Adenocarcinoma of Lung

[Ace467]

Hi ! I’m new to this . My husband was diagnosed with metastatic adenocarcinoma of lung cancer (T4N3M1A) last month. He is on Afatinib the last two weeks but he is suffering from all three blowup of the side affects in the first week , mouth sore/ ulcers , , diarrhoea, face n chest rashes. Has been in and out of hospital to check up on these side affects, now doctors told him to stop for a few days and see if things improved before going back on it . Is anyone out there with the same diagnosis. Would love to share your story. My life is in bits seeing him in so much distress.

[Dancer33]

Hi. So sorry to hear your husband is having side effects. My husband was on Afatinib and had similar issues. His oncologist prescribed him loperamide to manage the diarrhoea and some acne-type tablets for the face rashes. Both worked well on his side effects. We are on another social media group where others with similar side effects to those you describe have had their Afatinib dose reduced which has worked successfully. If your husband has the EGFR mutation you might find that group useful. (EGFR positive UK). Hope you get some resolution soon.

[Ace467 in reply to Dancer33]

Hi Dancer33

Thank you for the informations. He was given the same medicine to stop the diarrhoea and hydrocortisone cream for the rashes .but doesn’t seem to help , for his ulcers was told to use Dipfram mouth wash. Which was ok,

His next appointment with the oncologist is in a week time. Meanwhile we’re still waiting to hear back if he needs restart again today or stop it until see the oncologist again .

If you don’t mind me asking when was your husband diagnose and what stage is he “c” ?

All the best wishes xx

[Dancer33 in reply to Ace467]

Hi Ace467. He was diagnosed in March 2015 as Stage 4. He had a lung resection followed by chemotherapy and Afatanib. He’s now on Osimertinib. If you look at the Follow my Lead link under campaigns on the Roy Castle Foundation website you will find Tony’s and others’ stories. There is, as others have said, lots of help, support and information both via Roy Castle Lung Cancer Foundation, Macmillan Lung Cancer Nurse specialists and the EGFR+ Patient group. Sometimes it just helps to know you aren’t on your own. Wishing you and your husband well.

[Bow-19]

Just as dancer33 has said, if your husband has the EFGR mutation there is a EGFR UK group which has its own Facebook page and you can see how people are treated around the U.K. and get support from people in a similar situation to yourself and your husband.

I have NSCLC and the ALK mutation and use the ALK Positive U.K. and Worldwide groups for support and information. Everyone supports everyone else in the group and the lastest research is published too.

Roy Castle also produce a booklet about Targeted Therapies which is worth reading too.

Wishing you and your husband all the best xx

[Ace467 in reply to Bow-19]

Hi Bow-19

Thank you for your reply . I’ll have a look into this page .

My husband was diagnosed with his lung cancer from a routine chest X-ray following a cough and cold symptom. He was hospitalised for a week for pleural effusion. Since then I’ve been searching everything to understand why and who else have the same diagnosis out there .

Thank you , best wishes to you too .

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Ace467

Welcome to the forum where you will find support and encouragement. So sorry to hear about your husband's side effects and hopefully these will settle down with not taking the tablets at the moment, and then be reassessed. Side effects usually happen within the first few weeks and for some settle down as time goes on, everyone is different in their response. If you find your husband is not improving or getting relief do let either the specialist, lung cancer nurse specialist or GP know.

It is understandable how distressing this must be for you, not just dealing with the cancer but any side effects from treatment. Hope you have support from family and friends for yourself.

Our website roycastle.org has lots of useful information, this link has many personal inspiring stories of those living with lung cancer, that you may find helpful:

roycastle.org/campaigns/

There are lung cancer support groups available and where these are found in the UK is on this link: roycastle.org/help-and-supp...

Macmillan support has good information on Afatanib: macmillan.org.uk/cancer-inf...

If you want to view information on Afatanib and side effects, there are details on this from cancer research UK cancerresearchuk.org/about-...

As Dancer33 has said you may find this link of interest, a patient driven community dedicated to the EGFR mutation: egfrcancer.org/

If you wish to discuss anything you can either email us at [e-mail] or call our freephone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

[Ace467 in reply to RoyCastleHelpline]

Good morning !

I am so happy to have join this group , it has now open up my knowledge and knowing that my husband is not alone on this treatment. Hopefully we can put the pieces back into our life and get on with this battle.

Best wishes to all

[Kimidge in reply to Ace467]

I’ve been on Afatanib since December 2017 40 msg have stage 4 NSCLC about to have 12 days radiotherapy as a small lesion side effects on tablets can be well controlled with help from oncologist etc Good luck ps living life to the full x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

You are most welcome and we will be thinking of you both.

Kind regards

The Roy Castle Support Team

0800 358 7200

[Mandles01]

Hello Ace467

I'm very new to this forum but saw your post and wanted to reply. My husband is 75, 23yrs my senior. He has stage 4 Lung Cancer with mets to his brain. He was diagnosed in Sept last year. Since then we have had a 1 session only targeted radiotherapy at Clatterbridge Walton Centre on the brain tumour and have just completed 4 cycles of 7 hour sessions of chemotherapy. He has had updated scans and found that the brain tumour has indeed shrunk, not gone, but shrunk. The left lung tumour has neither shrunk nor grow. The right lung tumour has grown minimally, 2mm, - the oncologist says he is stable. We are now, every 3 weeks, given immunotherapy for the rest of his natural. What this does, I have no idea, and nursing staff dont seem able to explain in detail. Although we have similar diagnosis to your husband, Richard has only suffered with severe fatigue and loss of appetite. No pain, no rashes, no ulcers, so I count our blessings. It is so frustrating as the carer to see my husband looking so frail now, not knowing what to do to help, apart from just be there. Sending you my best wishes and thinking of you.

