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Lung mets - please join in

Glo
Member

Re: Lung mets - please join in

I always feel left out when reading these forums, as not many people with lung mets seem to post!
I was diagnosed with lung mets from the start in Aug 2010. had a lumpectomy, followed by scans which discovered "multiple small nodules" in both lungs. So far have been treated with femara and the last two scans (october 2010 and December 2010) both showed a slight reduction.
My onc then wanted to leave me longer for the next scan because he said "it's like watching the hands of a clock move" because AIs work slowly. Am now anxiously awaiting my scan on 7/6/11 which will have been 6 months!
I feel absolutely fine (apart from mentally) and have no SEs. Long may it continue!!!!!!!

tillybob
Member

Re: Lung mets - please join in

Hi I have lung mets, still early days DX in Feb at same time as primary I am having 6 tax,with Carboplatin and Herceptin, Mx and full node clearance followed with Rads, staying on herceptin indefinatly and having Letrozole after chemo. I am pleased to see a thread for lung mets ,its good to hear how others are getting on with things.
JEAN

Lemongrove
Member

Re: Lung mets - please join in

I have posted a thread elsewhere, but am repeating my post here, because I thought it would be useful for those with lung mets (as the NRIG have particularly recommended SBRT for lung mets).

The National Radiotherapy Implementation Group have finally produced their recommendations to Commissioners and Clinicians regarding the commissioning, and use of SBRT (see link below). It is very worthwhile reading it, as it will be very useful for those who require funding for stereotactic radiotherapy such as Cyberknife or TomoTherapy.
Firstly, it makes clear that commissioning of SBRT should become the responsibility of the new Nationalised Commissioning Group (not GP commissioners).
Secondly, it recommends that SBRT is commissioned for the following cancers Lung Cancer ,Prostate Cancer ,Head & Neck cancer, Hepatic cancer ,Renal Cancer, Oligometastases, Spinal tumours, Pancreatic cancer.
Thirdly, it suggests the above list should be a minimum, not maximum list.
Fourth, it suggests that commissioners should offset the cost of SBRT, by the savings it can produce (e.g, SBRT can delay the point when chemo is required).
I am personally very pleased with this report, because it supports all the points I have been making in my numerous letters to commissioners and policy makers (as well as on this forum). Also, while Commissioners are not compelled to accept the recommendations, it makes it increasingly difficult for them to resist funding. This is not the end of the funding war, but it certainly is the beginning of the end.
http://ncat.nhs.uk/sites/default/files/NRIG%20SBRT.pdf

bertie
Member

Re: Lung mets - please join in

Hi everyhone,

I have lung mets, diagnosed in September 2009, treatment for primary was 2006, WLE, chemo and rads then tamoxifen. I am on letrozole now it has kept my lung mets stable. At the moment the consultants are considering cyberknife, I will know shortly if I will be having it. Great idea about this thread.

Love Marina x

Guest user
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Re: Lung mets - please join in

have had lung mets for 4 years and would be interested to know how everybody else is coping and what treatments your having.
LOVE Nicky

Guest user
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Re: Lung mets - please join in

Hi all I have lung mets to be a gd idea

Guest user
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Lung mets - please join in

Hi all

Can I start a designated thread for those with lung mets? I know I would find it very useful to have a designated thread where experiences can be shared, and advice sought. If you agree and also have lung mets can you check in here?

Thankyou