This is a question for all Iressa users

[Joewarren]

I have been on Iressa for 7 months now with no change in size to my tumour, but most of the blogs I read state a reduction in size of the tumour, is anybody else like me, just keeping the tumour a stable size? Also have been asked to have a week off the medication due to sores in my hairline but am concerned about this. Is it routine to have a week off/rest on this medication after a while does anybody know?

[suesal123]

I started on Iressa in July last year and I had a good reduction in the size of my tumour until my doctor could hardly see it. Unfortunately on my last xray the tumour has started to increase in size again meaning that it has stopped working.This means I now have to change my treatment.

There are quite a few other people on here who have been on Iressa for over 18 months and their tumour is still stable. I think if your tumour is stable and not groeing that has to be good news.

I had some dry skin and spots initially but they calmed down after a while. I can't answer your question about having a week off but I hope everything stays stable for a long while yet

Sue xx

[Joewarren in reply to suesal123]

Thanks for the reply, am sorry to hear there has been growth in your tumour and the Iressa appears to have stopped working. I have read on this site however about people who had 'blips' in the Iressa treatment i.e. it stopped working but they stayed on it and it appeared to kick in and start working again. After paying to see someone privately I was told that this is not uncommon, so it might be worth persuing your consultant about this probability, obviously I guess it depends on how much it has changed size and where it is, good luck for what ever direction/type of treatment you are given

Joewarren x

[annecarmel]

Hi Joe,

I have been on Iressas since January 2011. My various tumours have reduced by between 40 and 60 percent and have been stable at this point since my scan in January 2012. Initially my then oncologist took me off the drug for two separate periods of a week in order for me to take antibiotics to clear leg and foot infections. My current oncologist has given me antibiotics just once but allowed me to keep taking Iressa. As I understand it Iresse a designed to block cancer cells from dividing. So if your tumours are not growing it would appear that it is doing its job. I'd love to see more reductions in my own tumours, but I'm happy there is no growth. Cancer cells are longer lived than normal cells so it may take time for them to start dying off. The Iressa thread is a great improvment for us to discuss things in public forum. There are a few of who are in direct email contact. If you would like to know more contact [e-mail].

[Joewarren in reply to annecarmel]

Thanks for the reply. It is helpful to know there was no real affect on your tumours growth by having a small break from the Iressa. I have not heard of the Iressa thread forum and will use the E mail address you gave me thanks.

[mags03]

Hi Joe,I have been on Iressa now since July 2011 .My tumor did shrink in the first couple of months and has not changed since then,so I am just happy that it doesn't grow .I ,like Anne,was taken off Iressa for one week when I was taking an antibiotic and had no adverse effects.I still have dry skin but keep it hydrated as best I can,the worst for me is inside my nose( I get prescription nasal cream )and also those invisible demons crawling in my hair.I have tried many treatments but they don't go so I just keep scratching.

Hope you and Iressa stay friends for a long time.

Mags

[Joewarren in reply to mags03]

Thanks for the reply Mags, like you I know the feeling on unsatisfiable 'scratching' particularly in the hair. I try not to in public as am convinced as I don't look like a cancer sufferer, i.e.I have hair-- people just assume I must have an infestation if you know what I mean! I am reassured that others have had a small break with no apparent adverse affects, hope all is still going well for you.

[greyholme in reply to mags03]

Dear Mags,

Since reading your comments I also have the nose problem, please can you advise me about the nasal cream.

My head used to drive me mad, especially when I went to bed and put my head down on the pillow, but I now use only 'pure' shampoos i.e., organic etc with no chemicals and my hair over time has greatly improved.

My face, well I should not complain, but it is very dry and now has acquired a fine hair growth, I think this sounds worse than it looks - I hope. In the meantime, I am delighted with Iressa and in the past have received two lots of antibiotics to clear the acne, but was left on the Iressa both times. I use a madly expensive face cream, which helps, but the drying out of my skin is pretty dreadful, but I just remember that this is the Iressa working, well I hope!

You might like to try the shop "Content" which is in Bultrude Street, London, W1. they are on the web, just tap in. I was introduced to this shop by an article written by a cancer patient, who decided to check out shampoos etc., she was losing her hair, and was horrified to discover the general content of all the cosmetics etc we use on our bodies.

The costs of these items is much more than your local supermarket, but I take the view - look after what you've got while you've got it. The shampoos in particular last a long time and hair washing gradually becomes less frequent, ie., from everyday to once every three or four days.

I hope this has been of some help. I have found this blog really useful as no one I know has even heard of Iressa, so I just check in and out now and then.

