have stage IV rectal cancer which metastasis to the lungs and the doctor told us last month that we need to get all my things in order! I am also getting the infusion of oxaliplatin. That seriously makes me sick and sensitive to cold. I am scared that this cancer is going to take my life so I stay active and staying positive. I have not had surgery and I have an ileostomy bag due to a leakage in my intestines that was caused by a stint in the tumor! Please tell me what you think about my case! I am demanding surgery but they have not done it yet! I think they want to wait and see if the tumor shrinks in my rectum Pam, the moment I read your story i saw that my wife Glenda right now is on nearly the identical track that you were on prior to your surgery, but more importantly, your story filled us with hope! The surgery decision is a crossroads for us right now, and we are very interested in Xeloda so I’ll research that too. Glenda is Stage 4, with solid tumors in her lower abdominal area, and spots on liver and lungs. We think surgery and then some form of chemo, such as Xeloda, is the right approach. We’re also looking at a new immunology trial but as you know these are very early, usually Phase 1 or 2. I am desperate for advice on these items, can you suggest anyone that we can talk to you “live” so that we can get some help and advice? David, I glad this gave you hope! One of my favorite quotes is “Hope shines brightest in the darkest moments.” I came across this other blog on Fight CRC page that may help you answer the questions. It’s https://fightcolorectalcancer.org/get-resources/clinical-trials/. One thing I would tell you is work closely with your doctor. I was blessed that my oncologist and surgeon allowed me to be part of the team, from decisions to suggestions. If I can help you in anyway, please reach out to me. Hi there, I found this story interesting and inspiring, if that’s the right word, at the same time, although I have a question. What is a “low dose” of Xeloda? Currently, I am on a Xeloda “maintenance” regimen of 2×500 mg tablets, twice a day (1000mg twice a day) for seven days followed by seven days off, then repeat. I have been on this regimen since about March 2013. I started on the same dosing plan, i.e. 1000 mg, twice a day but for two week on and one week off. Unfortunately, the side effects (mostly hand and foot syndrome) became intolerable after a month or two. Consequently, my oncologist lowered the cycle time to one week on and on week off in March 2013. I have been on that cycle since then with an occasional longer break if the hand and foot becomes extremely bad. In addition, I receive 500mg of Avastin IV every two weeks. Obviously, I found your story interesting, although what you and your oncologist perceive as a low dose was left out. Clearly, I understand every patient and oncologist is/are different and no two treatment plans can nor should they be the same. However, I was just wondering what you consider to be a low dose. You see, my oncologist and I have discussed it and as long as we can manage the side effects and it keeps working neither of us sees any reason to discontinue my current maintenance regimen. The backstory is after my June 2012 diagnosis of Stage IV colon cancer with metastasis to two lymph nodes, I went on a standard FOLFOX w/Avastin regimen for six months. During that period, an iliac lymph node was determined to be malignant by PET scan, treated with SBRT and that lymph node was declared cancer free, if those are the right words, in Jan. 2013. In Jan. 2013, I was also declared to be “in remission” or to use a term I believe is more colloquial among cancer patients than in common usage among the medical community, NED. In the interest of full disclosure, I consistently have lymph nodes “light up” throughout my body on PET scans, but both my radiation and medical oncologists have determined this to be a result of the Systemic Lupus Erythematosus from which I also suffer. As I wrote earlier, just interested in knowing what you and your oncologist consider a “low dose” of Xeloda. Thanks, Rick Hey Rick, great question. I”ll pass this along to Pam directly & let her be in touch if she’d like to chat more! Hi Pam, I am also interested in the answer to the question Rick asked as to what is considered low dose for capecitabine? I am on the same dose as Rick, 1,000mg twice a day, 2 weeks on, 1 week off. I have a different cancer though, Stage IV breast cancer. I am inspired by your survival and long term use of capecitabine. It gives me hope, though I realise you are an “outlier” in research terms! I look forward to hearing from you, and all the best for your continued stability. Gaynor I have been on Xeloda for 17 months now and my cancer is not progressing at all. I have the same anxieties and fears that Pam had at the beginning of her treatment. I am overcoming those fears and am feeling good about my experience with Xeloda. I am hopeful with GOD’S good grace that I an also be a long term colon cancer survivor. Thank you Pam for your uplifting story of survival. It has given me more hope for my long term survival. Thanks for sharing your story Kathy! You are an inspiration. My husband gas been battling for a little over two years. He is now stage 4 with spots to lungs and liver. He has just started the daily regiment of xeloda everyday. I pray to the Almighty that he will respond and the cancer will be contained with no new growths. The thought of losing him and my two babies not having their dad makes me sick. I hope his response is as good as yours. If you don’t mind me asking where we’re you treated??? Comments are closed.
