SIDE EFFECTS OF TAGRISSO FOR LUNG CANCER

Hi Barbles or Lesley,

Really great news about your wife's Tagrisso treatment.

I never really have had the taste in my mouth BUT have suffered dreadful loss of appetite !! Lost 2 stone in the first 8 weeks and haven't managed to put any back on. It's really a case of eating anything she fancies and bulking up her calorie intake with all the naughties like ice cream etc.

I think I've been SO lucky with lack of side-effects for which I'm truly grateful. After the 3 years I had on Iressa/Gefitinib it is such a wonderful relief!! Finger nails dropping off seems a small problem, which for a vain old bat like me is amazing!! Any ideas re that would be gratefully received???

Let's all hope this great drug continues to "do its' stuff".

Love and hugs

Diz xx

Dear Diz - thankyou so much for your thought.  I have also found the Inspire site, and have found it to a certain extent very useful - and yes read at length the Tagrisso Group.  

In fact I have read and searched so much stuff, my head is in a bit of whirl.

My husband has now been on Tagrisso for 2 weeks, but it feels like 2 months.

I dont know whether it is because of the way he was before he started this medication, or whether it is just the side effects, but he is not a well man.

He has suffered from huge fatigue, spending the whole day going from bed to chair and back to bed again all day.

At the beginning he had no appetite, but slowly I have begun to introduce bits of food that he likes and his appretite has started to pick up.  He eats a bit and then suddenly hits a wall, he says, and then he cannot eat any more.  Still it is more than it was.

To be honest, we both think that if this is going to be the rest of his life, it is just unthinkable.

We see his oncologist tomorrow after his first 2 weeks.  She will take bloods to make sure all his levels are correct, but I dont know what else she can do to change the way he feels.

So many people on Inspire have said that this drug is the best thing, and that peoples lives have changed.  We have not got to that point yet - in fact will we ever ?

Its a very bad time for both of us at the moment, more so for him. I cant imagine how desperate he is to feel well again, but I can see that that is what he wants, and I feel so helpless that I cannot help him.

Would love it if someone could say - ‘ This happened to me “. And it would give us some hope that things will change.

So sorry - but I am helpless.

Love and thankyou for your hug - I so need as many as I can get right now.

SandraAnn 

Hi Diz, and thanks for the reply.

Hi Sandraann,

Just popping in to say that I have been on Tagrisso since last April 2017 after being on Gefitininb for 18 months.  I know what you mean about the brick wall on eating.  I start eating with great gusto feeling quite peckish and suddenly come to a halt and can eat no more.  Unusual for me as I was a proper pig before diagnosis.  I agree with Diz on all things except I have not lost weight on Tagrisso and put this down mainly not to food but he copious amounts of beer I can get through on occasion.  Food wise, I now eat what I fancy when I fancy it and although my husband does all the cooking, he doesn’t mind when I stop eating my meal and give it to the dog as long as I have had some.  I also eat chocolate now which I never used to do, I find dark chocolate more palatable.

As far as side effects are concerned, I suffer badly with constipation and also splitting and flaking nails.  I also get pain right in the middle of my bicep muscle which can be intense at times.  However, not all may be a result of meds, they could be just body general and unrelated. 

I attend a water based exercise class three times a week as my fatigue gets worse if I don’t exercise, I also walk the dog.

I know that Diz has covered all the aspects of this drug and she is far more knowledgeable than me.  I am like her student as my meds etc have followed her history. I just thought I would pop in to give another opinion on the drug.  I am hoping it carries on working for a good while yet.

Stay strong

Alison x

Just a thought to pop into here !! Re - the fatigue. When I was first on Gefitinib I was hit really hard with this and the "dire rear" (as we describe it ) - for fatigue my oncologist prescribed a single dose of steroid  to be taken first thing in the morning. This helped enormously.

However listening to your story with Taffy , Sandrann I wonder if it may still be the effects of the cancer that are affecting him rather than the drug? He is very early in his "journey"and he may be being hit by the cancer side-effects as well as the drug ones.

I'd be very interested to hear what his oncologist has to say ??? Hope she/he can throw out some good suggestions.

