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30 Posts
I haven't been here in a few months. A lot has happened. I was diagnosed September 2019 with stage 3, weak ER+ . I had 3 rounds of FEC which was slowly shrinking my tumor as well as the lymph nodes, however after my second of 3 docetaxel cycles my tumor grew a little . I had a mastectomy and 18 lymph nodes removed, my pathology showed my cancer was very aggressive and 15 of the 18 lymph nodes had cancer.  
I went for radiation simulation and it showed enlarged lymph nodes still in there up pretty high, my radiation oncologist sent me for PET because she was sure it had spread. Thankfully it came back clean aside from these nodes.  I went back into surgery, for 4 hours as the nodes were showing right in the area of main vessels from my heart as well as main nerve that goes to my arm. My surgeon said he went up as far as he could go and took out everything possible but could not feel anything. He told me that scans right after surgery sometimes show scar tissue, damage and fluid that may look like cancer.

I went for my second radiation simulation and the nodes are still there!!! my case had to go to the "round table" it was determined that they wouldn't attempt surgery again, my radiation oncologist (who is really negative) says it's because they are too far up to get. She also says she believes there is too much cancer for radiation to totally get.   I had 25 treatments as well as 8 radiation boosters and as soon as my skin healed, I started capecitabine. My medical oncologist says the radiologist says there are definitely characteristics that there is cancer in those nodes but it's hard to tell how much or be 100% that there is any. She is far more pleasant for sure. She has also changed my cancer to triple negative,  the ER+ is so weak and aggressive cancers such as mine are usually TN.

I just finished the second cycle, the first was nothing!! Barely had any side effects but this time my hands and feet are so sore and stomach cramps started during the second week and have continued into my week off.  I have 6 months of this.
I try not to google anything! Wondering if anyone else has had this chemo? Wondering if anyone has found themselves in the same boat as me??
19 Replies
2 Posts
I'm on capesidabine right now. I've just started my second cycle. By day 12 of taking the pills, I was really tired and in bed a lot. I threw up and had bad stomach cramps. My feet started to feel hot and swollen and my hands feel sensitive. I called my oncologist and they gave me some nausea meds which helped. Then on my week off, I slowly started to feel better. Feet and hands felt better. At my meeting with my oncologist they've decreased my meds slightly for this cycle, as I'm doing radiation at the same time and I think that was amplifying the side effects. Surprisingly before I started this second cycle, I started feeling much better! I didn't think I would because I was so low while taking the pills but I really bounced back.
It sounds like what you're going through are normal side effects of the pills. See if you can take some nausea meds to help you feel a bit better. I'm also putting lotion on my feet and hands in case they swell again so that they don't peel. Check with your oncologist to see if you can take some nausea meds.
I hope you feel better and this med kicks that cancer in the butt!
6 Posts
Capecitabine is supposed to have minimal side effects but I've had quite a few from a prickly rash due to sun exposure, (I have to cover up completely when I go outside) blisters on my feet, peeling feet, sore fingers, nausea and vomiting, cramps and the runs, and sores on the corners of my mouth and inner upper lip.  I'm about to start round 5 - in order to lessen the side effects, the oncologist has reduced the dosage twice and reduced the time, I'm down to 10 days on, 18 days off or recovery time for a 4 week cycle.  I find that during my recovery days, I continue to have nausea and even vomiting, and cramps, I have anti-nausea pills, which help.  I use Udderly smooth on my feet and hands twice daily; since my first dosage decrease and  less time on the pills, my blisters have gone, but I still have mouth sores and stomach issues, we'll see in rd 5 with an additional dosage reduction how the side effects are.  My oncologist believes the capecitabine is working, I have multiple mets in my bones but the last CT scan was inconclusive, however my blood work is better; only time will tell.  Stay strong and try anti-nausea drugs and apply the cream -  it should help.
30 Posts
Omg! Thanks for your reply.  I will definitely tell my oncologist about the side effects and ask about anti nausea meds.  It was just so different from the first cycle to the second, it was like from zero to ten as far as side effects go.

I'm packing the cream on my hands and feet several times a day, my feet feel a lot better, my hands are still sore but not half as sore as they were.  My oncologist was out of town so I get a few extra recovery days before I start a third cycle. If I was on my normal schedule I would have started today and I'm still having cramps and stomach pain.

Roxiroller‍ you are almost there!! Please let me know how you do!

