Irressa, anyone taken it before?

[angels5454]

Hi all, I went for my lung biopsy results last Friday, the oncologist said that the cancer has changed. He said we now can give you irressa, I know that there are side effects with every drug we take but at the moment I'm trying to get use to the blood thinning tabs which they had to put me on because I went into cardiac arrest and then a Tia stroke immediately after they had finished the lung biopsy. I'm struggling to take these tablets called clopidogral which thin my blood and stop me from having another stroke. They give me bad ibs so I take buscan but they do not help. I have had to take pain killers. I'm just worried that when I start having to take the irressa it might make my ibs worst. Has anyone else been on irressa?

[Bow-19]

I don't take it but I also use a website based in America called Inspire. There are people on there that talk about Irressa. Hope this helps Xx

[angels5454 in reply to Bow-19]

Thanks bow 19,

I will have a look on this website Inspire and see what's on it for me.

Chris xx

[Neil-SueD]

I can see your dilemmas, but let me tell you my own experiences in the hope this may help you.

I am 61 years old and had the upper left lobe removed in 2014. In April 2016, the cancer was confirmed as having returned, but it had the necessary mutation for treatment with Iressa (Gefitinib) and I have been taking 250 mg of Iressa daily since July 2016. Several CT scans have shown shrinkage of the tumours across my lungs. There are side effects, but I regard putting up with these as a better situation than the alternative! I do appreciate that Iressa is not a cure, but the extra time I have been given by Iressa is very welcome. I'm sure this can be different for different people however.

For about two weeks initially, I had a lot of painful mouth ulcers, but careful use of an anaesthetic spray helped a great deal as does some excellent stuff called Purple Shot mouth spray which I found years ago in Japan. I have to import this (not expensive) from Japan via Rakuten. The ulcers have lessened a lot anyway.

Almost as soon as I started on Iressa, I developed the expected acne-like skin effects on my face in particular, but various creams provided on prescription help this a bit. As a bearded man, this may be less of a problem than it may be for a lady. I have developed spots everywhere although they seem to be less of a problem away from my face. My hair (on body and eyebrows) seems to be brittle and is now naturally shorter. It's a bit odd, especially for a man perhaps, but not a depressing problem.

The spots do seem to be related to an increased tendency for them to bleed a little and easily, especially so on the face. If I need to blow my nose first thing in the morning, it often shows blood in a tissue, but this situation generally clears up during the morning. If you are taking blood thinning drugs, I wonder how this would impact with you? Please mention this to your doctor.

My skin is much drier than before and flakes constantly. Whilst this is not uncomfortable and only causes some slight itchiness, my wife jokes that there's bit of a snow or dust storm when I take my shirt off. Hoovering the bedroom is done more fastidiously than ever!

I do find that very approximately, about every third day, I need to go to the loo urgently and stools are very fluid indeed. Loperamide (once again provided by the hospital on prescription in anticipation of the side effects) helps somewhat. At worst, individual incidents last about an hour and then I'm OK, if feeling a little wobbly and (literally!) drained for maybe a further hour afterwards. I'm far from being housebound however and noisy intestines can give me fair audible warning of what's to come. This happens in the evenings mainly and after dinner. Keeping fluid levels up would be sound advice - you can't beat a glass of water in that respect.

I've had some trouble with a couple of fingernails becoming quite sore, a thumb in particular, but these have healed slowly. A couple of toenails are similar although not as annoying as was the case with fingers which you need to hold things with of course.

My hospital has been pretty good at anticipating what medicaments I might need to combat Iressa side effects. Fortunately, I have not had any nausea and not used the tablets I was prescribed for this. My appetite is good.

I am more easily fatigued than before and believe this is due to Iressa. This isn't too much of a problem, but my advice would be to pace yourself. In this way, my life remains very good and I feel quite lucky to have had a reprieve from what would surely have been a much worse situation by now.

Finally, can anyone tell me what's the longest they have been on Iressa? I've really no idea of whether we're talking months or years. My doctors are vague because I suppose they don't want to appear to be giving any assurances and I can appreciate that. Just how long is that piece of string?

