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:

Seashells

Thanks @Sean I know it will work, I just want to get on with it now!
Apigenin looks interesting - I hadn't heard of it before. Did you ask your oncologist about it or just do it anyway? I've been taking a few supplements whilst I've been off chemo and they really helped - I look and feel better than I've done in years. So ironic eh?

Polly 1

Hi @Seashells dont forget to get lots of tubes of Pliazon from the chemo unit as well. It is provided free by the manufacturer of Cetuximab so no limit. The rep told them patients should be using 6 or 7 tubes a cycle I think. You can also use it with water for washing your skin.

I'm not sure if it would help if you start using it before you start chemo to be ready but you could ask when you get your line put in. Definately get some to take home on treatment day anyway.

Boots have Aveeno on offer at the moment. C uses the one with Shea butter. He also uses Vaseline, sudocrem, and (original) Nivea that we bought from the chemist/supermarket. He also got Diprobase cream and ointment prescribed by the GP and Zindaclin from the unit

Sean
Quote from @Seashells:
Thanks @Sean I know it will work, I just want to get on with it now!
Apigenin looks interesting - I hadn't heard of it before. Did you ask your oncologist about it or just do it anyway? I've been taking a few supplements whilst I've been off chemo and they really helped - I look and feel better than I've done in years. So ironic eh?

My team aren't really down with supplements (hadn't heard of apigenin šŸ˜Æ) but are fine with me taking most after a quick search. It's a natural flavanoid that looks to be incredibly promising.
I feel they've been a great benefit too me too!

Mistyalpine

Hi @Seashells i dont come one here often, but might be now ive had a scan showing changes in my lymph nodes near my windpipe...anyway, Im with Dr Kia Keen Shiu at the LOC... Hes running the keynote 177 international trial into Keytruda immunotherapy..i find him to be patient and extremely knowledgeable..

mem

Hi, @Seashells, I have no advice to offer but just wanted to say I hope your pending treatment seriously kicks some cancer butt!šŸ’ŖšŸ» :x::x:

Seashells

Thank you @mem
My PICC line is going in tomorrow and chemo starts on the 22nd
I've been trying to get a 2nd opinion from the LOC - they don't make it easy! I couldn't receive their encrypted e-mail so I had to resort to using a g-mail account and when I eventually did get their messages and uploaded a bunch of reports etc. they only seemed to receive half of them. Everything seems to be converted to a .SWITCH file which my laptop and virus checker doesn't seem to like at all. I just hope face to face communication is a bit easier!

Polly 1

All the best for tomorrow @Seashells I hope you manage a good deep relaxing bath tonight

Seashells

Thanks @Polly 1 @penjay1902 My PICC line went in fine (I was smiling all the way through thinking how terrified I felt having the first one just over a year ago and how totally relaxed I was this time). Chemo starts on Monday - YAY!

I've got my appointment in London on Friday - A BIG THANK YOU to everyone who responded. I'm not expecting him to recommend anything different but following the "leave no stone unturned" mantra I just have to check for myself. Thank you for your recommendation @Mistyalpine I will ask about Keytruda and anything else which he thinks worth investigating.

determinedjoan

V well done šŸ‘ u Seashells; all the best. :x:

Meezermum

@Seashells . Well done you . Just carry on being positive and my mantra is " the squeaky wheel gets most oil " so keep on squeaking !!!

Mistyalpine

Hi @Seashells have you asked to see Dr Shiu..or someone else there?

Seashells

Thanks @Meezermum I'll carry on squeeking :)
No @Mistyalpine I'm seeing Dr Daniel Krell - I'd already asked for him because he was recommended on here. Your post arrived after I'd spoken to them though TBH looking at all the staff profiles there are a few I'd have been happy with.
I just need to organise my long list of questions into some kind of order before Friday.
: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 Iā€™m pleased you are seeing him. Be prepared he is very handsome too šŸ˜šŸ˜. 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 šŸ¤ž 4 u. Love šŸ’— & hugs šŸ¤— :x:

Polly 1

Oh dear its a long enough day anyhow without a late start @Seashells šŸ˜”
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: