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Malignant lung cancer


Sajid

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Kamoto 

it’s not case of cost etc, 
she was given Gifitinib as a first line treatment because it can be easy with side effects.

Our Oncologist advised us that as long as this treatment works and no progression, there will be no need to stop.

As and when And if she develops EGFR T790m mutation then they will move her onto Tagrisso.

The question that comes to my mind is what happens if there is progression on Tagrisso .. what next ?

I just hope and pray that Target therapy tablets work forever for everyone taking them and keep this nasty disease at bay.

I hate reading about the prognosis.

regards

sajid.

 

 

 

 

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  • 2 weeks later...

I'm sorry I missed this. Research is developing a 4th generation EGFR targeted therapy, and they are also looking at combination therapies. Plus, at the time of progression, the mutation can change. Try to take one day at a time and don't look at statistics. Many people are getting quality years on targeted therapy. 

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  • 2 weeks later...

Hi everyone,

just an update and a few questions,

my wife been in hospital now for 15 days , she was complaining of chest pains and breathless. 
In hospital X-ray showed fluid building up in right lung and abit in left lung too and pericardial effusion too.

they removed the fluid in both lungs but only managed a little near heart.

she is stable but still complaining of chest pain but not much as before .

the fluids have been sent to be tested for T790m mutation. If positive then she will be put on Tagrisso.

the oncologist thinks that Gefinitib has stopped working that’s why fluid build up.

but I questioned beginning of July CT scan showed tumour were shrinking then it was working. Another Ct scan end of July still same.

I’m confused now.
Does anyone know if with gefinitib the tumour are stable or shrunk , but fluid is building up , does that really mean gefinitib not working?

he has stopped gefinitib tablets since she been admitted to hospital, and says wait for mutation result. 
But what if result shows no T790m mutation.. can she stilll carry on with gefinitib pills ? When will this fluid stop?
in the meantime he’s requested permanent drain in so fluid can be drain when needed. 
 

the other problem we have here in Uk is that there has to be a T790m mutation for doctor to prescribe Tagrisso .
 

Many thanks for any advice.

sajid.

 

 

 

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Said,

You've posed difficult questions. First on pleural effusions, they happen for various reasons. Metastatic cancer activity is only one of the reasons. You mention also a pericardial effusion. First, understand that everyone has some amount of pericardial fluid filling the pericardial space. When the fluid exceeds the "normal" amount, symptoms occur and those symptoms are mostly the same as pleural effusions--chest pain and difficulty breathing. This further complicates things. Pericardial effusions often point to heart related problems. A pericardial effusion can occur with cancer metastatic activity but not commonly. 

A permanent drain is a good way to avoid future chest pain and breathing difficult associated with pleural effusions. I'm not sure this type of drain is available or used for pericardial fluid because some fluid must be present all the time. It might be a good idea for your wife to see a cardiologist.

The lab test ought to point to the cause for the pleural effusion. If there are metastatic cells in the fluid, then your wife has active cancer. Maybe her Gefinitib is no longer working. Gefinitib (Iressa) is an EGFR inhibitor treating people who have exon 19 deletions or exon 21 substitution mutations. In the United States, Gefinitib is first-line treatment for non-surgical cases. Second line treatment in the US for progression while on Gefinitib is Osimertinib (Tagrisso) provided, as you say, that the laboratory reports a T790 mutation. So T790 mutation presence is a requirement both in the UK and US.

I do hope the lab results point to a T790 mutation or if not, that your wife's medical oncologist has another treatment in mind.

Stay the course.

Tom

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Thanks Tom ,

You’ve made more sense in the above paragraphs compare to speaking to our oncologist all day today.

They did an ECG and said function of heart being affected with fluid and started to proceed with fluid drain. They managed a little bit but when they proceed to leave a tube in there to drain , they just could not , tried many times and in the end gave up in case doing more damage and was told they can do open window in chest if needs be.

Luckily next day ultrasound scan revealed reduction in fluid near heart and next couple of days they monitored.

yesterday’s X-ray shows right lung fluid building up again . So they will leave permanent drain there.

just waiting for T790 mutation now , if positive then oncologist will prescribe tagrisso .

I think this varies with different oncologist. Some prescribe without T790 mutation.

we will get second opinion and change oncologist if needs be.

her sats are ok 

02/95% with 1/2ltr oxygen 

BP 117/78

heat rate 88.

 

Regards

sajid.

 

 

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Hi sajid 

Sorry to hear your wife is having more problems I really hope they can get to the bottom of this and she can start to get better, Sorry I can't help with any advice I don't know enough about any of this cancer stuff only how hard it is to go through it 

All the best Take care Justin 

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I agree with Bridget on the 2nd opinion.   Did they do an echo cardiogram as a baseline before she started taking Gefinitib?  The baseline would absolutely give them an idea as to whether the medication is causing this.  I wasn't able to start on Tagrisso without the baseline echo cardiogram. 

Are you wealthy?  Take a trip to the Mayo Clinic in Minnesota if you are.  They accommodate international visitors with a plethora of hotel rooms.  Do you get better care if you to London?  I live in Montana, and the expertise in lung cancer just isn't present here.  The Oncologist is more a generalist.  Try to find the best lung cancer specialist in the UK if that is possible.  Otherwise use your cash to visit the Mayo Clinic.

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I have most distressing news !!!

Sadly my wife Fozia has passed away on Monday 8th August 2022 💔

I would like to thank everyone on this forum for your guidance and support.

stay safe !

regards

sajid 

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