Lung Cancer

A support group for anyone affected by lung cancer to come together, share experiences, and ask questions.

The Story So Far

whyuzz
Posted by

Apologies for this really long Blog - I hope the details might help someone...

My husband is 55 and has never smoked.  He was quite intellectual, good with computers and a musician & composer.  This is our story so far...

September 2016 OH had a persistant cough but wouldn't go to the GP because 'everyone at work has a cough'.

December 2016 Visual disturbances
Some problems with car steering

January 2017 Problems with speech (not obvious)

February 2017 Speech problems (slurring & hesitation) more obvious. Problems with memory and processing information.

Late February A small car accident finally persuaded him to visit to GP (no mention of the cough!) Examined and referred to Stroke Clinic. Later GP called to say discussion with neurologist suggests not a Stroke so was going to refer to general Neurology Clinic.

1st March Sent home from work

4th March Temporarily unable to speak

6th March Return to GP where a different doctor referred him to Stroke Clinic as quickest way to get a Scan. Temporary loss of vision

Meanwhile he started to have headaches. Then came a rapid deterioration of fine motor coordination and cognitive skills. Followed by short term memory loss and forgetting how to do basic regular tasks. Increasing weakness.

14th March Visit to Stroke Clinic at local hospital inconclusive so sent for MRI scan

26th March Attended Hospital2 for MRI scan. Duty nurse suggested that we go to A&E to get things moving. A&E did the usual 'Stroke' tests but still inconclusive. I mentioned the cough so they gave him a chest X-ray (pronounced clear!) but they admitted him because they couldn't think what else to do - and because it was the quickest way to get him a CT scan.

27th March CT scan first thing. Early afternoon a visit from a consultant told us they had found tumours on both lungs and numerous brain mets - he had incurable lung cancer!

4th April Given a bronchoscopy with no sedation due to brain issues!

11th April Seen locally by repiratory consultant who was shocked to find he had been given no treatment at all. Prescribed steroids and sent to Hospital3 where he was (rather reluctantly) given whole brain radio-therapy over five days. The RT was very successful and there were big improvements to speech and to the increasing mental confusion. No side effects (other than tiredness) but lost all his hair about 4 weeks later.

Meanwhile OH was losing weight rapidly and getting weaker. He was eating very well and in no pain - even the cough had gone but he was getting very weak. Eyesight deteriorating so very little vision left.

16th May Met with the Oncologist1 who declared him too weak for palliative chemotherapy (which would probably not help anyway) but agreed to re-assess him the following week.

23rd May Saw Oncologist2 who decided he would be fine to start treatment

12th June First cycle of chemotherapy at Hospital3. No sickness but very tired for about three days - no other side effects. Continuing weight loss and weakness although still eating well. Serious cognitive and memory difficulties continuing but variable

27th June Saw Oncologist3 who decided he would be fine for a second cycle

3rd July Second round of chemotherapy. Again no sickness but very tired.

7th July A seizure! Completely unexpected and a day before we were due to go away. Taken by ambulance to Hospital2 but sent home after checks with increased steroids and put on Keppra tablets.

9th July 48 hours of constant severe diarrhoea. Struggled to keep him fed and hydrated - in bed for three days.

17th July Saw a Neurologist (following seizure) who took all his information from my account and increased the Keppra dose.

18th July Saw Oncologist1 who declared him too weak and ordered a break from chemotherapy.

25th July MRI scan (first since March!)

1st August Saw Oncologist1. Latest blood tests were pretty good, chest sounded clear and MRI scan showed improvement from March (although, I suspect, less good than after radiotherapy). Gave the all clear to restart chemotherapy.

7th August Phone call from Hospital3 to say he had missed his chemo treatment (we hadn't been notified of the appointment!!) but they managed to squeeze him in early next morning.

8th August Third cycle of chemotherapy. No side effects but very tired for a couple of days.

Meanwhile he is still very weak - although still eating well. He has trouble walking even short distances but shows little sign of breathlessness. Eyesight is very poor - as is short-term memory and cognitive skills. He has regular bouts of confusion. However, he is in no pain, no headaches etc... He is scheduled for a fourth cycle of chemotherapy - although his next oncology appointment has been delayed until a couple of days before. After that, who knows?

SamIam
Posted by

Dear Whyuzz...so thinking of you both at this time. Myself and hubby went through similar things....being sent home from work etc admitted to A + E....lots of tests.....lung cancer was such a shock for me / us.

His took ages to be diagnosed too.....sent my head spinning.

Don't have any smart one liners....am here if you need to chat....or the helpline here is really good.


Much love xx

whyuzz
Posted by

Thank you.  May I ask the outcome of your diagnosis?

