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Malignant lung cancer


Sajid

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For six months my wife complained of back pain and shoulder pain and night sweats. Doctors prescribed muscle pain tablets and exercises. 
2 months ago her breathing became heavy. She was out of breath doing even minor things .

we took her to A&E where the did a chest X-ray and found fluid in her lungs. Also they did CT scan on her back and chest.

for results we were referred to lung specialist nurse, we got the biggest shock of our lives when they said they suspect cancer. 
they did further tests of the pleural effusion liquid to see if it was cancerous.

another shock , it was malignant pleural effusion. Cancer cells were present and it has spread.

primary was Lung cancer , tumour on her right lung 2.5 cm. Has spread to lymph nodes and lower back spine. See picture below .

how is this even possible, she is 44 years old , never ever smoked in her life , not overweight (55kg) .

our world just fell apart !!!

they said surgery is out of question because it has spread . 
we are to see a Medical Oncologist on 25th April 2022 . 
the malignant pleural fluid has be sent to a laboratory to be bio gene tested I think … if she is suitable for targeted therapy.

while waiting for this appointment and result. Her condition seems to getting worse . 
her breathing got worse , so they drained the fluid from her lung and which helped slightly. But the cough is the major problem . Every two house she has a cough fit , and starts to bring up phlegm (thick white colour) can she take anything to relieve this . 
she is on a low dose of OraMorf 1.2ml every 3 hours, for pain and cough relief. But it’s not working. Her O2 level drops to 83 . 
we got oxygen in house and when she takes that , o2 level goes up to 88 or 89 , never higher.

I feel so helpless, can’t do anything for her. 
what I want to know is will the cough ever go away .

is it curable with target therapy or treatable ? 

 

 

 

 

 

 

81F8B317-9453-4D72-BC9C-41D327273672.jpeg

Edited by Sajid
1st post , unsure
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  • Sajid changed the title to Malignant lung cancer

I'm sorry your wife is going through this. It's unfortunate that she was misdiagnosed but it's pretty common for many of us. I was misdiagnosed for months. 

It's good that her pleural fluid has been sent for biomarker testing. If she does have a targetable mutation, it's very possible that her cough and fluid could respond.  In the meantime, I assume that fluid will be drained off as necessary. 

Perhaps your wife's doctor could prescribe an inhaler to help with the coughing and shortness of breath. Please be sure to ask. 

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Hi said

I'm sorry to hear about your wife's condition,goodluck with everything try and stay strong and positive she can get through this regardless of the stage hopefully the cough will get better soon and get a treatment plan in place all the best Take care Justin 

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Sajid,

I'm very sorry to learn of your wife's diagnosis. To your questions: is lung cancer curable and does the coughing go away? The answer to both is yes, although cure is not normally used in our community. Here is an explanation of the various terms associated with lung cancer prognosis and here are some suggestions for mitigating coughing.

You mention targeted therapy and that is indeed a possible treatment. But there is another method that is moving the survival curve substantially--immunotherapy. The bio-gene testing or biomarker testing should reveal if either or both of these methods are a way forward for treating your wife's lung cancer. I was diagnosed in February 2004, well before the advances in targeted therapy or immunotherapy. I had five failed treatments before a precision radiation treatment--CyberKnife--dealt with my lung cancer. Unfortunately persistence and patience are treatment fundamentals, but if I can live, so can your wife.

When a treatment plan is devised, there is every reason to hope that it will mitigate your wife's lung cancer. Treatment may also reduce the need for supplemental oxygen. I look forward to you telling us about your wife's successful treatment that results in NED--no evidence of disease, our gold standard result.

Stay the course.

Tom

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Dear Sajid,

I am sorry to hear about your wife. I can’t add much to the above, but wanted to welcome you to this forum as someone with a similar diagnosis based in the UK. It can be a lot of help to navigate this difficult time. I am an otherwise healthy 49-year old, and stage 4 NSCLC adenocarcinoma and was diagnosed last year, so can understand your shock.