[Ace467 in reply to Mandles01]

Hi Mandles01

So sorry to hear your husband has a similar diagnosis a my husband. Good to know his treatment is working for him .

My husband is 52 , active and a workaholic. Only found out his diagnosis from a routine X-ray due to a bad cough and cold before Xmas. His cancer has spread to his lymph nodes and outside the lungs,EGFR mutation carry out and the oncologist put him on Afatinib as first line treatment.

I’m worried what the long term effect is going to be like for him, he is already showing signs of weakness in his health and is giving up on his will power do his normal activities.

I work most days , so it’s hard to know exactly what he is going through sometimes.

Good luck with everything, I’ll be thinking and praying for you too .

[DMR1]

Hello everyone. Sad to red about your husband Ace. It is a v difficult time for you but you both have to remain positive that your outcome will be more years of a good life.

I found this website by chance and used it to try and help others as I has been given all clear after 3 sessions of 7hrs of chemo plus radiotherapy for over 6 weeks over a year ago.

But those nasty cells have returned and into both lungs not just the one. So back for more treatment which started last week. I am having three different lots, Permetrexed, Carboplatin and Pembrolizumab. I am finding it more difficult to deal with - lack of appetite not wanting to drink because of the platinum giving me such a bad taste. You need do need to drink as much as possible - I didn’t, couldnt! But somehow one has to find the easiest drink to swallow - such as hot marmite or bovril. This will help to flush out all the poison they have put in you. My small trampoline helps to keep my lymphatic system working.

To you Ace, and everyone else, trust in your long term future - it will come, you just have to believe it X

[3Avebury in reply to DMR1]

Lemonade Limeade and of all things Iced Coffees especially Lattes also helps with the Calories Starbucks often do offers in Supermarkets Lidls do their own a little cheaper They can all help with the chemical taste problem and try a Diarolyte not just if you've had tummy upset but to give you a bit of a lift

[DMR1 in reply to 3Avebury]

Thank you 3Avebury. I will give your recommendations a try. Keep asking myself why platinum is important as it appears in many “chemo soups”! Does anyone know I wonder ??

[Ace467]

Hi DMR1

I’m sorry to hear that those nasty cells has return , and thank you for your encouraging words for us both. You too have to stay positive . You’ve conquered the nasty cell before , you can do it again !

My Hubby is going to see the oncologist this Wednesday since starting on the Afatinib last month .with the roller coster side effects, doctor told him to stop n start and then take it alternative days this week. Side effects has calm down almost completely. Just some bad acne on his face .

Let’s see what what doctor will him to do next ....,

Good health to all . 😁😁

[yjug]

My wife was diagnosed the same in December and has been on Afatanib . The first two weeks she had the full dose (40mg) and had the three side effects you mention . She stopped for a week and was taken down to 30mg and is now doing much better. After three weeks only one bout of diarrhoea, and the rash is less . Good luck to you both and remember that there is one person in this area who has been on this treatment for ten years .

[Ace467]

Hi yjug

Glad to know that your wife is doing well with the lower dosage .

My hubby saw the oncologist today for his first review, the last two weeks he was on and off the medicine for a couple of days break in between and all his symptoms has settled down a lot , therefore his now told to continue taking it straight for 5 days and 2 days break .

Ten years on Afatinib? I did ask my oncologist nurse about this ,she’s not heard of anyone on it for that long period! 2-3 years perhaps.

Not sure if there’s anyone out there on Afatinib for that long. Please let me know, would like to know the long term effect of this medicine. .

[Darlenenow]

I started gilotrif (afatanib) 5 yrs ago. First 40 mg with diarrhea, down to 30, diarrhea, then 20 with success. Had the horrible side effects, skin rash and used topical ointments sometime with prednisone to help skin and itching. These effects last awhile but slowly subside to tolerable. I am a sucess story, 5 years, but now the tumor is growing, along with new one, same size. So, the gilotrif has stopped working and I have a biopsy this coming Wed. to see if candidate for Tagrisso. If I am, the side effects the same as Gilotrif. If Im unable to take Tagrisso, then more traditional chemo probably. Only to prolong life a few months longer. I am so thankful for the 5 years. Perhaps his dose can be lowered also, assuming he was started on 40 or 30. If he are able to tolerate, perhaps his outcome may also be successful. Best wishes.

Darlene,

Georgia, USA

[Sannyboop]

Hi I was diagnosed on November of last year lung & bowel stage 4 . I was given afitnab and was same the side effects were so severe they tried me on a lower dose but made no difference so took me off it all together and started me on a different tablet . I have been so much better with the new tablet only really got bad skin ( really dried ) and a scabby nose , but nothing I can’t handle , I was worried because I thought maybe the second tablets wouldn’t help as much but doctors have ensured me they both actually do the same thing so fingers crossed this is my 4 th month on the new treatment.. hope all goes well for you best wishes x