My father passed away on Sunday June 29th 2008.

I know I have not updated this blog since November last year. I will fill in the gaps as soon as I am ready. I have requested medical records and scan results for all treatment post January.

These last 10 months have been a roller coaster. I dragged dad all over the U.K and even then he never spoke out about being scared. He was such a strong man.

10 days before my fathers death and since being discharged from yet another Hospital stay which lasted 4 weeks. He became increasingly weak and was more or less bed bound. Both my brothers helped him go to the toilet and take showers. He then struggled to speak and was very out of breath. When he left the hospital he was given a nasal oxygen machine which helped him breath. His right lung was not functioning and his left lung was increasingly taxed and on one occasion we were called into hospital when he caught pneumonia.  He overcome that and was discharged as he wanted to come home for the rest of his days.

When he was admitted into the hospital for the final time, we decided to stop the Tarceva as the impact on his body was too great. His quality of life suffered and due to the nature of cancer we were not 100% sure it was effective.

I am not going to go through the last 4 days of his life at the moment. I feel as if I let him down and I should have seen the signs, called and questioned the doctors more. I guess I’m just punishing myself.

“I love you dad, may Allah forgive all of your sins and make your time in the grave confortable and stress free. I pray to Allah that he guides you to heaven on the day of judgement.

We will pray for you every day and give charity in your name to help you with your journey.

We all miss you greatly, my two younger brothers have lost the centre of their lives. I pray that I can help them and mum.

When you were diagnosed you cried, I came and took you home. That day I will never forget, all of our world came crashing down. We were stong though and decided to fight.

I will continue the fight and make sure that I publish as much as I can to help others who are forced to take this journey.”

Cherish every minute you have with your loved one. There are times where you will slip into your life and try and take a break. Those are the times you will regret. Listen to your loved ones, and write down things they talk about. When they are gone, all you will have is memories and pictures but no one to tell the story.

We picked up the Tarceva 150mg tablets from Boots this afternoon. Boots have been very kind and were able to order the Tarceva within 48 hours. All be it, it cost us £1980.

We will start the treatment tomorrow morning.

My father was admitted to hospital today due to  extremely high calcium levels in his blood. Luckily this was picked up in a blood test performed at the LOC last Tuesday.

I received an email from the LOC yesterday raising concern that my fathers calcium was at 3.57 which is very high. We managed to contact the nurse in the local hospital who was very kind and arranged everything for today.

I find it strange that in all of the blood tests performed, the Calcium levels were not checked. If these levels had carried on, my father would be in a lot of trouble.

On a positive note, my father has been given the IV medication and is back home now. He sounds a lot better and I’m hoping his appetite improves and he puts on some weight. Perhaps the high Calcium levels are to blame for his weight loss and ‘lack of taste’ problems.

Following is taken from : http://www.cancerhelp.org.uk/help/default.asp?page=12569

Symptoms of hypercalcaemia

It is not always easy for a doctor to spot that you have hypercalcaemia.  You may not have any specific symptoms.  It may be that you just feel unwell or a bit “off colour”.  And the severity of your symptoms doesn’t always match up to the calcium level in your blood.  People with a mildly high calcium level can have very severe symptoms, and people with a very high calcium level may only have mild symptoms.  Many of the symptoms are common in the advanced stages of cancer, even in people who do not have hypercalcaemia. 
All this can make it difficult for your doctor to pick hypercalcaemia up.  But generally speaking the first signs include

• Extreme tiredness (fatigue) and lethargy   
• Feeling weak   
• Not wanting to eat much (anorexia)   
• Constipation   
• Loss of concentration and interest in doing things 
• Mild confusion

If the hypercalcaemia is not treated then the symptoms become much worse and can include

• Feeling and being sick   
• Drowsiness   
• Passing large amounts of urine   
• Feeling very thirsty   
• Dehydration   
• Confusion   
• Agitation 
• Muscle spasms, tremors. 
• Bone pain and weakness   
• Irregular heart beat   
• Difficulty thinking and speaking clearly   
• Coma and finally death, if not treated

Because calcium plays a role in the normal working of the brain and spinal cord, patients with severe hypercalcaemia may also

• Have fits   
• Be unable to coordinate muscle movement which can affect walking, talking and eating   
• Have changes in personality   
• Have hallucinations

If you have hypercalcaemia, you will need treatment from your specialist.  It can be a life threatening condition if it is not treated.  You may have to spend a day or two in hospital to get your calcium levels down. 