The next few weeks will likely be difficult, as you wait for a treatment plan, but hang in there. There are great treatments available and a good chance that your wife’s symptoms could improve. My cough wasn’t too bad, but it disappeared a few weeks into treatment.

Let us know how it goes, Rikke

 

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Hi Sajid,

I'm so sorry you must be here.  But to chime in, my husband was also similarly diagnosed this year at age 45 with metastatic adenocarcinoma, which had spread to lymph nodes, liver and spine.  After his first chemo treatment over two months ago, there was noticeable improvement with his health.  You would not even know he was sick now to look at him.  I do hope the same happens for your wife, and understand the distress you are experiencing.  

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Thank you so so much for everyone replying and kind advice. 
past week has been hell , we are all in denial, I’ve been asking everyone to test again , maybe a mistake has been made .

Update… 2 days ago , her breathing got worse and cough too , she started coughing up yellow and green colour phlegm. And could not keep anything down , felt nauseous and vomiting and stopped eating.
she was admitted to hospital and they did chest X-ray and confirmed the fluid has returned to the right lung and her left lung had bacteria infection.

Now she is on a drip to take all her medication, anti sickness , antibiotics Levofloxacin twice a day and sodium solution for dehydration. Antibiotics are helping the cough but breathing is still a major concern.

Spoke to her consultant today, he has arrange for a indwelling pleural catheter IPC. (Tomorrow afternoon)so that it can drained when needs be . This will help with the breathing.

our fingers are crossed at the moment in hope for the suitable pill for target therapy. The result will be know in a weeks time.

thanks again

regards

sajid

 


 

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I’m so sorry you’re on this horrible roller coaster ride.  The circumstances were very similar at the time of my stage IV diagnosis.  In order to stop the rapid clinical decline my oncologist opted to give me one round of a chemo/immunotherapy cocktail while we waited for the biomarker testing. That decision probably saved my life. Nowadays a chemo combo of Carboplatin and Altimpta would be administered without the immunotherapy.  That was four years ago and I’m still going on the first line of targeted therapy.  Hang in there and keep asking questions…. We’re here for you. 

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  • 2 weeks later...


Just an update :

My wife has been discharged from hospital after 10 days ….

Management / Progress:

Patient was diagnosed and treated for a chest infection and right sided pleural effusion. She was given oxygen, treated wiht Iv antibiotics and a right sided intercostal drian inserted. Patient had increasing oxygen requirements and so was transferred to the respiratory ward for nasal high flow oxygen and further chest drain care. Once the pleural effusion improved, and oxygen requirements settled, the drain was removed and the patients oxygen was weaned to her baseline. She was commeneced on Dexamethasone which will be weaned on discharge. She had regular input from the Oncology team who will follow-up as an outpatient

Good news … the bioMarker test came back with a match !

The oncology Consultant prescribed her with a Target Therapy tablet called Gefitinib. To be taken 1 pill  a day.

has anyone heard of this? Is it good ? How long before you know it is having any effect ?

thanks everyone

sajid.
 

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Gefitinib (Iressa) is a first-generation tyrosine kinase inhibitor (TKI) that is used to treat EGFR-mutated lung cancer. I happen to take osimertinib (Tagrisso), which is a 3rd generation drug.

https://pubchem.ncbi.nlm.nih.gov/compound/Gefitinib

Lots of people take Iressa. I can't speak to side effects, but you may want to join these private Facebook groups, where there is loads of information:

https://www.facebook.com/groups/targetedtherapylung/?ref=share

https://www.facebook.com/groups/EGFRlung/?ref=share

The good news is that your wife will be taking a targeted therapy. Hope she gets great results. 

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  • 2 weeks later...

Thank you , everyone here for the support and useful information….

we went today for our first meeting with the oncology consultant named Dr Andrew Conn based here in Bradford, England.

The bio marker result was EFGR mutation L858R. 
she was put on Gefitinib (Iressa).

What concerns me is he said they normally prescribe Osimertinib. 
but didn’t because of NHS guidelines and because of the condition my wife was when she was admitted to hospital with her breathing and fluid in lung.

