Husband has Stage IV lung cancer.Advice please

Good morning all

I am so glad that I found this site as the help and advice is wonderful. Brian was diagnosed after sever pain in his hip- no other sypmtoms, a fit, active 75 year old non smoker. He has has Stage IV lung cancer with mets in the bones, liver and one adrenal gland.

Apart from recovering from Gamma nails put in hip/leg still no other symptoms.

Had his first chemo-carboplatin/pemetrexed (proving negative for the EGFRwith Zometa for his bones, on Wednesday- no after effects yet

I would like advice please on the following:::::::

1) He is due to have up to 6, 3weekly chemo sessions but only 2 if there is no improvenment- why would they stop so soon ?

2) The Oncologist's prognosis was- 1 Year with chemo, possibly 6 months without- how realistic is that please- (He doesn't know that )

3) what are you lovely people's experience of chemo after effects i.e. if and when they began

4) PET scan. i.e. what is it, what is the difference between that and a CT scan and whether it would benefit my husband.

Thank you so much for reading this- sorry it is so lengthy. No doubt I will have more questions in the future.

Have a good weekend everyone- hopefully you are all getting this sun (I live between Biggin Hill and Bromley in Kent) and that we can enjoy summer at last. x

8 Replies

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  • Hi Sandra

    I'm not going to try and give you a 'modern' answer your questions, as all the methods of diagnosis and treatment have changed since it affected me 12 years ago. However, I'll give you a couple of answers from my own experience, and I'm sure someone with more recent experience will add something more meaningful.

    1) I had five overnight sessions of chemo, every three weeks. Each was followed eight days later, by a short 'top-up' session. I understand that if there is no improvement after a few sessions, they may stop as they feel a) it's not helping and b) they fear it may do more harm than good to continue. They will then look at some other form of treatment.

    2) I wouldn't try to answer this one, other than I do know chemo helped me.

    3) Everyone's illness, treatment etc is different. My chemo experience was not particularly pleasant but all it did was make me lethargic - very tired all the time.

    4) for a definition of the scans, check on the internet dictionary and it can tell you more accurately than I could.

    Ask questions on the site as often as you need to.

    Have a good weekend yourself. Sun is shining in Dunblane, Perthshire, and we're off to a wedding in a couple of hours.

    Best wishes, Bill

  • Thank you Bill, enjoy the wedding.

    Best wishes, Sandra x

  • Hi Sandra,

    I am sorry to hear about your husbands diagnosis,I can share with you my experience in answering your questions.I really must say though,everyone is an individual,and treatments offered to patients is based on his medical team considered opinions on what treatments would be best suited to the individual patient.

    1) My chemo,was called neo adjuvant,that is where the treatment is designed to shrink a

    tumour to a

    manageable size, and if successful in doing this,which it was,I could have surgery to have

    the tumour removed.This surgery was carried out on me in January 2009,and since

    then ,I have received no further treatments.My chemo was a combination of two

    different drugs,cisplatin and vinorelbine,I had 4 cycles,each cycle separated by two

    weeks.As Bill mentioned,the effects of chemo in the individual are monitored carefully

    to ensure they are having a beneficial affect on your husband.Since these are

    powerful drugs and can harm healthy tissue,doctors must use them with great care.

    2) I have to agree with Bill,and duck this one too,I have no idea how one could determine

    accurately how long any cancer survivor has left,in my own experience,my GP,without

    any solicitation from me,gave me two years maximum,well I have now survived nearly 4

    years.

    3) As I have previously mentioned,each persons reaction to chemo,is entirely individual

    I suppose variations in reaction would be based on the types of chemo drugs

    prescribed.In my experience,I had no discernable side effects at all,sorry,I did have

    one occassion of constipation,which was a bit incomfortable,this could have been

    avoided if I had paid more attention in drinking plenty of fluids during my chemo.

    4) To determine the most effective treatments for a lung cancer patient,doctors can use

    tests to discover to what extent the cancer has developed within the body,each test

    has its own merits,eg in my case initially,I had an X-ray,which discovered my upper lung

    had deflated,I was then sent for a brontoscopy and a CT scan to get a better

    understanding of the location and size of the tumour in my lung,and to discover if it

    had spread to other organs in my body,including lymph nodes,in my case there was

    local spread to one of the lymph nodes near the tumour.I was sent for a PETscan to further

    investigate the spread of cancer cells.The procedure is not in the slightest

    uncomfortable,a radio active solution is injected into the forearm,this circulates the

    body,cancer cells present will now be "Lit Up" or as the doctors describe "Hot Spots"

    this method is extremely accurate in finding where abouts in the body the cancer cells

    reside.Not every lung cancer patient is given access to a PET scan,I consider it

    fortunate that I did have that referral.

