SIDE EFFECTS OF TAGRISSO FOR LUNG CANCER

Hi just wanted to reply to your post

I’m not on this targeted therapy but a a lovely lady, Dizzie has been on it a while 

I’m sure she will reply as soon as she sees this 

Best wishes

Margaret 

Hi 

I’m sorry no one has replied to your question re

Tagrisso side effects 

Will bump it up to top so it can be seen again

Best wishes 

Margaret 

Hi Sandra

I have no personal experience of this drug, however I have located the side effect details and tiredness is one of the common ones.  The details below list the serious and the more common side effects (of course everyone reacts differently and the list is not definitive).  I hope this helps and I wish you the best possible outcomes. Kegsy x

Get emergency medical help if you have signs of an allergic reaction:hives; difficult breathing; swelling of your face, lips, tongue, or throat.

Call your doctor at once if you have:

• shortness of breath even with mild exertion;
• fast or pounding heartbeats;
• a light-headed feeling, like you might pass out;
• swelling, rapid weight gain;
• new or worsening lung symptoms--sudden chest pain or discomfort, wheezing, dry cough, feeling short of breath; or
• eye problems--vision changes, watery eyes, increased sensitivity to light, eye pain or redness.

Cancer treatments may be delayed or permanently discontinued if you have certain side effects.

Common side effects may include:

• diarrhea;
• feeling tired;
• dry skin, rash; or
• tenderness, discoloration, infection, or other problems with your fingernails or toenails.

Hi Sandraann,

Firstly, I am so sorry not to have picked up on this post earlier. Apologies.

I have been on Tagrisso/Osimertinib for 18 months now and have found it to be a "wonder drug" for me. I'm on it as second-line treatment, having been on Gefitinib/Iressa for 3 years. After the side-effects of my first- line treatment I found it a blessed relief!!

The only side-effects I experienced were severe lack of appetite (lost 2 stone in first 3 months) and problems with my nails (leaving my nail beds). Maybe it was just such a relief coming off the previous drug that I didn't truly notice many problems. However, we are all different and if your husband's side effects are really affecting him then I'd suggest you get onto your Lung Cancer Nurse asap. The problem is that not only are you new to all this - so is the information regarding Tagrisso. I started it in December 2016 when it was first approved and even now I don't think there are that many people on it. SO to many of the Oncologists recommending this it is still rather unknown territory.

Otherwise I think on the extensive leaflet that comes with it there is a number to call AstraZeneca directly. I'd possibly suggest you phoning them if you get no assistance/information from your LCN.

I truly think it's a brilliant drug and I do so hope things settle down for your husband. If I can help at all otherwise do please ask and I'll do what I can. Believe me tho this drug has far less side-effects than other Biological Targetted drugs and far less also from the Chemo pathway.

Do hope things settle down for you both and that this drug does the miracles it has for me.

Love and welcoming ((hugs))

Diz xxx

Dear Diz

Thankyou so much for responding to me and for such an uplifting message.  It gave my husband ‘Taffy’ a real boost.  As you can imagine in these early days everything is so new and unknown that we dont know what is coming from one day to the next.

He is barely into 1 week of taking the tablets, and already we have seen an improvement in his demeanor, eating and coming back slowly into living.

He had a really hard time before the treatment started and had to have over a litre of fluid drained from his lungs and the coughing - well - it was just dreadful and he felt he was dying.

Anyway we seem to have come through all that now other than the tumour seems to have attacked his left vocal cord and so he has a lovely sexy raspy voice !!! 

I know it is going to be a long road but one we have to take.  Once again many thanks.  Sandraann

Dear Sandraann,

I am so pleased I was able to give your dear husband "Taffy" a bit of a boost. Also pleased to hear he is already feeling better with the treatment overall.

Do please keep an eye on any breathlessness problems, which may be fluid building up again, that's the time to ask for medical help asap. BUT I'm sure you're very aware of that eventuality - you must watch him carefully anyway??

Feel free to track me down anytime and if I can help then I'll do my very best to do so.

Meanwhile for me Tagrisso is holding most tumours/lymph nodes  at bay  but my pesky Primary has decided to grow. SO have been referred to UCLH for a TAS-116 clinical trial (if I meet their criteria). Useful for you and Taffy to know there are possibilities if Tagrisso decides to stop working?? Nice to know there are all sorts of research going on and that there may be different options in the future.

Having been given 3-4 months in the beginning I have been more than LUCKY to be in the right place at the right time for new drugs coming available. 

