Stage 4 bowel cancer

m2

KRAS/NRAS/BRAF mutation - any known cure?

It is very disheartening & depressing that my GP told me, being realistic & not want to give me false hope when I enquired about 2nd opinion & private surgery/other therapies, that it is the end of the road medically, & I should focus on the quality of what is left of my life. 😭

I also just found out that I have the KRAS/NRAS/BRAF mutation which is very aggressive & currently no known approved cure (??). However I am still hoping for a miracle. I googled & found out that Dr Rosenberg in the USA has a breakthrough in immunotherapy for KRAS mutation, already done phase 1 trial & successfully cured a patient.
www.philly.com/...pancreatic-cancers.html?mobi=true
www.cancer.gov/...s/2016/immunotherapy-targets-kras

I am not sure how & what I have to do to try this immunotherapy, I am definitely not giving up without trying my very best even though I know there is always a chance that it won't work. Perhaps my body/immune system will now heal me on its own?? 😬 Wishful thinking...

It is extremely frustrating that I have to do & learn everything to save myself when the experts just want me to give up! 😤 Aren't they suppose to know more than me & save me?? 😒 Am I banging my head against the wall?!

Anyway, do you know what are the differences between KRAS/NRAS/BRAF mutation? Do I need to have different drugs to cure these different mutation?

david watt

Hi @m2 sorry you are in the position you are in.
The NHS will only offer surgery if your cancer is in one or two places and they think that they can cut it all out and cure you. Otherwise it will just grow back and they are under pressure not to spend money that will not cure people.
In regards to mutations, you either have BRAF or KRAS but usually never have both. KRAS and BRAF are aggressive fast growing cancer cells that dont respond to lots of the usual types of chemo treatments. They are like driver mutations which help the other cancer cells to grow and spread quickly. The trials you have read about in USA have cured a few people, but have long waiting lists with thousands of people trying to get onto them. The amercians go onto trials much quicker than in the UK and some people jump from one trial to another as soon as one stops working. The better the trial the longer the waiting list and the people running the trial will hand pick patients who have the best chance of recovery as it makes the trial drugs have better statistics.
Your only real option at this stage is to try any trial you can get onto which may have a low chance of working, or take lots of pain killers to make yourself comfortable and spend time with friends and family or go for a final holiday to switzerland.
For the purposes of a trial it would help if you knew which mutation you have etc.
Best wishes
David

m2

@david watt The letter I got from my GP stated I have KRAS/NRAS/BRAF mutation, I thought I have all 3!! All the technical terms are rather confusing, tried googling them but still can't understand. I will ask my oncologist next time I see him & enquire about more suitable trial drugs here in the UK. I am very reluctant to just give up without trying my best. Thank you for your comment.

WendySue

Hi @m2 I am sorry you have been left feeling so disheartened after discussion with GP. Is the GP refusing to support referral for second opinion or just advising it may not be helpful. I ask because there were some helpful suggestions regarding where you might go for second opinion on the other thread where you were asking for options. I note one post suggested Jamie Murphy and I am looking into this for myself. His interest is in experimental treatments so could be productive? I understand your wish to leave no stone unturned so I would go for independent second opinion.
:x::x:

HH79

Hi @m2 Avastin is good for BRAF quite a few of us with BRAF are having Avastin :x::x:

HH79

Ps or ask about Beacon 3 at Hammersmith that is for braf @m2 :x::x::x:

Chas

Hello @m2, I’m so sorry to read your posts. I can’t offer anything practical, but I can give my prayers that you find a treatment. God bless you and keep you safe. :x::x:

GD62

Hi @m2 reiterating so sorry to read your posts. I will like @Chas hope and pray you find a treatment plan or clinical trial that will help you.

