Mum diagnosed with stage 4 lung cancer - The fight is on!!

[juliepoolie01]

Hi all,

Well firstly i cant believe i am here but also very grateful to find this site. Its unbelievable how quickly your life can turn upside down in moments.

I also want to say keep going to everyone out there, its a horrible place to be and i feel for anyone gong through this.

My darling Mum has diagnosed with stage 4 cancer with leptomeningeal Mets. i google way to much and am devastated. However, after a lot of reading i am focusing on the success and survivor stories and the statistics for longer term survival.

A little background - Mum did not have any symptoms really - she had a little numbness in her leg which she went to the doctors about but apart from that was in great health - all still is. The only symptom was some slurred speech on the phone to me so i insisted she went to hospital - from there our world unravelled.

In 2 months there has not been any deterioration, which is a real plus. She starts chemo a week today with a combination of cisplatin and pemetrexed. Our focus has been to keep her positive (she really is, actually amazingly so) and keeping her fit and healthy. I moved her to a very healthy diet for cancer fighting foods ensuring its balanced and nutritious (i bought her scales so she can maintain weight) she is also juicing twice a day. she also supplementing with Curcumin, red grape seed extract, milk thistle, aloe vera, selenium, black seed oil, moringa powder and echinea. shes also shoting raw garlic and drinking 2 litres of water a day. exercise daily of a 40 minute swim or jog. She is maintaining excellent health and is determined to fight the whole way. She declined prognosis, we talked about it and decided she didn't need to hear life expectancy, we figured it was a guess at best and would dent the absolute positivity she has that she will survive years and years which is possible.

My personal aim has been to lengthen her odds as much as possible, research what helps, can help or might help and chuck everything at it. research what complications can arise and work out how to reduce them. Called out to friends and family which we are lucky to have for support and encouragement and learn as much about the disease as possible. Got her on cannabis oil as well which she is enjoying a little too much

My next task is to make sure she is getting the right treatment at the right time. i believe oncologists do the best they think but i don't believe its always for the best. I would hate my Mum to miss out on some real life saving treatment cause she has a stuck in the mud oncologist who plays it too safe or because a lack of equipment etc...

I hope your not to bored of the post and read to here...

The first treatment is chemo, does this sound right to everyone? he did mention radiation but not until he knows how the chemo is going to pan out. Im very worried about the brain thing, it has a devastating prognosis however, Mum does seem to have lived with it for months without it causing her any real issues and no real deterioration.

Im also curious on peoples ideas around supplements with chemo as well?

Thanks for reading and thank you for taking the time to reply of you do. i adore my Mum and cant imagine this world without her.

Julie xx

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Julie

Welcome to the forum and sorry to hear about your Mums illness and it sounds like you are taking very special care of her.

You are very motivated and are doing your optimum best , being positive is such a huge part as well as having as much support for both your Mum and the family.

If it is stage 4 lung cancer , surgery may not be an option depending on they type of cancer and Chemotherapy can be first line then perhaps, radiotherapy or immunotherapy, all this depends on the type of cancer cells.

Everyone responds differently to the chemotherapy, and once the course is finished scans will be repeated to assess or review a different treatment plan.

If your Mum does not have a lung cancer specialist nurse, you can request one from the Oncologist, as they are a great source of information and support.

We have lots of information on our website roycastle.org where you can order booklets online or cancer research UK have information on clinical trials that are currently on in the UK : cancerresearch.uk

In regards to supplements , it would be good to check with either the Oncologist or Chemotherapy team to make sure there will be no interactions with the medication.

There are lots of support out there, support groups, Maggies Centres and Macmillan Nurses, all can provide advice and what is available in your area.

Wishing you all the very best

If you wish to discuss anything we have a free nurse led helpline on 0800 358 7200

The Roy Castle Support Team

[juliepoolie01]

Hey all,

Just wanted to give a quick update!!

6 months in and Mum is doing great. The main tumour has shrunk and her lepto symptoms are slight and under control.

