Stage 4 bowel cancer

azro3

Not what we were hoping to hear

So, just back from the last CT scan results. Looks like the Irinotecan has stopped being effective.

Just finished three months of chemo
- CEA markers up from 62 to 209
- 3 new liver mets 9mm, 5mm, 2mm
- Existing 2 liver mets have grown, one from 24mm to 55mm
- 2 enlarged lymph nodes in lungs

Not what we were hoping to hear.

My wife did have another dose of Irinotecan scheduled for tomorrow, but they've decided to switch to Oxalyplatin as that was quite effective for her initially.

I think that now we're just waiting to see if the change to Oxy has an impact. The liver scan has been forwarded to the QE hospital, but not sure if they'll be able to resect - our oncologist wasn't able to tell us where the nodules were - if they were all localised or not. Feel a bit frightened for the future now.

azro3

Thanks @jj , @Lirio345 , @Lizalou , @Baxter2

@soph86:
My wife had genetic testing for Lynch Syndrome (which came back negative). We don't have a copy of the results (need to get one on Wed) just a letter that says that she doesn't have Lynch Syndrome, but know that she has the KRAS mutation. MSS stable. Sadly that limits the immunotherapy options, although there a couple of clinical trials...

stu

Hi ,
They are looking at the high levels of tumour mutation Burden now not just MSS or MSI . If her tumour mutation Burden is high she may find Immuotherapy helpful . In the US some MSS patients are responding .
Take care,
Stu

azro3

Thanks very much @stu I wasn't aware of that, I'll ask our Oncologist on Wednesday. Have been reading up on it a bit during the last few days, and browsing the clinical trials, so have a fair few questions to ask him now.

azro3

Have just been to see the Oncologist. Emma's liver function has started to deteriorate. She won't be able to have any more chemo and wouldn't meet the performance criteria for a clinical trial. He recommended making her comfortable and enjoying the time we have left.

terri m

Sorry to hear this @azro3 .. There is nothing I can say to make you feel better at this time but my thoughts are with you both xxx💖😘

Tiffany

@azro3

I'm truly sorry to read this update. How devastating for you both. I really hope that you are able to share some special times together over the coming weeks/months.

I will be saying a prayer for you both tonight and sending you lots of love and strength to get through these very hard times.

Lots of love, Tiffany :x:

Gypsy

I also will be thinking of you both. Love Gypsyxxxx

determinedjoan

I am so very sorry & deeply saddened to read your update.
Really hope you’ll be able to return home 🏡 now & share special days together.
You’re in my thoughts & prayers.
Sending love, hugs & soothing vibes :x::x:

jj

Oh @azro3 heartbreaking to hear this. Just know that you both are in our thoughts and prayers. Lots of hugs and love

azro3

Thanks @terri m @Tiffany @Gypsy @determinedjoan @jj
It's still sinking in really, only a couple of months ago we were pottering around together. If her liver had lasted a bit longer, she'd be having chemo today. Just can't believe it. Thank you all for your kind wishes and support.

charleyb

You are both in my thoughts, and i pray that your wonderful wife is comfortable and pain free. I hope you have lots of support around you @azro3 , you are such an incredible, supportive husband :x::x::x::x:

bettebette

Dear @azro3 I am sorry to read your latest news. Sending you both lots of good wishes :x::x::x:

Seymore

I am so very sorry to hear this news, you have been in my thoughts. I have no words that seem right, but you will be in my prayers and I hope that your lovely wife remains comfortable so you can enjoy each day together. Take care of yourself too :x::x:

Salgal

I am so very sorry to be reading this, gentle hugs being sent to you both :x::x::x:

azro3

Thanks @charleyb @bettebette and @Seymore and @Salgal

Brought my wife home today. The palliative care team have been fantastic and she has a syringe driver to administer the pain relief, which seems to be keeping her comfortable right now. Am expecting a visit from the district nurses tomorrow.

I've been struggling through the day. Just sad that despite all the hard work and support, we didn't get to beat the odds. I just try to remind myself that it's how you face things rather than the ending that matters. I've always been comforted by the ending of the Jack Gilbert poem Failing and Flying about Icarus, who flew too close to the sun, which melted the wax on his wings and caused him to plummet to earth:
"I believe Icarus was not failing as he fell.
Just coming to the end of his triumph"

bettebette

I am glad to read that your wife is at home @azro3. That is a great quote (and sentiment) from Jack Gilbert.
Sending you both lots of good wishes and wishing you happy and peaceful days :x::x::x:

Salgal

@azro3 I’m so happy your lovely wife is now at home with you, and she is comfortable. Cherish every second, gentle hugs to you both :x::x::x:

Jani

Sending much love to you both @Azro there is no easy way to walk this path, but i’m glad you have a good palliative care team and that you’ve met up with a mens support group too. Holding you close in my thoughts.
Hugs, Jani :x:

greyhound gal

Good news that your wife is back at home @azro3, and that you are both getting support.
Sending wishes that you have lovely, memorable times together. Here’s to triumph :x::x::x:

Gypsy

Thinking of you both @azro3 . Sending love, Gypsyxx