capecitabine 6 months

Hello,  I was offered the same treatment today for recurrent rectal cancer.

Back in 2020 I had 3 months on capecitabine with no side effects. I was meant to have 6 months but it was stopped because of covid. 

I am definitely going to take it again, I know 5% is disappointing but but anything to prevent it coming back again.

I would lovecto hear from anyone that has taken it for 6 months though to hear what month 4 to six is like. Am I likely to loose my hair? 

Best of luck to everyone that is on treatment

hello

i was told today that you dont lose hair on this drug,it may thin a little they said.

why would they stop it cos of covid, its a drug you take at home isnt it ?.

i was told today that if i started it i would have to complete the 6 month course as it wouldnt work if any less.

as youve been offered it again does that mean they felt it was a drug that worked for you.

i dont understand with many other drugs for chemo out there that only one is suitable for my case.

i didnt get any confidence out of my oncologist, in fact he asked if we wouldnt mind talking with his trainee member of staff while he went to lunch, why give us a appointment of which we were well on time for if your lunch takes priority.

i asked him questions and he simply said i dont know or i dont have that info to hand, we were taken back by his blarzay behaviour.

in fact he rushed us out the office into the hallway to finish our conversation with a nurse whilst he called in his next patient, its making me cross thinking about it.

id go as far to say he was rude and his staff around him were on edge all the time and literaly jumped when he said this high, appalling really.

and this is the man thats meant to cure me of cancer, not so sure about that.

anyways im pleased to hear you say no side effects, none at all ?, ive to take 4 tablets in morning and four tablets at night, i dont know if that means a stronger dosage and therefore i might have side effects.

they said sore mouth, mouth ulcers, peeling hands and feet, exhaustion, bit of sickeness and runny bum was to be expected.

whilst i like this forum i cant help think that the people with the answers we are hoping for arnt on this forum anymore.

hoping that everyone who has to fight this disease has someone holding their hand.

Hi,

I was told that most Chemo treatments have very low percentage rates (following a left Hemicolectomy back in 2019.) & that I didn't need any treatment at that time - for 'mop up.' In fact, I was warned of all the dire consequences, by my Oncologist.

However, a year later, a follow up CT scan showed two small Lung nodules, as Mets, from the Bowel Cancer. I was then offered Capox to reduce them - prior to Lung Ablation. I refused the Oxyplatin infusion, & opted instead for 6 mths cycles of Capecitabine Tabs - which I took for 5 mths...with no side effects, until the 5th month, when I was taken off them.

But - they worked in shrinking the tumours, & I was able to have a Lung Ablation procedure that year.

Since then, all my six monthly follow up scans have so far been clear.

Best wishes

Marianne

hi

do you think the noduals on your lungs were there because you didnt have a mop up at the time ?

youve just reminded me of another part of todays consultation, my surgeon said he was concerned about the genetic make up of my cancer and a nodual they could see on my left lung, so we have worried about it for the last 3 weeks where today the onc jst said i dont know why you were told about the nodual, im not bothered by it at all, brushed it off as no big deal.

ive a ct scan on 1st of december and i hope it hasnt changed but if it has changed im going to be very unhappy with someone.

seems very odd a surgeon is concerned but the onc isnt, i thought this was all discussed at a mdt meeting so everyone had a say for the best treatment plan, confused.

i wish everyone a happy outcome.

In my experience, certainly no loss of hair. The initial dosage is based on your weight & height, which can be altered, depending on any side effects you may experience. I had no nausea, sore mouth or ulcers. In fact, it had no impact on my life initially. However, the drug is cumulative. Because of my positive well being, my Oncologist upped my dosage in the fourth month, & in the 5th month, I developed Palmar Plantar - which is the peeling of the skin in hands & feet, difficulty in clenching the hands. I constantly moisturised - however, my Oncologist stopped the Tabs. at that point, & this condition immediately went.

Marianne

Yes, my biopsies following surgery was for EMVI, so, in retrospect, I should have insisted on adjuvant chemo. then, but I took the advice of the Oncologist, & was pleased not to undergo any follow up treatment.

