My dads new diagnosis of bowel cancer last week

Hi

Welcome to the forum . The helpline is for anyone affected by a cancer diagnosis so please do feel free to contact them . 0808 808 0000. They would be happy to chat to you .

Chemotherapy for some people can work very well on the primary tumour and any existing spread . Sadly not all people yet but there are many different combinations with second and third line options available. 
My own mum had an extensive spread to her liver . Went straight to chemo and after just six cycles there was nothing visible on her CT scan with only a ballpoint size lightening up her PET scan . If you click on my user name you can read her full story . You will also find many people with a spread using Chemo alone as a chronic condition and been treated for years . Sadly some people do not respond so well but we are fortunate to have a few different options from which to treat from . 
The hope to me lies in the fact he is an individual and the only response that matters is his own .

Take care ,

 Court 

Hi Siobhan,

Similar situation to me, and it's very normal not to operate initially. I had chemo, which reduced the tumour and then had the op. All sounds like they're moving fast and taking things at the same pace and order as with me. I am two years since my op, all clear, and being a nurse you'll know the biggest thing is for you all to relax. Positivity is the one thing I did right, and I wouldn't change a thing. Definitely ring Macmillan, I paid for private counselling which - a little like you typing your thoughts out - helped me survive mentally, in fact I thrived.

During chemo I would simply take the advice of the hospital. But if you strictly self isolate, literally no contact, for 2 weeks personally I would consider myself safe to go and spend time with your Dad. But chemo will be over before you know it, for your Dad it will feel longer, it did for me. But make use of FaceTime etc.

Good luck, one day at a time (another thing I did right) and I'll keep a look out for your updates.

:-)

Hi Court,

thank you for your reply. I have been reading through you and your mums experience. It’s good to get someone else’s perspective and I totally agree that everybody is different. This is what I keep telling him and I am trying to reassure him everyday. We have not got the results of the biopsy yet, well that I know of anyway. But at least he is starting on Friday so I am just hoping to God he is okay with it and doesn’t have any severe side effects  

kind regards 

Siobhán 

Hi gonnahavemestomafun, 

thank you for your reply. It is good to get other people’s perspectives and hear others experiences. We haven’t got the biopsy results yet but regardless he is starting his treatment on Friday and we are all hopeful this will go well. 

I’m so happy to hear positivity has got you through these tough times. It’s amazing what your mindset can do. 

I speak to him everyday and he sounds okay, I know his biggest struggle will be not being able to get out as much and just live his life as he normally would ( he was literally building up a ruin of a cottage Up until the week before diagnosis) But I keep saying you will have up and down days during the chemo but it won’t last forever. He says he is sick of talking about it now and just wants to get started haha. We have 3 birthdays to celebrate in August so I am praying we as a family can hopefully get together then to celebrate life. 

I’ll keep you updated and will no doubt have more questions soon

kind regards 

Siobhán 

Hi,

Just popped to to wish your dad luck with the chemotherapy. The test you mentioned was a DPD test for enzymes in the liver. I hadn't heard of it before but my oncologist said that the blood gets sent to London and tested.  I don't think every hospital trust is doing them. I think you can get a bad reaction to 5FU and capecitabine. I had a call yesterday to say that my test was negative so my chemo can go ahead. I am starting on 13 May and having a picc line fitted tomorrow.

I am so glad I found this forum, it has helped me so much and reading all the positive comments and chatting and getting help other people has made me less scared.

I hope it helps you too and that you will soon be able to spend time with your dad.

Take Care xx

Hi Phoebe21

DPYD Gene Testing

This is a test for DPD deficiency,

The test - a small blood sample is taken and sent to a genetics laboratory to look for mutations (changes) in the DYPD gene.

Research has found that some people have a low level of DPD enzyme (dihydroprimidine dehydrogenase) and are more at risk to side effects if they are treated with fluropyramidine chemotherapy drugs (5-FU or Capecitabine). Side effects vary from person to person but sometimes they can be severe.

The enzyme DPD helps our bodies break down 5FU and Capecitabine.  It is very rare to have no DPD in the body but it can be low or very low.

Without this test, Clinicians only become aware of partial DPD deficiency when side effect occur in patients receiving these chemos.  

Some hospitals( pilots) are routinely testing their patients for DPD deficiency prior to recommending treatment with 5-FU or Cap.  It is hoped that this will become routine in all hospitals before too long.

if you are found to have a DPD deficiency, your clinicians will discuss this with you and they may change your chemo dose to make the treatment safer for you.

You can ask your clinician if they routinely test  for DYD deficiency before recommending these chemos.  I understand that you can request to have this test carried out.  It may not always be available on the NHS but I understand it can be carried out privately and I think the cost is between £100 to £150, 

If you are found to have a deficiency, it is important that you make your close family aware as they may also have a deficiency and should also be tested if they need treatment with these chemos at any time in the future.

I have a real interest in this as I was on a high dose of Cap for over six months and I developed side effects in my joints which I put down to my chemo but evidence wasn't available when I had my treatment.  I now have severe arthritis in some of my joints and I understand that  a connection has been found and some research is  going on at the moment looking into this connection.

Take care,

VickiLynne