My mum's cancer story

[xysia]

I'm new to this website and I only posted the blog below on the lung cancer blog site a few days ago but it's a quiet board! There is lots of activity here on the ovary board so I hope no one minds me posting it here. I'm just looking for more comments on my mum's story.

Also, I did notice that 'plum' had posted something on 20th June 2012 about his wife having ovarian cancer and taking curcumin with her chemo................read on.

Can I describe my mum as lucky I wonder? Anyway, here is her story. Mum truly is a lovely lady. Full of life and zest for her family and friends, she always makes people laugh. The lung cancer diagnosis came as a total shock to us - mum is only 58 and even though she’d been a smoker since her teens had never had a sick day in her life.

Crash, wallop: it all began in June 2012. Mum displayed worrying symptoms. However, the coughing up of blood, a nagging cough and pain under the right shoulder blade did not arouse the suspicions of the family GP. Amazingly, he did not think a lot of these worrying symptoms and instead sent her packing with steroids and antibiotics. So much for experts and value for the tax payer.

Within the next fortnight her condition worsened gradually and sis took her to the hospital. Within an hour of admission they could tell it was lung cancer. Within a week they had the full diagnosis: small cell lung carcinoma (T3N3M1b) – 6cm primary in the upper right lung, EXTENSIVE spread to the liver, further metastases to the lymph nodes in the neck and to three distinct places in the spine. To top it all she also had a collapsed right lung, pneumonia of the right lung and a twisted oesophagus (she could hardly breath and was on oxygen). She really is very lucky to be alive. In reference to the cancer, the big cheese at the hospital told us “this is extensive disease”.................”without treatment, she has weeks...............”.

Very quickly though, she became so poorly and they told us in the consultation room “get the family in, your mum will not last the weekend”. We believed the docs. However, ten weeks later she’s here and has responded amazingly well.

Due to the extensive nature of the disease mum’s cancer is obviously inoperable. However, as small cell is potentially treatable they offered her chemotherapy. They CONTINUALLY said “you don’t have to take the chemo”......... “we will keep you comfortable” and “in any case, there’s a good chance the chemo will kill you”. Mum is a true fighter and chose to take the chemo. She was prescribed etoposide and cisplatin. She has been through 5 chemo cycles now and has responded very well. The primary in the lung is down to 3cm and the liver tumours have regressed (as evidenced by improved liver function). There is also no evidence of the spine tumours (she can write again!) and visually she no longer has swollen nodes in her neck. She also no longer has a collapsed lung, pneumonia or a twisted oesophagus!!!! To top it all we have her home and we’ve made her comfortable.

Whilst in the hospital they gave her a tonne of steroids to take and this has destroyed her upper leg muscles.....................however, she is now off the steroids and the muscles are growing back!! She will hopefully not require her zimmer frame much longer.

All that I have written above is factually correct. What I have omitted to say thus far is that I gave mum 4 grams of curcumin per day throughout this whole process. Curcumin is an extract of turmeric (used in Indian cooking).

The reason I got interested in curcumin and convinced mum to take it is that I had read some anti-cancer articles on it in the past. Check out this video clip from Prof Steward from the University of Leicester. He is conducting a clinical trial using it and he says he has found it to be powerfully anti-cancerous when combined with chemotherapy (though he doesn’t say which)

bbc.co.uk/news/uk-england-l...

Below is a paper explaining what they think curcumin might be doing against small cell lung carcinoma. It is hardcore for the non-informed (I have a phd in molecular biology) but I have read it a couple of times and the science and methodology appears to stand up: ncbi.nlm.nih.gov/pubmed/226...

Here is another article specifically on curcumin and head and neck cancer:

ncbi.nlm.nih.gov/pubmed/225...

In fact, if you check out pumbed there are hundreds of studies on curcumin with different cancer cell lines in the laboratory.....................however, crucially, we are currently lacking a proper clinical trial to see if this stuff actually works!!

Recently, I made the decision to get mother to take another compound – this time from green tea (abbreviated EGCG). An example of this combination is found here ncbi.nlm.nih.gov/pubmed/223... The following also describes inhibition of cancer cell growth and spread using two different cancer cell lines in the lab ncbi.nlm.nih.gov/pubmed/222...

Here's another snippet from Glasgow Uni on green tea eurekalert.org/pub_rele...

The ‘combination therapy’ of these two compounds is interesting – particularly if they do actually have an effect (!!) and assuming they are active in the presence of cisplatin and etoposide.

We had a meeting last week with mum’s consultant to discuss the way ‘forward’. She was a right misery guts about mum’s prognosis (though she wouldn’t actually state one). She said she’ll only prescribe mum one more cycle of chemotherapy (to take it up to 6) and then there will be no more. The rationale for this is she thinks mum should have some ‘quality time’ without chemotherapy and steroids in her body. Apparently, mum’s blood counts are down and they will inflict too much damage by giving her more chemo. Potentially killing her they warn, an ironic assertion based on her diagnosis!

I also emailed the consultant about mum taking curcumin – that was a waste of time as she never replied.

Hhhhhhhhhhhhmmmmmmmmmmmmmmmmmm.

I will stop there. I am keen to hear if anyone has any comments on what i’ve written. Particularly mum making so much progress, the use of curcumin and the fact her consultant will give no more chemo past 6 cycles of etoposide and cisplatin.

I should finally add I am not advocating anyone take curcumin but this is mum's story. The placebo affect could be at work here and several of my friends said they would pray for mum, so maybe that's what has done the trick. You make your own mind up, do your own research and everyone is different etc, etc.

All the best!

Xysia. If anyone needs to private me my email address is [e-mail]

[Anne-2]

Hi!

Although I cannot comment on the chemo and your use of natural remedies, I was interested to note how the GP missed the symptoms.

My son-in-law lost his Mum to lung cancer and they took two months to diagnose it- she to was a heavy smoker, and then gave her no treatment except palliative at the end. The

diagnosis was in April and by July she had died. I am wondering now if there really was nothing they could have done or attempted. Peter was only 30 at the time and was devastated and I think is still coming to terms with it four years on.

I'm so glad to hear your Mum is a fighter and she has the support of her family.

Best wishes

Anne

PS Just remembered I drank a lot of green tea last year through reading something on this website- it was sencha green tea but unfortunately have not been able to find it recently in the shop I bought it from.

[xysia in reply to Anne-2]

Hey Anne-2,

I feel for your son-in-law and his loss. It's awful when the medics misdiagnose people.

I am angry with the GP - but I guess once most folk's symptoms appear it is often too late. Mind you they always also say time is of the essence.

Apparently to get any benefit from green tea you'd have to drink close to a paddling pools worth each day or so. The active compound is EGCG which you can buy in an extracted form as capsules.

Make sure you give Peter a big hug at Christmas.

Xysia.

[Whippit in reply to Anne-2]

Dear Anne

I also drank Sencha Tea last year. It was one of the tastes I enjoyed throughout chemotherapy. I was told the tea plantations were destroyed in the Japanese Earthquake disaster and it will take years to restore the plantations.

I did find some in France in a specialist tea shop. I'm assuming it was old stock but it tastes OK.

xx Annie

[blue100]

Xysia, thank you for sharing your Mum's story with us. I'm sure I've read somewhere that some of the chemotherapy drugs given for lung cancer are also used for Ovarian cancer. So that is something these 2 cancers have in common. It sounds like your Mum has responded beyond expectation to the chemo and that is very positive

I will send you a private message too.

All the best

Sue

[xysia in reply to blue100]

Hey Sue,

I have your private email and will respond soon. Thanks for your kind message!

Xysia