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.

determinedjoan

Greatly relieved to hear that Oromorph is helping to ease the pain & you’ve been able to get hold of a wheelchair to give yourselves a change of scenery- that can sometimes help us to feel a little better. Really hope the medical team can help her to feel better soon :x:

Baxter2

Oh @azro3 I'm so very sad to read your news. I can understand how you are feeling absolutely devastated and understandable too need time to process this latest development. It's certainly time for the second opinion now and I'd agree Christie's would be a good start. You may want to consider a private opinion too along the lines of if money was no object, what treatment would you recommend?? You could approach the LOC in Harley St for this. Even if the recommended treatment is the same, at least it would give you confidence that you've explored every avenue available.

My heart goes out to you both. This is just so unfair.

Sending loads of love and all my very best wishes to you both

KarenπŸ’›πŸ’šπŸ’™β€οΈπŸ’œ

Gypsy

@azro3 , I just wanted to say, thinking of you both at this time of awful news. I too think that a second opinion is the way to go. Sending love and hope that they continue to make your dear wife comfortable with the pain relief at least. Love Gypsyxx

azro3

Thanks @Baxter2 and @Gypsy That's what I'm going to push for today. Am going to ask the Onc to forward the details to Christies and the LOC (am just going to check can get details over the phone as don't think wife could manage a trip to London easily in current state). I'm not expecting that we can turn things around anymore, but got to be worth a shot now, if just for piece of mind.
Have more radiotherapy scheduled today for her lungs - her breathing is still bad, we were both up all night.
Thanks again to everyone on here for all of your support.

Baxter2

@azro3

Oh no, it's such a rotten start to the day with no sleep! I really do feel for you both. I 100% agree with your plan of action today and as you say, even if it is for peace of mind that everything remotely possible is being done as oncologists opinions do differ.....sometimes by a lot!! Travelling to London isn't easy when you're unwell but would it be possible using the wheelchair and buses/taxi instead of underground? I had a London Onc for a year but moved to a Glasgow based one for ease of travelling.

'Leave no stone unturned' was my personal mantra and sounds like it's yours too. Let us know how you get on if you can.

Sending you both loads of love and gentle hugs

KarenπŸ’šπŸ’›πŸ’™β€οΈπŸ’œ

determinedjoan

Thinking of u both & sending love πŸ’—, hugs πŸ€— & healing, soothing vibes :x::x::x:

terri m

Thinking of you both..lots of strength to you.. πŸ’–πŸ˜˜:x::x::x:

azro3

Thanks @terri m , @determinedjoan, @Baxter2 and @Gypsy
My wife has had her radiotherapy this morning and they've checked her out again, which is good. She's still in a bit of discomfort, but the pain meds have been tweaked now. The docs think it will get worse during the radiotherapy due to the inflammation, but should then improve afterwards. It's been a very emotional couple of days, we were expecting bad news, but having it confirmed has really hit us both hard.

Made my wife laugh with my inept wheeling her around the hospital today @Baxter2 so I'm not sure if she'll trust me in London, but worth a go :)

Gypsy

Dear @azro3 . I'm so glad that you made her laugh- a little ray of sunshine amongst such hard news. :x::x::x:

Seymore

@azro3 I hope that you can arrange those second opinions, get as much information as you can and as you said to put your mind at rest. I hope you have been able to get some support this week to. Thinking of you both :x::x::x:

HH79

Hi @azro3 I’m so sorry for all you are both going through and truly hope things improve soon. Lots of love and healing to you both. :x::x:

azro3

Thanks @Gypsy , @Seymore , @HH79 . Hope all is going well with you all.

We had a nice day today, wife wasn't in too much discomfort and we did all of the emotional relaying of information to family and close friends yesterday. Repeating the same piece of bad news multiple times definitely helps it sink in a bit. Went to a men's cancer support group today, which was fascinating. Although it's sad to hear others' stories, it was nice to be around people who've had some similar experiences. Can be a bit isolating being younger than the expected age for this to strike (although not so rare according to BBC news). The rest of my siblings and friends seem to be popping kids out at the moment, so although it's lovely to see, its tricky to be the odd one out - hate having to do that kind of socialising stuff without my wife anyway :)

jj

@azro3
Sorry to hear the results of the scan. It tough, but like everyone has said, a second opinion is the way forward.
Glad both of you had a nice day yesterday and praying that each day gets better for both of you.
My heart goes out to both of you. Will continue to keep you both in my prayers
Regards

Lirio345

Good morning @azro3, just wanted to say I am thinking of you both and am glad you have found some support for yourself, take very good care, Kim :x::x:

Lizalou

Hi @azro3
Glad your wife is feeling more comfortable and well done to you for reaching out for the support you so obviously deserve.

Thinking of you both. :x::x:

Baxter2

Just wanted to add that you're both in my thoughts too @azro3

I truly hope you both have a reasonable weekend.

Lots of love

KarenπŸ’šπŸ’›πŸ’™β€οΈπŸ’œ

soph86

Hi @azro3 I’m so sorry to hear all this. As a 33 year old myself I totally understand the pain of seeing others around you having kids and enjoying life whilst things feel so unstable for you.
I hope some stability can be found soon but in the meantime do you know if there are any mutations involved?
:x:

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.