New here. Start treatment on April 7.

Hi CTgirl

Welcome to the club no one wants to join. Everyone will be here for you if you want questions answered or just support. You can ask anything people are very open. Good luck for the 7th. Sending hugs. Xx

Hi CTgirl,

Welcome to the forum, although I'm sorry you've received the diagnosis that brought all of us here. I too am in the US and have discovered some differences between the treatment I've received and that which many patients in the UK receive. First and foremost, I was not offered DPD deficiency testing which is standard in Europe. Apparently, testing is available in the US if you ask for it, but it's not usually covered by insurance. Not sure what your experience has been.

Also, I received 5-FU by pump instead of oral capecitabine. They're both effective and so far as I know, both are available in the States, but there are differences in experience (you wear the pump for four days twice during treatment for 5-FU or take daily tablets the whole treatment time for capecitabine). 

Please reach out if you have any questions. There are so many wonderful people on this forum who have been through treatment and recovery--and we all want you to do well and feel supported.

Best of luck and take care. Xx

Thank you. I just reached out to my chemo team about the test. I am doing the pump week 1 and 5. 

Hi CTgirl 

Welcome to this wonderful forum where you can talk about all your fears concerning and questions.

This forum has been an absolute godsend for me to get me through the diagnosis.. planning..treatment and now post treatment issues..

I hope you have all the answers and support you need to get you though the next few months of treatment.. don't be afraid to ask questions on here.. we are all going through or have gone through the same treatment.. and have / had the same fears...

Stay strong and stay positive xx

Hello CTgirl

Another welcome from me to the forum although I am sorry to hear of your diagnosis.  Each of us can empathise with your feelings of terror, add bewilderment, denial, disbelief to the mix and it is a hugely stressful time.  But once treatment starts you will feel a lot more positive than you do right now.  We have lots of tips and coping strategies we can share so please come back and let us know when your treatment starts.

You are amongst those who really know what it is like, please take comfort in that,

Irene xx

Hi CTgirl

I'm uk based and I had the pump weeks 1 and 5 via a picc line for my chemo. If yours is via a picc line get something called a limbo sleeve it keeps the line dry for washing etc I even managed to get my pump in mine aswell. I also had low dpd levels and had to have reduced strength of chemo. Xx

Hi CT girl,

Welcome to the forum but so sorry about your diagnosis and that you’ve had to join us.

Having said that it’s such a brilliant source of information, support and wisdom. My main regret is that I didn’t find it sooner and utilise in the days post diagnosis. I know that this is the time when you can be reeling. 

As the others have said nothing is off limits and many of remember the fear of the unknown and the difficulty in talking about the diagnosis to friends and family.

There may be slightly different treatment pathways in the UK and USA but ultimately we are dealing with the same diagnosis.

Hopefully you will get your treatment plan and start date soon. 

Big hug to you xx

Sorry- realise that you have your start date on 7th. Xx 

Hi CTgirl,

I found it helpful when I was waiting to start my treatment to think of this as my 'training' period, and to get everything set up, so that when I actually started I would be focused and ready.

I spent some time listing things I wanted to watch or read and buying some treats like nice shower gel or chocolate to keep as treats. I also made and shopped for easy things to cook and eat, which I was really glad of because I just couldn't be bothered when it actually came to it; you might find you just want to snack on things you like rather than do proper meals.

Good luck with it, and please let us know how you are doing. Just try to remember if you feel a bit dragged down by it all that it's really effective. I  am almost four years post treatment now - but I remember it so clearly.

Terror is the right word!

Hi CTgirl ,

Another warm welcome from me. That initial period when you’ve been given your diagnosis but have no treatment plan etc., in place is awful, you’re in the worst possible limbo you could imagine, we all understand as we’ve all been there too. 

As I’m sure you’re aware there are some slight variations in the treatment plans & the aftercare etc., in the UK compared to that in the US but both regimes do what is needed & allow many of us to move on with our lives cancer free.

Just feel free to ask any questions you think we might be able to help with, we’re here to support you however we can. 

Nicola