Decembeard

Stage 4 bowel cancer

Seashells

Back again already . . . looking for a second opinion

Hi all,

I only finished Folfox in June (clear scan) and then my CEA went from 18 to 120 so I pushed for an urgent CT. It doesn't look great. I now have at least nine nodules spread about both liver and lungs and am lined up to start Folfiri and Cetuximab ASAP. I'm happy that this is the best treatment I can be offered by the NHS but would just like to see someone else to find out if there are any other options. I contacted the London Oncology Clinic this evening and I know there are many on here who have been there, so I was wondering:

- is there anyone in particular you would recommend?
- is there anywhere else I should be considering?

I will be self funding this but think it is worth investigating all reasonable avenues, if only for the peace of mind. I have to do something and am feeling pretty miserable at the moment as you can imagine.

Thanks in advance for any advice. :x::x::x:

Polly 1

Hope all went OK on Friday @Seashells . All the best for your chemo treatment today :x::x:

DianeS

Hi @Seashells Dr Krell is lovely, and I’m pleased you are seeing him. Be prepared he is very handsome too 😁😁. Hope all went well for you on Friday. Love and best wishes Diane :x::x::x::x:

Seashells

Thanks @Polly 1 @DianeS

In spite of the lovely Dr running late and the shambles of a front desk sending the next patient in before me we did finally see him (not at the LOC). Reassuringly, he agreed that the new treatment which I'm due to start today is appropriate. Having read so much on here, I didn't expect anything else but it is very reassuring to have it confirmed by someone else. We also discussed what may happen next and the appropriate actions in each case. He is really easy to talk to and it helped to calm the constant "what ifs" I have going on in my head.

We also made the most of the beautiful weather in London with long walks around Regents Park, Wisley and Wimbledon Common and even saw my son score a couple of tries in a very entertaining rugby match. A great way to take my mind off having to re-start chemo and also promote really good nights sleep thanks to all the fresh air and sunshine.

Back to reality today - I'm feeling very positive that Folfiri+Cetux will do the trick.
:x:

Polly 1

Oh good to hear he was in agreement @Seashells and you had a lovely time in London. As you say back to reality today and I hope all goes to plan.

Not sure if you are 'in the chair' yet but hopefully soon Folfiri/Cetux will be on the attack. Maybe see you on Wednesday all being well :x:

Seashells

Back in the chair right now @Polly 1 - didn't get started until 12:15 and they'll be running the cetuximab in slowly as it is my first time so it will be a late finish today. Hope to see you Wednesday. :x:

determinedjoan

Thinking of u @ seashells & keeping all fingers & toes crossed 🤞 4 u. Love 💗 & hugs 🤗 :x:

Polly 1

Oh dear its a long enough day anyhow without a late start @Seashells 😔
At least you won't be hanging about waiting for the Cetux to arrive from pharmacy (hopefully) as it rarely arrives until after lunch anyhow. C used to have an atropine jab just before his Irinotecan but it depends how you react. Other units give it automatically I think.
I hope they are keeping you topped up with tea, bickies and sandwiches :x:

Seashells

Thank you so much @determinedjoan (I love that name :) )
All went well today @Polly 1 but I was last out at 5:45 - now just dealing with the late dexy - wide awake at midnight. 😕
Next cycle is an 8:30 am start - I really hope I won't have to wait around until after lunch for my Cetux. to arrive. :x:

Polly 1

Morning @Seashells I just picked the notification email up and said to C oh K posted at 3 mins past midnight and he replied that's the Dexys then! So he was right. I hope you got some sleep later. Make the most of that extra energy today 😁
Not too bad then I thought you would be later than that, they did well to catch up but what a long day for you. The latest we've been so far was 5pm which was bad enough.
We always have an 8.30 start. There's a bit of hanging round on a drip at the start but these days C gets his 1 hour magnesium infusion then. It means when the chemo starts to arrive about 10am you are all ready to go.
For a short time they 'bought in' pre made up Cetux so some cycles he even had it before the Irinotecan so with no hanging around we were finished by 2.45. Now they are back to making it up themselves its rarely ready before 2pm as the pharmacy gets all the other chemo out of the way before they start on the 'mabs'. The nurses are very unhappy that the patients have to wait for it to arrive but nothing they can do :x:

Baxter2

Great to see you've been able to have the reassurance you needed @Seashells!