In May 2017 I was diagnosed with a 75mm Colorectal tumor,..I received Chemo in tablet form, (little or no side effects from tablets), and daily Radiotherapy, the Tumor only reduced in size minimumly, so had to undergo a Total Pelvic Exenteration, removing my Rectum, Anus, Bladder and Prostrate, it was a big day out,..I have two Stomas for number 1s & 2s, … after 3 years I’m managing well, glad to be here.
I’ve searched the internet for so many months to find this type of story. Not only for the medical standpoint but also for the uplifting inspiring side that I’ve long to find and have to regain the strength as well as attitude to continue my battle with stage IV colon cancer that has spread to both lungs and my liver. As a 46 yr old single mother of 4 awesome kids (3 girls ages 21,19,12 & my son is 10) I’m no stranger to dealing with the spare of the moment ordeals. But receiving my diagnosis in early February of 2017 was a total heart stopping surprise. Especially since in October there was no evidence of tumors or cancer on the multiple scans and test. I had barely enough time to think before I was in a battle to save my life. I had to do chemotherapy first to get the cancer under control and stable so it wouldn’t spread anymore than it had and would in the recovery time after surgery to remove the 3 huge grapefruit sz tumors plaguing my sigmoid colon, left ovary and outside of my uterus. I done well with both chemo and surgery and returned to chemo 6 wks after surgery which truly took what dignity and self-esteem I had left. I’m currently doing Target therapy and was terrified after only doing 4 infusions my CEA count went from 24 to 89. My liver is also covered in fatty tissue which it wasn’t before the infusions. My oncologist never even mentioned any of this and put me back on the same regimen infusions. After I got all the results myself I immediately called and was told that it was normal and working. I’m truly scared to death but what else can I do bcuz not doing treatment will only give the cancer time to grow. Battling Cancer is so difficult in so many ways. And living in fear is one of the hardest parts of it. ~Tonia~
Hi my mother has stage 4 colon ca and was very inspired by Pam Seijo’s story. She would love to be in contact with her. Would it be possible to get her information?
Hi I just had a lumpectomy also had chemo before surgery now oncologist wants to put me on a chemo pill for 6 months as a precaution has anyone else have this
Hello, so good to hear your story! I was diagnosed with rectal cancer on May 26th. I am on xeloda 1500 mg in the morning and 1500 mg in the evening along with radiation. I do this Monday- Friday for 28 days. I have had 6 days so far, and I am feeling tired and my legs are very achy. Every day it seems to get a little worse but I just tell myself it will be over soon. My main concern is that I spend a lot of time feeling like I need to go to the bathroom only to get there and go very little and then back again within a few minutes. Also when I think I am done peeing, I am not, is this normal? I have an appointment with my oncologist Tuesday, but I wanted to hear from someone who has gone through this. I will have surgery in the fall and then 4-6 months of chemo through a port. Thank you all for being here for us! Sharon
Glad to read your awesome results with Xeloda. I have been taking it the drug for 18 months now but I also get Avastin with it. Have you taken that medication? I have some recent concerns as my sodium number has dropped and my platelets are very low. I’ve done some reading and feel it could be the Avastin but my Dr doesn’t agree. He removed me from the Xeloda to check my sodium again. It came back a little higher but still considered low. I would like to just be on Xeloda. Thanks for your encouraging story.
Wow….love your story! My mom had colon cancer in 2008 and they got it all out and tested 29 lymph nodes around the area and none had cancer so they did not have her do chemo or radiation. Last month they found a mass on her bladder and they went in and removed it but it was cancer. They believe her colon cancer has returned but are surprised since she has been in remission for so many years. They do not see cancer any where else. PET Scans show no cancer CT scans show no cancer however her CEA levels have been rising the past year. January it was 15 and now its at 42! They have decided because of her age (83) that she is not a candidate for surgery due to the fact she just spend 22 days in the hospital from a colonoscopy that went bad. So they want her to start 6 weeks of radiation and start Xeloda the same day and for 6 weeks also. Just wanted to ask what side effects you had and when did they start….like how many weeks into it. I’m hoping this works for her but I also want to be prepared to help her along the way. Thank you for all your information and help!
I was diagnosed with stage IV rectal adenocarcinoma with metastatic to the lung. I have undergone a surgery just this past December with a leakage in my intestines from the stint that was put in he tumor back in October when I was diagnosed! I had complete blockage and that allowed me to go to the bathroom! Then when I got my ileostomy bag in December I have lost all of my dignity and hopes that I could live a normal life. I get a treatment of oxaliplatin and get sent home with xeloda. I have to take 3500 mg of xeloda every day. For two weeks on and one week off.. I was told by my oncologist to make all my arrangements and get things in order. I can’t seem to except that as I want to have the tumor removed and hopefully that will happen when the tumor shrinks more. My tumor in my lung has shrunk by a .2mm and the cancer is stable.. I am hopeful.