My lung nodules were discovered on a CT scan initially, then I had to have a PET scan, which showed that they were cancerous. However, a lot of people have lung nodules, that are not necessarily cancerous, which may be your case.

Marianne

hello.

thats interesting about height and weight.

im 6.2 and 19 stone, i wonder what strength that relates too.

when you say clenching of hands was it difficult to use your fingers etc for say holding a cup or cutlery for example.

if the rates are so low for treatment perhaps we are not as far ahead in tackling this disease as i first thought.

maybe thats why so many say that its back again a yr or so later on, im begining to think how foolish ive been to think i would be cured of this disease.

some one said to me recently " you dont get rid of cancer, you learn to live with cancer", i found that a odd thing to say at the time but i think im begining to understand now.

wishing hope to all.

I'm small 5' 5" & I had lost weight when I was diagnosed, so was only 7 stone. I started on 1500 mg a day, which was upped to 1700mg.

No, I could hold things okay, but my hands were very stiff for a while, but really, it was a minor side effect. I had no other problems with this chemo. I ate normally, & continued to enjoy my wine.

Are you pre surgery? or will this be mop up following it?

Yes, I think that person is right. My feeling is that you are only clear of cancer following each scan - that's why every following scan you have is such a worrying time. In the meantime, you eventually forget about it all, & just carry on with your life.

Marianne.

Hi Christine!

My husband Jay has been on combined Chemo of Oxaliplatin and Capecitabine. They took him off it on cycle 4 because he was having really bad side effects. He started off low dose for the first two cycles then because he was tolerating it well apart from the neuropathy, they upped it in cycle 3. He went through that no bother but as I said mid-way through 4, he began to get ill. He was Capecitabine last year along with radiotherapy to reduce his tumour in prep for surgery in January this year which went well and apparently, they got it all but 6 months later it was back. Jay wasn't offered any post chemo treatment after his operation, and I asked this at his follow up appointment only for the oncologist to say no we don't do that unless it's necessary and because seemingly everything was clear they weren't even going to do anything as a precaution and for that I am quite bitter because I feel if they did this back then we may not be where we are now. I know what you mean about the oncologists I'm beginning to think that ours is like that too. They tend to play with people's lives! At Jay's last oncology appointment, they did a CT scan prior to that and it has shown he has had a spread to his pelvis and now because of this we think he may have to have a nephrosotmy done or a stent inserted. This is a procedure that means they need to insert a thin tube into your kidneys to open them up and help them to drain properly as they think because C is in the pelvis it could affect the kidneys and if they don't drain properly, they can shut down. So this will be why they don't want to put him back on chemo again too. they sent him away with water tablets as he was presenting with fluid retention as well, so he has been on them for a week. I honestly thought that this combined treatment would do something as apparently, he was on maximum dose of both and Oxipalatin and Capecitabine CAPOX XELOX- any OX you want to call it is supposed to be one of the `big boys of the chemo world. So don't know. In saying that it may work for other people not everyone is the same. Take Care. 

Vicky x

Christine I get what you are talking about!  When we went to see the oncologist after Jay was told his cancer had returned, he said to us `what did Ms*** say to you about your cancer returning`? Ms**** (don't want to give out names incase not allowed) was Jay's surgeon and when she had to call us back to give us this news it was back, she was very upset because he had been recovering so well from the operation and more or less getting his life back. The oncologist when we told him what was said, said `Yes there are a few wee cancer spots showing on the bowel lining` as if it was something and nothing. But at the time when he told us this, we found it really re-assuring that a couple of blasts of chemo would get rid of it after all he's the expert and you are going to listen to what they tell you. So here we are after the blasts of chemo he has a spread and looking to get a further procedure done. A stent they insert into your body but the nephostromy means you need to wear a bag outside the body on the end of a tube and he already has a stoma bag so don't think he's up for that but if it means a case of having to get it done, he said he'll go for it.

Vicky