Neil

[dizzie-wh in reply to Neil-SueD]

Neil, I hope I have answered your query about "how long" on Giffy BUT apparently the norm is 11 months average !! Not great seeing that, but, I was on it for almost 3 years- it's a "how long is a piece of string" answer I'm afraid. Think it all depends on how fast growing your personal cancer is. Good luck on it anyway. Love Diz xx

[dizzie-wh]

Hi there, I have just come off Gefitinib/Iressa after almost 3 years. I was discovered to have the EGFR mutation when I had a VATS Pleurodosis in Jauary 2014. Initially with Giffy (as we call it on Mac site) I suffered very much with raging/unpredictable diarrhea which meant I truly couldn't leave the house at times. Therefore, to the lady who asked the question in the first place, I would expect that your IBS may get worse. If you explain to oncologist about that then they will prescribe Loperamide - I actually found the old-fashioned medicine Kaolin and Morphine worked best for me, and I would also suggest you get some Tena pants so you are prepared for any "accidents" !! Sorry sounds all gloom and doom BUT when my symptoms got too bad (ulcers,boils,hair loss) my oncologist reduced the dosage by 50% - so I took it every other day and that made an amazing difference. Apparently it has been proved to still be effective that way. I was on it for almost 3 years until it started to mutate with the T790M mutation and I have moved onto another TKI drug called Tagrisso/Osimertinib and going through hardly any side-effects with that so far - been on it 2 months!

Re the question of "how long can you be on it" - I met a lady at St Lukes Cancer centre in Guildford that had been on it for 6 years and another friend of mine has been on with no growth for 4 and a half years. SO all round the side-effects are doable BUT if these get too much advice is to ask oncologist about halving the dose.

Love and Hugs to you all

Diz xxxx

[angels5454]

Thank you all for replying regarding irressa, I have spoken to my oncologist about the IBS which I suffer and I suppose it's a matter of trying the irressa. I was not too bad until I had to take this blood thinning tablet called Clopidogral, I have no choice about taking this tablet as, I may be repeating myself here but I only went in hospital three weeks ago to have lung biopsy and after they finished I had cardiac arrest and then a (Tia stroke) mini stroke so that's why I'm on the blood thinning tablets.

I have done quite well up till now, I had half a lung removed in 2008 and I was fine until 2010, they told me the cancer had returned in both lungs. It was a rare cancer and hardly ever grew and when it did it was only a little bit but the oncologist told me that they did not have a drug for my kind of cancer and that they would just carry on monitoring me and giving me CT Scans every 6 months. Within the last 3months the cancer has grown some more so that's why they wanted the biopsy taken again. I have had biopsy taken in the past both with local anaesthetic and with general anaesthetic but never had cardiac arrest before or mini strokes, quite frightening to experience. I'm getting over that it's been 3weeks now since it happened. I just have to prepare myself for starting the irressa. I'm no spring chicken I'm 62 but I dread thinking about the side effects and what it can do to woman and our appearances, summer will be here in no time and I like getting out in the sun but I suppose we have to make sacrifices. I don't want to live as a recluse.

[pollyalison]

Hi Angels,

I have been on Iressa now for 18 months and it has now stopped working and my tumours are growing again. My oncologist is working on finding the best alternative for me and I have a biopsy on Wednesday for this. All side effects have been covered except I suffer from constipation with it rather then the other. I also feel that it has affected my memory to some degree and have to write everything down. I did not get mouth ulcers at all but know some people did. It is worthwhile as side effects are manageable and you can carry on with a pretty normal life. My oncologist said 6 - 12 months is the average working time but I know people like Diz were far luckier than me. Good luck with it and long may it work.

Alison x

[angels5454 in reply to pollyalison]

Hi Alison, thank you for your reply. I worry that I will have acne on my face and my hair will look a mess. Also have heard that it effects our nails. I always get compliments on my skin and nails so my appearance really matters to me. I love going walks with my husband and I would hate to give all that up if I look terrible. I don't want to become a recluse.

I'm sorry to go on about what might not ever happen. It's trial and error. I wish you good luck and hope that your oncologist can find a alternative drug for you that works. Let me know how you go on.

