Advice On Living With Leukaemia

[J-Nevil]

Two years ago one of my best friends discovered that he has myeloid leukaemia. I say ‘has’ as he is still fighting and going strong. At the risk of sounding clichéd he is a true inspiration to his friends and family. To be perfectly honest, before Simon was diagnosed I had never given much thought to cancer, any kind of cancer.

Of course all that has changed, and changed for the better. All of his friends and family, including myself wanted to get involved to support Simon in any way that we could. Over the last couple of years we have run marathons (when some of us have never even run for a bus before), baked cakes and even a sponsored custard pie fight for charity as we realise that cancer charities as well as those living with cancer need support.

As his best friend, I felt that I needed to find out what advice other people battling blood cancer had to offer and also find out what the latest research was on the subject. I hope that by sharing what I have found out it will help to inspire others and I also welcome any advice from others in the Tenovus community.

I stumbled across a brilliant article by a guy called Jeff Tomczek. Jeff, originally from Wisconsin but who now lives in New York was diagnosed with blood cancer at the age of 27 years old. One year later Jeff had no trace of the disease in his body. Jeff believes in the importance of finding the right care provider and the right doctors and nurses. He said they need to be prepared to answer all your questions, be honest and available as well as make you feel important.

Acceptance of feeling scared is another aspect that he talks about ‘When you feel afraid let yourself lean on those around you. Cry. Be vulnerable. You are vulnerable. There will be time for strength, but never admitting weakness will cause anxiety to mount and your condition to worsen’

Distracting yourself mainly with sleep or music can help as reading and even watching TV can become difficult during chemo. He recommends eating and sleeping well to help your body deal with the side effects of the treatment and to boost your immune system.

He is also an advocate for massage and therapy to talk about how you feel emotions ‘You cannot afford to store up the intensity of the emotion that comes with fighting a life-threatening illness.’ A pretty inspirational guy, Jeff currently works as a freelance writer, offering consulting services to niche brands & entrepreneurs he is also aiming to open up an online men’s wellness community for young adults and a not-for-profit venture to assist cancer patients.

Approximately 30,000 people in the UK each year are diagnosed with blood cancers such as leukaemia, myeloma and lymphoma. On the research side of things, this year University of Birmingham scientists have been awarded £1.6 million by Leukaemia & Lymphoma Research to improve the effectiveness of stem cell transplants for patients with blood cancers. Stem cell transplants are offered to patients who have not responded to radiotherapy or chemotherapy and they could provide a cure. The scientists are studying the immune responses of the ‘graft-versus-leukaemia’ effect and how they are generated as this is of ultimate importance for a successful graft. The project will focus on reducing side-effects of transplants by improving donor-patient genetic matching.

I hope that more research develops and more and more people can be totally cured from their blood cancer and indeed any form of cancer. If anyone can point me in the direction of any cutting edge research happening right now I would be really grateful. Also, any more advice (especially on nutrition as that is what I am starting to research) would also be very welcome.

Resources

huffingtonpost.com/jeff-tom...

leukaemialymphomaresearch.o...

[Zarathrustra]

My advice is on my blog: bladdercancerfight.blogspot... and bladdercancerfight.blogspot...

I don't think there's any quick fix (which you probably know by now). But the following steps are a good start:

cut out sugar, alcohol, fast carbs (well, actually, best all carbs - pasta, potatoes, bread, cakes)

Reduce/zero processed meat, red meat, fish (being a veggie is probably best)

Lots of green veggies every day, especially broccoli, Brussels sprouts, etc; and colourful veggies too

Some fruit daily, especially berries

Do a juicing daily (handful of broccoli, of cauliflower, a carrot, a ring of pineapple, 2 Brussels sprouts, a beetroot, 2 radishes, half-an-apple).

I hope that helps.

[J-Nevil in reply to Zarathrustra]

Hi,

There definitely is no quick fix that really treats the root of the problem. Medication is for managing symptoms, and it's a complex condition so much of the treatment needs to be focussed on getting to the root causes.

I like how you talk about diet. It's a very obvious things, but many people offering advice on depression will simply talk about medication or give some not particularly useful advice like "Go for a walk". It's a simple fact, put healthy things in your body and you will feel better both physically and mentally. I agree with most of what you say about cutting out sugar or sugar substitutes. However I think carbs in things like pasta, potatoes and bread can be part of a healthy diet - especially if you exercise (which is also important for physical and mental health).

As for meat and fish, I think fish in moderation is perfectly healthy and can actually be very healthy particularly with fish like salmon. As for red meat, I agree that it can be unhealthy. However, lean game meats like deer or venison are very low in fat can be an excellent source of protein.

As for the veggies, I totally agree - you can never have enough (just make sure you mix them up from time to time, having the same thing everyday is not a good idea). I'm surprised you didn't mention exercise, as it is one of the most important aspects of mental health in my opinion. It's a natural reward system that is built up within our bodies so to me it's just silly not to take advantage of it.

Thanks for your contribution, your blog looks great!

[Zarathrustra]

Oops. You are correct - I should have mentioned exercise, probably the most important thing a patient can do, other than not smoking.

As to fast carbs, meat and fish, we'll just have to agree to disagree; but less is best. Protein is in all whole food (that is, incl. veggies). Fat per se is not a problem, only the type of fat.

I missed out ginger from my juicing formula.

Best of luck, Z

[MagsK]

Useful info! My husband aged 75 has recently moved from MDS diagnosis 6 months ago to AML. We have been offered the opportunity to go on a trial. But we are loathe for him to spend more time with hospital visits than quality time living life! They can offer nothing more than the trial. The Azacitidine did nothing. We are just looking for maintenance of quality of life. Any thoughts? He has already lost 3 stone in weight and will not try any kind of extreme diet.