Bowel cancer

Hi everyone I've recently been diagnosed with Bowel cancer. I have had surgery and I've got a stoma fitted until my chemo ends, Then I'm having a reversel....
I have just finished my 3rd chemo session and my oncologist keeps deferring chemo because my bloods keep being low, and I'm  having to have injections to keep bloods up.
And they have altererd my chemo (not as strong)
Has anyone else been through anything similar? 

Comments

  • LesleyLesley Posts: 102 ✭✭✭
    Oh! Yes going down the same  route as you! Second round of chemo on Thursday; 1st round awful  stopped Christmas day! Awful hopefully sorted out now reduced chemo 🤞 you are not alone ! Xx
  • ShellShell Posts: 7
    Do you have a pump at home Lesley? How do you find the injections, I find them ruff. Xx

  • LesleyLesley Posts: 102 ✭✭✭
    No , they are giving me infusion then tablet s with my normal ones I am taking  18 a day! Blimey stressing me out managing the medication! If that works I have the operation! Then 4 rounds of chemo  ! 😶!
  • LesleyLesley Posts: 102 ✭✭✭
    No not on the pump ,had really bad raction to chemo ,starting again on Thursday But we are going down the same route , and we will see it through together! Xxx
  • ShellShell Posts: 7
    After I have my chemo I come home for 46 hours with the pump, I'm on 12 cycles  and my chemo is every other week... I've also got a Hickman line fitted, which is a nuisance tbh.
    Good luck for Thursday hope it's succesful Lesley you take care xx
  • LesleyLesley Posts: 102 ✭✭✭
    Thanks Shell will keep you posted xx
  • ShellShell Posts: 7
    Yeah please do lesley x
  • achybreaky71achybreaky71 Posts: 8
    I have had bowel cancer for 2 yrs now, I have an ileostomy (Bertha) and she and I have had our battles...but I am the boss, even though she saved my life! 
    She now has a hernia now probably my fault and then a few weeks ago she ruptured...ladies and gents take care of your colostomy as the pain when a hernia ruptures is horrendous. I have chemo every other week, just had a 5 week break start again next week pump for 48 hrs, I have a picc line. Similar route to Shell and Lesley. I have steroids for 5 days afterwards the weight packs on, but I could clean the house and garden for England....I am told I talk a lot!!
    Then I sleep a lot, but in between live a life, walk the dog not too far and I have found tai chi amazing, makes you focus and helps balance, I have neuropathy from chemo, in my feet and hands, My oncologist has changed the chemo now but nerve damage done. I have a fantastic medical team at the hospital. 
    Achybreaky....
  • ShellShell Posts: 7
    2lhi Achybreaky, 2 years can't you have a reversel? Can I ask what stage is your cancer? Also why are you still on chemo, I may be sounding nieve but I'm new to cancer and I'm trying to understand the situation etc. 
  • achybreaky71achybreaky71 Posts: 8
    Briefly I was admitted with pneumonia and 4 days later they realised on top of that i had sceptics and a tumour in my colon. Whether this made my situation different I will never know my g.p.s took no notice of my pain and maybe had things been caught earlier I could have had a reversal,When I met   the consultant he told me my tumour had burst out of colon gone walk about dropped off cancer cells  gone bk to colon but  damage done, and I needed chemo. 12 sessions and I was told all clear...went away hoping for a  reversal but I didn’t feel fell  well again after 6 wks CT etc and all the cancer cells back but none in my main organs. So once again chemo but a different type, which suits me, I was told it was an aggressive cancer but if I didn’t mind chemo every other week and having a picc line then my quality of life could be ok. No chance of loosing Bertha, so that’s my life, I have breaks just finished one had scan I have been told it’s good but no idea how good as I am to start chemo again this week. It seems good could mean under control, I see the Registrar this week. I remain positive and focused. Good luck with your cancer. 
  • Karen46Karen46 Posts: 2
    Hello all 
    I’m now 46 but was diagnosed with bowel cancer in the sigmoid colon 3.5 years ago . It was believed to be a stage 3 at the time as it had gone into 3 lymph nodes around the tumour 

