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Sajid

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  • City
    Bradford
  • Province or district (if non-US)
    England
  • Country
    United Kingdom
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  1. I have most distressing news !!! Sadly my wife Fozia has passed away on Monday 8th August 2022 đź’” I would like to thank everyone on this forum for your guidance and support. stay safe ! regards sajid
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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
  8. 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.
  9. 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.
  10. 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.
  11. 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
  12. 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 ?
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