For people having an ileostomy or colostomy or living with a stoma. Support each...
A support group for patients with Lynch syndrome (also known as Hereditary Non-polyposis...
Short term lurker, first time poster sharing our experiences...
Well just over a month ago I attended my companies charity golf day (we support Macmillan) and having a great time in the process raising a shed load of money.
A week later my wife started complaining of not being able to pass any solids....days and a trip to the doctors later passed with no change but her health certainly deteriorating. By day 7 and a return to the doctors she was referred to hospital and within 12 hours of tests they discovered a obstruction in her large bowel which was backing things up to her small bowel which had swollen rapidly in size.
An emergency operation was called and the offending lump removed and a stoma fitted. 8 more recovery days in hospital followed and she was released 2 weeks ago along with the pain of dealing with the stoma (its not in a great place)
Yesterday we went back to see the surgeon to be given the news we were expecting. The tumour removed was moderately differentiated adenocarcinoma Bowel Cancer (Stage 3 Dukes C). She's been told that she'll need Chemo for 6 months and that will start once they are happy she has recovered fully from the op. The surgeon is happy everything was removed in the op but with 3 Lymph nodes showing signs they want the chemo to close it off once and for all.
Everything has happened so fast its been a whirlwind of emotions especially for her given she's relatively young (just past 40) and her concerns on how our daughter (under 10) will deal with it all.
In reality what is the Chemo like ? I appreciate that people respond to it differently but would be interested to understand how people get on with it.
Sorry to hear about your wife. I have the exact same diagnosis but a slightly different treatment path. I initially went through 5 weeks of combined chemo and radiation, then surgery, and now I am on three months of chemo. I had only one lymph node showing signs so that may be why I'm on three months of chemo instead of six. I'm glad I was offered chemo again. It gives me a little more reassurance.
I am on the CAPOX regimen (oral capecitabine and an oxaliplatin transfusion every 3 weeks). For me, the oxaliplatin is by far the worse. I get "first bite syndrome" from it, where the first bite or sip of anything causes a lot of pain. It quickly dies down though, and isn't so bad with warm or hot foods, so I heat everything, including my drinking water!
My hands and feet also tingle.For a few days after the transfusion it hurts to touch anything cold. I have to wear gloves to handle anything from the freezer. The fatigue is bad. Luckily I haven't had much problem with nausea and I've never gotten sick in all the weeks I've been on capecitabine. They give me anti-sickness tabs to take home just in case. I do get indigestion and peppermint tea really helps. I also haven't had a problem with diarrhea, which I understand is a common side effect but I've been lucky.
Overall the chemo hasn't been as bad as I feared. With me, the side effects are usually worse the first week of the cycle and get better the second week. One thing to bear in mind is that you can't predict how you're going to feel from cycle to cycle. They say the side effects usually worsen as the treatment goes on but for me, the first cycle was the worst. They reduced my dosage and the second cycle was a piece of cake. The third cycle was bad again but this fourth cycle that I'm on now is a little better. As you say, everyone responds differently though. I hope this is helpful!
Although you don't want to hear it but welcome to the group and I am sorry that you had to join us but as you've found us we will do all we can to help you and answer any questions you will have and I'm sure there will be many.
In the meantime you might like to pop into our Chemotherapy Group or the Chemotherapy - Discussion Forum Forum and introduce yourself to the members over there who all have a lot of knowledge and will answer questions based on their experiences.
Children are very savvy these days and providing you tell her as soon as possible you might be surprised how well she absorbs the news.
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HI cottontop again
You might want to have a look at the above.
I was also at the same stage as your wife with 3 lymph nodes affected and I had the 3 month standard chemo of oxaliplatin infusion and capecitabine tablets. There was a study that found little difference in outcome between the 3 month and 6 month regime and so my oncologist went with the lesser one.
