Abdul Aziz 1946 – 2008

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.

Tarceva – Round 2

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.

High Calcium in blood

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. 

LOC appointment

The appointment in the LOC clinic went as well as can be. The oncologist reviewed the new and the old X-Rays and noticed a reduction in fluid. However, this did not prove conclusively that the Tarceva has had any affect.

The overall view was that if my father was feeling better, his night sweats had reduced, the tumor had not increased in volume and the fact that my father had experienced quite a bad rash on his face and head, the Tarceva has had a positive affect. That said, the LOC oncologist reiterated our local oncologist’s view that a CT scan will give us a more conclusive answer.

In the interim, the LOC oncologist had prescribed another month of Tarceva. It is better to be receiving a treatment than nothing at all. At least while we wait for the CT scan on the 29th of November.

Cancer drug now available to NHS patients

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

Update: Tarceva complete and the new Oncologist

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.

Tarceva 150mg Day (15)

The past 11 days have flown by. We have finally completed the sale of my fathers business and he has now ‘properly’ moved in with us. It has been a tough two months for all of my family. After 20 years my father has finally retired. It is so sad that in retirement he is facing the greatest challenge of his life.

The Calaxane injections stopped last Saturday and the physiotherapists have also stopped visiting. The GP and nurses are very happy with dad’s progress and are astonished at how clean the infection free the wound is. There is however still a chance of DVT and infection so it is prudent that we look out for the tell tale signs.

Over the last 10 days my father was doing well, he was eating more and as sleeping well. The last 3 days have been rather different. He has slowly developed a rash on his face. This was expected as it affects 75% of Tarceva users, but we did think it would develop earlier on. The pain in his stomach has returned and his entire leg is in pain. I spoke to the emergency nurse this morning and she said that the switching of co-codamol to paracetamol may be the reason he is experiencing more pain than he is used. We were forced to do this as the capsules had run out and dad can’t swallow the tablet form. She suggested taking Tramadol which was prescribed by the hospital on discharge. Dad decided to carry on with the round tablet form of Co-codamol and so far his pain has eased.

What’s concerning me is the level of pain he felt as the Co-codamol wore off. He tail bone was hurting, stomach paining, leg paining and lower back. The lower back  and tail bone is probably due to the prolonged time he spends on the sofa. Still, I will mention this to the GP next week.

Last week, my father underwent some blood tests that I requested. His LFT figures are abnormal and he still has a high white blood cell count. The GP wanted to find out if there was an infection in the knee. I’ve asked the GP to compare the results of the old bloods with the new ones. My fathers hemoglobin levels are now at 9.1.  I have informed my fathers GP that Tarceva has affected LFT’s. Once we have the results I will contact the LOC and ask for some advice.

Tarceva 150mg Day (4)

Dad felt very up beat today. He did not suffer any pain in his stomach during  the night and all day. He has finally got some of his appetite back and has found a taste for herbal tea…not sure how long that will last.

Not sure if the Tarceva is working as he has not developed any of the expected rash. However he may be of the 25% who don’t develop any rash. He is still suffering from night sweats although the frequency and intensity is less.

Tarceva 150mg Day (3)

Spoke too soon yesterday. I received a call at 3.30am from dad who was complaining about a very painful stomach and aching knee. I cave him some warm water with a coupe of co-codamol pils. He settled down and fell asleep after an hour or so. 

The rest of the day he felt ok. There are no signs of rash or any other adverse side affects from the Tarceva. He seems to be eating more and his sweats have died down. Not sure if that is the Tarceva though as a reduction of his sweats was noticed upon discharge from the hospital where they refused him access to a fan for prolonged period of time. The nurse there was worried about his body temperature dropping, which it did whenever he used the fan to dry the sweat.

Tarceva 150mg Day (2)

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.