We are currently on xeloda at a dose of 3500 mg a day. Also have stage IV rectal cancer which metastasis to the lungs and the doctor told us last month that we need to get all my things in order! I am also getting the infusion of oxaliplatin. That seriously makes me sick and sensitive to cold. I am scared that this cancer is going to take my life so I stay active and staying positive. I have not had surgery and I have an ileostomy bag due to a leakage in my intestines that was caused by a stint in the tumor! Please tell me what you think about my case! I am demanding surgery but they have not done it yet! I think they want to wait and see if the tumor shrinks in my rectum
Pam, the moment I read your story i saw that my wife Glenda right now is on nearly the identical track that you were on prior to your surgery, but more importantly, your story filled us with hope! The surgery decision is a crossroads for us right now, and we are very interested in Xeloda so I’ll research that too. Glenda is Stage 4, with solid tumors in her lower abdominal area, and spots on liver and lungs. We think surgery and then some form of chemo, such as Xeloda, is the right approach. We’re also looking at a new immunology trial but as you know these are very early, usually Phase 1 or 2. I am desperate for advice on these items, can you suggest anyone that we can talk to you “live” so that we can get some help and advice?
David, I glad this gave you hope! One of my favorite quotes is “Hope shines brightest in the darkest moments.” I came across this other blog on Fight CRC page that may help you answer the questions. It’s https://fightcolorectalcancer.org/get-resources/clinical-trials/. One thing I would tell you is work closely with your doctor. I was blessed that my oncologist and surgeon allowed me to be part of the team, from decisions to suggestions. If I can help you in anyway, please reach out to me.
Hi there, I found this story interesting and inspiring, if that’s the right word, at the same time, although I have a question. What is a “low dose” of Xeloda? Currently, I am on a Xeloda “maintenance” regimen of 2×500 mg tablets, twice a day (1000mg twice a day) for seven days followed by seven days off, then repeat. I have been on this regimen since about March 2013. I started on the same dosing plan, i.e. 1000 mg, twice a day but for two week on and one week off. Unfortunately, the side effects (mostly hand and foot syndrome) became intolerable after a month or two. Consequently, my oncologist lowered the cycle time to one week on and on week off in March 2013. I have been on that cycle since then with an occasional longer break if the hand and foot becomes extremely bad. In addition, I receive 500mg of Avastin IV every two weeks. Obviously, I found your story interesting, although what you and your oncologist perceive as a low dose was left out. Clearly, I understand every patient and oncologist is/are different and no two treatment plans can nor should they be the same. However, I was just wondering what you consider to be a low dose. You see, my oncologist and I have discussed it and as long as we can manage the side effects and it keeps working neither of us sees any reason to discontinue my current maintenance regimen. The backstory is after my June 2012 diagnosis of Stage IV colon cancer with metastasis to two lymph nodes, I went on a standard FOLFOX w/Avastin regimen for six months. During that period, an iliac lymph node was determined to be malignant by PET scan, treated with SBRT and that lymph node was declared cancer free, if those are the right words, in Jan. 2013. In Jan. 2013, I was also declared to be “in remission” or to use a term I believe is more colloquial among cancer patients than in common usage among the medical community, NED. In the interest of full disclosure, I consistently have lymph nodes “light up” throughout my body on PET scans, but both my radiation and medical oncologists have determined this to be a result of the Systemic Lupus Erythematosus from which I also suffer. As I wrote earlier, just interested in knowing what you and your oncologist consider a “low dose” of Xeloda. Thanks, Rick
Hey Rick, great question. I”ll pass this along to Pam directly & let her be in touch if she’d like to chat more!
Hi Pam, I am also interested in the answer to the question Rick asked as to what is considered low dose for capecitabine? I am on the same dose as Rick, 1,000mg twice a day, 2 weeks on, 1 week off. I have a different cancer though, Stage IV breast cancer. I am inspired by your survival and long term use of capecitabine. It gives me hope, though I realise you are an “outlier” in research terms! I look forward to hearing from you, and all the best for your continued stability. Gaynor
I have been on Xeloda for 17 months now and my cancer is not progressing at all. I have the same anxieties and fears that Pam had at the beginning of her treatment. I am overcoming those fears and am feeling good about my experience with Xeloda. I am hopeful with GOD’S good grace that I an also be a long term colon cancer survivor. Thank you Pam for your uplifting story of survival. It has given me more hope for my long term survival.
You are an inspiration. My husband gas been battling for a little over two years. He is now stage 4 with spots to lungs and liver. He has just started the daily regiment of xeloda everyday. I pray to the Almighty that he will respond and the cancer will be contained with no new growths. The thought of losing him and my two babies not having their dad makes me sick. I hope his response is as good as yours. If you don’t mind me asking where we’re you treated???