Side effects from tagrisso

[candycane20]

hi

I was put on tagrisso after lobe removal for non small cell lung cancer

I was on them for a few months nose bleeds started a few weeks in then raised lumps and bumps started appearing over my body which were large and painful

I ended up having a biopsy on the large bumps

My oncologist didn’t think the tablets are the problem but stopped them till the lumps went down

Has anyone heard of this happening with these tablets

After googling I did find articles saying after 8 weeks people were getting this happen to them

I am worried to restart them incase it happens again

Or if anyone would know of a alternative tablet that I can ask for as I’m being told there is nothing else available

if anyone has any advice I would appreciate it

thanks

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi Candycane20

Sorry to hear you have been having some symptoms of lumps and bumps. It is best to be guided by your oncologist, and it is encouraging that he does not think your treatment caused them.

It is not a known side effect, although there can be skin and nail changes which you can find details of from this link: cancerresearchuk.org/about-...

If you have not already, you may wish to contact the patient driven website EGFR UK: egfrpositive.org.uk/ to see what others experience of Osimertinib have been.

This is the link to our information booklet on targeted therapies:roycastle.org/app/uploads/2...

I hope you are able to restart your treatment and am sure the oncology team will monitor you well.

We have an online support group for those in treatment and you can view and register for this through this link: roycastle.org/help-and-supp... alternatively you can email our support coordinator Ellen Knapp at [e-mail]

You are welcome to contact us if you would like to discuss anything on our ask the nurse helpline 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600, alternatively you can email us at [e-mail]

I hope you feel better soon.

Kind regards

Ask the nurse support team

The Roy Castle Lung Cancer Foundation

[Justbreathe55]

Hi I've been on the same for a year now, I had the dosage reduced due to the same rash and severe diarrhoea. My side effects are much more controlled on 40 the rash comes and goes and is more like acne mainly on my face. The egfr uk group on fb is a great source of advice as many ppl are on osimertinib too, so they can give you lots of advise. X

[candycane20 in reply to Justbreathe55]

Hi

These rashes can be horrible

I had pus filled lumps on my hands and groin and bum cheek and even up my nose

I am convinced it’s from Tagrisso

I have a bit of hair thinning so far

I’m on a break still from the medication but need to re start in the next few weeks

I am thinking of just taking 40mg for 2 months and see if they lumps come back and then go back to 80mg

My oncologist sees me once a month

I really want to change the dr I see as I don’t get on with her that well and I asked for a 2nd opinion and she said that’s not possible

She won’t do anything about the fluid on my lung she says it isn’t that bad to drain and says the pain I get is nerve damage from the operation

X

[Justbreathe55]

That's rubbish, you are entitled to a 2nd opinion. My consultant said the same about my pain he said I've now got chronic pain 😢 I have a tki nurse she's amazing, I see her once a month but I can message her anytime about any osi issues. Where do you live? X

[candycane20 in reply to Justbreathe55]

Hi

I’m in London and under mount Vernon cancer hospital x

[breethecorgi]

Hi

I have been on Tagrisso for a year now, my first scan after two months showed significant reduction in size and number of lung nodules. Every scan since has shown stable disease, so no growth, which is the main thing. My first side effects occurred after a couple of months where I had a terrible rash on my face. My oncologist gave me antibiotic cream (Zindaclyn) and I also saw a dermatologist who put me on oral antibiotics (Lymecycline ) for six weeks. It started to clear up immediately and within a couple of weeks it was back to normal. I occasionally have a breakout if I put tanning lotion or something on that my skin doesn't like but I have a supply of Zindaclyn which clears it up right away. The only other side effect I have is soft nails, I can't grow them and have to keep them short but on the EGFR Positive UK Facebook group I got advice from other people who had the same problem and gave tips about various things to try. There is another group called Tagrisso (Osimertinib) Patients and caregivers group which also has a wealth of information and there is always someone, somewhere who has experienced what you are going through. If you type your question into the search button you will get a host of information. Tagrisso is one of the latest targeted therapies for people who have the EGFR mutation and when I discovered I had the mutation I felt very fortunate, because otherwise it would have been chemo. The other thing people say is that symptoms come and go. I think skin problems, in particular, are very common at the beginning and then clear up. I also agree with the person in an earlier reply, you are absolutely entitled to a second opinion and you should find someone you are happy with.

All the best...

