DECIDED AGAINST CHEMOTHERAPY?

[bevbez]

Hi there everybody. Whilst I hope there is nobody in the same position as me would like to know if there is! Diagnosed with stage 4 lung cancer in September. Oncologist advised surgery out of the question as in both lungs, and offered a course of Chemotherapy over 3 weeks consisting of infusion and then tablet. He then said after the treatment they would see if it was worth giving any more! Not very happy about this and as my husband had Chemotherapy and really suffered prior to his death, and my best friend has gone through Breast cancer with a mastectomy and Chemotherapy and as I have seen first hand what Chemotherapy can do to someone I have decided against the Chemotherapy treatment. Just taking things day to day at the moment. Trying to stay positive and fortunately got the backing of my family. Anybody got any other ideas?

[Billculbard]

Hi there.

No easy answers, so you have tough decisions to make. I know lots of folk have bad experiences with chemo, but not all. Personally, my experience with it was fine. Obviously not the best time of my life, but it worked out okay. Suggest you talk things over with your CNS or Macmillan, for best advice.

Wishing you the best.

Bill

[bevbez in reply to Billculbard]

Hi Bill

Thanks for your comments. My personal feelings are at the moment that even though I don't want to know how long I have got, they don't believe I am going to get better so why put myself through the rigours of Chemotherapy and a drug regime when it might only give me another couple of weeks or months but with the prospect of feeling sick all the it time doesn't appeal to me. I might change my mind in the future but that's how I feel at the moment. Thanks for your concern.

Beryl

[Hidden]

Hi there,

I have to agree with Bill.

We are all individuals and react differently to Chemotherapy.

I would, like Bill, strongly recommend that you discuss treatment options with your Lung Cancer Specialist or Macmillan Nurse. They will be able to provide you with honest and up to date information.

All the best,

Beth.

[bevbez in reply to Hidden]

Hi Beth

Thanks for your comments and as you will see I have replied to Bill and I hope you understand my reasoning. I agree with you people do react differently to Chemotherapy but it was the only treatment option given to me as I asked about alternatives and was told there were none that I could have, not viable to operate or have radio therapy until I had a course of Chemotherapy, I am keeping an open mind but the only contact I have had with the Lung Cancer Specialist nurse has been at the support group where your representative Beth attended and I learned more about your site. There's no chance to discuss how I'm progressing without treatment as they have not made me any more appointments to see the Oncologist. Once again thanks for your care.

Beryl

[Hidden]

Hello, I totally agree with Bill and Beth we are individuals and you may not react in the same way as your dear husband. You didn't say how long ago your husband past away, but things move on at speed regarding cancer and chemotherapy also changes with the introduction of new drugs.

Like you the oncologist said they would give me a course of chemotherapy (Avastin, Carboplatin and Pemetrexed) and then see if I should continue. It hasn't shrunk the tumour, or the cancer in the pleural effusion but it is halting it. The recent scan has shown no further growth. I am now continuing with chemotherapy and am on my 14th.

Its wonderful that you have the support from a loving family, being surrounded by caring peope and having a positive approach is paramount. Talk all option through, you may sail through chemotherapy only by trying it will you know. The decision at the end of the day has to be yours.

I truly wish you all the very best, take care and my thoughts are with you. Tallulah x

[bevbez in reply to Hidden]

Hi Tallulah

Thanks for giving me your thoughts. I am so happy for you that there has been no further growth and hope this continues indefinitely.

I am still in a bit of a whirl about everything, but as you say there have been lots of new drugs since my husband had his treatment, which initially was a different type of cancer but I think I am a bit stubborn and after being self sufficient for so long I am not used to being sick so don't relish the thought of having the treatment and then having to rely on other people to look after me. I do still have the option to try the Chemotherapy if I want to (I too have been offered Carboplatin but also Vinorelbine), so maybe I will change my mind, but at the moment I am deciding against.

Once again thanks for your thoughts and concern.

Beryl

[Hidden]

Hi Beryl,

it is your decision but one thing you said and no one else has commented on is life. You said it may give you another few weeks or months, well there are many people with stage 4 that have lived for many years, Bill is now at 12 years. I am stage 4 and have now made 20 months.

Can I ask have you been tested for the gene mutation? as you said you have been offered chemo then tablet? I am on a 'tablet' with very few side effects, initially a bit of a rash on my face and dry skin but after 6 months that has stopped. I am positive for the EGFR gene mutation.

There are many new drugs available these day's.

Please think about it very carefully.

Lyn x

[bevbez in reply to Hidden]

Hi Lyn

Thanks for your comments. Nobody has mentioned being tested for gene mutation but if they do the test if you have had anybody else in your family with cancer then I haven't. I did ask about a tablet called Tarceva as my friends mother is on it and seems to be doing very well but I was told I was not eligible for it. I just feel that if I have the Chemotherapy even though I am quite a strong person I will not be able to cope with any of the side effects that may occur so possibly I am being a bit of a coward but that is how I feel at the moment, maybe soon I will feel differently and accept the Chemotherapy but not at the moment..

