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.

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.

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.

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.

I was  quite hesitant in starting the Tarceva today as my father still has problems with his stomach and digestive system. I just didn’t want to exacerbate the issue. However, this morning as soon as dad got up he said he wanted to start the Tarceva. We had to start it someday and today was a good a time as any, and besides it would really make him feel better mentally. 

Tarceva should be administered one hour before food or at least two hours after food. As it was 8am in morning and dad had not had breakfast yet I decided to give it to him.

I closely monitored him all day today. Besides the stomach pain he is not  reacting adversely to the Tarceva. It’s the first day, and when we spoke to the Oncologist, he did say we would know within 48 hours whether it is working.

I brought my father home from the hospital today and thank god he is feeling a lot better. The problem  with hospitalization is that for some reason the patient feels worse as time goes on. I just hope he starts to eat regularly at home. I’ll wait a day and slowly begin the nutritional program. As he’s now going to live here with me, I can monitor exactly what he has to eat and make sure that the supplements are administered appropriately.

Depending on my fathers health, I am hoping to start Tarceva on Saturday. Between now and then, we have a district nurse visiting every day to administer the 40mg Clexane injections, a member of the Acute response team also visiting to go through some physiotherapy with dad. On Saturday morning the district nurse will remove my fathers staples (knee).

I just hope my father starts to eat more at home.

The consultation at the London Oncology Clinic was very positive. The consultant we met with was very friendly, understanding and honest. At no point during the meeting did he try and sell the clinics services or deter us from using the NHS. My brother in law (No. 2) and I found this so reassuring and a complete contrast to the Dove clinic’s antics.

He was surprised that my father had not already started 1st line Chemotherapy and did not agree with the NHS odds of 1 in 20 of it being effective. He discouraged the use of Tarceva as my father did not match the profile of a person who would most likely benefit from it (non-smoker, female). In addition to this, Tarceva was nearly always used as a follow treatment where chemotherapy and radiotherapy had failed, not as a first line treatment. In addition to this, the consultant explained that the first line NSCLC chemotherapy agents to tackle sqaumous cell cancer offered by the NHS was the same as what he would offer privately. It would be better to push for this via the NHS rather than pay for the same treatment.

I then explained that my father was due to go through a knee replacement operation next week. This actually changed things. The consultant explained that my father could not go through Chemotherapy whilst recovering from the surgery. Instead, he suggested we start Tarceva during recovery and move onto Chemotherapy once my father is string enough after approximately 3 -4 weeks. At the end of the day, there is a small chance that Tarceva may work and it is better to try something that nothing.

So finally, we have a plan of attack and my father can go ahead with the knee surgery and we get to try out Tarceva.

I received a response from Dr West of Onctalk.com yesterday in response to my question (http://onctalk.com/bbPress/topic.php?id=680). The idea of embarking on Chemotherapy whilst my father is not immediately suffering from serious symptoms is a scary one. In addition to this, the knee surgery element of this whole situation is distracting. We understand the DVT and Infection risks, but how soon after the surgery can we begin Chemotherapy? Or can we?

The standard treatment for stage IV NSCLC is platinum-based doublet (2 drug) chemotherapy. More frail patients are often treated with single-drug therapy. Avastin is not recommended for patients with squamous cancers due to the rather considerable risk of serious and even potentially fatal bleeding complications. Tarceva has really been studied best in patients who have already received chemotherapy, and it is not commonly used as a first line agent. It is a strong consideration as an early (potentially first line) treatment in never-smokers, those with known EGFR mutations, and often those with bronchioloalveolar carcinoma, but those special considerations really don’t apply here.

If there is a delay in the way the NHS doctors are pursuing this, I believe it is because of special circumstances about his case. Standard treatment would be to start chemotherapy promptly. I would have to defer to the doctors there who know his case. I will also say that in patients who have no symptoms, it is sometimes reasonable to wait before starting treatment, because the treatment may well cause symptoms while the cancer is not, so by definition that will detract from quality of life.

-Dr. West

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

I have posted a little request for more information on www.cancerforums.net. I have been very grateful for the replies received.

Please check out the post http://cancerforums.net/about7167.html