Chris x

[pollyalison]

Hi Angels,

I got slight rash on my face which comes and goes but is treatable with cream from doctor. I found Boing from benefit a good quick fix if I was dashing out and is useful under make up to keep it light and natural looking as I didn't wear any make up previously. My nails went very weak and they used to be lovely like yours all the time so I now have gel nails done every three weeks and they look great. It is all about looking for positive ways out of a negative situation and anything to make you feel better, do it!! I have spa days and pampering sessions all of which I never had before. As L'Oreal would say 'You're worth it'. Onward and upward xx (((xxx)))

Alison x

[angels5454 in reply to pollyalison]

Hi pollyalison, thank you for the advice and info, I'm really grateful for it. I have a month before I see the oncologist again to see if I want to go on the irrressa. I feel well apart from getting over the shock of cardiac arrest and mini stroke. I look very well and feel good. I am trying to get a holiday in this country before I start any treatment. I suppose I'm lucky as I can dictate to the oncologist when I am ready to go on this drug. Although my husband and some friends think I should get taking irressa straight away to get it working on the cancer before it grows anymore. xxx

Chris x

[Neil-SueD]

Thank you all for your advice and experiences. It really is illuminating.

After being told a year ago that my condition is terminal, I feel Iressa (or "chemo-lite" as my son called it) has bought time and achieved for me something of a return to square one, i.e. who knows how long we've got on this earth anyway? I'm quite upbeat about whatever time is left and so me and my spotty fizzog will simply KBO, as I believe Churchill used to say!

Neil

[dizzie-wh]

Hi Chris, Diz again. Just a few extras to mention re my experience with Giffy :- my nails didn't suffer at all and as Alison says I went onto gel nails and that worked well for mine: my hair did thin considerably and at one time I was sporting a Mohican BUT referred for a wig and gotta say wish I'd discovered those earlier (apart from being a bit warm): Sun - I went to Turkey with my son in August just after I started the drug and was amazed that I tolerated the sun very well - using Piz Buin Anti-Allergy 15 : skin - always been dry but never had a rash - used a cream called Balneum from my GP and Aveeno Bath products (all on prescription) : mouth ulcers (Orabase) and cold sores (Aciclovar). Think it really varies from one to another as to how bad your side-effects are - SO please don't expect all of them ??!! That would be a Job-type persecution (Bible) - plague of frogs coming soon. Good luck - it is a great drug and can hold the cancer for a long time. Re blood thinners - I inject Fragmin/Daltaparin every day - may be this would be a bit kinder to you?? Not nice injecting BUT I've now found that creeping up behind myself and injecting in my bum is best LOL !!

All the very best. Love and Hugs Diz xxx

[angels5454 in reply to dizzie-wh]

Hello Diz, thank you so much for all the info you gave me. I think I have become a bit more anxious due to the fact that I had the procedure for lung biopsy and then ended up with cardiac arrest and mini stroke. I went for a MRI on Tuesday and I have had a bit of a panic nerves going on. That's what hospitals have done to me lately. Anyway I have to have a few more investigations for the heart before I can consider going on irressa. Have to get to the bottom of this.

I had a long chat today with Karen one of the Macmillan nurses she was really supportive.

Chris xx

[dizzie-wh in reply to angels5454]

Chris I can truly understand why you are SO apprehensive about anything from then on. I felt the same after my first CT biopsy where I hemorrhaged and pebble dashed the CT room. Plus they punctured my lung - then ended up with having drainage of 2 litres of blood/fluid before VATS procedure to stick lung wall to ribs. Scared stupid by then and nowhere near as dramatic as your story!!?? Gotta say they treated me with much more respect after all that though - actually has a consultant radiologist do my 2nd CT biopsy, who was lovely and well aware of what a foul-up I had with the first CT biopsy.Keep in touch and if there is anything I can help with I will do so. All the very,very best.

Love and Hugs Diz xxx

p.s. Mac site and Inspire (US site) good for research too.

[Readhill]

I have been taking gefitinib for two and a half years. My skin is very dry, my nails a very brittle and my fingers around my nails split and get infected easily. I use body shop hemp hand cream which works wonders. I have ibs and have not noticed a huge difference in symptoms since I started on the tablets. I get rashes but mostly on my back. The spots can be quite painful but seem to appear and dissapear quite quickly. Bleeding gums sometimes but easily dealt with with a good mouthwash. I use uvistat factor 50 suncream which you can get on prescription. My feet are very dry and the skin kept splitting until I started using flexitol heel balm, again available on prescription.

