CHEMO PILLS ARE EFFECTIVE (But patients skip doses)

[Robertlowe]

Some patients have trouble taking chemo pills. More than 40 percent of patients took the wrong number of pills or skipped doses altogether. They noted severe side effects and complicated instructions for some oral prescriptions. Some required patients to take pills several times a day or cycle their doses, taking one pill a day for three weeks, then stopping for a week before starting again. And some patients take two types of pills to treat their cancer or have multiple medications for other chronic conditions. It can be very complicated.

It's cutting-edge treatment, but we don't know enough about it yet, said Barbara Given, associate dean for research in the College of Nursing.

“Have you taken them, DO COMMENT and pass on your thoughts?”

stobhilllungcancersupportgr...

[Georgie1]

Hi Robert,

I am one of the lucky one's, as I only have to take one Iressa tablet every day. I started taking them on 6th August 2012. My Labrador new there was something wrong with me as she kept licking in between my breasts every day she did this, unfortunately I thought nothing of it. Until after I was diagnosed with non small cell lung cancer, stage 4. In operable as it was in both lungs along with smaller ones around my heart etc. I have never smoked and was positive for the EGFR mutation. ( again lucky). My diagnosis was found because I had an infection in the lining of my heart, and on 29th June 2012 I had an appointment with a Nefrologia at another hospital when I arrived there I started to feel un well, so after my consultation she said to go to A&E because of the problem I had, so I did and they took x-rays of my lungs and told me he wasn't happy with what he see's so they will be admitting me. I got admitted to my local hospital and there they told me on the Monday morning it's definately cancer. Then the scan's and biopsy were done.

Anyway to get to my side effects. I had hair loss for a couple of months, and now it's stopped. I am back to normal hair loss. My face was covered in spots and a rash again for a few months, now it's very slight and infrequent. However now my skin is very dry so I use E45 cream every day, some days several times a day. I only had the feeling of nausea slightly on a few occasions. I lost my appetite for for about 5months and could only eat a little, I have lost 14kilos but I needed to so am happy about that. The only thing that's staid constant is the tiredness. Other than that I am great! The only thing that tells me I have this awful illness is the tablet! But I do take it every day! Along with my other tablets I take for my thyroid, osteo arthritis, which I have in my neck, back, hips, knees and both my wrists. This gives me bother than the cancer! But I am a strong person and a positive one which I think you need with whatever your treatment is!

Sorry it's so long but wanted you to see the full picture.

Georgie x

[Robertlowe in reply to Georgie1]

Thanks Georgie

I have absolutely no knowledge of Irressa. But I do believe that the more personal experiences and facts that people pass on the more helpful it is for others. Thanks for sharing your positivity.

Robert

[Hidden]

I too take Iressa, I have now been taking it for 22 months, once at day at the same time. No problems remembering that.

Nasty side effects??? No not at all. Nausea NO, loss if appetite NO, hair loss NO, Tiredness (I still go to the gym) NO diarrhoea ? difficult to assess as initially I was also on morphine and movicol (as had a thoracotomy to get a diagnosis) so although I did have diarrhoea not sure if it was Iressa or Movicol?? It stopped after I stopped the morphine comb. I have lost no weight what so ever (even though I would have welcomed that one lol). The only side effects I seem to have is dry skin for which I use 'aveno' mosituriser and occasional emollient. I don't even have to use it everyday. I did have the 'rash' only on my chin and nothing make up didn't cover, that was only for about 5 months. I do however have 'chemo' hair! It is growing like an 'afro' lol, but even that is manageable using John Frieda 3 day straight which lasts until I wash it again. I still have my hair coloured and have never missed since I started Iressa, it never gets greasy and can easily go a week between washes. My profile picture was taken 7 months after I started on Iressa and I still look like that.

I personnaly think the chemo pills are miracle drugs, I am young though and this little pill is the only 1 I take. I can understand it getting confusing if you are older and take lot's of medication and maybe not understanding what is causing different side effects.

I don't like the comment in the statement that says 'Chemotherapy pills often cause pain, severe nausea, vomiting, diarrhoea, fatigue and skin reactions. Patients may skip doses of their medications to avoid these negative side effects, making the pills ineffective.' I think that will deter people from trying them and therefore living a 'normal life'. I have not personnall heard of anyone getting all those side effects, but I have heard of a couple of people refusing the drugs because they thought they would get them and that I feel is a tragedy.

Lyn x

[Robertlowe in reply to Hidden]

Slap my wrist and a thousand apologies Lyn, I should have deleted the offending passage from the original article before I posted it. If you look again it is now omitted. I promise I will try to learn from my mistakes.

The really positive aspect is that both above replies are so encouraging.

Thanks

Robert

[Hidden in reply to Robertlowe]

lol, Robert. I think on the whole if you ask anyone taking Iressa they will say it has relatively few side effects. Personally my life is no different to what it was prior to daignosis, apart from now I know I have lung cancer and all the usual worries that go with it.

Not a lot in general is known about these drugs as they are still fairly new, so it is going to take those of us who take them to inform people. Even the so called 'experts' can only list the 'possible' side effects. the word there being POSSIBLE. Not everyone can have them, just those of us lucky enough to be EGFR or ALK positive, that anounts to 10% of the population (40%) if you are asian. If you are a female non smoker diagnosed with lung cancer there is a 50% chance you will have a mutation.

I am one of the first people to take Iressa as a licenced drug. I was told it wouldn't shrink my tumour and would work for around 9-13 months before progression. Well my 11cm tumour was collapsed and immeasurable after 6 months and although I have a small about of progression now (November scan) I got about 19 months out of it. I still take it as although there is some progression it doesn't mean it's stopped working completely it means it is probably working at 80%. I had another ct scan this morning to see if there is further progression and if there is, how much. The consensus is that if only millimeters I will continue with it a bit longer. I will have to go down the IV chemo route at some point however. Research is saying that following progression with TKI's (Iressa, Tarceva) a course of IV chemo seems to reset things so that you can then go back onto one of these 'wonder' drugs after.

We will not see ('on paper' 'statistics') how well these drugs are working and extending people lives for another 5-6 years as the 'stats' are always 5 years behind, and at present as they are all relatively new it is just the tip of the iceberg!

All very promising :))

Lyn x

[Robertlowe in reply to Hidden]

Great stuff Lyn, lots of very knowledgeable reassuring advice.

All this guidance should help a lot of people.

Robert