[candycane20 in reply to breethecorgi]

Thank you I have joined the face book groups they are very interesting

I really will try and get a 2nd opinion

I feel let down by my oncologist

I know I was lucky to be able to have the lobe surgery which was very painful and left me with nerve damage well that’s what they say it is

Maybe I should have just had chemotherapy after surgery but at that time I was so scared so went for the tablets which have caused so many side effects My oncologist said it’s past the time now of changing any treatments and there is nothing she can offer on the nhs

I did see a herbal medication called sour sop which claims to kill cancer so I’m really looking into getting this I’m reading up on it

I havnt restarted Tagrisso yet as I’m so scared to I may just take half a tablet to start with

When you live on your own it’s hard and I get so down not knowing what I should do

X

[breethecorgi]

I had my lower right lobe removed in 2019 and stereotactic radiotherapy to my brain as it had metastasised and then three months of chemo. I started on Tagrisso a year ago after lung nodules were discovered in both lungs Tagrisso is definitely a more successful treatment than chemo if you can tolerate it, maybe reducing the dose will work for you, ask on the Facebook group, I've seen lots of posts from people who have done that. Remember that chemo is much more toxic and also comes with bad side effects. This is not an easy journey but you can get there. I would be very sceptical about claims that herbal medicines cure cancer, just be careful, speak to your lung cancer nurses if you don't feel you can talk to your oncologist and gather as much info as you can.

[Mrsmilo]

Yes, I had these same side effects. The rash was horrendous and all over my body. All they gave me for it was cold cream. I was in a terrible dépression because of it. Eventually the doc halved the dose and the spots started to fade away in patches. I still wasn't convinced by the Tagrisso though. I had a very scary experience while taking it where a litre of fluid needed to be drained from my lung and heart because I couldn't breathe and could hardly move. I refused to take the Tagrisso so the oncology team decided to put me on chemo. Yes, it's awful, but at least I'm not in the pain that I was every single day. It took 3 weeks in hospital for them to build me back up again after taking Tagrisso and what happened to me as a result of it. I wish it would've worked, I really do but instead, I nearly died.

[candycane20 in reply to Mrsmilo]

I do hope your feeling ok now

This drug has a lot to answer for

These abscess looking lumps were Alful i ended up in hospital over Xmas with pneumonia and sepsis which I think was the medication that done it

I was told it’s to late now to have chemo as it’s past the 12 weeks since the lobes were removed

I should have argued with them and may be demanded chemo instead

I also have fluid on the lung but they say not enough to be concerned about but it’s painful and was probably from the operation

I don’t want to carry on like this I want to be normal and be able to enjoy my life

Thanks x

[CAB1968]

HiI have been on Tagrisso since 17th Jan 2024. No problems in the beginning, but after a few months I started losing quite a bit of hair. I also developed what felt like arthritis in my finger joints, wrists and upper arm, not shoulder joint but on the upper arm...all mirror image pains on both sides. I also developed what looked and felt like ganglions in my wrist joints, and a few on top of my hand. I was in a lot of pain.

My oncologist took me off the pill for 4 weeks, then put me back on...he wanted 40mg per day, however I was not able to get this dosage where I live, so he was happy with one pill every second day, for approx 1 month...then back to full dosage....

Hair has grown back, ganglions disappeared, and pain is hardly noticeable....I wouldn't go on other people's experiences though, you should listen to your oncologist.

[candycane20 in reply to CAB1968]

Thanks

I also have been losing hair no loads but definitely thinning and nose bleeds

These lumps looked like a abscess they started off small on the front of hand they were puss filled then a few started in my nose and then on the bottom of my bum and one on the front of my thigh they got so painful I had a biopsy on the worst one which came back with some sort of infection

They are healed up now I asked for 2nd opinion and change of medication she said there is nothing else she can give me

I feel very let down by her

I had 2 lobes removed and lymph nodes in July 24 which I am grateful for

I still have loads of pain in my right lung which she says is nerve damage

my oncologist said she didn’t think it was related to medication but I do think it is

I was told to stop them for a few months and now she has given me them again but she didn’t want to I had to bed for them

I havnt started them yet but I will cut them in half and take 40mg to see if I get any reaction to them

I see her again at the end of the month

It’s making me feel depressed and really let down

I just want be ok

I have been off work since may 24 and looks like they want to get rid of me due to ill health so I’m in a right mess with it all

I wish there was no side effects with this drug and I keep thinking how am I going to mange for years on this drug

Tha no s for reading

X

[Mrsmilo]

I'm so sorry you're feeling this way, candycane20. I'm here for you if you ever want to chat. I feel let down by my oncologist too. She kept taking me off Tagrisso too then putting me back on a lower dose. I think it was only after the meeting with the other oncology docs that she had to back down and admit it wasn't working. She even apologized to me in the end and said I'm not the only one who has problems with this drug! I couldn't believe it! I think she's having problems with finding how much my body tolerates cancer drugs as she also had to change half of my chemo drugs too. They're still not right either. Maybe I'm expecting too much, I don't know? All of us have different 'journeys' so it's hard to tell if what we're going through sometimes is normal or what. I certainly trust chemo more than I did Tagrisso but I know the latter can work really well for some people. Chemo is certainly getting rid of and shrinking my tumours since I've been on it though.