Published Date: 16 November 2007

Location: Sunderland

A life-saving cancer drug is now available on the NHS for patients in Sunderland and Durham.

Erlotinib – known as Tarceva – is being offered to patients on the NHS in the North East after manufacturers agreed to cut its cost.
The decision comes after consultation with the North East and Cumbria Cancer Drug Approvals Group – which includes doctors and other professionals involved in the care of patients with cancer – and lobbying from individuals and charities.
This means that lung cancer patients and their consultants now have a wider range of treatment choices after a first chemotherapy treatment.
Financial guidance for the drug is still pending from the National Institute of Health and Clinical Excellence (Nice).

The drug approvals group has agreed that Tarceva can be used when a patient has stopped responding to their initial treatment for non-small-cell lung cancer.
The drug will also be available to patients who may have already started a second treatment for lung cancer, if clinically appropriate and if they will benefit from the drug. It is not approved for use when two previous different chemotherapy regimes have failed.

Charity The Roy Castle Lung Cancer Foundation has welcomed the move and is urging Nice to approve the drug.

Mike Unger, chief executive, said: “It’s a great decision. It’s great news fro everybody who has campaigned for this area. We hope it puts the message across to other PCTs that this drug is necessary and that it does work and that clinicians and their patients have the right to have it.”
On average 200 people die each year in Sunderland due to lung cancer, which represents seven per cent of all deaths.

The full article contains 285 words and appears in n/a newspaper.

http://www.sunderlandecho.com/news/Cancer-drug-now-available-to.3494685.jp

I know I have not written for a while, so this is going to be a long post.

The Tarceva treatment is/was going well. My father has developed a rash and was reasonably well although quite weak. The night sweats had reduced but his rash coupled with the pain in his recovering knee made his quite miserable. 

Anyhow, last Tuesday we went to see our new Oncologist. The meeting did not go as I had hoped. The plan was to move onto first line chemotherapy as soon as the Tarceva had run out, however the Oncologist decided that it was not an option. Chemotherapy was not being offered due to the potential harmful side affects.

This was a huge blow for my father, but I tried to shield the harsh truth from him as much as I could.

The came the Tarceva. The Oncologist advised that my father should stop Tarceva because of the bad Rash. He said the cost was too high and it was not offered on the NHS. In fact, he even went as far to say that Scotland would go bankrupt if they kept it up. The chances of Tarceva working was 10% according to him. Anyhow, I pushed for an X-ray to assess whether the medication had any impact at all. There was a blood test also performed and steroids prescribed to help increase my fathers weight.

The X-ray pictures proved to be inconclusive. At first he tried to compare the latest Xray picture with an old CT scan as he did not have an old X-ray on file. His first words were that he thought the tumor had increased. Luckily I had a cd containing all previous scans. Comparing the two X-rays, one dated 16th September and the other 13th November, we could not establish whether the Tumor had grown. My own personal feeling is that no growth is a positive sign that the Tarceva is in fact working.  However, I then pushed for a CT scan to be performed to make another comparison. My request for a PET scan was refused.

We left that meeting with our heads down, but also hope that the Tarceva may be working. 

I later received a call that my father was in need of a transfusion as his HB levels were below 9. This was scheduled for Wednesday morning.

As the Tarceva was due to run out on Friday, I decided to contact the LOC and speak to the Oncologist who prescribed the initial Tarceva. He agreed that a rash was a good sign and by virtue of the Tumor not growing it was a positive indication that the inhibitor was working. However, before prescribing another month of Tarceva the Oncologist would like to see my father and compare the X-rays for himself as well as perform a blood test. An appointment has been made for next Tuesday.

Meanwhile, the Tarceva has finished and we wait for Tuesday to arrive.

Gave dad his second dose of Tarceva this morning. We also decided to give him a water only diet with plenty of warm water until 12pm. I think that, coupled with the herbal tea helped to detoxify him. He told me today that he did not have any stomach pains.

With regards to the Tarceva, so far I have not observed any adverse side affects. That said, I have read in some places that having a rash is a sign that the Tarceva is working. It should take 72 hours or so for the medicine to work though.

All we have is our prayers.

I manage to pick up the Tarceva tablets this evening. Probably the most amount ever I have spent on….something so small.

It’s just a white box with some pills in. I knew they were expensive but hey, for £2000 you would expect something a little more attractive no?

I guess not.

I’ve decided to wait until he comes home before we begin these. I’ll have to email the Oncologist to let him know that we are ready to go ahead. I’ll scan and publish the scary side affect list tomorrow.

