Mum has lung cancer stage 4 BRAF Tumour - The Roy Castle Lu...

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Mum has lung cancer stage 4 BRAF Tumour

Beetro84 profile image
14 Replies

Hello Everyone

My 84 year old Mum has just had a diagnosis of Lung Cancer Stage 4. It’s a BRAF tumour which is quite unusual. She has until now been fit and healthy walking and swimming regularly and has had only problems with her Thyroid. She has been told her prognosis is 3-6 months with treatment or up to two years with treatment. She’s been offered immunotherapy. I’m not sure what the pros and cons of immunotherapy are and how likely it is to be effective in slowing down the growth? Any advice or help would be greatly appreciated. Thank you

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14 Replies
Elt79 profile image
Elt79

Hi - sorry to here about your mum’s diagnosis. I can only tell you my own story, realising that we all react individually. I was diagnosed stage 4 NSCLC with adrenal and brain Mets (no mutation) in September 2018 with a very poor prognosis. I was treated with stereotactic radio surgery for my brain Mets and started immunotherapy (Pembrolizumab) in November - as you can see I’m still here! I had two years of immunotherapy so no treatment since November 2020. Lung and adrenal remain NED. My brain Mets have returned twice so have had SRS twice and currently awaiting possible further treatment. Side effects vary for everyone but mine have been mainly skin and allergy related and even though I’ve not been treated for 3 years they remain and new ones have surfaced but a small price to pay for the time I’ve been given. I turned 70 this year - never imagined I’d get that far! Can only wish your mum the very best in moving forward and as I said each individual has a different experience but mine has been very positive. x

Beetro84 profile image
Beetro84 in reply toElt79

Thank you for replying. It’s really appreciated and great you’re still here.

SharonTan profile image
SharonTan

Hi

So sorry to hear about your mum’s diagnosis, hope know what a shock it can be as my mum has stage 3 lung cancer, she was offered immunotherapy back in April & first scan showed her larger tumour had shrunk & smaller ones had gone, mum did not appear to have many side effects. However further down the line he thyroid & kidneys have been impacted she we cannot continue with immunotherapy, but I would still suggest it’s fab at keeping the cancer symptoms at bay & best first option if offered. We are awaiting another another scan to see how the immunotherapy has done. Good luck x

Beetro84 profile image
Beetro84 in reply toSharonTan

Thank you for replying. Mum is quite confused so she is having an MRI scan to see if it’s in her brain. Once we have an outcome we can help her make an informed decision.

Good to hear that immunotherapy has helped your Mum in the first instance.

SharonTan profile image
SharonTan in reply toBeetro84

I do hope they can help, I know how frightening it all is for you & your Mum, fingers crossed for some positive news for you x

Hi, I can only ,like Hlt 79 , tell you my story. I was 58 and diagnosed in Oct 2019 with stage 4 lung cancer that had metastasised into my bones. I was told 6 to 12 months without treatment, 15 to 36 if it worked. I was given 10 radiotherapy treatments and was also put on (pembrolizumab ) immunotherapy and I am still beening treated. I have had very few minor side effects. Best wishes to your mum whatever choice she makes.

Beetro84 profile image
Beetro84 in reply toWineWhiskeyandme

Thank you for sharing. All info/personal stories help us to form a picture 🙂

foodbankcupar profile image
foodbankcupar

I hope your mum progresses.I had immunotherapy for two years.Bevause of lung cancer was sussectable to Bronchitis and had that a few times. Tired after treatment at the begining.

In recession now.

Kevin

Beetro84 profile image
Beetro84 in reply tofoodbankcupar

Thank you . Glad you are in recession now .

RoyCastleHelpline profile image
RoyCastleHelplinePartnerAsk the NurseRoy Castle

Hello Beetro84

I am sorry to hear about your Mum’s diagnosis, this must be a very worrying time for you all. It is good that she has been fit and healthy up until now, as this will stand her in good stead for her cancer journey.

As you can see from the responses to your post, immunotherapy has had good effects on cancer for many people.

You might find this link to our information on Immunotherapy helpful roycastle.org/about-lung-ca...

Our patient information leaflet on immunotherapy is here roycastle.org/app/uploads/2...

Page 34 has a list of questions it might be helpful to ask your Mums medical team

Your Mum will be allocated a Lung Cancer Nurse Specialist and they are a great source of information and advice.

It’s also good to remember that support is available We have a range of support services, from one to one support to online support groups through zoom , if you are interested in any of these you can register through this link: roycastle.org/help-and-supp... Or by emailing Ellen.Knapp@roycastle.org

If there is anything you would like to discuss or to get further information, you or your Mum can email ask the nurse at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600.

Wishing your Mum all the best

The Roy Castle Support Team

Beetro84 profile image
Beetro84 in reply toRoyCastleHelpline

Thank you. That is really helpful. Its just such unchartered territory for us.

beetro84

Sorry about your Mums diagnosis - I am the same as some of the others here, stage 4 lung with mets to brain. I had cyberknife to the brain (radiotherapy) and immunotherapy along with chemo. I had 8 rounds and the tumour reduced by 85% - I haven’t had treatment for 3 years now and remain stable. I didn’t have side effects from treatment as such but I did develop colitis which is why I cane off of it! I call it liquid gold. I was just say if something doesn’t seem right on it then you must tell the team nothing is too small an issue but hopefully she won’t have any issues like some others here. Xx

Beetro84 profile image
Beetro84

Thank you for replying. It sounds like you have done incredibly well. Mum has an MRI next week so we will see what happens…

Beetro84 profile image
Beetro84

So, my Mums MRI showed no mets in her brain - the good news. The bad news is that she has found a breast lump so is being sent for a mammogram. Sadly her lung also continues to fill with fluid so she will be drained and have a tap fitted. Her treatments has also been confirmed as targeted therapy using dabrafenib and trametinib. Does anyone have any experience of what the side effects might be- the oncologist is giving a milder dose given my Mums age.

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