I would add that it is a very recent move to use Tagrisso as "first-line" treatment. In mine and Alison's case we had another TKI before to tackle EGFR mutation and then moved onto Tagrisso when we were shown to have another mutation T790M by biopsy. There is quite a lot of controversy in the medical profession re this move - I don't know if any mutation biopsies have been taken for your Taffy??

Therefore the way the drug is affecting him as "first line" may be very different to our experiences???

Do update us as to the Onc visit??

Love and Hugs to All especially to "Newly Married Alison" - congratulations !!

Diz xxx  

Hi Sandrann,I was convinced I had replied to your post BUT seems it's gone astray or i'm going nuts!!How did you get on with your Oncologist??Really interested to know what he can suggest?? Do please let us know?? Love and many (((hugs))) Diz xxx p.s. apologies I have no paragraphs- laptop decided to give up on those??!!

Hi.I'm on tagrisso. I take mine in the evening.iv been on it for 6 weeks and feel tired at times and some days I ache a lot. But apart from that I'm generally feeling well on it.its a good drug.but we are all different how we tolerate treatments..hope all goes well on it.

Hi Dizzie -  I came across your correspondences with my wife SandraAnn by accident when asking Google a question! I have joined t he group to give you some answers to what has happened since my first diagnoses and treatment with Tagrisso.

The drug worked or should I say is working brilliantly for me BUT the side effects were very difficult. I was taking 80mg Tagrisso.

The complete loss of appetite - I’ve lost 10 kilos most of that in the first 2 months and still slowly down at about 0.2 kilo a week

Nausea - controlled by Zofran

The dreaded RASH - this was really the hardest - in fact you asked the question what did the oncologist say after our meeting of 2 weeks She saw a rash on my face which I was unaware of and said “Oh Good the Tagrisso is working” . Now its very important to note that while a rash may indicate t he Tagrisso is working, no rash does not mean the Tagrisso is not working because as you have pointed out we are all different and with this dreadful disease there are no rules for all patients.I found no creams that helped!

Highs and Lows - Best put was I felt like a little girl “ When I was good I was very good but when I was bad I was horrid!!” I had days when I felt just wonderful but then that could be followed by a day when I really hit rock bottom, completely washed out and empty.

After 2 months I had a PET scan which revealed 90% of the cancer in my left lung had gone! Yes 90% however an X-ray showed I had inflammation in both lungs. My oncology team comprising of an Oncologist, a lung specialist and a cardio specialist and X-Ray specialist decided to take me off the Tagrisso.

I was put on a course  of 30mg steroids, reduced to 20mg after 2 weeks and down to 15mg after a further 2 weeks. The team also decided to put me on 40mg Tagrisso but we had great difficulty getting it. I only got it 3 days ago and now take it with the steroids for 2 weeks when I will meet the team again for progress.

During my time off the Tagrisso the rash slowly left me - phew !!! The steroids made me feel really good but sadly I caught a virus which has made me feel really unwell at times. Apparently the steroids lower your immunity which lets the virus hit harder.

It has not been easy but at least we can look back and feel as if we are at least holding our own if not winning our battle. I would also like to add how invaluable advice/ comments from people like yourself are to people when they start out on this journey. One has no idea what to expect or why something is happening; looking back now after our 4th month, we are so much better prepared for what’s to come. 

I’ll let you know how I get on with the 40mg and I should add my last chest X-ray a few days ago showed my chest inflammation had almost cleared .

May I send you my love and a big hug for the comfort you gave SandaAnn, she now has a “cancer buddy” here in Dubai who she met at the clinic. Her husband has small cell cancer of the lungs and is undergoing Chemo but they get together and chat which gives them both a lot of relief from the strain we unwillingly put on them 

Taffy_Dxb

Hi Dizzie -  I came across your correspondences with my wife SandraAnn by accident when asking Google a question! I have joined t he group to give you some answers to what has happened since my first diagnoses and treatment with Tagrisso.

The drug worked or should I say is working brilliantly for me BUT the side effects were very difficult. I was taking 80mg Tagrisso.