    I had an op to remove 2ft bowel, 19 lymph nodes, left ovary and left Fallopian tube . I then had 12 sessions of Chemo which half killed me, oxaliplatin and 5fu pump. I felt very poorly, had neuropathy in hands and feet and a low blood count. After my 10th Treatment they reduced my oxaliplatin to reduce the risk of permanent nerve damage 


    I used to take ginger capsules to help nausea, coconut water to help my white blood count, and Israeli lifemel honey to boost immunity which was great . The secret is to keep eating and drink as much water as you can to flush the toxins out. You’ll feel worse if you don’t believe me.  I have read however, that CBD oil helps reduce the nausea caused by Chemo and also helps with pain control. 

    I now take high dose vitamin C, zinc, vitamin D and turmeric with black pepper. 

    After Chemo I took ALA alpha lipoic acid to help with peripheral neuropathy which also seemed to help a bit. 

    I was in remission for 6 months but am now palliative as its in my lymphatic system. I was given 6-12 months, 2 years ago.

    I took myself self away from my local hospital and now travel 2 hours to the Christie cancer hospital in Manchester. They are brilliant there, and I’m sure I’m still here because of them . 

     Now I’m on capecitabin Chemo tablets (the tablet form of 5fu pump) which I seem to be tolerating a lot better. My energy levels are higher and lower nausea levels. Maybe an option? 

    I also have have an infusion of a drug called avastin to try to reduce the blood supply to the tumours to prevent further growth .  I feel a lot better in myself and my pain greatly reduced. 

    My my own hospital would t give me a porta cath line because of the cost, but the Christie use them . They don’t care if you’re curative of palliative they will always give you 5* care. 
  • ShellShell Posts: 7
    Blimey Karen46 you have gone through it.  Thanks for your tips I shall take them on board and try them.
    Christies is a fabulous hospital and thank goodness we have it. You take care  x



  • RobertARobertA Posts: 258 ✭✭✭
    @achybreaky71 @karen46 and @shell and @lesley ;

    Good afternoon all
    I have not commented on this conversation before as I have no understanding of this particular cancer. 
    However, from reading your posts, it is clear that you have all endured and continue to endure a great deal of unpleasant and stressful treatment. 
    I am full of admiration for your courage and fortitude which is clear from reading your posts. It is great that you are able to use this community to help and support each other and I wish you all the best.
    Rob X 
  • achybreaky71achybreaky71 Posts: 8
    Thank you RoberA.
    Karen 46 you sound like you have been through the same hell as me except I am 71 and you are 46. I too have neuropathy and it’s horrible especially in one hand as I have carpal tunnel and arthiritis .  I too have been to Christie’s for a 2nd opinion they agree with what I am taking so far, will notify me if they feel they can help me any more. I was on turmeric but had to come off it as my oncologist said so she wasn’t at all happy and said I should never have started it. She has advised special insoles for neuropathy for my feet, which may help my back pain where there is no cancer. Also acupuncture for neuropathy. I too drink loads and find that is very important, I find it hard, I also have steroids after chemo for 5 days keep me very wide awake and I feel great but I want to eat far more, and I have to be so careful, I was a size12 now 14/16 I hate it, nothing fits.  Hope to hear more from you it does I am sure help this chatting.


  • Karen46Karen46 Posts: 2
    Yes thank you Robert, and hello Achybreaky71.

    Same here.. I have gone from a size 12 to a 14/16 and cannot get rid of it. I can’t stand looking at myself. I’m a different person. My face is like a moon face. 😂

    oh well.... I have refused steroids this time round as they are really to assist with nausea and appetite. They didn’t help my nausea at all and I ate like a pig. They made me bad tempered, I couldn’t sleep, and gave me a bright red face, so they are a big no no for me. 