Good luck with the Folfiri and Cetuximab! It's served me very well so far!

Lots of love

Karen💚💛💜💙❤️

Kate M

HI @ Seashells (lovely tag name - I can just hear the sea!) Have only just read your post so am a bit late responding. But, like you, I am back on chemo a lot sooner than hoped also on Folfiri although unfortunately I cannot have Cetuximab. Due to the problems I had when on Folfox, they started me on a low Folfiri dose - 50% then 75% now next (4th) cycle up to 80-85%. So far, not too bad, the worst I've had has been wind in my bowel which they tell me is because the chemo kills off the good bacteria, leaving the baddies to cause havoc. Have been recommended to take Yakult and peppermint oil capsules to help with that. Hope you're feeling more reassured about your treatment and am glad that you have a consultant you can talk to - so important. My new one is lovely. Glad, too, you were able to make the most of this beautiful weather - we went to Cresswell Crags in Derbyshire on Monday - simply stunning. Kate M :x::x:

DianeS

Good morning @Seashells so pleased you have had the reassurance from Dr Krell, he is a true gent and has a lovely manner about him, are you staying with him? I don’t go to the LOC now, and my insurance won’t cover my monitoring after March, so will be seeing him st another hospital. Just relieved I haven’t lost his care. Hope the chemo cycle goes well, love D :x::x::x::x:

Mistyalpine

@DianeS why dont you go to LOC anymore? Good to know you've still got Dr Krell backing you up though :x:

DianeS

Hi @Mistyalpine when I couldn’t see Justin anymore, I was recommended Dr Krell and he is st a hospital nearer to me in Watford, so it made life easier. How are you doing? :x::x::x::x:

Mistyalpine

@DianeS waiting for some biopsy results... Normal CEA and CA19-9, but some lymph nodes surrounding the windpipe lit up, so massive anxiety waiting... 29th will get results....The waiting anxiety is finishing me off...we all know that one..☹️

Seashells

Thanks @Baxter2 I read through your profile and others on similar treatment quite regularly just to reassure myself that this can work. Even though we are all different I take great strength from those who have walked this road before me and are still walking.

How are you finding Folfiri @Kate M ? I'm only on day 5 of my first cycle and I'm feeling fine but am expecting the cumulative effects to kick in after a couple more cycles.

I self funded my appointment with Dr Krell @DianeS mainly for reassurance. I decided to keep it entirely separate from my NHS care. If there are any further developments, I may go back to see him but I am planning to ask if I can change my oncologist locally - I just can't talk to the one I see. I was quite worried about asking but actually having a proper open conversation with a different oncologist made me realise how important that relationship is.

I also need to have an oncologist who accepts that even though CEA isn't necessarily a reliable marker for many of us, it really is reliable for me. Both times new mets appeared my CEA rose above 20 and then rapidly rose into the 200s within 3 months. Folfox brought it down nicely and now I'm hoping my new treatment will do the same. In the grand scheme of things, adding CEA to my pre-chemo blood test every other time isn't much to ask, I will be insisting from now on!

Best of luck with your results on the 29th @Mistyalpine
:x:

Polly 1

Glad to hear you are feeling OK so far @Seashells
Since August last year when C started Cetux CEA has been included in every blood test without us asking - so tested every two weeks automatically. As we are at the same chemo unit I expect they will for you as well.
I hope you manage to change Oncologist soon - he sounds like he needs re-training on how to deal with patients!

Nods

hi @Kate M, just on the point about gut bacteria, I take probiotic capsules - sugar free etc and easy to manage. Much of this education came from reading Chris Woollams books - he founded a charity and website call www.canceractive.com - ive found it really helpful

DianeS

I totally agree with you @Seashells to be able to get through this we really do need to have confidence in our oncologists, and be able to talk to them. I hope you find someone that you can relate to. Best of luck for 29th @Mistyalpine hope you get good news ♥️♥️ :x::x:

Kate M

Thanks @Seashells and @Nods. Just had cycle 4 Folfiri. So far so good. The Yakult and peppermint oil seem to be working - no real tummy problems yet just acid reflux which Gaviscon copes with. CEA blood test this week so will see what that shows up otherwise feeling really well. Kate :x::x: