Advice please

[Shirlbird]

I was diagnosed with lung cancer last spring. There are also two secondaries. I have had 10 chemo sessions. Decided to give up for a bit because of side effects. Anyone tried alternative medication? I wonder about apricot kernels. The hospital will continue to monitor me with scans. Just looking for a bit of advice please. Never had any pain or indeed symptoms - it was discovered coincidentally! Went from OK healthwise woman to poorly woman overnight!

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi,

Cancer Research UK and the American Institute for cancer research suggest people should reduce the amount of meat in their diet.Although the content is aimed at prevention of cancer it may be of interest.

cancerresearchuk.org/get-in...

pcrm.org/news/blog/reduce-c...

In respect of apricot kernals, the attached link to the British Medical Journal illustrates the harmful long term chronic dosing of complementary medicines can result in harmful toxic effects.

Although the content of the link below is in regard to Apricot kernal extract,it is nevertheless interesting.

casereports.bmj.com/content...

Kind regards,

All the team at the Roy Castle helpline

[Shirlbird in reply to RoyCastleHelpline]

Thank you for your helpful advice. Shirlbird x

[Jiving1]

Hi Shirlbird, I ate 5/7 apricot kernels every day for about a year, I believe they halted the cancer in my nodes, oncologists, doctors etc etc will not advise on anything alternative, I also grew my own wheat grass & juiced it, not a great taste however I believed it did me good .Diagnosed 2011 nsc top right, had lobectomy to right, told i had no more cancer however 7 months later it was in my lymph nodes behind right clavicle & in esophagus area needed chemo 4 session but was given 18 months , the chemo reduced tumors, so just have to live with them. I'm still here. I also drank hot water with lemon in it. Look up in Google Tibetan Milk Mushroom / cancer. I took this religiously for a year.

All the best Jiving1 x

[Shirlbird in reply to Jiving1]

Dear Jiving1 Your advice is really helpful to me. Why did you give up on the apricot kernels? You seem to have done very well despite the prognosis. My oncologist does not give life expectancies!! Keep going! Shirlbird x

[Jiving1 in reply to Shirlbird]

I took them for a year along with the other things, so as the tumors had reduced I gave up kernels & ate more fruit & veg, gVe up red meat, eat chicken x x

[Shirlbird in reply to Jiving1]

I shall do the same as you. Thank you Shirlbird x

[DMR1]

Good morning Shirlbird

As a fellow member of our club, I was diagnosed in July 2018, I was amazed the NHS did not provide any suggestions as to changing or adding to one’s diet. So I went had to find out on my own.

I took all the normal medications during my combined radiotherapy/ chemotherapy sessions

I also take various vitamins (some only during treatment) drink dandelion root tea, have flax seed and whey on my porridge, bought a special water filter for drinking, eat walnuts in my daily salads etc.

The apricot kernels have been suggested but I decided against it as they tasted awful.

Unfortunately, Shirlbird, one can never tell what really works and what does not!

It is a combination of everything - I find that the most important thing to do is to remain positive. Mind over matter. I try not to think about my condition - really. Love as normal life as you possibly can. I didn’t tell very many people that I had lung cancer so those people who don’t know, treat me as if I am just getting a bit older and get out of breath v quickly!

I hope this helps you win a long life

Live for the day Shirlbird x

[Shirlbird in reply to DMR1]

Dear DMRI I think you have hit the nail on the head that one can never tell what works but I am thinking if I am not on chemo any longer and taking apricot kernels and a scan shows the tumours have receded then one has to conclude that the kernels had something to do with it - n'est pas? I shall go down this route for a while. I live in the country too and I do walk the dogs but I must admit not that far although I could manage further if I put my mind to it!! Many thanks for your thoughtful input to this discussion. Shirlbird x

[DMR1 in reply to Shirlbird]

Apricot kernels. As I said Shirlbird, you cannot say they really did help - like me, I cannot day that everything I did helped the tumours go away. They may have done so I continue with them. Maintaining a healthy diet I believe is very important - I gave up stuff and lost 10 kgs so I am back on full dairy etc

My greatest asset is having a positive mind. I just get on with my life and enjoy every day.

Keep well. Keep walking your dogs! 😄

[Shirlbird in reply to DMR1]

Yes DMRI I will keep walking te dogs! Shirlbird x

[DMR1 in reply to Shirlbird]

Mui bien!

[DMR1]

PS. I also eat pumpkin seeds and loads of blueberries.

I also bought a trampoline and try and use it every day - not only does it exercise every muscle in your body, it also helps with keeping your lymph system active - I also had a tumour in a lymph node in my chest so keeping the system active is important.

X

[rottenrunner]

hi Shirlbird

I went vegan after being told I had lung cancer, then it was upgraded to terminal diagnosis, I had palliative chemo and 5 months later my cancer was dormant, despite being given an average of a year, I had that diagnosis just over a year ago, I'm currently having radiotherapy on my lower rib, as they found some cancer there which seems to be a bit that the chemo missed so not worried about it. I also took cbd oil, and was always 100 % positive, I don't know which thing I took or changed helped, but put it down to a bit of everything, 'cancer is not a death sentence' is a blog by a woman who refused chemo or any drugs and shes doing well and helping people who want to take that route, certainly worth looking at, I put my faith in the doctors but also changed my diet to vegan, I've also cut out refined sugar, no biscuits, chocolate or cake, surprisingly I don't miss them and I loved them, that was after reading 'cancer is not a death sentence' good luck with your treatment whatever you choose and check out the 'Follow My Lead' campaign, some great stories on there, mines David's story, wishingyou all the best take care 😊👍

[Shirlbird in reply to rottenrunner]

Wow rottenrunner - that is quite some story. You must feel very pleased with yourself to have positive results from your 'alternative' efforts. Are you keeping your weight up? I will definitely read your follow my lead entry. Good luck for the future and keep on with your alternatives Shirlbird x

[rottenrunner in reply to Shirlbird]

I lost weight when having chemo but was back to normal just after I finished chemo, I only lost 6-9 pounds in total and I'm now a bit heavier, but trying to loose a bit, thank you and good luck to you, a bit of everything helps xx

[DMR1]

PPS. If possible you should walk as far as you can every day. I manage about 35 minutes. Any gradient is a struggle but I persist. I love in the country so looking around me as I walk makes me appreciate what I have.

[DMR1]

Do you think it would be interesting to see what treatment we all received, compare and see what the results were.?

If we all have NSCLC does that mean we might all have a different diagnosis with different treatments? I have no idea.

Some people are able to have operations to remove the whole, or part of the lung - does this help? If you are in that group, would your treatment then differ from the group that cannot have an operation?

Does treatment differ dependent upon at what stage your cancer was discovered?

I believe my cancer was Stage 2 NSCLC - due to a number of factors, it was decided against operating; I was to have what they termed “aggressive therapy”, a combination of chemo and radiotherapy at the same time. Radiotherapy was given to me for 33 days and I had two sessions of chemo. What drugs was I given? What really surprised me was the fact that one of my chemotherapy drugs was developed in the NINETEENTH century - 1845 to be precise! I was shocked - surely after all the funding on research a more modern, more effective drug would have been developed!? In addition to cisplatin my one other drug was vinorelbine.

Without going through the trials and tribulations of the treatment, the end result was my tumours have disappeared. That is not to say that cancer cells have been eliminated as they are pesky critters and tend to survive in extraordinary ways. But so far so good.

My only negative is that I get very breathless - I guess a small price to pay.

Having written this to you, I am thinking I should start a new post?

I will do both!

Bon nuit x

[Shirlbird in reply to DMR1]

It is an interesting idea DMRI but I wonder if we have enough knowledge of the various treatments to reach a useful conclusion? I was told an operation on the lung was not an option because I had tumours in other places. I am sure treatment does differ according to how advanced the cancer is when diagnosed. I think they go for 'tried and tested' treatments. Not sure how up to date these might be! I suppose other people with lung cancer are reading this so perhaps we should wait and see if there is any further input for your suggestion? Shirlbrd x

[JanetteR57]

I read the book 'Anti cancer - a new way of life' and although 7 or so years old, the information in there about a holistic approach to life in terms of diet, sleep, support network, work/life balance, keeping active apply generically to many cancers and are only now being acknowledged (the Glasgow inflammation index score mentioned in it is now being included in some clinical trials. The chapter on complementary treatments in Dr Rob Buckman's book 'Cancer is a word not a sentence' is very useful too. At last week's NCRI conference in Glasgow there were several sessions acknowledging the impact of diet as well as potential harm/interaction of complementary treatments with conventional treatments so always tell your clinicians if you are taking supplements or faddy diets. Beta caratone is linked to increase in LC but unsure how much you'd need but specifically supplements rather than just eating carrots. Obesity is not linked to lung cancer unlike several other cancers but the main known contributor is tobacco although finally air quality is being talked about in the UK (Europe working hard on researching this ) The talks were given by the World Cancer Research Fund/American Institute for Cancer Research report author ' diet, nutrition, physical activity and cancer : a global perspective ' a summary of the third expert report. Recent treatments (in the last 4-5 years) treat lung cancers differently - even within non small cell lung cancer there are several different types - adenocarcinoma, squamous, large cell - then there is small cell, mesothelioma and the rarer neuroendocrine tumours/carcinoids. Some tumours have more than one type of cancer cell within them. Within each type, cells can be quite different and the tumour burden/genomic signature completely different which is why there are so many agents in standard use for certain markers (EGFR, ALK, ROS1) and now immunotherapy for those who qualify for a certain level of protein expression in the cells of PDL1. These are not the only ones - yesterday I toured the Birmingham (UK) cancer labs and saw the many tests being done on pathology samples of their stratified medicine programme for lung (TracerX and Lung Matrix) - one of the largest in Europe and amazed at the scale/size of differentiation. Even when surgery isn't an option, (keyhole has overtaken open surgery for lung cancer in 2018) the use of SABR (ablation/cyber knife) a type of radiotherapy has proven very effective for many patients, and the combinations of radiotherapy,, chemotherapy and targeted therapies or immunotherapy are frequently given in different orders, timings to suit the specific biology/needs of the patient. This is why it's so important to discuss everything with your clinician who should be working as part of a multi disciplinary team and using your own results. It's certainly not a one size fits all approach as so much can vary and that's before they start with age, any lung damage (COPD, tobacco/asbestos/radon or other substance exposure), any other conditions the patient has and how breathless/fit they may be beforehand. If it's any consolation, half my left lung was removed in Dec 2010 (before any of these new treatments as only tested for EGFR but did not have that mutation) - no chemo/radiation - tumour was 7cm (stage 2b now reclassified as stage 3 but a rare type most common in South Asian never smoking women - I'm English!) I was back at work within a few months and went onto recover lung function beyond my previous fitness levels (which were quite high anyway for my age) by keeping active, increasing my distance swimming and probably a combination of things. good luck all.

[Shirlbird in reply to JanetteR57]

Thank you so much for all that detailed information Janette, I come under the Beatson team and it would seem they are pretty clued up on what must be a very complicated subject. There are obviously so many variables and each individual's cancer is different. I can see that treatment varies according to age, general health , plus other things. I suppose I am of the opinion that doing something is better than doing nothing which is why I am interested in alternative remedies as I am not receiving any treatment at present (by my choice).

I do hope all lung cancer sufferers read your reply because you are obviously knowledgeable. Most of us are just picking up bits of information as we go on!! Regards. Shirlbird x

[JanetteR57 in reply to Shirlbird]

Thanks for your kind comments - it is a subject I knew nothing about until my own diagnosis and experience. Losing a friend to it whilst recovering from surgery made me explore the internet which was terrifying and I was disgusted how little research was done into lung cancer at that time (less than 5% of all research) so I started commenting on Roy Castle literature panel and raising funds for them which resulted in an invitation to their conference. There I met a stage iv LC patient and cancer nurse specialist who urged me to get involved especially as I had a role within the NHS where I might have some influence . Little did I know how immersed I would become in this brutal fascinating and previously unknown world. One thing I've been involved with in my career is effective communication and it's a subject I'm passionate about in healthcare where people seem to talk in code or even another language from the everyday terms we understand. This has nothing to do with education, class, background, nationality, deprivation but everything to do with using plain language or illustrations to suit the target audience. I started at the NCRI lung group as a patient advocate at the same time as another 'consumer member' who had been involved in research for many years at the Beatson - she joined the supportive care and psychosocial group - and is involved in a cancer nutrition project there alongside the work done at the University of Southampton/Macmillan. I've met several clinicians from there as well as patients and would agree with your view about it being a good centre. I pick up information from conferences and workshops I attend, read up on specifics and speak with clinicians on the committees. I've met patients doing similar roles and in clinic and been so heartened by their stories and survival strategies that I'd love to shout from the rooftops how much effort is being invested now by so many dedicated researchers, scientists and medics as well as the great tips that many of us have learned from lived experience. Initially I found reading books that I now suggest to others helped me as I didn't want to talk to others - needed to digest/process it myself in my own way but involvement in such groups has helped me appreciate that a lot of things we might struggle with and feel very alone are actually commonly experienced and others may have found some way to cope whether for hours, days, months or years. Always good to hear these.... Helping others (if it does) certainly helps me rationalise my diagnosis into believing 'maybe it happened for a reason'... good luck with your approach.

[Shirlbird in reply to JanetteR57]

Janette - I am overwhelmed by your involvement and I do agree that plain language should be used s that we lay people do not feel the whole subject is beyond us. I do hope we can k eep in touch. All best wishes. Shirlbird

[DMR1 in reply to Shirlbird]

Wow. What an amazing person you are JR57. Thank you for your invaluable inputs. It immediately got me thinking we should try and meet up as a group one day. We could all learn so much from each other plus it might prove invaluable to those who are finding it difficult to cope

Providing we are fit to travel I would love to try 😄

[Kalilou2]

I’ve heard garlic and turmeric are really good but I take canabis oil and have done since I was diagnosed last Dec but not through the chemo xx

[Shirlbird in reply to Kalilou2]

Thank you for that. Have you got a reliable source?

[Kalilou2 in reply to Shirlbird]

My friend gets mine but if you go on FB there’s some help with cbd advice

CBDCONSUMERGROUP UK/EU x

[Shirlbird in reply to Kalilou2]

I will look at the facebook ink thank you

[Kalilou2]

That’s what happened to me went into hospital with a suspected clot came out stage 3b lung cancer xx