    Im doing fine without them now. 
    X
  • achybreaky71achybreaky71 Posts: 8
    I am going to do same have had IV dose today before chemo so I suppose I shall have to finish the course. Seeing oncologist tomorrow so will discuss.
    i don’t sleep, and my face is bright red, and my face is huge with about 6 chins...my friends say as a joke I hasten to add keep your chins up! I also have awful sweats keep a  battery fan in my bag my hair which I still have drops into curls stuck to my head it’s fine and short anyway, my foundation runs off eyes get smudges from liner......now I am using tan cream which tans in 5 hrs, just a tiny bit but gives me colour and everyone says “you do look well” you gotta laugh, and at least my face keeps its colour through the sweats,!! Hair spray doesn’t stop my hair dropping so I wear a peak cap when it looks awful when out.
    i have had to buy a new winter coat my “ladies” are so huge I have had to buy an 18....I have always been well endowed at the top so I wear trousers and skirts to get more room on top size16 is the highest I have been, it’s so depressing. Bertha makes me look bigger as I have to wear tunic tops anything loose as she can look huge. Just not used to looking big, I had slim legs and although slim still compared to a lot, I feel massive like you hate looking in the mirror. I will see if coming off steroids will help the weight.

  • ShellShell Posts: 7
    edited January 15
    I fully understand I've gained 2 stone 2lb since October when I had my tummer removed and bag fitted.  My face is also blood red and I cover it up with various types of make up, and everyone who see me says exactly the same, you look great you wouldn't know you had bowel cancer.... 
    I've just had my 4th chemo cycle yesterday with the 5fu pump, which ends Wednesday 8 more to go.  I also have injections for 7 days to keep bloods up which are a killer side effects are tuff, but need bloods up to carry on with chemo. 
    Stay strong xx
  • Jo49Jo49 Posts: 2
    Hi I’m Jo was diagnosed stage4 bowel cancer of the sigmoid in April 2017. It has spread to my liver and I have a spot on my lung. I underwent 12 rounds of oxilplatin and 5fu, after 3 rounds had to have the dose reduced. But I coped and got through it. The chemo worked very well significantly reducing the bowel tumour and the liver mets. I then had bowel surgery full sigmoid resection with no bag, so that was good and had a fully functioning bowel without problems since. I have since had 2 liver resections in 8 months and go back for my PET scan results tomorrow to see if I need further chemo/ next phase of treatment, hopefully being to tackle the 6mm nodule on my lung. It’s hard work it takes it toll on your body but for me the old cliche ‘staying positive’ and determination keeps me going. I still have a 12 year old I have to raise and 2 new grandchildren to look forward to. I’m still waiting for cancer weight loss as I thought I finally may be slim but no staying around the size 16/18 I’m not complaining. I’m still here xxx
  • Heidi1980Heidi1980 Posts: 2
    Hi all, I’m going through bowel cancer for a second time (originally diagnosed in 2016 age 36, a year of treatment including 3 ops, temporary stoma and 12 rounds of oxaliplatin/capecitabine got me cancer free and a year in remission).

    My experience of being back on chemo (now irinotecan/capecitabine) is that the more good stuff you can put in your body (fruit, veg, water, LOTS of fresh air!!) the less crappy side effects you will get. I find I crave McDonald’s and chicken nuggets etc but cycles where I have indulged these cravings have been much harder to cope with and left me exhausted and in low mood. I never normally eat this way as it makes me feel rubbish so why would I think doing it on chemo would make me feel okay?! I find that taking anti-sickness tablets at regular intervals throughout the day means I can tolerate more decent fresh food whereas leaving them to the point of feeling sick leads to these cravings.

    Also, I swear by yoga, google “Yoga with Adriene” to find a million different yoga routines and one that will suit you, even if it’s just laying and breathing, it helps!!!

    Sending hugs to my fellow warriors, this cancer lark is bloody hard but you can fight your way through it!

