My Father has Lung Cancer

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.

abdulazizuk Chemotherapy, NSCLC, Surgeon, Tarceva

I have finally received both referral letters from my fathers GP.

One is to arrange a second, second opinion from another Orthopaedic surgeon, this time from Bupa.

The other referral is more importantly for the London Oncology Clinic. Hopefully they will see us soon.

After reading some of the advise from Dr. West and also some responses from the cancerforum.net site I am convinced that we shouldn’t go ahead with the knee op.

I’ll talk to my father this weekend.

abdulazizuk Chemotherapy, Knee, Letter, referral

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

abdulazizuk Chemotherapy, Tarceva

We are now considering obtaining a second opinion from the London Oncology Clinic.

Additionally, here is some information my sister has managed to gather to aid us in our decision as to what route to take.

Stage 4 (Cancer Research)

Stage 4 is the most advanced stage, where the cancer has spread. Understandably, the survival statistics are lowest for this stage. Unfortunately, lung cancer is often diagnosed late. Almost half of all those diagnosed with non small cell lung cancer already have stage 4 disease.

People diagnosed at this stage are mostly treated with chemotherapy to relieve symptoms. Between 15 and 35 out of every 100 people (15 - 35%) treated for stage 4 lung cancer will be alive a year later. For those not fit enough to have chemotherapy treatment, this figure drops to about 10 out of every 100 people (10%).

On average, only about 2 out of every 100 people (2%) diagnosed with stage 4 non-small cell lung cancer would be alive 5 years later.

Commonly used Cisplatin, Carboplatin & newer one Gemcitabine (Gemzar). Find out which they will use in the the local hospital.

In June 2001, the National Institute for Clinical Excellence (NICE) recommended that chemotherapy should be considered for people with non small cell lung cancer who were not likely to be cured of their cancer. They say that chemotherapy with either gemcitabine, paclitaxel (Taxol) or vinorelbine, together with a platinum drug (for example carboplatin or cisplatin) should be the first choice for people with advanced non-small cell lung cancer (stages 3 and 4), as these are likely to be the most effective drugs. If you have had chemotherapy before and the cancer has continued to grow or spread, they recommend treatment with docetaxel (Taxotere). Your doctor will talk to you carefully about the possible risks and benefits of further treatment. Not everyone is suitable for it. It will depend on how fit you are, and how able you are to cope with side effects of more chemotherapy.

In June 2005, erlotinib was licensed in Europe for patients with advanced non small cell lung cancer that has continued to grow despite having chemotherapy. We won’t know how widely available erlotinib will be on the NHS in England and Wales until NICE (the National Institute for Health and Clinical Exellence) publish their final guidance on this treatment. In June 2006 the equivalent body in Scotland, the SMC (Scottish Medicines Consortium) approved erlotinib on the NHS in Scotland for treatment of advanced non small cell lung cancer. Your doctor can only prescribe erlotinib in this situation if you’ve already had at least one chemotherapy treatment before that hasn’t worked. You must also be able to have chemotherapy with docetaxel (Taxotere).

Anaemia - To constantly make red blood cells and haemoglobin, you need healthy bone marrow, as well as iron and certain vitamins. Question what it means by the report on Dads bone marrow, is the cancer causing it?

http://www.tiscali.co.uk/lifestyle/healthfitness/health_advice/netdoctor/archive/002208.html

Unfortunately the chemo drugs Ive mentioned also exacerbate anaemia, need to find how to alleviate it, whether intravenous iron will help or a blood transfusion.

abdulazizuk Biopsy, Chemotherapy, The First Time

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

abdulazizuk Biopsy, Blood Test, CT Scan, Chemotherapy, Knee, PET Scan, Sqaumous, Tarceva

abdulazizuk Chemotherapy, GP, PET Scan, Radiotherapy

After an anxious wait of 10 days, the PET scan results were finally revealed to us yesterday.

Now you would think, the results would have been revealed to us from someone we knew, such as the lung specialists or the respiratory nurse, or even an Oncologist (if we had one). Nope, not this time, as usually the lack of compassion, empathy and experience showed it’s ugly face again.

The plan for the day was to visit my fathers GP to go over the blood test results that were taken two days before. Then we were to attend an appointment with a private Orthopedic surgeon to discuss the possibility of replacing my fathers knee privately. The last call on our schedule was to visit the hospital and speak to the lung specialty with regards to the PET scan results.

In reality, expecting to see my fathers GP of 15 years, we instead were seen by a new part-time GP. Expecting to go over the blood results, we were told that the PET scan results had been received via fax that morning from the hospital.

After trying to convince the GP not to give the results out as we had an appointment with the lung specialist in the afternoon, the GP pronounced it was my fathers decision and if my father asked for them he was obliged to reveal them.

The results were not good, the cancer had spread and there is no possibility of radical radiotherapy or surgery.

We spent 20 minutes consoling my father, I tried to re-iterate that these results didn’t really matter as the risks verses benefits of the offered Radiotherapy procedure meant we were not going down that route anyway. This was just another knock out punch, something I promised myself would not happen, I wanted to protect my my fathers already very fragile mental state. The GP then said that the only thing they can do is address each symptom as it occurs and make my fathers last days as comfortable as possible.

I then asked about the blood results, the doctor saw that the hemoglobin levels had dropped to 7.9. He advised that a blood transfusion was needed as it has dropped below 8. He made the necessary phone calls and I was asked to call back on Monday.