The complete loss of appetite - I’ve lost 10 kilos most of that in the first 2 months and still slowly down at about 0.2 kilo a week

Nausea - controlled by Zofran

The dreaded RASH - this was really the hardest - in fact you asked the question what did the oncologist say after our meeting of 2 weeks She saw a rash on my face which I was unaware of and said “Oh Good the Tagrisso is working” . Now its very important to note that while a rash may indicate t he Tagrisso is working, no rash does not mean the Tagrisso is not working because as you have pointed out we are all different and with this dreadful disease there are no rules for all patients.I found no creams that helped!

Highs and Lows - Best put was I felt like a little girl “ When I was good I was very good but when I was bad I was horrid!!” I had days when I felt just wonderful but then that could be followed by a day when I really hit rock bottom, completely washed out and empty.

After 2 months I had a PET scan which revealed 90% of the cancer in my left lung had gone! Yes 90% however an X-ray showed I had inflammation in both lungs. My oncology team comprising of an Oncologist, a lung specialist and a cardio specialist and X-Ray specialist decided to take me off the Tagrisso.

I was put on a course  of 30mg steroids, reduced to 20mg after 2 weeks and down to 15mg after a further 2 weeks. The team also decided to put me on 40mg Tagrisso but we had great difficulty getting it. I only got it 3 days ago and now take it with the steroids for 2 weeks when I will meet the team again for progress.

During my time off the Tagrisso the rash slowly left me - phew !!! The steroids made me feel really good but sadly I caught a virus which has made me feel really unwell at times. Apparently the steroids lower your immunity which lets the virus hit harder.

It has not been easy but at least we can look back and feel as if we are at least holding our own if not winning our battle. I would also like to add how invaluable advice/ comments from people like yourself are to people when they start out on this journey. One has no idea what to expect or why something is happening; looking back now after our 4th month, we are so much better prepared for what’s to come. 

I’ll let you know how I get on with the 40mg and I should add my last chest X-ray a few days ago showed my chest inflammation had almost cleared .

May I send you my love and a big hug for the comfort you gave SandaAnn, she now has a “cancer buddy” here in Dubai who she met at the clinic. Her husband has small cell cancer of the lungs and is undergoing Chemo but they get together and chat which gives them both a lot of relief from the strain we unwillingly put on them 

Taffy_Dxb

Dear Taffy & SandraAnn,

Thank you so much for letting me know how things are going for you both. Well that is Brilliant News re the 90% reduction !!! Mine has only been held so it's brilliant to hear your outcome so far.

However, it sounds as if it has been a real uphill battle for you???!! I am only assuming because you have had/are having such great results that Tagrisso 80mg may just be too large a dose for you. Because I had it prescribed after progression on another drug Gefitinib, I maybe was more amenable to another TKI?? Really don't know but,as I said to Sandraann before, we are all different. 

It is one side-effect that is warned of - pneumonia type bugs - so perhaps this is what you have had?? Also always watch out for any sign of fever, shivers etc _ I've had 4 doses of sepsis now which is scary I can tell you.

Meanwhile this weight side-effect seems to affect some and not others?? Who knows why?? I just have to make sure I eat extra cream in coffee, on fruit etc and I also try to maintain my weight with protein drinks called Fortisip. They give me a kick of 300 calories a small shot of a milk shake type drink. Like you tho, whenever I get laid low with anything I worry about losing more weight. Just had a tummy bug and managed to lose 8lbs in 2 weeks AAAGH!! 

I'm starting SBTR or SABR treatment on Monday for a week to try and zap my "rogue" primary. Also a tad worried I might succumb to more bugs. Joining you on the dreaded steroids for 2 weeks. Do you find you can't sleep on them??? Not gonna be easy cos I'm bound to be wiped out from the radiotherapy & then not able to rest !! Oh Well has to be done huh?

SO please your dear wife has met someone to chat to while at the Clinic - hopefully they can support each other and also you two hubbies??

Wishing you all the very best. Do keep in touch.

Love & Hugs

Diz xxx

Love & Hugs

Diz