We haven't been given a prognosis and haven't asked for one - I suspect it's very poor but I don't think OH realises this.  No one has said what will happen after the fourth cycle and I don't think OH realises we were only offered four...

SamIam
Posted by

Andys cancer was sent packing....really! It disappeared! He had 6 chemos....so don't give up (easy to say) sorry can't remember his concoction of drugs

He was very tired and had nothing left in himself... Very skinny


He did really well although it was tough going


He caught a common cold and because his immune system was not great....he got pneumonia

I was away with the littlens - took them to mums for a short break


So he (typical of him) just took some paracetamol and carried on (he had gone back to work)

I would say we had to get a nebulizer..... Strange to me at first.....got used to sorting out his drugs though


Try Argos if you can't get one from your Dr

A bit expensive but worth it

Take care of you as well though.... I just ate toast.....not good


Write again if you need to ask anything


I would say with him....obviously the pneumonia got him in the end...but it all might have been better if he had sought proper medical help...but hindsight is easy


The kids had chicken pox a few weeks after he died so maybe that would have hospitalized him too had he been around then....


I don't have all the answers but the helpline is good too

Hope all that helps....remember you're powerful and courageous x


SamIam
Posted by

Sorry - realized that I didn't really answer your question. The prognosis was not good at the start of chemo but take heart.

Shortly after he was diagnosed I came across an article in the MacMillan magazine about a bloke who had beaten lung cancer for 10 years - free.


I was pleasantly surprised as our situation seemed so bleak.


It did take Drs a long time to diagnose....so I guess that didn't help.

Apparently it is difficult but then a chest x ray revealed it.


The nurses at our centre were all lovely and the receptionist's too but I hated going there.


Thinking of you....after 4 chemo's they did an MRI to see how things had gone....everyone was joyous with us as it all worked really well.


We celebrated! But at that news, he secretly had a few cigarettes again...I later found out.

I don't understand either but can't question it .....he is not here and our daughters still grow up without their Daddy.


Anyway, hope that answers your question.... sorry to ramble on. X

I realise the cigarette thing might cause offense to some....I am sorry, I didn't know....

Ry8tes
Posted by

Hi Samlam, sorry for jumping into this thread, i would just like to ask if it was small cell that took your husband. The reason for asking was that my diagnosis was very drawn out, in fact something not right for years, but every time i suggested lung cancer i was told that it would not be small cell as that progresses too quickly and that even non-small cell was unlikely to present over such a long time.

It is not until I heard peoples real experiences which have not been manipulated to show targets being met or how great we are at diagnosing and treating people, that i realised that I should have pushed harder. I just hope that getting this information out there can help others.

Ray

scat
Posted by

Hi whyuzz,

I'm a 38 year old man smoked for 20years.

Hi have a similar story, now...

I have had a brain tumour removed in 2009 with high dose off radiotherapy given after surgery, grade 3 astrocytoma.

During 8 years a have been fine, just the usual MRI scans, until my last one in May that showed I had 4 metastases in my brain.

They where different from what I had before and they asked me if I was sick, I have been with an annoying cough with a dark blood I said... the doctor said it can be lung cancer my world feel off on me.

Pet scans, MRI scans, bronchoscopy and final verdict adenocarcinoma lung cancer right lung, because I had the max of radiotherapy in 2009 I am only doing chemotherapy and we would see after 3 treatments that I have done yesterday pemetrexed and cistalin. is what I am doing.

Last week I have done another MRI scan and the doctor face it wasn't good and said that for her I need something done on my mets as they are bigger or radiotherapy or that gamma knife.

My left side face is paralysed  and I have a bit of right hand laziness, and 2 horrible seizure so far.

Eating really well and tired the majority of the time, better in the mornings.

Sorry about my English as I don't practice as much these days as I moved to my homeland Portugal from the uk with my wonderful English wife 7 years ago.

I do dexamethasone 2 others anti seizures plus vitamins , folic acid and sleeping pills because sleep bad worried about my 2 daughters.

Hope this can help anyone as well like your post did me.

SamIam
Posted by

Dear Ray...yes, you guessed correctly... it was small cell. He had some radiotherapy too to his head because small cell sends out secondaries apparently.... I didn't know.

These things do seem to take ages to diagnose though....I remember almost having a stand off row with a miserable receptionist.... almost begging her to send a GP round.

"I can get someone to phone your husband" she said


NO...I want a Dr to make a home visit....


Let the battle commence I say....you're messing with the wrong girl 


I had to learn (the hard way) to almost demand checks and tests and visits...it was little me who got nurses round to change dressings etc (bed sore)


I hope you get what you need from these Drs....its tough that you've got to be tough...thinking of you at this time....as if its not scary enough.....