Our next port of call was the Orthopedic surgeon.

abdulazizuk Chemotherapy, GP, Knee, Radiotherapy

Today was the first day of the holy month of Ramadan. I have decided that this year I will try my very best to pray 5 times a day. I’ll pray for my fathers life, pray for strength, pray for forgiveness and pray for guidance.

It has again been quite a fruitless day. I chased the respiratory nurse at the hospital this afternoon only to be told that the results will be given to us in person tomorrow. Apparently my fathers case and results were discussed during the panel meeting and the specialist would like to discuss the next step with us.

This is where I have a problem. Every time my father has attended a hospital or clinic he has been disappointed and the experience has chipped away at his moral and mental strength. He is drained at the moment and I am afraid the meeting at the hospital will do more harm than good. Unless of course it is very very good news, which in our experience has not been the case.

The diet and nutritional supplements he has been taking have proved very positive. The day sweats, shivers and fever have reduced. Exactly what the palliative treatment would have accomplished. Chances are that we will still go for radiotherapy or chemotherapy though.

So tomorrow we will be going to the GP to discuss the results of the bloods he gave yesterday, then we are off to see the private Orthopedic surgeon and lastly if we rush we will be able to see the lung specialist who will tell us the bad news about the PET scan results. I’m being realistic.

abdulazizuk Chemotherapy, Knee, PET Scan, Radiotherapy

I am finding whilst reading the various cancer forums that chemotherapy is indeed an option for NSCLC, maybe not for sqaumous but there must be something awailable. Just check out the extract below….why did the doctor tell us that it is better to go for the radiation therapy route as a palliative measure?

“There is a lot of chemotherapy agents available for Non-small cell lung cancer (nsclc). The most common type is adenocarcinoma. My husband is also Stage IV adeno and had it all over and between both lungs. He has also had some bone mets. He is going on 2 1/3 years since diagnosis. Some people respond very well to the chemo and there are drugs after the first line treatment that many people take very successfully. Tarceva is a daily pill, after first line, that I’ve seen people take for 2 years.”

We will push for a second optionion next week and I will ask is there is a drug available for Sqaumous cancer.

abdulazizuk Adenocarcinoma, Chemotherapy, Sqaumous, Tarceva

On the 21st August my father, myself and brother in law attended an appointment with the Lung Specialist. It was the news that we were dreading, praying and hoping not to hear. The biopsy results confirmed that the large grapefruit like mass was as suspected a grapefruit sized malignant tumor. The same sqaumous non-small cell cancer cells had been detected as in the brushings obtained during the broncoscopy the week before. The consultant was of the opinion the cancer had been gestating for the last two years.

We felt like the world had ended as the consultant spoke. Then things went from bad to worse.

The consultant showed us the CT scan pointing out the tumor. It looked very big and he was fairly sure that the lymph nodes were infected preventing the first option of the 5 he then gave.

Options:
1. Surgery
The size and position of the tumor as well as the strong possibility that the lymph nodes are affected prevents us from choosing the surgical route. Even if the tumor is removed, the lymph nodes would in time infect the other lung. How much time, well the consultant spoke of months rather than years. Additionally, the tumor is very close if not on the lung lining making surgery an even riskier prospect.
2. Radical Radiation Therapy
This is an option, an option that was given during the panels MDT meeting. The premise being, reduce the size of the tumor and the lymph nodes killing the cancer thus buying more time. The drawback, in the process of doing so, as the lymph nodes are located in the centre of the chest there is a high possibility that the gullet would be permanently damaged rendering my father unable to swallow. In addition to this, there will be some major scarring of the left lung which will impact my fathers breathing and extreme tiredness. The consultant was unable to tell precisely how much, but basically said, ‘some patients can suffer some shortness of breath, others can be wheel chair bound. Chances of success are between 20%-30%, success is an increase of around 4 months life. Before moving forward with this option, a PET scan is required to access whether the cancer has spread.
3. Chemotherapy
As this is sqaumous non-small lung cancer, from past experiences radiation therapy is more effective. chemotherapy can be used perhaps afterwards to kill any existing cancer cells in the body.
4. Gentle/Palliative Radiation Therapy
This is to reduce any symptoms such as shortness of breath and allow my father to improve the quality of life. The aim is not to extend life but to provide a better life. The side effects are tiredness and some shortness of breath.
5. Do nothing
My fathers symptoms will really begin showings and he will most likely survive up to 6 months.

The consultant advised that there was a lot to think about and honestly gave my father between 6-12 months survival. We highlighted that at present the only symptoms my father is displaying is some very mild shortness of breath and daily sweating and some fever. The actual pain is originating from his arthritic knee which he has been treating with painkillers for the last two year whilst waiting for replacement knee surgery.

The consultant agreed with us that the knee is having a large impact on the quality of my father’s life and has decided to write a letter to the knee specialist advising that he urgently progress this as soon as possible before my father begins treatment for his cancer. We are prepared to do this privately if required.

So the plan is as follows:

1. Replacement knee surgery / Make appointment for PET Scan
2. Change my fathers diet drastically to increase the strength of his immune system
3. Begin large dosage of cancer fighting supplements
4. Obtain fathers test/medical records and see consultant at Dove clinic to talk about IV Vitamin C therapy.
5. Once knee is relatively healed, begin mild radiation therapy moving on to radical radiation therapy.
6. Investigate chemotherapy option.

We are also hoping to obtain a second opinion once we have a copy of the medical file.

abdulazizuk Biopsy, Chemotherapy, Knee, NSCLC, Options, Radiotherapy