Ruth: I was diagnosed last year with... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Ruth

Birchley1 profile image
11 Replies

I was diagnosed last year with lung cancer I had a right upper lobectomy and went through chemo

In December 16 my scan was 100% clear so was a time to celebrate x

Had a scan in march 2017 and it was back but in my main chest gland as you can imagine devastation on telling my family it was back !!

My oncologist told me 1 to 2 years which I refuse to accept

Went onto chemo again ( pemetrexed ) had radiotherapy and been told it's stable

I'm currently on pemetrexed every 3 weeks and apart from a few aches and pains very much getting on with it

Although I carry on deep down I'm gutted but still remain positive as my oncologist has said he would hope that the chemo would be long term and if it failed then I would go onto immunotherapy treatmentry

I have been following stories online about people who has used canabis oil with positive effects but also some negativity

Anybody else researched this treatment

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Birchley1
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11 Replies
RoyCastleHelpline profile image
RoyCastleHelplinePartnerAsk the NurseRoy Castle

Hello Birchley1, welcome to the forum, I am sorry to hear of your recent scan results, it is good that your oncologist is optimistic and is considering immunotherapy. I have added a very interseting link to the cancer research website it has lot of information and research into cannibas oil and its uses.

scienceblog.cancerresearchu...

If you would like to speak with someone please give us a call on our nurse led helpline freephone 0800 358 7200

Kind regards

Roy Castle Helpline

Bow-19 profile image
Bow-19

Just wondered if you had thought of posting on the American Inspire website? I have seen people post on there about cannabis oil and responses too. Hope this helps. Have you been tested for mutations? Best wishes Xx

Birchley1 profile image
Birchley1 in reply toBow-19

Thankyou for your kind response

I don't know about mutations but I will ask my oncologist

I have looked at alot of sites regarding cannabis oil and many have negative and positive responses

I think it's down to personal choice and I'm just not sure at the moment

I'm hoping like many that the chemo will both shrink and make things dissappear and life could be back to normal ( wishful thinking by so many ) so I'm waiting for a scan in 2 weeks to see if anything has changed

Best wishes to you xx

Bow-19 profile image
Bow-19 in reply toBirchley1

It’s worth asking if you have been tested for EGFR, ALK and other mutations. Roy Castle do a booklet about it Targeted Therapies I think it is called.

Wishing you all the best xx

Birchley1 profile image
Birchley1 in reply toBow-19

I will speak to my oncologist or my cancer nurse as I haven't heard of these x

But will ask the question

Thankyou so much for your response xx

hbj23 profile image
hbj23

Hi Ruth, I'm sooooo sorry to hear your cancer is back, that is truly devastating. I don't know much about canabis oil. But I have been reading a book by David R. Hamilton phd called How to Heal the Body with The Mind. He doesn't claim to cure any illness or disease, but what the book does do is, teach you how to apply Positive Mantal Attitude and Visualisation, based around the placebo effect. I know it's not easy, however, since my diagnosis of advanced lung cancer in Aug 17, i have been using this method (i'm also taking Crizotinib, a targeted therapy), I was told at the begining of my treatment, that if my 3 month scan showed no change, that was a positive. I've just had my 3 month scan, my primary has shrunk by up to 60% and 2 of the 4 lymph glands it spread to have also shrunk. Naturally i am delighted, but i think along with the tablets, a lot of it is to do with the positive mental attitude & visualisation techniques i have been using. I will be sending you lots of positive thoughts. xx

Birchley1 profile image
Birchley1 in reply tohbj23

I have allways been positive and try to just get on with life

It obviously plays on my mind alot and if I'm on a downer I talk with my wonderful partner and soon bounce back x

Another way I find if I'm low is to speak to my amazing grandchildren x even though they are only 4 through to 15 ( we have 6 ) they allways make me smile and nanny hugs means so much more now x

I will remain positive xx

Wishing you all the best xx

Bow-19 profile image
Bow-19 in reply tohbj23

If you are ALK positive do you know about the Facebook page?

hbj23 profile image
hbj23

Hello, Bow-19, No i didn't i will have a look at that.....Thank You xx

Bow-19 profile image
Bow-19 in reply tohbj23

It’s very good. it’s a private page which you have to join and introduce yourself. Everyone is ALK positive or a career or relative of someone who is. It’s worth joining and has over 700 people from around the world. If you can’t find the page please let me know x

Birchley1 profile image
Birchley1

Just a quick update

Just had my scan and had a positive response

My lymph nodes are no bigger

Some have shrank in size and my right lung has reinflated so feeling happy with the results

And after having some dizzy spells they did a brain scan incase of spread and that chas come back clear so over all best Christmas present ever

Will carry on being positive xx

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