Once again thank you for your concern and comments and hope that you are feeling better every day.

Beryl

[Mafan in reply to bevbez]

Hi Beryl,

I realise your comments are a few months old. I wanted to share my experiences with you. I was diagnosed May 2011 with NSCLC. I had an operation with a view to remove 2 lobes of my right lung. It was referred to as curative! Unfortunately when they opened me up it was obvious that the cancer had spread. They stitched me up and I was devastated when I woke up and was told the result.

I had Radiotherapy and then 4 cycles of Chemo. The only symptom from Radiotherapy was tiredness which did not effect me until the 5 th week. I was renovating a house at the same time!! Madness. I then started 4 cycles of Chemo. Yes I felt sick but I was given anti sickness tablets which worked and

I also found it difficult to eat the first 3 days but it passed. I did not lose my hair. I rested week one, gather my strength week 2 and enjoyed week three by going out and visited friends etc.

I had anticipated the worst and was pleasantly surprised! I was given a year I'm still here 23 months later - 2 years in May. I know without treatment I wouldn't be here. I feel great, I travel abroad, visit family, I have experienced 2 Christmases that I honestly didn't expect to be there for.

We are all different! Medicine has moved on and my experiences like yours were very negative after having seen friends suffer from the treatment of cancer.

Please think about your decisions. Thinking of you Maggie

[Hidden]

Hi Beryl,

it's now standard to test everyone with stage 4 lung cancer (family history is irrelevant) I would think they must have tested you, ask next time you speak to someone.

Good luck with whatever path you take. Something that might be of interest to you if you decide not to go down the chemotherapy route is The Penny Brohn centre. they are a charity where you can go and stay and learn about keeping healthy whilst living with cancer. It doesn't cost anything, I've attached the link for you:

pennybrohncancercare.org/

Take care

Lyn x

[bevbez in reply to Hidden]

Hi Lyn

Thanks for that - spoken to Penny Brohn centre and they are going to send me details

I will try and contact my Lung Cancer Specialist Nurse to see if the test was carried out. You have been so helpful to me - don't feel as though apart from my family I'm on my own any more.

God bless you and take care

Beryl xx.

[crana in reply to bevbez]

I so agree with you Beryl. I was only diagnosed 6 weeks ago, subscribed to this wonderful foundation, have been out of action for almost 2 weeks but have been on my laptop (bought for me by my loving husband & family) all evening in hospital reading all your inspiring stories. I live abroad & although everyone is very kind, supportive, etc. it is so good to 'talk' in one's native tongue.

Dear Beryl, I wish you well whatever you decide.

[Hidden]

Always here Beryl if ever you need anything xx

[bevbez in reply to Hidden]

Hi Lyn

Took your advice and contacted Penny Brohn. Have got their information pack and been looking through it. It looks very interesting and I will contact them to get some more information and maybe take a trip down there if I can. Have you taken advantage of any of their recommendations?

Once again thanks for your thoughts.

Beryl xx

[Hidden]

Hi Beryl,

my friend works for them as a fund raiser, I haven't been myself yet but am planning to do so in the new year, I have met another lady who has been twice now and says its wonderful, she follows their 'diet' and is also doing quite well.

Speak soon Beryl, take care xx

[bevbez in reply to Hidden]

Hi Lyn

Have been in touch with them and they have offered to book me in 17th-19th December so will be taking a trip down there hopefully with my daughter. Thank you very much for passing on the information it has been really helpful, can't wait to find out more information about the diet and put it into practice. Once again thanks very much and hope you are feeling a bit better.

Regards

Beryl xx

[saints]

hiya, My dad had chemotherapy twice for 3 months at a time and both times he was great. The only side effect he had was tiredness about 4 days after recieving his treatment. This only lasted for a few days. He never had any nausea or vomiting at all, My dad did keep eating throughout and i think this helped, People were amazed how well he looked and didnt know he was even ill if he didnt tell them. If it improves your chances it may be worth a try, If you get too many side effects then you can always stop . Thinking about you and know you will make the right choice for you, June xxx

[Hidden]

effects chemotherapy as a cancer treatment the most common are nausea, vomiting, mielosupresi (suppress production of blood), fatigue, hair loss and mouth sores. Side effects occur, due to the chemotherapy drugs kill not only cancer cells but also normal cells that divide rapidly follow. Like, digestive tract cells, skin, hair and sperm.

xamthone plus can overcome the effects of the cancer cells and prevent them from coming back. I always take xamthone plus every day because I am a smoker