I have just started taking Tarceva and desparately want a holiday. Anyone travelled taking this medication?

[AliBB]

Any tips of relieving side effects of dry itchy red skin on face

[jujuju]

I went to Turkey last September for a fortnight,three weeks after starting Tarceva and despite using factor 50 and wearing a large hat and staying in the shade,I got seriously bad type of excema on my chest and neck.It cleared up with various creams prescribed by my gp when I came back.I posted a reply to you yesterday on another thread saying my experience was that the facial spots did not last very long.Almost done when I went on holiday and I just get odd ones now.More on my arms and legs.I am off to sharm el sheikh next Wednesday for a week and will take all the precautions and a large credit card....just in case.I can get no cover for anything to do with lung cancer because I am on Tarceva but I am ok here so hopefully ok there too!I will take all the potions I have with me.Another thing I have had a few times is fungal infections in my belly button and down below but they clear quickly with treatment.Most things to do with Tarceva come and go quickly apart from the hair and nail stuff.Also if you are incurable and under pension age you can get PIP by getting a DS1500 from your gp or consultant.Its great !I get it and still work but it means I have it if I have to stop working.Also a disabled badge....I don't use the spaces as to be honest I can walk miles and miles but it saves the parking charge!Hope you get on ok.Best wishes .Julie xPSmy profile picture was taken in turkey last September.

[AliBB in reply to jujuju]

Hi Julie. What a lovely upbeat reply, thank you. I have been feeling extremely low and only been taking Tarceva for a week. I haven't taken one today as I felt I wanted to give them up but perhaps hearing that the facial spots cleared I should go ahead and take it. It's very scary. I also found that I couldn't get any insurance cover for the cancer but found that I could get one for other things. Thanks for the tip on PIP, will look into it. Have you found that Tarceva makes you lose weight, I think I read one post from someone who said he lost weight? This hasn't been mentioned in the official side effects so just wondered? I am very lucky to have a husband who is extremely supportive but there is only so much he can do for me without it wearing him down. Have a brilliant holiday in Sharm....you lucky thing. Enjoy every moment. Kind regards, Alison x

[jwa67]

My dad found using Aveeno cream very soothing and effective moisturising with it regularly through the day especially on his bald patch. He used the Aveeno body wash/oil to shower and bathe with as using soap just zaps the moisture from your skin and will increase the skin irritation.

[AliBB in reply to jwa67]

Thanks for your reply. Do have Aveeno but doesn't seem to cure the itchiness. My rash has little white pus spots now so unsure if there is infection? Have put a call into the doctor to check it out

[swampduck]

Hello AliBB

Not sure if my reply will help, but here goes....

I am currently on Iressa, which I believe has less side effects than Tarceva.

I started first course In June, after diagnosis of Adencarcinoma, and immediately decided to go to Spain on out touring bike for 3-4weeks, since I was feeling okay. It was a real tonic after just being diagnosed with this little blighter! I had my tablets, my creams etc, and loved every minute.

As for travel insurance, right or wrong, I decided to just take my credit card, the insurance companies charge a fortune, didn't want the hassle and stress of sorting paperwork out....after all, we have to pay anyway!

For the dry, itchy skin, I have tried various creams, and found a cream that works for me. It dries very quickly, and I think it's brilliant (a lot of my friends are now using it for the dry, cracked, sore skin around their heels, after years of paying for podiatry, and elsewhere in general...they love it) only point I would make, is if skin is a little tender, it's a little bit sore for initial few mins.( ...bit like Anbesol on an ulcer) after that it's great, and it healed my dry, sore, itchy rash(s) very quickly. The farmers use it, for when they are milking the cows, and their hands become very sore, and chaffed.

The cream is called 'Udderley Smooth' you need the one 'with Urea' though. You can buy it in a small tube to try , or tubs on Amazon. I have found a local chemist to me that sells the tubs for £7.50.....worth every penny as far as I'm concerned. It ought to be made available on NHS for cancer patients suffering with dry skin.

The facial spots appear to come and go, strangely enough I welcome them....an indicator that the Iressa still doing its magic!

We have gone abroad frequently, making the most of being able to take a tablet a day, I guess. I drinks lots of water, use factor 50 sun block, and eat sensibly...I don't think there are any magic answers, just stay positive.

I am currently in Spain, for some dry, warm weather. We arrived yesterday for a month to stay around the Meditteranean, and now sitting in the warm sunshine in Peniscola x

I hope this helps, any questions you have will do my best to answer....but my attitude is to do what you can, if you feel like it, and enjoy your life xx

Take care

Karen x

[AliBB in reply to swampduck]

Hi Karen. Thank you for your upbeat e-mail and I am pleased to hear you are away at the moment - it's horrendous here today, wind and rain. I will take a look for Udderley Smooth. The Oncologist Nurse has just visited took one look at my face and said "oh dear....it should not be like that!". She thinks I have an infection so waiting for the Oncologist to give me a call. Hopefully I can then get it sorted and get on with my life. By the way, do you get Iressa on NHS? Thanks. Alison x

[swampduck in reply to AliBB]

Hi Alison,

Glad your nurse visited, I'm sure the onc will get it sorted for you.

Yes, it's NHS.

Take care

Karen x

[jujuju]

I had spots with heads on and they were normal for Tarceva.It looks like acne but isn't and it does go very quickly .Inspire is v good for all info regards Tarceva.Best wishes. Julie xx

[AliBB in reply to jujuju]

Stopped medication at the moment as my face got really bad. Will find out next steps next week. Enjoy your holiday xx

[lenora]

If the side effects get too unbearable you could ask your onc.to lower the dose I went from 150mg to 100mg and it's still working.

