Hello All Just wondered if anyone else here had the same experience as my father.
He has just received the news that after four cycles of Carboplatin/Alimta nothing has reduced - in fact there has been a little progression....
His consultant has suggested a break until the new year and then to try Navelbine which she says has produced good results...also the possibility of Pembrolizumab as he is PDL1 positive...
we are never actually shown the scans - is this normal...we just rely on what they tell us...which I'm sure is correct but would be nice to visually take things in..
should we be asking about tumour markers - something which I have seen mentioned in various posts but never mentioned in consultations - would appreciate any advice on this?
Thanks everyone and good scan results to you all...
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SJR43
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Sorry to hear your Father has not responded to his current regime of chemotherapy. Navelbine is a different type of chemotherapy drug, however the Pembrolizumab is a type of drug called immunotherapy. Pembrolizumab is a type of immunotherapy. It stimulates the body's immune system to fight cancer cells.
"Pembrolizumab targets and blocks a protein called PD-1 on the surface of certain immune cells called T-cells. Blocking PD-1 triggers the T-cells to find and kill cancer cells." from Cancer research UK. This link explains about the medication:
Immunotherapy is sometimes used as a second line treatment i.e. if chemotherapy has not produced a good result and only those with the cell PD-1 are eligible to have Pembrolizumab. It is encouraging that your Father has different treatment options. Perhaps discuss this with his lung cancer specialist nurse (if he does not have one, this can be requested via the specialist of GP)
The tumour markers are the blood tests, scans etc that they do. Your Father is within his rights to ask the specialist or nurse to go over these with him, as well as explaining the scans. Hopefully this will help you both in the understanding of what is happening and the treatment options.
Sorry to hear about your confusing time - it can be very stressful . There are different types of lung cancer, different treatments for different stages/markers and as the helpline has also explained, immunotherapy isshowing some promising results for those with PDL1 positive disease. Not all patients are eligible for some treatments and one of the benefits of 'personalised'/'targeted'/stratified therapies are that they look at the detailed specifics of the patient and discuss amongst a team (usually referred to as a multi disciplinary team) about the best way to treat patients as well as following national guidelines (that can differ from country/healthcare system to another). Please be aware that many of the online communities attract international responses and not all systems have access to the same treatments. When I was shown my CT scan 7 years ago, it meant nothing to me - not only did I not know what I was looking at, I didn't know what was right or wrong with it and the explanation given left a lot to be desired. The Trust where I was diagnosed has changed the way it breaks news as a result of my feedback at the time.
There has to an element of trust between the patient/carers and the medics but you can always ask to see them and for them to be explained to you. Roy Castle website has a resources section and information guides about the different types of cancer as well as types of treatment that you may find useful. (it includes contributions/comments from patients and explanations. Lung cancer treatment has developed a lot in recent years and there are a number of clinical trials underway around the world that sometimes change clinical practice so the more that is learnt , the more 'precise' a treatment can be for an individual which should result in valuable time not being wasted on treatments that definitely won't work. As your father has found, some don't respond to the first 'line of treatment' which is then when some of the newer alternatives may be offered if certain conditions are present which it sounds as if this is being explored by his clinician.
I don't know in what role you are acting for your father - but it's usual for the patient to be shown them but unless you're present or have power of attorney for your father (if, for example, he might not understand the explanation), or it may be that this was done not when you're present. When my father was in and out of hospital all last year with bowel cancer , I asked a lot of questions for him to ask the medics but his own attitude (despite being fully aware) was that he didn't want to know. He just wanted to get home! good luck.
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