Kind regards and best wishes, Greyholme (jenny)

[mags03 in reply to greyholme]

Hi Jenny

Thanks for your contact and advice,that is what is so wonderful about this site.We can help,advise or just let off steam.

Yes I have had nasal problems which have thankfully now been sorted.Because of the dryness inside my nose I had some bleeding which clotted and was painful and uncomfortable.My GP prescribed Naseptin Nasal cream to use sparingly .It cleared up in a few days.She also gave me Mandanol Normal Saline Nasal Drops to use afterwards if inside my nose felt dry.

Like you I have also tried many remedies to stop the itch on my head with little success .I currently use the Simple Range for most things,it doesn't stop the itch but doesn't sting.to be honest the texture of my hair has gone haywire,on a good day it looks like a bad perm.

I have found the Aveeno creams oils etc. good for keeping my skin from being too dry and for my face I have settled for the moment with Doublebase Dayleve Gel.

I will definitely log into "content",it is always good to follow advice.

Did you know that the Roy Castle Information and Support Team are organizing a" Group for those on Iressa"blog which should be very interesting and informative.By the way how long have you been on Iressa?

Best wishes and please keep in touch

Mags.

[greyholme in reply to mags03]

Dear Mags

Many thanks for your reply and helpful advice re the nose. Yes, my hair has also taken on a life of its own, but then so have my eyebrows!

I have been on the Iressa since October and the initial scan showed a tremendous improvement - I have cancer in both lungs and was diagnosed at the end of August 2012. My last scan in March showed the cancer has stabilized, and I continue to feel very good.

The Aveeno range is highly recommended, but by skin is very dry anyway, so I have to use a less 'watery' cream to stop the itching and stick the flakes down!

If you do check into Content, they are extremely helpful on the telephone if you need advice.

The new blog for Iressa sounds very good news.

Thank you again for your reply and best wishes, Jenny (Greyholme)

ps. I also take the herb tumeric which I hope is helping and the doctor has cleared it. Garlic and green tea are also recommended, which I am sure you know about. I am now about to take Pawpaw tablets, on the recommendation of my Asian dentist. I think you should know I also like a glass of red wine................

[Georgie1]

Hi Joe, I started on Iressa on 6August last year my first scan showed that had all showed significant shrinkage. I have just had my 2nd on Thursday evening will get results on 22nd! So far so good! I still have very dry skin and use E45cream. My head stopped itching a couple of months ago thank goodness. Unfortunately I can't say anything to you about having a short break of the Iressa, or the your tumours not shrinking or growing. But with them not growing this has to be a Good thing. [e-mail] we are in contact with each other and I am finding being able to discuss things with her very helpful. As I live in Spain and not have cancer nurses to talk too I feel very alone. I wish you lots of luck with the Iressa, and your tumours start to shrink.

Georgie

[Joewarren in reply to Georgie1]

Hi Georgie I have been in touch with nic.eivors... and it is reassuring that others out there have been stable for some time as the use of Iressa is still in it's infancy, and results are promising in terms of people living relatively normal lives for longer. They have given me your E mail and I will E mail you shortly so if you want to be in touch to know you are not alone feel free.

[LorraineD Partner Roy Castle]

Hello all

really useful to share experience and offer support. If you want to keep all the iressa discussions together you can post them on the blog "group for those on iressa". We are Roy Castle are also keen on your feedback on whether there are other ways we can support you for example: would a pod cast from a clinician or patient with considerable experience of using iressa be useful? Would it be valuable to set up a quarterly on line or phone "discussion group" where you can all virtually meet? Your feedback and ideas would be welcomed.

regards,

Lorraine on behalf of the Information and Support team

[Joewarren]

These I am sure are all suggestions that would be widely appreciated by all Iressa users. It is in terms of 'medicine' a relatively new treatment and believe most oncologists out there are on as much of a learning curve as their patients. I would definitely be interested in being involved in a podcast from a clinician or experienced patient or a discussion group on line. My own experience is still in it's infancy so to speak, I have been on the drug 7/8 months.

[annecarmel]

Hi Joe,

I didn't get your email at [e-mail] (nic is celtic for 'daughter of').

It strikes me that the week break from Iressa, coupled with antibiotic treatment, appears to be a standard response by oncologists when side effects build up. For my third antibiotic treatment my oncologist didn't bother to stop the Iressa. There was no discernable difference in the result - although I must say.that none of the three interventions produced as marked an effect on my red-raw rash infection as did the Fucibet prescribed by my gp. My oncologist has noted this for future use with other patients..

Regards,

Anne

[Joewarren]

Hi Anne

am going to ask the GP on Monday if I can try the Fucibet, as non of the creams given by the oncology clinic have had any significant effects on my hair line soreness and rash so far. Worth a try and thanks for the tip.