[AliBB in reply to lenora]

Hi Lenora...Have stopped medication currently until face calms down. Did you experience same on 150 mg? Thanks. Alison

[lenora]

No my face wasn't so bad,but toenails were infected badly and had to have nail surgery and antibiotics which made me realy sick,also eye infections.Poor you having such a bad rash on your face are you on antibiotics?I get udderly smooth on the NHS from the hospital pharmacy.Do hope your skin settles down soon and that you can continue on Tarceva.

[swampduck]

Hi AliBB

Just wanted to ask if you are okay and the rash etc calmed down?

Karen x

[AliBB]

Hi Karen. Still suffering despite being off drug for 4 days. Oncologist said this reaction very extreme. Waiting for advice from him as to what next. I am now a bit scared of taking again and have felt quite low and as if my bixing gloves have come off. Need them to be tied back on again. Cant book time away until things are stable so hopefully that will be very soon. Hope you are enjoying yourselves. Today here has been sunny but back to more rain next week. Thanks for asking xx

[Mrs-Star in reply to AliBB]

Hi AliBB, I just wondered how you are doing now and if you started back on Tarceva after your break of 4 days? My sister was diagnosed in February and although the tumour is only 2.5cm unfortunately it had already spread to nodes in her chest and neck. She had 1 shot at Radiotherapy and then started on 150mg of Tarceva. I know it's an odd thing to say but she was very healthy when she was diagnosed, she just had a bad cough and had coughed up blood but we thought it was because she had pneumonia. Since the Radiotherapy though her health has been all over the place and she has tonight been admitted to hospital for the 2nd time in as many weeks. Two weeks after starting the Tarceva, the rash she got was so extreme, very red & blisters she looked like she had been burnt in a fire, her liver was very swollen and she had pneumonia which they've told her she will be prone to. They took her off Tarceva to treat the rash, pneumonia etc and discharged her on 28th March after a 10 day stay. She has been to the Oncologist twice since then and the plan was to start the Tarceva again on a slightly lower dose when her liver has recovered. Last week it was showing as slightly improved so we hoped the Tarceva would be re-started this week. However, over the last few days her urine has been brown in colour, she has felt constantly sick and vomiting a kind of clear frothy bile. Needless to say her appetite has been diminished and she can't really afford to lose the weight. Also her temperature has been up and down ranging from 33 to 39. On top of all this her cough is still very irritating and seems relentless. I doubt that they will restart the Tarceva now but just wondered if you have experienced anything like this? She can't seem to catch a break at the moment and my heart aches for her. She was supposed to be going to Gambia for 3 weeks the week she was diagnosed and I think she wishes she'd gone anway given the diagnosis. Thanks x

[AliBB]

Hello Mrs Star

Firstly I am so sorry to hear about your sister and it sounds as if she has been really suffering since diagnosis. My tumour was 3.5 cm and the cancer had already spread to my chest and neck, therefore, inoperable so it sounds similar. I didn't have a cough or a cold and felt very well, perhaps a little more tired than usual. My cancer was discovered by a lump in my neck. I stopped Tarceva for about 2 weeks as I too had the severe reaction you described your sister suffered. Once my face had almost cleared I started on 75 mg every other day (37.5 mg/day) and then after a week increased to 75 mg per day. Since beginning of April I now take 100 mg and apart from loose bowel movements, dry mouth and fatigue I am coping well. In fact we are off on a cruise tomorrow around Europe as felt that was a safe bet given that there are medical facilities on board. I did not have radiotherapy but had 4 cycles of chemotherapy which shrunk the tumour to 29 mm so effectively a 20% reduction. I am due a CT scan mid May so fingers crossed that it has been working for me. Perhaps when the Oncologist says it is right your sister can start again on a lower dose and work up to a tolerable amount. I must admit I would be reluctant to go to 150 mg/day again but my Oncologist may push me to 125 mg/day if the results prove favourable. Best wishes to you and your sister and keep positive and fighting this terrible disease. Keep in touch. Regards Alison x

[LorraineD Partner Roy Castle]

hello Alison and Mrs Star

Thank you Alison for sharing your story. It is good to hear that they have found a dosing that works for you and you are well. We will all be hoping your CT scan in May shows this is continuing to work. Meanwhile enjoy your cruise.

Mrs Star

It sounds as though your sister has had a really rough time, hopefully the team are working hard to get her liver and temperature stable. It must be hard for you watching her struggle, but your support will mean a lot to her.

If it might be useful we have more information on targeted therapies and side effects in our Living with Lung Cancer pack. You can look at a copy on line, here

roycastle.org/how-we-can-he...

We can send a copy of this, or any other useful information to you and/ or your sister, just call us on freephone 0333 323 7200 option 2.

best wishes

Lorraine

on behalf of the Information & Support Team

[Mrs-Star]

Thank you AliBB and LorraineD for your replies. My sister is still in hospital as the infection is so bad. After various treatments a high resolution scan showed that she had an abcess in her lung which had burst. A further CT scan showed that the cancer has grown and wrapped itself round the infection so the antibiotics were not getting through. They restarted the Tarceva last Friday to try to shrink the cancer so that the infection can be treated. A on Monday showed that the infection has improved so that's our first piece of good news. Good luck with your scan and have a wonderful time on your cruise x

[LorraineD Partner Roy Castle]

Mrs Star

It sounds like an awful time for your sister. I am glad they have identified what is going on and hopefully the tarceva will help manage the tumour and then they can sort the infection. Hope you are taking care of yourself in all of this, appreciate it can be emotionally and practically demanding when a family member has a long spell in hospital.

Wishing you all the best and improvements over the next few weeks,

Lorraine

on behalf of the Information & Support team