Let me know how you get on....keep fighting x

whyuzz
Posted by

OH's diagnosis was made harder because he never mentioned a cough - he only presented with brain issues.  Presumably, by the time he went to the GP, it was too late as there were multiple mets in the brain.

I have no idea whether he has small cell or not - no one has ever told us...  He is currently being given carboplatin & pemetrexed but at a reduced dose.  This is in addition to dexamethasone, keppra, folic acid etc  I suspect they've given up on him already...

Ry8tes
Posted by

Thanks Samlan, do you mind telling me a bit about his diagnosis, how long etc and earliest symptoms, I would be interested to know and so would a few others who were palmed off for a while.

Hope you are doing OK.

Ray

SamIam
Posted by

Hi, yep....he first had back pain so we spent many hours (and weeks) at some back persons cinic....doing exercises...... Time bomb ticking away in his chest!

Stupid Dr


He collapsed at work and they brought him home


I tried to get a GP


Eventually a Dr did come....he asks "what's he doing in bed??"


Um....sleeping


He dialed 999....went to A+E....loads of tests which took a few days....stayed on a ward for all that


He was quite buoyant.... Happy chappie


His business partner John brought him home - he told me really..... not good


Treatments started a few days later at our local MacMillan centre


I bought a nebulizer from Argos because on the NHS was going to take a while


All in all, from the back pain till treatment took about 6 months


I guess it was all too late by then but he responded really well....the tumor disappeared.


I think that's about right....I didn't always go to oncologists meetings cos little one was only 3


He had no cough....only this pain in his mid back...if that all makes sense?


Anyway...hopefully it helps....best wishes....

Ry8tes
Posted by

Thanks Samlam, I just can't get my head around how often people are diagnosed late when they have been going to the docs and hospitals for a while. I was categorically told I could not have small cell lung cancer as they said it would have killed me a long time before eventual diagnosis. I just wish the medical professionals would be a bit more suspicious and perhaps even be aware of patients experiences through these forums. They just seem so sure that small cell presents so quickly that the time to diagnosis is normally just a few weeks, yet this does not match my experience or many others on here.

Maybe one day things will change,

Best wishes to you and your family.

SamIam
Posted by

Thanks Ray....I understand a bit more if that's what the professionals think....it makes sense but to not even consider say a chest x ray....it might catch others in time.

What I find hard is how you have to fight to get seen by a Dr....once you've been diagnosed, they're falling over each other to help.

Andy's bloods could be fast tracked....wed have results within a couple of hours.


Normally it takes days....why does it take having this awful disease to make things quicker. I think I know the answer.

Small cell cancer is just horrible....although it makes you focus on the little and important things in life.

How many treatments have you gone through?


He had 4 then an MRI...they probably would have stopped there if he hadn't been doing so well.

I remember spending hours and hours in waiting rooms...tests, meetings, chemo...it seems like I was someone else.

I remember the first time I had to go to the MacMillan centre....it was packed....standing room only. Not like the adverts where you see someone on their own receiving treatment with no one else around....

I had to learn lots. Tough lessons....he died outside our home so then I had to work with the police and coroners office.

Tough learning curve for me but no doubt, others experience lots worse.

Anyway, best wishes to you too as you walk this path

whyuzz
Posted by

Yesterday OH started coughing again - after a break of about 4 months.  I don't know whether this is a sign of something bad happening but I don't imagine Oncologist1 will be too impressed next week.  Also, he is beginning to feel more negative & depressed (hardly surprising really) which is a common side effect of the Keppra tablets.  No idea about weight loss (although he's still eating very well!) - we haven't dared weigh him lately...

whyuzz
Posted by

So today we met Oncologist4! (at Hospital2) - it really is quite unsettling to see a different person each time!  He didn't know much about the case but, from reading through the notes and looking at today's bloods & chest X-ray, has approved the 4th cycle of chemo to start on Thursday (at Hospital3).  After that appointment we had to race nearly 20 miles to Hospital1 for a CT scan.  Everyone agrees that it is a bit odd to have the scan before the 4th round of chemo but that's the way it has turned out...  I now know that it is NSCLC

At the moment the lung tumour seems to be fairly stable - as does his weight so that is something to be thankful for.  He is slightly amemic but that didn't seem to be cause for real concern.  Oncologist4 didn't examine him in any way - just asked us what we thought. OH always says everything is really good because he thinks that's what they want to hear.  The appointment went more smoothly as he was able to use his shiny new wheelchair - although he did manage to get himself locked in the loo...

Still no wiser as to what happens after this cycle of chemo.  It seems as though that will be decided on the basis of the CT scan carried out before this round of chemo???  Hoping desperately that they come up with something...