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The Roy Castle Lung Cancer Foundation
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Targeted therapy

Hello All

I am hoping someone can help me. I am having a biopsy for recurrent lung cancer next week but as I had the EGFR mutation in my original tumour, the oncologist tells me it is likely I will be treated with targeted therapy. I have read about the potential side effects and I wondered if anytine else had had experience with targeted therapy and how you found the side effects. In particular, I am concerned about skin, nail and hair care and wondered if anyone could recommend a good moisturiser, foundation makeup (to cover acne like skin rash), shampoos/conditioners (as the rash can appear on the scalp too), nail care and so on. I would be grateful to hear back from anyone with experience and recommendations.

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Dear LadySg

As we have been in contact already, I just wanted to wish you all the very best and hope you get some valuable feedback from fellow forum users.

All the best

The Roy Castle Support Team

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I was given targeted therapy in hospital shortly after diagnosis and a liver biopsy which indicated which drug should be effective. However, I was also given an antibiotic without explanation. Too late I found this was apparently to combat the possible side effect of an acne-like skin rash. Why too late? Because I was allergic to the antibiotic, already being allergic to penicillin, ampicillin and sulphonamides. The reaction necessitated a return to hospital while the red, swollen, itchy rash spread over my body, and coming off the drug until I recovered (and the doctors decided whether the rash was due to the drug or the antibiotic).

I don’t know if it is relevant but I have never had acne so thought it unlikely that this would be a factor. Has anyone checked this out?

My main reaction is continuing sickness and food tasting strange. Blood tests have shown my neutrophils are affected so I have stopped again. Of course I’ll persevere when I can because CT scans show the therapy is working.

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Thank you Jabb. You reply is appreciated.

Kind Regards

LadySG

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Hi Lady Sg

My rash was quite strange I had a little bit of dry skin round my nose for which I used Aveeno which I got in boots. I thought that was the start of the acne. No it disappeared and reappeared on my legs. It wasn’t an issue as it was winter and that was the sum total of my problems. I felt really lucky as I hadn’t really suffered too much with acne as a teenager.

Jeanne.

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Thank you for your response Jeanne. Appreciated

Kind Regards

LadySG

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My mum is on Iressa (Getnifib) since, Nkvember 2017. she uses Zeobase cream from doctors and Clairns extra dry moisturiser for face. Side effects the odd spot, but most strange long eyelashes (She has to keep cutting them!). To start with food didnt taste right, but now almost back to normal. Apart from that she feels she isn't I'll since taking this, and CT scans are looking favourable and quite frankly incredible!

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Hi Sry to hear ur news do u mean target radiotherapy if so my hubby just went threw it in April for recurrent local lung cancer he went threw a horrible time and was hospitalised for over 3weeks of the 4 week treatment .because the tumour was Inoperable and so close to the heart and gullet .his gullet took the hole burn of it couldn't eat or drink he lost 3stone in 2weeks anything at all he tried even water he was doubled in pain and nothing they give him helped. This continued for Annor 4weeks after treatment was over and he was admitted to hospital again. Along side this his breathing was awful still is and gets out of breath even getting on his clothes .they tell you the side effects but not the severity of them .and also the long term effects witch happen on down the years with heart problems breathing and spinal problems. He is already bin put on heart tablets as his heart rate is tofast his gp noticed this as my hubby didn't feel it .He has his follow up scam on 23rd this month to see if it has worked. He said if he had known how he would have bin with the treatment he wouldn't have taken it .and if the radio hasn't worked he wants no more .now this is him everyone body different I hope I havnt scared you but I would do my resurse before signing any forms good luck hope all goes well for you

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Hi. I've been on Gefitinib since July 2016. As a bearded, balding blokey bloke, I can only imagine what a lady might be not looking forward to. It's surprising what others on these drugs are finding. Within a week of starting the drug, my skin (face in particular) got spotty and I had awful mouth ulcers, but the latter cleared up. My skin went very dry and it wasn't until a young lady doctor prescribed and hot me using Dermol lotion to wash with that things improved ... a lot, and I'm very grateful.

My body hair (not a lady thing I hope!) became very brittle and short. The hair on my head now grows in odd directions, but the more bristly hair of beard and eyebrows can give rise to and conceal very sore, cracked skin. My eyebrows in particular can get a bit septic around the base of the hairs. Moisturisers help. My skin is otherwise pretty good these days.