Good news he said was that , 3 weeks of taking Gefitinib, by looking at recent X-ray the fluid has not built up again, so it may be having some positive effect.

a Ct scan in July will properly tell. 
 

her condition at the moment is ok , breathing ok , no oxygen required , oximetry level 95 - 98 % .

but every morning cough with a bit of phlegm, like something stuck in middle of chest . After midday .. no cough ! Can’t understand why ? 
also tiredness , fatigue. Will this ever go away .

and does anyone know how long could she be on Gefitinib before it stops working? …. then what ? Another target therapy pill ?

thank you for reading …

regards

sajid.

 

 

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Sajid,

Your report on declining fluid does in fact suggest Gefitinib is working--great news! O2 saturation between 95 and 98-percent is indeed good. So I'm glad things are moving in the right direction.

I'm not a doctor but I do have a morning cough, especially in the spring with increasing pollen. It also presents like something stuck in the middle of my chest and wanes after midday. I believe this symptom occurs because of congestion that happens during my evening sleep. I often accelerate the process of dealing with it by starting my day with a long, steamy shower.

As to how long Gefitinib keeps working, I just hope it keeps working. And yes, perhaps another targeted therapy for EGFR but let's keep things in prospective. Each day Gefitinib works is another day of life. Live in the day. Find joy in each day. Rejoice about the small victories you are having together.

Stay the course.

Tom

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Great to hear that gefitinib is doing its job. Hope your wife gets great results from it for a long time. 

It's hard to answer how long gefinitib will work or what comes after it. I don't know how long osimertinib will work for me, none of us know. Tom is right, live one day at a time. It's really all anyone can do. 

It takes time to adjust to a targeted therapy, and your wife is expending lots of energy to overcome her cancer. Three weeks is very short. From my own experience, my primary care doctor had to give me a B12 shot after a year on targeted therapy, and I also had low sodium to correct. Both of those can contribute to lack of energy, so your wife might want to see her primary doctor. 

The morning cough could be allergies (which I have) or acid reflux. An ear, nose and throat doctor can determine if your wife has either. 

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Thank you Tom and

Thank you Judy.

You are both inspirational !!!

My wife’s cough has slight improved, Doctor prescribed Metoclopramide tablets (anti sickness tablets) this helps.

Our next worry is the weight loss . Pre diagnosis she has alway been 50- 52kg mark .

Last week 48kg, today 46kg 

she is eating as much as she can , but does feel full most of the time. We do have a consultation with dietician next week.

is the lung cancer causing the weight loss ? or is it the Target Therapy gefitinib ( one of side effects) ?

Or will it stop once the target therapy starts to work properly ?

her appetite is there because of the steroid tablets she takes but still no weight gain .

she could double her calorie intake but it’s difficult if you feel full all the time.

thanks again for reading 

regards 

sajid.

 

 

 

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Sajid,

Weight loss during lung cancer treatment is something to be concerned about. Your wife’s targeted therapy may be suppressing her appetite. I’d inform her doctor. 

I had another type of targeted therapy, Tarceva, as a combination with Taxol and Carboplatin. This affected my taste sensation and I lost my appetite. When my weight started to drop, my wife (a dietitian) read that mint flavoring might amp my appetite. It did and I lived on 3 meals of chocolate mint ice cream till my taste returned to normal. Calories count during cancer treatment.

Stay the course. 

Tom. 

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Sajid,

It sounds like your wife is doing so much better with the targeted treatment. 

The weight loss can be scary. Hoping that the dietician will give you suggestions to help. Sometimes having 6 small meals a day that are high in calories can help, especially if she feels full after eating.  The fact that her cough is better is positive.

I hope her targeted treatment continues to work and that her upcoming scans in July show reduction in her cancer!

 

Best,

Ro

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Thanks Roz, 

fingers crossed for July.

We got the clinical summary from the doctor yesterday, shown below.

Couple of questions if anyone can shed some light on the matter …. Is she on the correct/best for first line treatment ?