    I do hope I have shone some light on your understanding of lung cancer through my

    experience,and has helped you in some way.I can well remember the anxieties I and

    my family went through at the outset of my dx,things with time do settle,the nerves

    do stop jangling as you and your husband are steered through all his

    treatments,theres a saying I heard recently,which helped me "Worry, is like sitting in a

    rocking chair,it gives you something to do,but it dosnt get you anywhere".I know easier

    said than done,try to take one day at a time,simple advice,but none the less true.My

    very best wishes for you and your husband for a successful outcome with his

    treatments,do keep us in touch.Bye for now.

  • Thank you Eric

    Kind regards

    Sandra

  • Hi Sandra,

    so sorry you are going through this. I am stage 4 but I was EGFR positive so mt treatment is different. I am however a nurse.

    1/ Bill is right, if the initial treatment isn't working and they would usually see after a couple of sessions it may do more har than good, they will stop it and re evaluate.

    2/ The oncologist is basing this on statistics. The statistics are are based on treatment regimens from around 5 years ago so are outdated. Things have changed since then. Stats are also based on averages. Everyone is different, there are numerous stage 4 survivors outliving these stats. I didn't want to know initially as I didn't want it to apply to me, all stage 4 inoperable are pretty much told the same thing '6 months without treatment, 12 months with' I am now 16 months and feel and look great, (currently having a little adventure travelling around the USA) The one thing all the 'survivors' have in common is having hope and remaining positive. So please help him to remain so. I have decided its not going to beat me,I was 49 when diagnosed and have far too much to live for.

    3/ Can't answer personally, but everyone reacts differently to it.Most of the side effects (sickness) etc can be controlled. Lethargy is probably the main one that you can't do anything about onlt get enough rest. Chemo also lowers your immune system so staying healthy is vital.You don't need anything more than a well balanced diet containing essential nutrients. Keep anyone away who has any 'bug's' colds/flu etc as he will find it more difficult to fight it.

    4/Bills answer is spot on.

    I've attached a link for the Penny Brohn centre, which is a cancer charity that looks at well being and nutrition, its worth looking at they do great things to help maintain well being etc. I haven't had to use them yet but I know someone who has and is following there nutrit ional 'diet' whilst recieving chemo. pennybrohncancercare.org/

    I wish you and your husband all the best, please let us know how you are getting on.

    take care

    Lyn x

  • Thank you so much Lyn, Bill and Eric. I am keeping my thoughts, concerns and worries away from Brian and remain outwardly positive . This website and you lovely people are a Godsend and it's so nice to be able to 'chat' with you and to know that it is not all doom and gloom.

    Today is the 3rd day after treatment and so far, so good, apart from the lethargy- he is feeling more tired than usual but manages to potter about and do what he can, when he can.

    I will certainly have a look at the Penny Brohn website.

    Thank you all again.

    Very best wishes

    Sandra x

  • Hi sandra.

    My 87 year old grandma is also stage 4 lung cancer. Which has spread to her lymph nodes and has

    Fluid on the lung.

    Nan had a pet scan at st thomas's hospital. Not sure

    Other than helping with her diagnosis what is gained from having one. But the staff

    Were lovely and its not invasive.

    Nan tested positive for EGFR and is 16 days into taking gefitinib. No real side affects

    So far but has a hacking cough and wheezing is desperate.

    She also was given 6 months without chemo. And 12 to 18 months with

    Which seems to be what most stage 4 patients are told.

    The best advice I have been given is to take each day as it comes

    Wishing you and your husband all the very best,

    We are also enjoying the bromley sunshine

    Regards

    Nancy jane

  • Thank you so much Nancy jane. So sorry to hear about your Nan and hope that she has good results with the Gefitinib.

    That is good advice- to take each day as it comes. I do that most of the time and try not to think too far ahead but it does get difficult at times.

    Another lovely day in Bromley, let's hope it lasts.

    Very best wishes to you and your Nan.

    Sandra x

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