Just started chemo after 6 months to get diagnosis

Hi, tryingtobeabravemummy, my diagnosis was T3N1M0 changed to T3N0 V1M0  so not quite the same, and my chemo was 5FU, but happy to try and help with non technical issues if that makes sense!

Welcome tryingtobeabravemummy I can see from your post you have had a distressing few months trying to get diagnosed. I am sorry you have had to join us but I am going to tag in Hayleyc89 as I think her husband had similar chemo and with good results . You also might like to read Francesst husbands story as I think he has also used the same chemo with encouraging results .

If you click on my user name you can read my mum’s story as she navigated her way through a difficult diagnosis however chemo turned out to be a powerful tool in her treatment box . Not going straight to surgery took a bit of getting our heads round but it actually provided the opportunity to shrink the visible spread but also to pull in any micro disease . 

Do you know any details about your cell type yet !

How are your precious children ? You give them a big hug from us and be assured we are here to help you through this difficult time in your life and hope chemo turns this around for you. 
It turned my mum operable twice !!

take care ,

Court 

Hi. Sorry to hear your news. My Husband was 37 when diagnosed we have 5 children so I know how hard it is for you. He was diagnosed T4N1MO on scan and was told he can't be operated on as the tumor was touching he's pancreas ge had 3 months on folfiri chemo and thankfully the tumor shrunk and surgery was performed he's had a very successful outcome and is now back on chemo as cancer was found in 1 lymph node during surgery so he's just on chemo incase there's any cells lurking around he has had side effects such as sensitivity to cold, nauseous, fatigue and aches and pains but overall he is doing really well. I hope everything goes well for you x

Hi Gemmary, thank you for your reply. How did you get on with chemo? were you offered anything else? how are you doing now?

Hi Hayley89, thank you for your reply. Yes the fact that surgery is out of the option at the moment has taken me while to get my head around. It took me so long to get diagnosis and then all of a sudden everything happened so fast it has been a lot to take on as with all of us :-) Glad your hubby is on his way to a recovery. Stories like yours are encouraging for me to keep going and having faith in the outcome. xx

Hi Court, thank you for your reply and the tags. Stories like this are encouraging for me. It has been a difficult few months to get here as I had to visible symptoms other than mild weight loss and some dull back pain that was ok to manage. I even asked the the doctors whether it was cancer and was told no as all the indicators were for something else so when the diagnosis did come as bowel cancer my husband and I were shell shocked. At the moment I am at least happy I finally have a diagnosis and started treatment so I need 6 rounds on FOLFIRI then will re-scan and  see response to discuss further options. From the oncologist letter to my GP, the cells are MMr intact, KRAS mutant, NRAS/BRAF wild type whatever that means. My children are ok, happy little ones at the moment as we are trying to keep things as normal as possible for them. Lets see how I manage on chemo hey... will keep you all posted. Thank you so much for your support... It really keeps me going :-) x

Hi, tryingtobeabravemummy, I had a low anterior resection, laparoscopicly, which is where they found the vascular invasion. This then led to the chemo, 30 weeks of 5FU. So your case is different.

Hi Gemmary, yes it is different, but still good to share experiences, thank you for sharing your story  with me :-)

Hi tryingtobeabravemummy

It is a horrible shock for you and your family . However getting started on chemo should give the opportunity to start pulling this back in and hopefully open up surgical options for you in the not too distant future. People do seem to report to tolerating Flofiri quite well so hopefully it will be the same for you .

You will get into a good routine with chemo and people seem to get a feel for the days when they need to rest a bit more . Do you have some family and friends help ? 

We are here to support as you learn to live with this situation . Once you see how you are coping with it you can start to see if it’s possible to plan small events each week . We did a different activity so it did not feel as though cancer had swallowed up my mum’s entire life . Although I did some parts more than others we learnt new skills , made cushions etc . But it was good therapy! We copied a young 20 year old girl who used to post on here ! You have your children to care for and are great at keeping people connected and pushing forward . 
Take care ,

Court 

Hi Court,

It will be a bumpy ride as it is for everyone, but I need to get through it and hope for the best. We don't have immediate family nearby, the closest one lives up north and both sets of parents and my sister etc live abroad and at the moment its tricky for them to come over with Covid and stuff... But luckily, hubby has been working from home since Covid hit and its a permanent thing so he isn't going back to the office. I am staying at home mum and also do some self employed work from home myself so at least that is easier to manage. We have friends and very good neighbours, teachers etc that can help us if we need so that aspect is ok too. Yes we try to plan something every week, especially at the weekend with the kids and that helps us keep busy. We live in the heart of Elveden Forest in Suffolk  so we have lots of lovely places to visit and get some fresh air which helps with the situation. We have some good friends that we can have playdates with as well if I am struggling a bit, so really I am quite lucky. At the moment I am taking it a day at a time and not overdoing it, giving myself some down time during the day to help me have energy for the rest of it so I am getting by ok. Thanks for all your advice and support.

Take care x