Second Opinion

I have asked for a 2nd opinion and referral to Royal Marsden and have my appointment on 4 April. Linda 

Thanks Linda, how did you go about selecting the consultant? I assume this is a face to face after your regular oncologist has provided all the background and latest scans etc?

I didn’t select the consultant myself O just got referred. I already started chemo elsewhere but am unhappy with them and have lost confidence. I believe it is a surgical consultant I am seeing but it will be my first appointment Linda x

I’m sorry to hear you have lost confidence in your team Linda. Hoping it can be restored. 
G xx

Appointment with Royal Marsden went very well and they will be taking over my treatment after my 4th chemo cycle for surgery. Mr Patel the consultant was lovely. Feel much better now Linda 

That’s good news confidence in the team that are treating you is everything ! Onwards and upwards xxx

Very pleased to hear you have some peace of mind Linda. Xx

Hi IPJ,

I sent you a friend request in hopes to send you a message. My dad is starting folfox and nivolumab on Tuesday and I was hoping to ask you some questions. Just wondering what you experienced in side effects and if you suggest anything we should get at home? Thanks xx

Hi, happy to help if I can. I have just had Folfox as I was not eligible for immunotherapy- your Dad should have better outlook than me based on what I have read.

The thing to remember is that there are as many permutations on side effects and effectiveness and there are people with cancer.

im 62 with no other health issues and reasonably active, not overweight (well not by much anyway!)

I started with a 50% dose then 75% then third and subsequent at 100%.

immediate symptoms for the first few days is extreme sensitivity to cold - this came in whilst I was having first treatment. Your Dad will have infusions in the chemo unit and will come away with a 72 hour pump.

touching anything in fridge or freezer will be uncomfortable- a buzzing electric shock feeling. This will subside after a few days but will pretty much be with him in the background during treatment.

it was difficult for me to go out when weather was colder - below 5 degrees. But it’s not a problem now things have warmed up.

i get hiccups day and night for around three days starting a couple of days after treatment- it’s not that common but really disturbs my sleep and rest.

appetite can fluctuate and will be affected to changes in taste buds - there are days where everything tastes like tuna late and wallpaper paste- you will need to find high calorie easy to eat food - I hit the M&S oats ready meals with extra cheese sauce 

fruit pastilles can cleans the pallets and reset taste buds - as does regular treat ha cleaning.

i do get waves of nausea but I have been given three different anti sickness which I take as and when - try and keep on top of it.

Chemo can have an effect on bowel movements either diarrhoea or constipation - it’s the latter for me - you should be given something like laxidose and a tablet for diarrhoea. I use laxidose assisted with some glycerol suppositories.

Tiredness and fatigue kicks in after the steroids finish this lasts a few days and comes with a low mood and I am not good company. By the middle weekend most of the side effects seem to diminish so the second week is better than the first.

The lining of my nose got very sore and produces enormous bloody bogeys - I found that using ordinary Vaseline in the end of a cotton bud really helped with this both morning and night.

i pushed to have a portocath fitted to replace the OICC line it makes treatment easier and you don’t have to have it serviced like a porcine - the mid treatment service does disrupt your free days. Mine was installed last week there is sometimes a long waiting list so the earlier you ask the better.

a positive mindset is key to getting the best of your treatment- I have a WhatsApp blog that I send to all my friends it stops all the individual messages that you feel obliged to respond to - I find it cathartic totals about it and share. I can send you a few as examples of this would be helpful.

i hope that my ramblings are useful information, please reach out if you have any specific questions 

all the best IPJ

Hello IPJ,

I am afraid I don't have any advice about  the helpfulness of a second opinion.

But I am writing because, my Mum  was also diagnosed with stage 4 oc  In November with spread to liver, unresectable. Also nearly at the end of chemo courses, with scan showing tumor shrinking. We are looking at treatment possibilities for after the chemo. 

If you get the second opinion at the Royal Marsden, would you be able to post or private message if it was helpful/ consultant etc? Many thanks