My mum has been diagnosed with stage 4 colorectal cancer. Initial diagnosis was stage 3 and early detection curable with radiation / chemo followed by operation. But further test (PET) revealed metastasis with lungs and lymph nodes impact.  Chemo started last week with initial infusion (oxaliplatin) followed by capecitabine tablets 3x500mg twice a day but 4 days of tablets caused extreme fatigue that she had to stay overnight in hospital for dehydration. Now mum has been asked to stop on capecitabine tablets for few days and recheck with the oncologist for further advice. By stoping the tablets mum is feeling much better but last night she had extreme pain in the right leg that she was unable to walk. Not sure if this relates to capecitabine or not? Also stopping chemo tablets (capecitabine) for few days causes any issues especially when it is prescribed to start treatment immediately due to metastasis nature of this cancer?? Medical oncologist at the hospital advised to get the port planted as it helps with minimal side affects. Appreciate any comments and experience that can help us manage mums side affects. 

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Super Contributor

Hi Malikshaz,

I'm sorry to hear about your Mum.

I wouldn't think that stopping the capecitabine tablets would extreme pain in her leg, but I'm no doctor. I think that it would be a good idea for your Mum or yourself to talk to her Oncologist about her leg, if you haven't already.

@PhilPepper might be able to say if anything helped him?

 

I had a port installed (my chemo treatment was FOLFOX - a bit different) and there was no issues there. I would have another installed if I need to.

 

 

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Regular Visitor

Thank you for your reply. The leg pain was more to do with cramps and muscle tightening due to sitting down and awkwardly walking. She is seeing oncologist today to see what alternative chemo she can have as she had two days gap since her hospital visit where they told her to stop Capecitabine medicine. Not sure what alternative there is but I’m hoping that something better will suit her as the Capecitabine really changed her completely in 4 days she was on these Chemo tablets. 

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Regular Contributor

Hi Malikshaz

 

Sch knows me too well. I was on Oxaliplatin and Capecitabine for 3 months. I was stage 2, but after surgery they bumped me up to stage 3. For me, chemo was an insurance policy, treating something that may or may not have been there. A slightly different path to your mum.

 

A port for Oxaliplatin is recommended. I didn't have it. I know the excruciating pain from having it into a cannula in my left arm. Strangely enough, it didn't bother my right arm. I only had 4 infusion so I didn't bother with a port. I had the most trouble on the 3rd infusion so by that time, a port was not going to be worthwhile. If she does go with a cannula again, I highly, highly, highly recommend shaving the hair off the forearms and wrists.

 

Each infusion increased the impact of side effects. By the third infusion , I was getting cramping in my legs which made it difficult to walk. Worst case was my last cycle.  My fingers and hands also cramped a lot especially when cold. Trying to push past the pins and needles leads to pain, then cramping. Now 2 months after chemo, my fingers are still twitchy and go numb. Not all the time, but I'm not sure what triggers it.

 

Capecitabine is nasty. I found out at the end of treatment, about 1 in 20 people lack an enzyme to deal with it. They can test you for it, but it is apparently a lot of effort and they rarely find the odd one out. So the process is... suck it and see. I was the 1 in 20. Made it through my first full cycle. In hind sight I should have reported I wasn't coping so well. During the 2nd cycle, I went downhill on the 5 day. Pushed through until day 8. Went to the hospital and fortunately got there before my kidneys started shutting down. I got roused on for not coming in earlier.

 

They ended cycle 2 early. Cycle 3 and 4 reduced my dosage to 75% and then 50%. But I still could get through the cycles with out being admitted to hospital and rehydrated. Cycle 3 was aborted on day 5. Cycle 4 was aborted on day 10.

 

I was warned about how dangerous Capecitabine was at the start during my chemo education. She was quite blunt in telling me it could kill me. She was right, it nearly did. The fault being my own, thinking I had to be tough and fight it and just push through. That is the wrong attitude for Capcitabine. The correct message is write everything in your diary and ask the Oncology nurses for advice if you are worried about anything.

 

Capecitabine stopped me from absorbing liquid, no matter what I did. It also took away my appetite for drinking and made water taste off. I could eat okay and tried eating jellies and cerial with milk to help get fluids in easier. It didn't help that the Oxaliplatin stopped me drinking cold liquid, so water had to be warm to swallow it. It was a real challenge to keep the fluids going in, but when the body stop absorbing it, rehydration in hospital is the only option.

