Iressa....how long is it before symptoms appear?

[swampduck]

Hi,

Its day 7 on the Iressa tablets, and happy to say I am feeling ok....dont want to tempt fate but dont appear to be having any symtpoms. Would like to know if this is the same for you too?

[suesal123]

When I was on Iressa I had very few side effects. Towards the end of the first cycle I did get quite a lot of spots on my face and back but they settled down after a couple of weeks. From time to time I had dry skin and found E45 Intense very good as prevention rather than cure. Hope it continues to work for you

Sue xx

[swampduck in reply to suesal123]

Thank you Sue, feel bit of a muppet at minute, since I spoke too soon....woke this morrning with spots around my chin/mouth, and suffered a few stomach cramps today...feel like a teenager again with acne/tummy pains lol x

If you have any tips for the stomach cramps I would be very grateful.

Regards Karen x

[Joewarren]

Symptoms for me only started to appear after 2-3 weeks. But I know that others have said their symptoms / side affects were mild. The worst one for me was the slots on the face an back an limbs but these did spontaneously resolve after about 8 months an now don't have any. good luck with the Odessa I ha e been on it 12 months now an feel relatively well most days I just get tired. I do take an anti sickness pill each morning an hour before it I should add. This definitely helps with the nausea an if I have forgotten forgotten to take it I do tend to vomit

[Joewarren]

Sorry about spelling hit wrong keys an didn't notice. Should read "spots" an "iressa

[swampduck in reply to Joewarren]

lol x thats ok, I understood your reply : )

As you will possible see reading this thread that I spoke too soon : / I woke this morning with spots on chin/mouth, and suffered a few tummy cramps today...dont want to temp fate again by complaining too much.... at least it may be doing me some good....and giving this 'invader' a beating!!!!....hopefully for a long time, like yourself.

Will take a look at the threads from yourself and Anne Carmel, before asking questions that have already been addressed elsewhere on the forum.

Kind regards

Karen X

[LorraineD Partner Roy Castle]

Hi Karen

side effects do vary. It may be worth looking on the thread from Jo Warren - on iressa, or Anne Carmel who has also posted on the subject. We also have a factsheet on the subject if that would be of interest.

best wishes with your treatment.

We are also looking at arranging a half day event for people on targeted therapies this autumn. Let us know if you might be interested attending,

Lorraine

on behalf of the Information & Support team

[swampduck in reply to LorraineD]

Hello Lorraine,

Thank you for reply, afraid I spoke too soon....today I woke with spots around my chin/mouth, and had stomach cramps a few times today.

Will view the thread from Jo, and would be interested in the half day event for targeted therapies (excellent idea).

Kind regards

Karen x

[CathMB]

Hi Karen,

Great that you are able to be treated with Iressa. I have been on it for 10 months now and am thankful for every moment I have had as a result. Since you posted I have seen your updates that you are getting some effects now and that is pretty typical I think. My experience has been that side effects will come in clusters for a few weeks at a time, go away and then recur later on e.g. One of the first was the skin rashes that started with an itchy rash which lasted on my legs, bottom and chest for about 2 weeks then disappeared only to resurface about 4 months later. The other type of rash which is more acne like first started about a month after I began treatment and showed on my nose, chin, forehead and a bit around my cheeks. This comes and goes. Indifferent areas every few weeks now eg. A purple of weeks my nose will be pimply that clears up and then my chin will start up.

There is a tab.e I have seen somewhere that gives time frames for when effects can be specter but I can't find it right now - I'll try and find it for you

These are the effects I have experienced so far:

Skin - itchy rash, acne like rash, dryness, about 3 months skin splits on hands around fingers and on finger tips, 3 - 5 months paronychia on fingers and toes that often lasts for a month at a time, mouth ulcers

Diarhoerra - starts about a month into treatment and continues intermittently - doesn't always need treatment and will sometimes clear up on its own, loss of appetite is common as well. This has lead to a bit of weight loss for me but nothing major really.

Hair - nothing very noticeable at the start then about 1 - 2 months brittleness and a bit if breaking off especially around hairline. Hair eventually gets very dry and coarse - mine has lost a lot of curl, about 2 months eyebrows grow thicker and darker, eyelashes thicker, longer and curlier. Can be a nice side effect but if they grow inwards can cause infections and irritations in the eye.

Fingernails become brittle and break easily

Urine changes colour and goes very dark even when well hydrated.

Cuts and burns take ages to heal - I have become very wary of burning myself when cooking because it takes weeks for the skin to heal and regrow.

Fatigue - kind of goes without saying but is definitely more than just tiredness. Takes longer to do things than it used to.

All of the above have been manageable and compared to the alternatives no big worry at all.

There is research showing that effects such as the skin dryness and rashes are linked with effectiveness of treatment so I like try to be positive and welcome the effects as an indication that the Iressa is doing its job well.

As far as counteracting the effects it mainly involves using lots of heavy duty, hypoallergenic moisturizers on all skin everywhere, almond oil and hair masques and less hair washing, eat little and often and use liquid supplements if weight drops too much. Get as much rest as possible and understand life is different now so don't add stress to myself by trying to do

everything the old way!

I joined a group of Lung Cancer Survivors at inspire.com which has been invaluable as a source of advice and comfort. They have some excellent information about Tarceva (erlotinib) which is a TKI used more in USA but has similar effects. Iressa seems to be more common in the Commonwealth countries -I'm down in New Zealand. I suggest you have a look at the Tarceva Divas and Dudes threads for lots of practical tips.

I hope this is of some help and I wish you all the best with your treatment and outcome.

Keep believing

Catherine

[swampduck in reply to CathMB]

Thank you Catherine for your reply. Apologies for delay in replying. The info you supplied is brilliant.

I am currently suffering with sore hands & toes. Acne on nose, mouth & chin, tummy cramps, hot sweats, fatigue/tiredness. Oncologist gave me a prescription for so many varying creams/pills Im trying to remember what they are all for (bit forgetful at mo). She also said the hot sweats I am suffering with is possibly the menopause!

We are going away on Sunday to Spain for 2 weeks, touring on our motorbike while I feel ok...keeping fingers crossed the symptoms dont get any worse whilst away. To be sure I am taking with me..... Immodium, Domperidone for diahoerra and anti sickness. Hydrocortisone and Oliatum for hands, although I am going to try and get a tube of Udderly Smooth cream from Amazon that is supposed to be very good.

I agree with you....I will deal as best I can with side effects so long as I can continue with the Iressa.

Enough of me......How are you? What a wonderful Country you live in. We came over for a month in 2008 visiting family on Waheke Island, before touring both the north and south islands....beautiful country, wonderful and friendly people. Where are you based?

Will leave it here....Ive rambled on a bit...still got loads to sort out before holiday....taking longer these days to get jobs etc done due to tiredness....take care, stay strong. Karen x