As previously mentioned I found that there were unpleasant side effects. Some people on here have worked while taking the treatment but I couldn't have. It does seem to vary hugely. The worst effects were in the 3 days after the infusion when I got spasms all over. After that it was soreness of hands and feet, as mentioned reactions to touching anything cold but generally it was the exhaustion that made me not want to do anything. The antisickness medications worked well, I occasionally felt a bit sick but i wasn't sick at all. You might also have to limit children coming over to visit if they have bugs as your immune system takes a hit. I had an ileostomy and the output increased as the treatment went on despite the immodium which had to be increased. I had to up my regime to include codeine and a very binding diet. Despite all of the above the treatment is very doable. They will reduce the dosage if the symptoms are unbearable, you just need to tell them. Your wife will need lots of support and rest whenever possible. This is the time to rope in friends and family to do the school run and shopping if you can.
At some point in the future this will all just be a nasty memory and life will be good again although it all seems to last forever when you are going through it. My ileostomy was reversed in May this year and I am back to eating normally with 3 monthly checks to hopefully ensure that I remain cancer free.
Good luck and best wishes to you both.
Nicky, so glad to read that your ileostomy was reversed. My colostomy is permanent but I don't mind. Glad to see that things appear to be going well for you!
Thanks for all the responses.
We meet the specialist Doctor a week on Wednesday for more info by which time the last of the scans should be done. In the meantime we're in the process of filing the various insurance policies to give us some peace of mind financially....
Quoting some of the forum legends, I am sorry that you needed to find us, but glad that you did find us.
There are some similarities between my diagnosis and your wife's, although of course her journey will be longer and more difficult than mine. Similar age, bowel blockage although I went four weeks and was pretty bad by the end of it, also moderately differentiated adenocarcinoma but only Dukes B with no lymph node involvement so no chemo for me.
Give her all my best, stay strong and we'll both celebrate five years from now.
Thanks Itsy Bitsy glad to see you dodged the Chemo...
Hi, I am currently on capecitabine, the oral tablets. I originally had them alongside 5 weeks of radiotherapy, then my op. Am on them now because I have one lymph node that didn’t look healthy (not cancerous, just not right!) so this is my mop up chemo.
Its ok, it’s bearable. I’ve found some cycles to be a lot easier than others. I’ve also learnt when is best to eat, it’s reduced the nausea massively. My hands were terribly dry at first but I changed creams and it’s been a lot better. I sometimes get tummy ache, mild diarrhoea or wind, but all manageable. The tiredness has increased, but I need to be more stricter about bedtimes!
Chemo isn’t always as bad as it seems. You tend to only hear about the worse cases, but life can go on very easily with chemo. Just remember to always inform nurses of anything you’re worried about, no matter how small. They are there for you throughout.
Hi cottontop, if you read my profile you will see that I have been on exactly the same path as your wife, including the week of constipation followed by emergency surgery, stoma and chemo. I had some side effects (again, see my profile) from the chemo. I can’t pretend I enjoyed it, but it was nothing like as bad as I feared (for me, no sickness at all and no hair loss). It now seems like a remote memory - my top tips are to do as much exercise as you can bear, to organise little treats for the end of each cycle when your wife should be feeling at her best and to try to remember that it will come to an end. I had my stoma reversed almost 4 weeks ago and, apart from feeling a bit tired, life is pretty much back to normal. I know that isn’t evryone’s experience, but I hope it will be for your wife. Good luck!
Tomorrow morning we meet the Oncologist to get more info on the Chemotherapy and hopefully proposed start dates...
Hope the meeting goes well. Chemo affects everybody differently but it’s very doable.
Take care and let us know how you get on
So had the meeting today with the oncologist who was lovely (and seemed much younger than expected !)
Went through the Chemotherapy that will be used (Capox/Xelox - Oxaliplatin and capecitabine) side effects, timescales etc. and then got taken around the facility which was great. Even showed us where to get the parking chip coins changed so we don't have to pay for parking
Pre Chemo assessment takes place tomorrow and she starts a week on Monday. Into the unknown we go !!
That all sounds as good as can be expected. I hope it all goes really well Anna x
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