My finger nails tended to de-laminate. Nail Envy nail hardener has helped a lot. The same lady doctor was very interested to know this and tells her other patients on these same drugs. My finger nails became very sore at the edges and this was unpleasant and made handling things tricky. This has now (touchwood) resolved itself and I am so much happier. I had a similar problem with a toenail that took months to heal. Now it's OK.

I'm sorry to say this, but the diarrhoea has been the most alarming side-effect, although it can be controlled fairly well with Loperamide.

I hope this is of some help. Don't be in fear of side-effects. Every person seems to react differently and at different times. You have a helpful gang of pals to ask here in this group. You're not alone.

Best wishes,

Neil

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Thank you Neil - your reply is appreciated and so good to know that I am “not alone”. That really helps.

Kind Regards

Sandie

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Dear LadySG,

Don't be afraid of the side effects - some experience them worse then others but I think it is worth it.

This is the first time I bring myself to talk about this openly- I have read this forum a lot in the last year and it has helped me a lot . My mom was diagnosed with cancer at the end of May last year and we had a terrible time of actually finding out where the primary tumor was.

She started having back pain that would go down her leg and therefore when I first heard about it I thought that it is perhaps a hernia .

It turns out it was metastatic bone cancer that affected her spine ( fracture on T12 ). At the local hospital ( she lived in a small city in Romania) I was told to basically take her home and keep her in bed with lots of pain medication .

I refused ofcourse and found a private hospital in Brasov ( Sf Constantin hospital) and a wonderful neurosurgeon that agreed to operate on her spine and fix it. The surgery was done in the beginning of June last year ( he was an awesome doctor ) and she was put on her feet really fast. We were referred to the Oncology center at the same hospital. They re-did all the tests and we found out that the primary tumor was in her lungs with multiple mets that were spread in both her lungs and bone ( left hip) and a small one in her brain. Her doctor ( again we got lucky and had a wonderful doctor that really cared about her patients) recommended biopsy to test for the EGFR mutation. I didn't want that for her because my uncle recently passed away from lung cancer and I knew that the procedure could be painful.

I asked if instead of biopsy we can do a plasma /blood test and luckily she remembered that she had some vouchers from the genetic institute. She called them and they confirmed that a blood test can be done to test for the EGFR mutation.

It turns out she tested positive and we got approved for the Iressa treatment. By February this year when we re-did all tests after 6 months of being on it, my mom was doing amazingly well. All the mets all but disappeared , her scans showed no brain mets at all , the ones she had on her hips shrank a lot and in the lungs we could see almost not mets at all and only one or two that were very very very small - the primary tumor also shrank.

There were side effects , she had some slight rashes on her feet ( around her nails) , after her ears sometimes, in her hair, and her hair started growing again and she was annoyed with it etc but with proper care , good creams it wasn't something that couldn't be handled.

She was on her feet ( a big change for us from being bedridden) , she traveled with me and she felt great until June this year. There was a hiatal hernia complication. She had an old ulcer that she didn't operate a long time ago and that healed with stenosis. She started throwing up a lot and basically couldn't hold up any food or water. We knew she will need surgery for it eventually but I thought we can keep it under control with a proper diet.

We had to go to her local hospital again, since it was an emergency - they waited too long with the surgery - she couldn't keep up with her Iressa treatment and sadly after her surgery ,she started feeling weaker and weaker and I lost her on 31 July.

Writing this is very difficult for me - I have read so many stories that Iressa worked for many patients for years and I really prayed and hoped we will have a bit more time together.

I am however thankful that this medicine gave us extra time and that the time we had together was not spent in pain and suffering. We did a lot of things together, long walks in the woods, visiting museums etc - things that made her happy and that for me and my sister seem a miracle given her condition in may last year.

I do hope that sharing her story will be of help to someone else going through this.

And I also hope that for you LadySg this medicine will help you have many wonderful years with your loved ones!

Much love to you all,

Diana

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Dear Diana

Thank you so much for your helpful reply, I know that this must have been very difficult for you to write. I am so sorry to hear about your mum but I am so glad that you got to have some extra time with her due to the medicine being effective with the EGFR mutation. I am grateful to you for sharing some of the side effects that your mum encountered and for the reassurance that they were manageable.

Thank you for your best wishes

Much love to you.

LadySG

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