Stage 4 bowel cancer

Bronwyn

Delay treatment whilst you are well

Not been on site recently as trying to get my head around what is happening.

KRAS wild type with BRAF mutation so unsuitable for treatment with either Cetuximab or Panitumunab (eGFR inhibitors).
I asked about MSS/MSI and oncologist said MSI testing has not been performed because there is no licensed drug available for MSI high tumours in UK.
Do not have Lynch Syndrome.

From latest CT scan have two mets in lung, largest was 5mm in August, 20mm in November and 21mm in January. No visible change to thoracic and mesenteric lymphadenopathy and suspicious liver lesion remains the same. Surgery not an option due to mets in lymphatic system.

As having no real symptoms at the moment and mets appear slow growing I am not on any treatment as oncologist wants to wait until either I don’t feel as well or he detects a problem arising from CT scans and bloods. My next CT scan is scheduled for mid-April. Plan is to treat with Irinotecan with 5FU folinic which only has a 20% chance of working due to number of possible sites. Mitomycin has also been mentioned as a possible treatment.

I sort of get all this and have questioned the wait but It was explained that this is what palliative treatment is. I am 65 years old and very active, is this normal practice? Any comments gratefully received as this site is so knowledgeable and supportive. Thank you for reading my missive. :x::x:

HH79

@Bronwyn sorry to write quickly but I would urge a second opinion, sounds bonkers not be kicking off with a good strong chemo at BRAF eg Folfirinox or at least Folfox - defo Oxi. Pls do get second opinion :x::x:

rebecca1234

I’m also KRAS wild and BRAF, with liver metastasis and did have lung secondaries - following a 2nd opinion I’m up to my 9th cycle of folfoxiri and Avastin, and so far responding well. I’d echo @HH79 and urge you to go for a second opinion. My first oncologist basically started digging my grave!

Deemar

@Bronwyn While my husband is not BRAF - his oncologist is also holding back on returning to chemo . He has had Folfiri and Cetuximab previously which worked really well and got him to liver and bowel resection. Now he has a couple of recurrences in liver and lymph node but the oncologist is not treating them yet with chemo as husband is well enough in himself. We have every faith that this is appropriate and know he can start chemo again if things progress further. These decisions are very individual - so do seek a 2nd opinion if you don't feel happy. Good luck.

Surfer

My sympathies for all your issues. Yes do get a second opinion learn as much as you can so you ask the right questions. My feelings are don't hold back on the chemo. Oxyplatin has caused me neuropathy but you have to weigh it all up and try to keep positive. Best of luck. Surfer

Baxter2

Hi @Bronwyn

I'd echo what's been said and certainly challenge your oncologist in this decision to try to get a sense of what the rationale is here. (My first oncologist sounded just like yours @rebecca1234! 😜) please organise a second opinion ASAP!

Please keep us posted if you can?

Lots of love

Karen 💚💜💛❤️💙

cara

Just quickly read your post your oncologist I believe is wrong there are licenced drug for msi high in UK but only avaliable privately. Just incase this helps you in the future
I have no idea how much it would cost to go private for it if you don't have private cover sorry :x::x:

Lirio345

Good morning @Bronwyn, I just wanted to reinforce what others have said really; please consider a second opinion, - you deserve it. Take very good care and please stay in touch, Kim :x::x:

Bronwyn

Thank you for the advice I was wondering myself about second opinion - how do I go about this? Is it through my GP ? I presume I would have to have another CT scan due to data protection rules. Please advise :x::x:

rebecca1234

@Baxter2 they can be so charming can’t they! Lucky we refused to go down without a fight!
@Bronwyn you can ask your GP for another referral or you could go privately. I did a lot of digging myself and went private for an initial consultation, then my new and fantastic oncologist transferred me back to the NHS under his care. CT scans can be shared with your consent, you won’t need to keep repeating them - you can even request copies for yourself :x::x:

Lirio345

Hi @Bronwyn, if you wanted to say on here where abouts you live (broadly speaking), we can maybe point you towards some recommended hospitals/oncologists, take care, Kim :x::x:

Bronwyn

Thanks Liro I am currently NHS at Royal Berks Reading. I did have a private consultation at Spire Dunedin also in Reading but that was with the same oncologist as I had only seen registrar and needed clarification and also he had all my records. I am happy to go further afield. :x:

Lirio345

I might be tempted to consider The Royal Marsden then @Bronwyn, but see what other suggestions come up. If you don’t get many responses to this I would start a new post eg ‘Second opinion sought near Reading’ - you can still include a summary of your story with genetic status etc, but it might catch the eye ...., take care, Kim :x::x:

charleyb
Quote from @Lirio345:
I might be tempted to consider The Royal Marsden then @Bronwyn, but see what other suggestions come up. If you don’t get many responses to this I would start a new post eg ‘Second opinion sought near Reading’ - you can still include a summary of your story with genetic status etc, but it might catch the eye ...., take care, Kim

I too would recommend the royal marsden, we had a second opinion there and they were amazing. We chose at the time to keep our local oncologist but she had to follow the recommendations from the marsden, which she did. We now go to the London clinic and would happily recommend our oncologist there :x::x::x:

Bronwyn

Thanks charleyb what is the name of your oncologist please? :x:

charleyb
Quote from @Bronwyn:
Thanks charleyb what is the name of your oncologist please?

I’ll pm you :x::x:

Bronwyn

Thank youx