CSarai‍ please keep in touch! I will let you know what my oncologist says next week and how my 3rd cycle goes

30 Posts
My dose was lowered.  This cycle is much better.  I have more energy and far less cramping and stomach pain.  My hands and feet have just started to turn red but not yet sore. I have 6 days left in this cycle. 
5 Posts
Hi to fellow capecitbine people
I have just finished cycle 4 of 8 planned cycles of cape. My oncologist prepped me for side effects by directing me to rinse my mouth with baking soda mouth rinses  a tsp per half cup warmed up  and skin cream with 20 % urea. I use Urisec twice aday on palms and soles of feet. It has really helped staving off S/E. I've  had a few episodes of diarrhea,  one severe cramps, and some short term cramps but tolerable. I avoid hands drying by using Dove liquid soap for hand washing , which we're all doing a lot these days. Hope these suggestions are helpful. Cheers to all.
3 Posts
I completed 55 Cycles of Capecitabine. I had dry hands and feet many times throughout the cycles and had a few breaks and a few dose changes. I would suggest keep putting moisturizer on your hands and feet every day and if they get to sore let your Dr know. The capecitabine stopped being effective for me so I have been taken off chemo and I am now on Letrozole an Kisqali hormone treatment. 
30 Posts
Nice to here from others on this type of chemo. I am just about to start my 4th cycle tomorrow morning. My 3rd cycle was far better then the 2nd with the lowered dose.  My hands and feet didn't get sore until almost the end of the cycle and they didn't peel.  I have cramps and diarrhea... usually just in the late morning or early afternoon but they continue into my recovery days.  Some days I have some nasty fatigue too. I get up and push through the day but I just want to go back to bed.  I just hope this is all working!
6 Posts
I was diagnosed with stage 111A colon cancer this past May. I had a successful bowel resection and pathology came back 2 micro lymph nodes out of 12 were positive for cancer cells.  Chemotherapy was recommended 4 cycles with one infusion of Oxaliplatin and 14 days of Capecitabine 4000mg per day. First 2 rounds were ok but final 2 I had lower abdominal cramps with diarrhea and very loose stool. Imodium helped there somewhat and I did have some difficulty voiding my bladder at times. Fatigue was my biggest issue and always tired , daily naps were a must. I finished treatment November 5th but still experiencing some minor side effects notable tingling at fingertips especially cold temperatures. 
30 Posts
NPS‍ I'm so glad you posted about the fatigue... I'm one week into my 4th cycle and I'm battling fatigue the past 2 days... I slept 10 hours last night and still struggled to get out of bed... I have been completely dragging my feet all day. 
Now I'm having trouble with lymphedema as well. I seen a physio therapist and got fitted with a compression sleeve and glove but it doesn't seem to be working.  
I'm starting to feel depressed with everything... I'm so sick of being sick...
1536 Posts
Piperb76‍ I’m sorry you are struggling with fatigue. It was a big problem for me during chemo too. I would sleep between 10-12 hours at night no have a 2 hour nap during the day and still struggle for energy to dress some days. I got through it by being kind to myself and letting myself rest when I needed that but I also set myself some goals. One goal every day was to get outside because I knew it was good for my mental health. This was tough in Manitoba winter some times and the effort to get dressed up was exhausting, but I always felt better for my walk outside. The other goal was to get one thing done in the day. That might be laundry, or cleaning up the kitchen, or it might be some baking. Something that had me puttering around the house and contributing to home life in some way. It gave me a sense of achievement too, small as it was. If I was having a good day I would do some gentle yoga or even lift some weights but I did find those days became fewer as the cycles went on.

After I finished chemo I had radiation and I chose this time to try and return to work, just a few mornings a week. As I was going for radiation daily, which was two doors down the street from my workplace, this made sense. I also started back to the gym, gently and this was where I made a discovery....

I found exercise to be like a savings account. I put energy into exercise and I gained energy back for daily life. So I used exercise like medication, and I credit it with getting me back to work fulltime within three months. It did take me 9 months to feel back to more like normal, but the improvements seemed to come quickly.

wishing you well for your remaining cycles - you are nearly there. Essjay xx
4 Posts

