The Roy Castle Lung Cancer Foundation
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Growing fatigue and getting no answers

Hi am stage IV adenocarcinoma diagnosed August 2014, been on afatinib 20 mg all this time.

Fortunately still here but the last 6 months have seen not a change in tumour size as per scans.

However last 6 months has seen fatigue, mixing up words, needing to walk with stick, balance issues.

According to checks all ok but as we all know we know our bodies better than anyone else..I am obviously concerned about spread but my oncologist does not seem worried. Have any other of you long term afatinib users found similar issues or have anything to add??

Please help as I am starting to feel that things are changing for the worse

Tom

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Dear Tom

Sorry to hear about your ongoing symptoms. It is understandable that you are concerned, and the fact that this is now affecting your mobility.

Has the Oncologist arranged any investigations to re assess you? If not it may be advisable to discuss your concerns with your GP and Lung cancer nurse specialist, you are also entitled to a second opinion.

Sometimes with targeted therapies , it may need to be changed either due to unmanageable side effects or it is no longer having an effect on the tumor. Any new symptom or side effects that are not documented requires investigation.

if you wish to discuss anything you can call us on our free nurse led helpline number on 0800 358 7200

All the best

The Roy Castle Support Team

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Cheers for prompt reply. Had a cat scan that showed no tumour growth so as this seems to be the benchmark of biological therapies working they don’t seem to be to bothered about the reduced mobility and fatigue. I have emailed my oncology nurse for update. I have been in contact with GP who has gone down the road of anti-depressants low dosage for last 2 months even though I don’t feel low about the cancer it’s about the fatigue😀

So genuinely I feel just a little in limbo because the treatment is keeping me alive.

Cheers in advance

Tom

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Hi Tom

That is great the CT scan has shown no tumor growth, and hopefully the Oncology nurse will get back to you soon , it would be good if someone could put your mind at ease. I would consider going back to GP with your ongoing symptoms and ask what other investigations could be done to assess your balance issues and mixing your words up.

Our helpline number is 0800 358 7200

All the best

The Roy Castle Support Team

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Hi Tom the same things happened to my husband,increasing mobility difficulties, increasing decline of cognitive ability and general fatigue that progressed to sleeping 21 hours of rhe day.

My husband was on no therapy due to his tumour being stable. Had numerous CT scans nothing showed up. When we asked the onocologist why he was displaying new symptoms but yet no progression of the tumour we were just told that's just the cancer?

Obviously this did not sit well with me at all because nothing seemed logical to me. Unfortunately for my husband he started with theses symptoms end of June and sadly passed away on the 25 September.

Six days before he passed away they decided to do an MRI scan on his lung which revealed the tumour was growing. My husband had been adamant over the last few months that his tumour was growing because he told me he was getting the same pain he had prior to treatment and the tumour shrinking! No one listened to him!

My advice to you considering what we went through is that you go back to your oncologist and insist on an MRI of the lung and brain.

Good luck

Cheryl

1 like
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Just wondered if you had had a head scan? x

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Just arranged after emailing oncologist nurse. Thanx!

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Hope that you get your appointment soon. Wishing you all the best x

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Hi Cheryl

Firstly let me express my condolences on your loss. I hope that you are getting some support now especially as it appears that it may have been lacking.

Secondly your explanation of the timeline of what happened to your husband is following a similar pattern to my own. In that I have had a few appointments where I have said if there’s no tumour growth why the new symptoms? And I simply feel ignored.

I am lucky in that yesterday my oncology nurse does listen if I say something’s wrong ( a few timed anyway)and I got a phone call yesterday after emailing them so now the oncologist is looking to get a ct scan of the brain done.

Your poor experience has in fact realised that I need to be more forward. Thank you so much.

Take care of yourself now

Tom

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Hi Tom hope you get some answers soon and can I suggest that you put your concerns about your health in writing either to the lung nurse or the oncologist or both. I have learned through experience that conversations can soon be forgotten about but an email is solid proof that can't be ignored!

I wish you all the best and hope you start feeling better soon.

Cheryl.

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Ask for Brain MRI if possible. If you ask/suggest this they have a duty to follow through. All the best.

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Cheers

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Hi Tom, You must insist on a MRI - the imaging is far more sensitive and can pick up more delicate changes if there are any - I know cancer and its treatment can cause a whole world of different symptoms and could very well be nothing to worry about but could also be something that requires immediate attention. I think with these things ots best not to dawdle! Let us know how you get on x

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Hi all, sorry for delays but been a bit of a frantic time did get a ct scan., last week had headache that wouldn’t go away. Falling over..Got an appointment with oncologist who hadn’t looked at ct picture. Result given there and then 7 brain mets one particularly large that was probably causing the headache. Now had a newer ct scan, steroids reduced headache immediately ...got appointment with radiographer on 6th December for next stage.

Naturally having looked up stuff am particularly worried about where things go and for how long!! As I have been particularly lucky to have only been on afatinib. With success for + 3 years

Thanx for the advice which I pressed to get appointments..

will keep you informed if you want to follow

Tom

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