    Heidi xx
  • SunshinedaffSunshinedaff Posts: 368 ✭✭✭
    @Heidi1980

    Hello Heidi,
    Thank you so much for sharing your story and joining us here. 
    There are a few here who also are fighting bowel cancer. I am sorry to hear you are fighting it a second time. Your story and others' stories are very humbling to read. Your strength of character and determination to succeed in this fight shine through. 
    I had breast cancer, but I feel as though all of you have gone through so much, compared to me. 
    Thank you for sharing your thoughts on diet, nutrition during treatment. It's very helpful. 
    I have never tried yoga, to be honest imagining myself trying to get into various positions would be a sight! 😄But I suspect it's not like that at all! 
    I hope your treatment will be successful. 
    Welcome to the group, I hope you find it helpful and supportive for you. It's a friendly place! 😄

    Lou x
  • RobertARobertA Posts: 258 ✭✭✭
    edited January 17
    @Heidi1980
    Hi Heidi
    So sorry to hear that your cancer has returned. 
    I am really pleased that you have joined our community and your advice on healthy food and fresh air is useful for all of us whatever our condition or treatment. My treatment usually causes weight gain, but I have managed to combat that with lots of outdoor exercise  and a wife who watches my food intake like a hawk. I am only allowed my favourite carrot cake on a Saturday, and that is a trade off for me allowing her to pop in to every shoe shop in town when we go shopping, 

    I am getting on a bit but I can probably manage the laying and breathing bit of yoga.  😀  I actually use exercise bands with which do help me to keep reasonably fit and flexible. 

    I Have seen your great photograph on the 'Us as people' section. I am full of admiration for yourself and all the others who have to undergo the awfulness of chemotherapy, but refuse to let it stop you from living your lives. 

    It it is fantastic to have you posting in our community and your sunny and positive attitude, along with your great advice are of huge benefit to all of us.
    Thanks
    Rob x


  • SunshinedaffSunshinedaff Posts: 368 ✭✭✭
    Jo49 said:
    Hi I’m Jo was diagnosed stage4 bowel cancer of the sigmoid in April 2017. It has spread to my liver and I have a spot on my lung. I underwent 12 rounds of oxilplatin and 5fu, after 3 rounds had to have the dose reduced. But I coped and got through it. The chemo worked very well significantly reducing the bowel tumour and the liver mets. I then had bowel surgery full sigmoid resection with no bag, so that was good and had a fully functioning bowel without problems since. I have since had 2 liver resections in 8 months and go back for my PET scan results tomorrow to see if I need further chemo/ next phase of treatment, hopefully being to tackle the 6mm nodule on my lung. It’s hard work it takes it toll on your body but for me the old cliche ‘staying positive’ and determination keeps me going. I still have a 12 year old I have to raise and 2 new grandchildren to look forward to. I’m still waiting for cancer weight loss as I thought I finally may be slim but no staying around the size 16/18 I’m not complaining. I’m still here xxx

    Hi Jo, 

    Just wanted to say hello to you, and welcome you to the group.
    Thank you for posting your story and progress thus far. You have been through so much, and I am very pleased to hear that treatment and operations have been successful in reducing the tumour, and your bowel surgery was so effective. 

    I think that staying positive is crucial to the effectiveness of treatment and can have an effect on the outcome. I too maintained a positive attitude throughout my treatment, and I remember seeing one of my oncologists one time who specifically said to me, firstly she'd remember me, but more importantly that they have seen a clear difference in the outcome between those who have a positive outlook and those that don't. 

    But it is not easy by any means, but it is worth persevering. 

    How did you get on with your results?

    As for the weight loss, when I was diagnosed and told everything that would happen, once it had sunk in a bit, I did think 'Great, I might lose some weight, especially on chemo'...I thought there has to be a silver lining somewhere! 
    Did I?? Not on your nelly!! Weight piled on, my oncologist suggested I get an exercise bike and try and use it twice a week to help. So we got one. Did I use it??? 
    Of course!!! …..No I didn't! My joints hurt too much.

    Now my husband uses it to try and lose weight. 