Mum is in great shape and enjoying life

Wishing everyone all the best on there journeys

Jules xx

[karenmarriott99 in reply to juliepoolie01]

Hi Julie, hope everything is okay with your mom now. I read your posts after clicking on your name after you commented on one of mine. I was wondering whether the healthy diet had worked for your mom along with the treatment and I also wanted to ask you about the cannabis oil. How do you take it and where can you get it from, I have heard a few people who have said that cannabis can help cancer patients. My mom has finished her chemo still waiting for consultation for radiotherapy but worried they won’t give it to her as she is quite poorly at the moment and I am worried.

Best wishes and I hope all is okay xx

Karen

[juliepoolie01]

Hey Karen, Mum is still doing pretty good, chemo warrior and my hero. Its difficult to say what has helped her if anything apart from chemo, we will never know.

What i will say is this. She shouldn't still be here. 6-7 months was best guess. She is still here 10 months on from diagnosis. goes for a run every morning, does pilates and goes swimming. she still has a performance status of 0 which is exceptional. Mum has coped with her regime incredibly well and is maintaining health and fitness.

i spent literally 100s of hours researching, diet to support chemo, what makes chemo more effective, how does cancer work, what environment does it thrive in, what shows promise in cancer treatment (curcumin is massive) what exercise and how much will keep her fit and oxygenate her body and help fight cancer etc.. I also found as many long term survivor stories as i could and pieced together a programme based on the above research and common threads in long term survivors. a few people always did exercise for the few days after chemo to get it pumped round (who knows of it helps but mum has had excellent break of blood brain barrier to keep lepto at bay) maybe thats why. Mum is also a very nutritious diet filled with juicing, organic produce and incredibly supplement heavy to help her body repair its self after each chemo attack. I should point out Mums regime was against oncologist advise as they didnt know what affect it would have on chemo etc. We made that decision for ourselves to go ahead with it, each person has to make their own individual choices regarding this.

I bought her scales immediately so she could keep an eye on her weight and forced her to eat sometimes so she could keep up her body weight - nutritious smoothies high in calories were consumed regularly. She kept up her weight during the real punishing part of treatment which is partly why she is so well now i believe.

In Japan they use medicinal mushrooms alongside chemo to make it more effective, i get her that too. CBD oil which is the legal part of cannabis is also part of her daily regime.

I could go on forever. At best everything we have done has helped extend her life (this year alone has been great for trips and parties and surprise birthday parties) maybe for the forseeable future. At worst it gave Mum a focus that she could fight back, that it was in her hands and she could actively do something to ensure she survived. I also encouraged mum not to read anything and not to get a prognosis - Im not sure she would have bounced back from it, i just read her a whole heap of long term survivor stories to focus on.

if youd like to chat more about anything in private ill get you my email address.

how is your mum now? i hope she is gaining in strength - what have you been told about it all? xxxxx

[karenmarriott99 in reply to juliepoolie01]

Thank you Julie for getting back to me and I’m sorry I have only just seen it. There wasn’t a notification so I came across your reply accidentally. I am really pleased to hear that your mom is doing so well and it may well be due to a combination of the chemo and the healthy regime that she has been following as well as the exercise. Who knows but I’m glad that she is doing really well. I think maybe my mom is older than yours, mine is 79 and she wasn’t really very fit before her diagnosis! Unfortunately her health is not too good at the moment after doing so well on the chemo. Her brother passed away in the summer and we thought that her symptoms were due to the shock of his passing, now I’m not so sure! She is very frail and is losing her balance and is also really tired . She has fallen over a few times too. We waited a long time for the radiotherapy referral to come through after the chemo finished I’m scared that it has grown again and had the chance to spread! I’m pleased to say that they have agreed to give it to her but it will be a reduced dosage over two weeks rather than 4 weeks as the specialist didn’t think she would tolerate the full dosage! She had her first treatment today. I wanted to ask you about the CBD oil as I have heard that there have been some good results on people who have used it, where you were able to Purchase it from and how it was administered as I would like to give it a go. Anything is worth a try! As I said I’m really pleased to hear how well your mom is doing. Fingers crossed and I hope that she continues to improve. If you want to contact me direct my email [e-mail] . Xxx