Can I please ask whereabouts Taffy is being treated?? And whether this is his first Biological Targetted treatment?? I'm down south and being treated by St Lukes Cancer Centre in Guildford, Surrey.

Wishing you both all the very best.

Love and Hugs

Diz xxx

Hi Diz - we live in the UAE and he is being treated by an eminent Emirati oncologist who trained in the UK and laterly in the USA.   Most of the cancer protocol here is run under the USA vein, if I can put it that way.

The problem with living here is that there is no Lung Cancer support group such as you have in the UK. 

We are British - well English and Welsh, and so I knew of the Macmillan cancer support and also of support groups in the USA.  The Macmillan support is closer and clearer to me and that is why I saught information from them.  Also coincidentally a very close friend of ours who lives in France has also contracted cancer and his wife suggested that I join the Macmillan support group. 

Taffy will have a petscan in 2 months  to see if the tunour is reducing, and then if it is he will then continue on Tagrisso. 

Having said yesterday that he was having a couple of good days - today has not been a good day, and I think the dioreah ( spelling )  has started ! 

At the moment there is so much to take in, so much to understand, so much to learn etc etc, that I feel that I am floundering somewhat, but I am sure things will involve as we go on.

There has been no mention of being given ‘ time ‘ but we do know that it is at stage 4 becos he has a spot on his liver. Our insurance covers us for treatment in the UK, but not in the USA, so it could be in time we will have to seek further treatment in the UK. 

I am so appreciative of your advice and knowledge - and I dont want to swamp you with asking loads, but I am sure I will be asking from time to time as you sound very knowledgeable. I hope that is OK. 

Very many thanks and love and hugs to you as well. 

Sandraann xxx

Hi Sandraann & Taffy

DerrH !!! Me - knowledgeable - I think not !!  Just I've been fortunate enough to have been relying on TKIs for 4 and a half years & I suppose you pick up on info all the time.

Right so you live in UAE - interesting and hopefully you never hit a brick wall regarding treatment. Re the Diarrhea I found the best thing was an OTC medicine called Kaolin & Morphine. Becoming more difficult to get hold of in the UK tho, cos apparently the addicts find it lovely too! Think possibly unlikely for you to find it where you are BUT may be worth an ask. Also your Treatment team may be able to prescribe something to settle things for Taffy. Please don't suffer in silence..

Some side-effects can make you so desperate you may want to stop the meds SO please do contact somebody as to that problem before it gets too much for Taffy. I'm hoping you have a contact at your hospital to ask such questions. 

Don't know if Taffy is in pain at all ?? but some painkillers can also slow up the old bowel area?? Not suggesting he fills himself up with Paracetamol but just wondering what other cocktail of drugs he may be taking??

Yup - do seek me out and if I can help I will. If I don't know then I'll be honest enough to tell you- promise.

Love and Hugs from the old UK

Diz xxx

Hi there and apologies for this late reply - hope it isn't too late to be helpful.

My partner has been on Tagrisso since last May. Originally she took it first thing in the morning, but switched to evenings because, like your husband, it made her sleepy. She does experience side effects: bouts of diarrhoea (generally controllable with Loperamide) and frequent nausea (anti-nausea drugs helpful but not 100%). The worst thing is loss of appetite, made worse by a bad taste in her mouth - she says its like chewing paracetamol (not something I've ever tried!) and it can put her off food even if she feels like eating. If anyone out there has a remedy for the foul taste, please share it - my partner finds it the most difficult thing to cope with, and it can be very frustrating. 

She did lose some of her hair at the beginning of treatment, but it grew back again; and she has problems with fingernails breaking. She does get very tired (not sure whether that's down to the cancer, the Tagrisso or the anti-nausea drugs) but she's got good at strategic power-napping! 

The positive news is that, so far, the chemo has been effective. The tumour had shrunk by a third between May and August; she had another scan recently (end of March) which showed no further reduction, but no growth either. And we managed to get away on holiday a few times over the winter, which was a real bonus.

Hope your husband settles down ok with the Tagrisso, and that it gives him a positive outcome. Let me know how you both go on.

Sending you both very best wishes

Lesley

Hi SandraAnn,

Just another thought , as you say you are governed by US rules in the UAE. You may find a site called "Inspire" useful to you too because it is also governed by US protocol.

There is a Group on there called "Tagrisso Train Rolls On" where there is loads of information because Tagrisso has been used in the US far longer than in the UK. Maybe worth a look???

Love and ((hugs))

Diz xx