Kindest regards :x:

eyeofthetiger

Hi @m2 So sorry that you have been given this prognosis and admire your hope and determination to find a treatment that may help. I have a KRAS mutation and have also read that Avastin may be effective but isnt normally offered under NHS. I have also been reading about high dosage Vitamin C may be effective in killing KRAS or BRAF mutations and that there may be trials out there. Have you heard of Oncologica who offer the Oncofocus test which tests your biopsy and identifying its genetic mutations and match it to treatments. The cost of the test is approx £1700 and the treatments that they may identify are often not offered by the NHS so would need to be privately funded. They also match you with world-wide clinical trials. I havent used this service but I think others on the forum have so maybe do a search on forum topics. Sending lots and lots of hope that you can find something that will help your situation.

Smu2

So sorry to read your message. I think its great to use everything you've got and what i see from you here is bags of determination! Certainly I don't see why 'accepting the situation' and 'pursuing every possibility' can't coexist. That's what we are doing. I'd definitely reiterate what others are saying- that pursuing a 2nd Opinion is a good idea, even if you learn nothing new a new person is bound to explain things in slightly different language and i have found that helpful-( but expensive) advice!

Your GP is not a specialist and in my experience likely won't have much of a clue about your specific timescale or prognosis etc. The best people i have spoken with say 'we can't say how long because we don't know'. That I find more helpful than those who say 'we are looking at days here' when actually it's not possible to be that specific.

If you want to pursue all options then go for it! you can request a second opinion yourself from specialists you find online privately if you can afford to do it (often between £250-£400 for initial consultation) just ring them and ask for their next available appointment and ask your Oncologist/Hospital for your records to be shared with either yourself or it is easier if the hospital shares your records directly with the person you are going to see for a second opinion (they have a joint system where it is easier to share images from your scans etc online. If you want the images of your own scans then you have to request those from the Access to Health department of your Hospital which can take up to 30 days). Alternatively ask your GP or Oncologist to write a referral for you on the NHS to the specialist you want to go see- may take a little longer but they should respect your wishes to seek a second opinion. They often seem to think you are going for a second opinion because you want to sue them, which is crazy. I've started to say 'if it was you what would you do?" and told them I understand the situation, i'm not trying to sue anyone, I just want to speak to relevant experts and it is my right to request that!

In terms of Oncologica testing, we just went for it, it is expensive and several Drs have been really sceptical of it but our Oncologist was supportive- thankfully. it shows you what drugs are ruled in or ruled our depending on your DNA mutations and what clinical trials are available. I would say that it is hard when a possible drug isn't available on the NHS but At least now we have more information to look at clinical trials. The Oncologica test lists clinical trials available in UK and EU but you can also search for these yourself using this link: www.clinicaltrialsregister.eu

There are also links to US based clinical trail registrations www.clinicaltrials.gov/

Its pretty complicated and its tough when you are not eligible or things are very far away frOm home - we certainly just limited it to those in the UK. It takes time but if feeling like you have learnt all there is to know about the specifics of your situation brings you peace of mind then you must do what feels right to you. That's what we have done and I hope some of the knowledge we've gathered these last few horrible weeks trying to deal with this might be of some use.

All the best of luck,

:x::x:

Bear G

Just tagging @nurses here as I feel their expert opinion could be very helpful
:x::x:

m2

Update/Conclusion from our meeting with the oncologist this morning - being considered for trial drug & potential surgery to correct the fistula, will know the doctors' decisions in the coming weeks.

Meanwhile I am trying my very best to heal my body on my own now that I have a better idea what I am dealing with. 😅 We saw the CT scan of where & how big the tumours are, enquired about private therapies & I do have all 3 KRAS, NRAS & BRAF mutations... lucky me! 😂

Since I have exhausted all 3 lines of chemotherapy with no shrinkage, there is currently no other drugs that will be effective when I asked about Avastin & Keytruda. Moreover, these will normally be given together with some of the chemotherapy I already had, chances of them working are near zero.

david watt

@m2 sorry each of those mutations are bad on their own, but to have all 3 of them is terrible, you are special, first person I have ever heard of in 2 years to have all 3 mutations. I hope you can find a miracle. Best wishes for the future 🔮 David