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Beating Bowel Cancer Community

Stage 4 bowel cancer

Lee1974

An update 8 months in @ Stage 4

Hi all, hope you fine people are doing as well as you can?

Not been on for a while and I find myself often forgetting I have bowel cancer until the treatment side effects cause mischief.

Since treatment started in February I have had a pretty easy ride. The PICC line I had fitted eventually had to be removed as it was originally set at 3cm and ended up at 8cm protruding on the day they took it out. It often was a pain to draw bloods on, although always flushed well.

I am now hardcore with the Hickman line fitted and since this has been fitted I have noticed the amount of 5FU that gets drained from the pump is much more. The little balloon in the pump is now always empty rather than having a fair bit left over.

I have managed to also gain a god bit of weight. In December I weighted about 9.5 stone. Now I weigh in at 13.5! Photos attached showing me in Dec 2016 and then in June 2017 after we renewed our wedding vows in Jersey.

The only side effects I seem to get are skin related with rash and spots probably from the cetuximab. It used to clear up wihtin a week of the last treatment and leave me wiht a clear week, but the symptoms are starting to linger up until the next cycle now.

I get down from time to time sometimes thinking about how long I have left. Pressed my oncilogist a few times and he remains of the view surgery unlikely and Christie have knocked me back for any HIPEC etc.

Having said that, I'm a lucky lad who has not needed to take any time off work, I have a good employer who will accomodate anything I need and I have a fantastic wife who has had my back since this started and continues to make a real difference as to how I tackle this.

Had 14 cycles now. Only disappointed this seems to be the way matters will probably go until I'm worm food. Not that I am stopped from doing anything though.

Stopped the irinitecan (sp) a few cycles back so no longer have to endure the cold cap. Just 5FU and Cetuximab now.

2 scans have show no new mets or any spread. Ascites completely gone and everything is reducing.

Keep at it everyone!

Lee

Sasa

Such a wonderful photo, how happy you are!

Sarah :x:

charleyb

@Lee1974 what a great pic you guys look so happy!! :x::x:

CD1966

Great pics!

Jen82

Lovely update :x::x:

sweetcheeks

@Lee1974 , great photos, happy memories ❤️ :x::x::x:

Baxter2

Good to read your update and see your lovely photos @Lee1974. Sorry you've been knocked back for HIPEC though. Have they given a reason? I can understand you feeling down from time to time. I do too, but manage to pick myself up refusing to allow stupid cancer to ruin my days!! I started taking an antidepressant about 18 months ago and I think it definately helped lift my mood enough to help me cope with my diagnosis. It may be something to consider? I've never needed them before in my life but neither have I had the challenge of living with stage 4 cancer either! Sending all my very best wishes, K💜💙💛❤️💚

Lee1974
Quote from @Baxter2:
Good to read your update and see your lovely photos @Lee1974. Sorry you've been knocked back for HIPEC though. Have they given a reason? I can understand you feeling down from time to time. I do too, but manage to pick myself up refusing to allow stupid cancer to ruin my days!! I started taking an antidepressant about 18 months ago and I think it definately helped lift my mood enough to help me cope with my diagnosis. It may be something to consider? I've never needed them before in my life but neither have I had the challenge of living with stage 4 cancer either! Sending all my very best wishes, K💜💙💛❤️💚

Thanks @Baxter2
The reason for HIPEC was the spread through peretenium was large and there is some wrapped around the small intestine and they seem reluctant to go in there,

99% of the time I'm good and it barely bothers or registers with me what I have.

DianeS

Great news that there has been no further spread and ascetes has completely gone, very Happy for you. Fantastic photos, beautiful happiness Diane :x::x::x::x::x::x:

Baxter2

I do believe they are reluctant to operate on small bowel @Lee1974 During my CRS and HIPEC that ran into a problem with my small bowel which they hadn't planned for (duedenum) and ended up resecting the second part of my duedenum. I'm glad you're good 99% of the time and seem to be living life to the full! Good on you! Take care, K 💜💙💛💚❤️

Lauren5429

Brilliant picture of you and your wife @Lee1974 - looks like you guys have a lot of laughs together 🙂 Glad to hear you're doing well xox

sgjools

Lovely, truly inspirational story. Stay strong Lee.

CD1966

It's great to see you doing so well @Lee1974 - definitely think if you can, it would be worth getting a second opinion on the HIPEC front, especially if you are having shrinkage. Basingstoke?

GD1962

Hi @Lee1974

Glad to see you are coping and sorry you were turned down for Hipec at Christies. Equally, I have been referred for CRS and HIPEC at Christies and stage 4, seems like long shot, like you I have continued working. And perhasp ypu shouild as @CD1966 suggests get a second opinion. All the best Lee, you seem like a great guy anyone would love as a friend . Take care and thank you for sharing your experience it has been very informative and helpful. :)

Sean

Great to hear from you @Lee1974 was wondering the other day how ya were getting on. Glad to see your craicin on with all! All the best man

Lee1974

Well after proclaiming I was suffering little in the way of side effects, the Cetuximab rash has taken hold. Face and neck full of spots and my legs covered in a rash. I have also had soreness to arm pits and groin, making life somewhat unpleasant. Grrrrrr

My oncologist said we could try missing Cetuximab every other chemo cycle, but I was too fearful of causing any halt to progress so far for the same of manky skin, so shall take it on the chin for now and carry on with the 5FU and Cetuximab.

To top it off, a swab test last week reveals I have MSSA present, so being prescribed a nasal spray and some other potions to apply and wash with.

Having said all of the above, life is pretty grand.

GD1962

Hi @Lee1974

Sorry to hear about cetuximab rash and pains. I think that you are incredibly brave young man. :)

Good luck and if you don't mind if I mention you in prayers

Lizalou

Hi @Lee1974 Haven't others here recommended antibiotics for the rash? .... hope they come up with some advice for you.

But I was diagnosed with MRSA when I had my reversal op.....got me a single room so it was a huge bonus!

The photos look great, the weight gain sounds positive, I am pleased that you are able to carry on a normal working life with a fantastic and supportive wife. So onwards and upwards!! :x::x:

Radfordh

My husband had a bad rash from the Panitumumab, accute oncology prescribed some strong steroids for 5 days and he was a different person. Not saying it went completely but was certainly bearable and he could continue his treatment (missed one cycle because of the severe rash).