THOUSANDS of lung cancer patients in Scotland are to be given access to the world’s first once-a-day pill to treat the disease, after many were denied it on the NHS.

The Scottish Medicines Consortium (SMC) yesterday approved the drug Tarceva for use by patients with an advanced form of the most common type of lung cancer.

This means health boards will be obliged to fund the drug – which costs £1,700 a month per patient – in patients whose doctors think they will benefit from the treatment.

Campaigners said many patients had been denied the drug by health boards in Scotland and were told the money was not there to pay for it.

The Roy Castle Lung Cancer Foundation said it had received calls from patients and their families desperate to get the drug, which can increase life expectancy by months. But many do not live long enough to see through their appeals and challenges to health boards.

Dr Marianne Nicolson, a leading lung cancer specialist at Aberdeen Royal Infirmary, said the SMC’s decision to recommend Tarceva was “fantastic news” for doctors and patients. She said Scottish patients were the first in the UK to benefit from the drug, which is unlikely to be reviewed by the National Institute for Health and Clinical Excellence for use in England and Wales before 2007.

“This drug is not a cure, but it makes a massive difference to a patient’s quality of life,” she said. “They are likely to feel less breathless, have less of a cough and less pain.

Dr Nicolson said that the drug could also give patients valuable extra months with their families. In some cases, where patients responded well to the treatment, they could live for years rather than months.

And as the drug is in pill form, it can be taken in the comfort of patients’ homes rather than them having to spend hours in hospital on a drip.

About 4,500 people are diagnosed with lung cancer in Scotland every year, with rates of the disease much higher than elsewhere in the UK.

Tarceva has been recommended for use in patients with advanced non-small cell lung cancer who have failed to respond to one other chemotherapy treatment.

This could make the drug suitable for more than 1,500 patients every year.

Drug trials show that 31 per cent of patients taking Tarceva were still alive a year after treatment, compared with 20 per cent of those on a placebo.

Tarcevea also reduced the risk of the disease progressing by 39 per cent.

Currently, half of lung cancer patients are not offered active treatment for their illness because the options available are not considered to be appropriate or the person was not fit enough to receive it.

Dr Nicolson said the cost of the Tarceva was high, but the effect on patients’ quality of life and the benefits of being able to spend longer with their families were immeasurable.

Susan Christie, of the Roy Castle Lung Cancer Foundation, said the SMC decision should mean that patients are no longer denied access to Tarceva on the NHS.

“A lot of patients have been told by their doctors that there is this drug that could help them, but the health boards say they cannot pay for it,” she said.

“A lot of patients have appealed against the decision, have written to their MSP and considered what legal action they could take.

“But by the time they have gone through this process it is often too late.”

Amjad Hussain, 37, of East Kilbride who has lung cancer, has been taken Tarceva for seven months. He said the drug had made a massive difference to his life, allowing him to spend more time with his wife, Angela, and their children Nadia, three and Haylie, nine.

“After I had been taking the drug for a few months I had a scan and it showed that the tumour had shrunk,” Mr Hussain said.

“It has been really good and I am glad I have been allowed to take it.”

Mr Hussain said it was a massive shock when he was diagnosed with lung cancer in November 2002.

“I have never smoked, I played football, I went to the gym and I was fine.

“I ran a hot food takeaway, so I was not exposed to smoking or anything.”

Source: http://thescotsman.scotsman.com/scotland.cfm?id=867522006

By LYNDSAY MOSS

Mentally drained after seeing the GP we rushed to Carmarthen for our consultation with the private Orthopedic surgeon. When we finally got there the meeting went well. My fathers GP had recommended him and has sent all the relevant details. The GP understood my fathers position and was very empathic. He put us all at ease and barring the go ahead from the anesthetist he agreed to operate. He reiterated that my father would require several units of blood to raise his hemoglobin levels before the operation.

Hearing the good news my father was very happy and in good spirits. If he is going to live out his last days comfortably, pain free mobility is a god send.

The Orthopedic surgeon has given us a date of 29th September, two weeks from now.

It will cost us £10,000 pounds.

We decided that we would not go to the hospital for our afternoon appointment. After all, we already knew the PET Scan results and I had taken the liberty to make copies of the Fax and blood results.

Speaking to the respiratory nurse our lung specialist has said that Tarceva has had mixed results and he didn’t seem too positive about it. We are still awaiting the results of the PET scan but I am little confused about Tarceva now. I’ll do some research of my own to gain a better understanding.