 

I'm still recovering from my final treatment, having an ileostomy reversal earlier this month. Things are not improving as quick as I'd expected and I've been mostly house bound since returning home from hospital. 

 

Anyhooo... I hope your mum is feeling a little better now. It sounds like the Capcitabine is going to be a tough treatment for her. It is difficult to face, because no matter how badly it hurts you, you know it is necessary to go through it. I was always anxious prior to starting a new cycle and could not put myself on a positive frame of mind. I can't offer any good advice here. I really sucked at it.

 

I hope this information helps. It's quite scary. I think it's better to have information though, instead of not knowing. However, the unfortunate part about this... not everyone experiences the same side effects or level of impact. There will always be a little unknown. 

 

All the best. Reach out to me if you need to.

 

Cheers

 

Phil

Regular Visitor

Hi Phil,

 

I hope with this message you are well and recovering from the treatment. Apology for the delay response. It has been concerning past 11 days and yet we are still unsure about how the doctors progressing with my mum’s  treatment. As I mentioned previously since stopping Capecitabine on 24th Dec mum haven’t received any treatment and the oncologist advised now is that they will do the radiation therapy to shrink the tumour. This is strange because previously they decided that they won’t be doing this and went ahead with Capecitabine orally after first infusion. My mum seems to be ok but do get pains in her leg and feels nauseous tired even though there has been no treatment for 11 days. I am getting quite worried now because oncologist  said after the diagnosis that the treatment needs to start straight away to control the spread of metastasis. Tomorrow there is a planned radiation treatment so we are pretty much at the hands of the expert at the moment even though there has been such a big gap without any treatment since 24th Dec. There is no talk of surgery at all at this stage even through after the colonoscopy, surgeon wanted to operate once the course of radiation is completed, but oncologist said the surgery won’t happen. We are so blind sided at the moment that knowing the unknown scaring us at the moment. Thanks for your advice and sharing your experience so we can manage our mum’s health better with having knowledge and advice you provided.

 

regards,

Malikshaz

Regular Contributor

Hi Malikshaz

 

It sounds like you've been abandoned while medical staff were more focussed on the holiday period.

 

I think you need to force the surgeon and oncologist to talk and form a plan. Tell the oncologist you have concerns and ask him to go over the plan. I think the most important thing is to ensure it is all under good control. The alternative is to switch to another oncologist who you have more confidence with. Just remember you are not just on a ride. You (or your Mum, I guess) are in control of the treatment. Learn as much as you can. Ask lots of question. Don't just assume the medical staff have everything in hand. They share their attention over many people, but you and your Mum are dedicated to yourselves. Stay in control and keep the medical staff engaged.

 

If you or Mum feel that you don't want to be a bother and you are hesitant to get the help you feel you need, now is the time to get over it. Don't be afraid to need help, or get the help you need.

 

Take care. I hope you are safe from the smoke and fires. I'm in the ACT so we've been drowned in smoke lately. We'll probably all have lung cancer at the end of summer 😞

 

Cheers

 

Phil

Super Contributor

Hi Malikshaz,

 

I tend to agree with PhilPepper regarding the communication.

Did you end up meeting with the oncologist and getting some further advice?

How is the radiation going?

 

-sch

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Regular Visitor

Hi Guys, we did follow up with the oncologist and started on the radiation treatment so the tumour can be targeted and shrink. Radiation caused few issues itself in the first week then continued gradually increasing as the day went by. It was advised to insert a port a Cath week later which was done followed by chemo forfox 4 4 days later via tube that gets consumed over 48 hours but at home. Unfortunately, post chemo things got worse as she constantly suffered from    rectum pain and discomfort which increased to unbearable  that we rushed her to the hospital. After overnight stay they discharged her saying that rectum pain is due to being badly constipated. However, come Sun mum temperature shot up to 38.9 and we rushed back into emergency again. After thorough check up we were sent home Sunday night. But next day temp was exceeding again to 38.8 and we were back in the hospital again. She has been in excruciating pain since then and still in hospital. Dr did blood checks ups and put her on antibiotics but cause of temperature isn’t known yet. Dr are saying that she may have developed ulcer in the rectum which may be causing this agonising pain. Not sure what is happening and coming Monday she supposed to start 2nd round of FOXFOR 4. 

it has been traumatic time in the family and our inability to help her. 

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