    I really hope you continue to respond to treatment, keep looking forwards, please keep in touch, feel free to come and chat anytime.

    Lou x







  • Jo49Jo49 Posts: 2
    Hi Lou

    thanks for your reply. PET scan results were not as we hoped, have another spot on the liver within 2 months of surgery, my lung spot has grown from 6mm to 12mm and lymph node in my chest is glowing. My chest hasnt glowed for years. 😁 however not all doom and gloom we are having a bash at triple chemo attack at this bugger. I start chemo mid feb, (holiday to Cyprus for me and hubbie 1st) 12 rounds of Cetuximab, Irinotecan & 5fu with dash of folonic acid thrown in for good measure. Sounds like a really good cocktail. All new chemos to me and there will be hair loss this time, so me and my 12 year old daughter have been out today got a good eyelash collection, 2 new wigs, (one lilac) and a array of scarves. I’ve even found stick on human hair eyebrows. I cannot and will not let this cancer put me in a downward frame of mind, for the time I have left with my children I want it to be ‘Me’. I know this is not going away but I hope that it keeps me around a while longer.

    good news however I have gone down a dress size. And bought another set of loungewear. Bloody loungewear is all I seem to have worn the last 2 years. 

    Love jo
  • SunshinedaffSunshinedaff Posts: 368 ✭✭✭
    @Jo49 ;

    Hi Jo, 

    I am really sorry to hear about the scan results, but it is really good to hear the Dr's are prepared to attack it vigorously. I know that will be a difficult process for you, but will be worth it if it kicks it into touch for a lot longer.

    It is wonderful you are going on holiday first though, I do hope that will be as relaxing and stress-free as possible.

    How fantastic to go shopping with your daughter to prepare for the difficult, inevitable hair-loss. I am sure is she trying to be as brave as you are, facing this enormous challenge. I had a lot of fun, shopping for hats and scarves, I didn't do a wig. Although I had already started chemo, and my hair was already starting to fall out. Every hat I tried on my friend and I had to scoop out handfuls of hair, I cried laughing, walking around with piles of it stuffed into my coat pocket. 
    Just a little heads up (pardon the pun), be prepared for it to be painful, I wasn't expecting that. It may not be for you, but if it is, at least you know.

    I have two daughters who are teenagers, well one only just still (19), but they both were at the time of my diagnosis. Now 17 &19. 
    They were both so brave all the time, even though it was distressing for them. My youngest really struggled when my hair fell out, I think the reality of what we were in really hit home then. We really involved them in as much as they wanted to be involved in. Sometimes that meant coming to hospital with me for my pre-chemo bloods, and oncology appointments, then again for chemo. They met the nurses and my oncologists. 

    I am so glad to hear your fighting spirit and determination, I am right behind you, and will stand right next to you if it helps you.
    '
    Woohoo! a dress size down! Marvellous! Loungewear, hahaha, I know the feeling, as will many others I've no doubt!
    Perhaps we should put a call into Stella McCartney, get her to design some decent stuff, then you can strut your stuff down the catwalk!!! (I say you, I'd probably shuffle!!) =)  =)  =) 

    Love Lou x
  • SunshinedaffSunshinedaff Posts: 368 ✭✭✭
    Shell said:
    I fully understand I've gained 2 stone 2lb since October when I had my tummer removed and bag fitted.  My face is also blood red and I cover it up with various types of make up, and everyone who see me says exactly the same, you look great you wouldn't know you had bowel cancer.... 
    I've just had my 4th chemo cycle yesterday with the 5fu pump, which ends Wednesday 8 more to go.  I also have injections for 7 days to keep bloods up which are a killer side effects are tuff, but need bloods up to carry on with chemo. 
    Stay strong xx
    Hi Shell, 

    Just wanted to say I'm thinking of you, from your post it looks like you have had a week of injections as part of your chemo regime.
    I remember how awful they were, although a different cancer, but very tough. I hope you are managing to get through it ok. How often are your cycles of treatment?
    I hope you have a restful weekend.

    Lou x



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