I also have TN Breast cancer! My tumour was 2.2 cms and 2 positive nodes! I had chemo for 5 months which did not work on the tumour!
The tumour was removed with clean margins and my nodes were encapsulated! I than did 25 rounds of radiation! I am now on capecitibine just finished my first cycle so far not to many side effects but I did have chest pain a couple of time which is normal on those pills apparently!
After I finish Capecitibine I am going to be doing immunotherapy! I wish you well and I will be praying for you!
30 Posts
Moon‍ my tumor was shrinking during FEC but grew a bit during the Docetaxel.  I'm really hoping the radiation and the capcitabine finishes off these nodes! Good luck with your cycles, let me know how you do. I did well during the first cycle but it was really bad during the second!! 
2 Posts
My partner was diagnosed with Stage 3 locally advanced rectal cancer on September 21. She is in her first cycle (of six) of capecitabine and oxaliplatin (IV every three weeks). She was on a lower dose of capecitabine during five weeks of radiation. Over the last four days, she has been experiencing debilitating cramps and a very tender belly, which we figure is inflammation. The cramps come in waves, every five minutes or so and are so intense that she is doubled over in pain. On a better day, she gets them every 30 minutes. She feels them in her back as well at times. It doesn’t seem to be linked to diarrhea or constipation. She’s on a low residue diet, which we read could be helpful for chemo related cramps. We called the patient hotline and spoke to a nurse who was not helpful at all. We don’t have an appointment with an oncologist until Jan 6th. I’ve been reading on this forum that some of you have had your dose lowered as a result of difficult side effects. I’m also curious if there is perhaps something that can be prescribed for this. We’ve been prescribed so many other things for nausea/vomiting, diarrhea and mouth sores but, to date, she has not had any of these side effects. 
7042 Posts
Bunnydunc‍  I'm so sorry for what  your partner  is experiencing.     It's so hard to see a loved one in pain.    Your appointment  is not until January 6th but can you give a call to the health  care team  and let them know what is happening?     Thry may be able to advise  you over the phone or prescribe  something.    You don't know exactly  what it is causing  the pain so best to let tbe health  care team know what is going on.    Maybe they can even squeeze you in for a cancellation.     Or if this continues and it's too unbearable. .taker her to emerge.    They will be able to do different  tests to find the cause  of all this pain..     how have you been coping?   This must be hard for you too.   Let us know when you get more information.     
1201 Posts
Bunnydunc‍ Hello....I am sorry to hear your partner is in such pain (it is painful for you too, to see this)
As stated earlier, please try to reach someone on her medical team...Dr. GP, Oncologist, Nurse, Patient Navigator, someone who can help and truly listen. There must be something to alleviate her pain....Holidays are just about done......but if need be.....yup; the E.R.
She will be seen and heard.  I too have read on posts, that the dosage can be changed, if side effects (or pain) is intense.
Let us know, how she is doing and if you have reached someone to assist.
85 Posts
Hi Bunnydunc‍ , 
Which province are you in ? I am in BC and I have found the below information from the BC cancer agency website.

*****    Extracted from pg 7/7  *****
• Painful hand-foot skin reaction such as painful redness, peeling, tingling, numbness, swelling or blistering of the palms of your hands and/or bottoms of your feet.
• Diarrhea with four stools a day more than usual, or diarrhea during the night.
• Nausea that causes you to eat a lot less than usual or vomiting more than 2 times in 24 hours.
• Painful redness, swelling or sores on your lips, tongue, mouth or throat.
• Signs of liver problems such as yellow eyes or skin, white or clay-coloured stools.
• Signs of anemia such as unusual tiredness or weakness.
• Severe abdominal or stomach cramping or pain.
*************    End extraction    *******************

I am obviously not any medical guy. I have no idea "a doctor" in the patient handout means our family doctor, GP or oncologist. If for me, I would call my oncologist. I believe only they can prescribe the pain killers AS WELL AS to advise whether to stop taking capecitabine immediately.

ps. In April this year, I got shingles (a side effect from  my chemo drug) and in result a very bad pain. I called my oncologist and she immediately sent the prescriptions (an antibiotics for shingles + Tylenol #3)  to my usual pharmacy Walmart.  I simply sent someone to pick it up.

After that, I believe your oncologist will further discuss with you for any potential dosage reduction on Jan 06.
2 Posts
Thanks very much for the information. I have found many useful resources on the BC cancer site. Thankfully, there has been no abdominal cramping five days into Cycle 2. The oncologist wasn't convinced it was related to the chemo. He thought maybe it was a leftover from the radiation treatments. He was very reluctant to lower her dose and said that this is mainly done for side effects that can cause long term/permanent damage. He's given her a prescription for steroids in the hopes that this could help alleviate the cramps. She has been on a low fibre diet for the last three weeks and maybe this is actually helping. 
I was on capacitibine for 11 months. Recently taken off of it in October 2020. 
im Stage 4 metastatic Breast cancer with ER & PR + and HER2-.
I have been battling for 4 years now. When I was on capacitibine, I had bad side effects of neuropathy on my feet and hands. They had to reduce it A couple of times, because I couldn’t walk on my feet. Every step was like walking on a bed of nails. When I went to see the doctor at the chemo unit in Bonnieville, she had recommended gabapentin. That is the medication and pill format that stops the nerve endings from your feet hurting so much. I am on a dosage of 300ml (that I usually take as a needed basis only) it you will usually kick it within half an hour and takes away the pain from your feet. I was moisturizing my hands and feet 7 to 10 times a day and it still didn’t help my neuropathy. My hands and feet would peel like crazy , then it would start over again.  I couldn’t start my next Capecitabine until my hands and feet were healed up. As I stated before, they had to reduce it twice in order for me to have quality of life. I did find out from the doctor and the chemo unit that if they continue to give you the full dosage, it can literally damage your organs for the remainder of your life. So please do speak up to your oncologist or medical team. Gabapentin DOES really help. I’m on FEC now for up to 1 year. They had to reduce the dosage because of my feet and hands turning red, sore and hot once again. I’m continuing on with my gabapentin still, on a needed basis.
I hope this helps As everyone has a unique type of cancer. If we all had the same type of cancer, they would have a cure for everyone.
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