Last summer one patch of my lung stopped responding to the drug and I had 3 new tumours. I had radiotherapy for 4 weeks which appears to have dealt with them.

[angels5454 in reply to Readhill]

Thank you for your reply, will make a note of all the creams etc. My husband seems to think it's a miracle cure, does not understand that there are side effects and sometimes it might not work. Not sure whether to fit a holiday in before I try the tablet. I can't fly just now until they find out why I had the cardiac arrest and mini stroke immediately after the biopsy was taken. We would have to holiday here in the U.K.

[Readhill in reply to angels5454]

My husband thinks its a miracle cure as well. They hear the bits they want to I think. After i started the treatment I kept telling him not to expect miracles at my first checkup.

The cancer had returned on both my lungs after 3 years and both lungs had lots of cancer spots visible on xrays. 3 weeks after i started the tablets the spots had shrunk to the point that they could no longer be seen.

I think the fear of the side effects is worse than the reality sometimes. I was dreading the acne rash people get but I have never had it.

[angels5454 in reply to Readhill]

Hi readhill, thank you for that. I am racking my brains out here wandering if I should go on the irressa or not. Then hearing that the drug can stop working and they have to go on another drug. I feel well at the moment apart from getting over cardiac arrest and mini stroke, still trying to deal with this and find out why this happened. Just finished having all the heart investigations yesterday so just waiting for the results now. I see the oncologist next Thursday to let him know what I have dicided.

Xx

[Readhill in reply to angels5454]

I had a had allergic reaction to chemo so when the cancer came back we didnt think we had any options left. The genetic match to take irressa is so small we really didnt expect me to match. When I started taking it it was my last option again but now there is the next drug....again I will need to genetically match but the odds of doing so are much higher.... they are making advances in treatment all the time. Try to take it one step at a time and not look too far ahead.

I have accupuncture once a week at our local cancer unit and that has really helped my strees levels. Goid luck with your test results and your oncology appointment.xx

[angels5454 in reply to Readhill]

Hi, I don't think I will ever have a lung biopsy ever again, had them before and they all went ok but having this last one has put me off for life because of all that went wrong. I nearly died in that room. Are you saying that in order to match your genes and get the right drug for you do you have to have a lung biopsy every time? I just could not go through any more biopsies ever again, especially with having a cardiac arrest and Tia stroke. They think it was a air emblism they are not sure, still waiting for investigations about what happened.

Xx

[Readhill in reply to angels5454]

My last biopsy was horrendous. Not as bad as your experience but I have a high tolerance to anaesthetic and it didnt work so the majority of the procedure was agony. As far as I understand from my oncologist i will need a biopsy again when the tablets working. But they could work for years.

[Genie123]

Hi yes I'm taking Iressa and I've been on it for over 4 yrs now, I also have terminal lung cancer, and I did have side affects but they do ware off aventually or slow down, I had the loose motion skin dryness, but I've learnt to control the dryness and my motions are very rare now, I did start taking essential oils about a yr ago and found them in credible for making my well being inside me feel much better, my head is a lot clearer and feel more energetic, it was my therapist that put me on them, she's ever so good and informative, I didn't want to just go by oils off the shelf as some yu cannot take internally and some are not pure oils? but these I get yu can take, frankincense and gel wellness complex capsules,sorry for such a long response but I just felt I had to explain in depth.

Hope you get on well with irressa as it's a brilliant drug, if yr body can take it, take care and all the best.

Jean

[angels5454 in reply to Genie123]

Hi Jean, thank you for the reply. When you say therapist what kind of therapist did you consult? I would be interested to find myself one aswel if it would help.

Chris xx

[Genie123 in reply to angels5454]

Hi so sorry I've not replied, but I sometimes forgot to look if any messages.

If yu would like to send your email I would be happy to share the therapist I use.

All the best jean

[angels5454 in reply to Genie123]

Hi Genie, my email address is [e-mail] thanks would like to keep intouch xx

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Aromatherapy can help with many of the side effects experienced when on treatment for cancer, as Genie123 has said it is important to have consulted with a reputable, qualified aromatherapist and also to discuss with your oncologist before starting any treatments as aromatherapy or herbal medicines can interact with medication that you are already on. Below is a link to a cancer research article on aromatherapy.

cancerresearchuk.org/about-...

Kind regards

Roy Castle Helpline