Lung primary bone secondary

[Linny_babes]

Please can some1 help or advise. Had devastating news that after diagnosis in Feb of primary lung cancer & bone cancer my partner was told today that to weak for chemo or trials! She was a very fit active non smoker. Just wanna know what I can do at any expense to give some hope???

[deelite11]

Obviously I don't not know the ins and outs, but I think I would definitely be asking for a second opinion. Where are you based? If possible I would ask to be referred to a specialist hospital like the Royal Marsden or similar in your area. All the luck in the world to you. This is a horrible disease but I have found so much help out there x

[Linny_babes in reply to deelite11]

Hi we are in Manchester and under the Christie. If I could swap position I would I just don't know what to do

[jujuju]

Yes ask for a second opinion. Do you think she is too weak for chemo?Have they tested her biopsy for mutations? If she is EGFR+ then she could have erlotinib which has much less harsh side effects generally. See someone who specialises in lung cancer. Best wishes. Julie

[Linny_babes in reply to jujuju]

Thank you Julie. I apologise but I'm not up on all the jargon!! All I know is everyone seems to have given up but I am willing to pay anything & do anything. I don't think she is weak no she has never been weak due to 22 years in the armed forces. So where do I go from here x

[Hidden]

Hi there,

I'm so sorry to hear this. If you wish to speak to one of us on the helpline, we can offer some support and perhaps advise you on what questions to ask, and to whom. Our Freephone number is 0333 3237200 option 2.

Best wishes,

Beth, on behalf of information and support.

[Linny_babes in reply to Hidden]

Thank you for your reply but it's not me who needs anything its my partner who needs it yet everyone seems to have given up on her!!!she doesn't deserve this and I would swap places in a heartbeat. Can you organise that?

[EileenD47]

My mum was diagnosed with the same on 26th January. She had low back pain and pain down right leg just above her knee and was told by casualty an numerous drs it was sciatica. Some sciatica it was lung cancer and spread to her spine. We live in northern ireland and to be honest totally frustrated with the way she's been treated here. She was as fit as anything an decided she didn't warrant emergency radiotherapy . I hope you get some help for your partner. We're lost as to where to go from here for our mum

Eileen

[Hidden in reply to EileenD47]

Hi Eileen,

Have you been introduced to a Lung Cancer Specialist Nurse at the hospital where your mum was diagnosed? They are a great source of support and advice. If you would like more details please call our helpline on 0333 323 7200 option 2 or email [e-mail]

Best wishes,

Beth, on behalf of information and support.

[EileenD47 in reply to Hidden]

Hi Beth .

Thanks for your reply. Mum has never been seen by a lung cancer nurse specialist and she was diagnosed on 26th January this year. In fact the 1st oncologist she met was 6 weeks after diagnosis . The oncologist was lively and was going to do radiotherapy on her L2 .

Mum ended up with a perforation in her bowel day after seeing the oncologist an didn't get radiotherapy done as too dangerous.

That was 11th March she should have had 1st treatment.

To date no treatment. Only for the pain in her back an partially down right leg mum has no other symptoms but now because of all the pain medications she has got soo tired lately , confused at times, swollen legs , steroid induced diabetes etc.

If only they could do something with the tumour on her L2.

Regards

Eileen

[jujuju]

The first thing to do would be to ask for a second opinion. As I am in the south I don't know anything about the oncologists where you are.Its worth phoning the helpline here as they will have more idea of who is well known for specialising in oncology for lung cancer. She may not get a trial as for most you need to have been diagnosed for at least 6 months and had some treatment.So a second opinion and has her biopsy been tested for mutations. It doesn't matter if you know the jargon, you just need to ask the questions. Unless she is very weak they would normally try chemo and stop it if it was having a severe effect on her health. If I find anything out I will post on here. I use the macmillan forum more and will check there as I am sure someone had a problem with the Christie not giving the gold standard treatment a while ago. Best wishes. Julie

[plumbum21]

Have you followed up on any of the advice given here yet ? I appreciate you may not be familiar with the jargon, most of us weren't to begin with, but it helps to learn as much as you can as quickly as you can, so that you can make the right decisions.

The freefone no. above can help in that respect.

Do you know the type of lung cancer & staging? (Small Cell; Non Small Cell; Adenocarcinoma; Squamous etc.) This will affect treatment choices. Do you know her performance status, this will affect treatment & eligibility for trials.

The hospital can do testing for mutations EGFR, ALK & ROS. Has this been done? You don't need to know to understand the science of this, but as a non smoking female there is a chance that she may have one of these mutations, which can lead to some very effective treatments.

Good luck in finding a suitable treatment. More information can be found here, the MacMillan and Inspire (US) site.

Best Wishes

Paul