PD-L1 expression 70 80% … what does this mean? Is it regards to immunotherapy, that she may be compatible for ?

thanks again 

regards

sajid

 

 

2AC7E13B-5497-4BA2-9FF8-E1AFF760B2B1.jpeg

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Sajid,

Does your wife's expression of PD-L1 at 70 to 80-percent indicate suitability for immunotherapy? The answer is complicated. Those with the EGFR mutation, and perhaps the L858R version, tend not to do well on immunotherapy. Why? Here is but one citation that "explains" the issue (warning--scientific literature complexity).

So we are offering our best hope for success on Gefitinib.

Stay the course.

Tom

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  • 4 weeks later...

Hi everyone ,

just an update on my wife … 

just was wondering if anyone knew how long before target therapy pill Gefinitib really starts to work ?

we saw our oncologist today he said about 6 months. My wife has been on it since 22 April 2022.

Had an X-ray scan done on the lungs yesterday… see picture below.

the fluid has slowly come back.

the one on the right was 6 may 2022, left one yesterday 13 June 2022.

is this something to be concerned about ?
Oncologist says nothing to worry about ..

if she becomes breathless or cough develops he will have it drained out again.

Other than this , she is fine .. all blood levels are ok , o2 level 94-97 %, no weight loss. 
 

next CT scan 1st week in July to check the state of cancer.

we just dread these visits to the oncologist !!!!

regards

sajid.

 

 

 

 

945371B6-09B5-4430-B7C6-5B81306477C8.jpeg

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  • 2 weeks later...

I understand that dread. 

I don't have any information for you regarding the return of fluid, but I want to celebrate her O2 levels-- that is very encouraging. 

If you feel you need more information, if you are able to consult with another physician that might help. I know medical systems differ widely from country to country....

I wish you and your wife all the best.

Karen

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I don't personally have experience with fluid but I know of others on targeted therapies  who need to have fluid drained periodically. It can be annoying and uncomfortable. The good news is that if Gefitinib isn't effective, there are other targeted therapies that can be used. Fingers crossed for her next scan. 

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  • 2 weeks later...

Thank you for the replies above …

Update….

she was booked into hospital for the fluid to be drained… she was all prepped and when they did ultrasound scan .. found she did not have enough fluid to be drained , so procedure was cancelled.
It was then decided they will bring the CT scan forward to better see what was going on.

Good news !!

The oncologist informed us the cancer has shrunk by 50% in all places…

in the lung , 3 lymph nodes and the the spine the bone looks more ridged.

he was pleased with this and said he

will continue the target therapy tablet Gefinitib.

but scan also showed a bit of fluid near the heart, This was new to us.

it’s a bit strange , breathing ok , o2 levels ok. Blood readings ok .

she only complained of a bit of tightness of chest and pain.

Oncologist said it could be infection… so prescribed antibiotics Doxycycline for two weeks. 

never heard of this antibiotics before.

the biggest problem at the moment is the side effects of Gefinitib, acid reflux in stomach and diarrhoea and loss of appetite. 
 

the roller coaster ride continues……

regards

sajid.

 

 

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This is really good news, Sajid. Many people take Doxycycline for infections and also acne/rash caused by targeted therapy. The side effects you mention are common with targeted therapy and they can be mostly controlled with medication and diet. 

I also have a small pericardial effusion that does not affect my O2. I just had an echocardiogram and everything is normal. 

If you're on Facebook, you might get information on coping with side effects in this private group: 

https://www.facebook.com/groups/targetedtherapylung/?ref=share

Or post a question in that group. I'm sure you'll get some answers. Glad to hear about your wife's good scan. 

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Sajid,

What a wonderful update! Things seem to be moving in the right direction, cancer treatment wise. Side effects are troubling but worth the effort if Gefinitib keeps producing the desired results. I hope things keep moving in the NED direction.

Stay the course.

Tom

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Interesting that your NHS guidelines are Gefitnib.  Are you wealthy at all?   I take Tagrisso, but it costs insurance providers $16,600 a month.  Astra Zeneca is a British company I thought so your NHS must get a good price.  Like others have pointed out, Tagrisso is 3rd gen drug.  Seems like it’s working, but ask why she can’t take Tagrisso

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