I have been taking gefitinib for 3 years. I recently had a 2 week break and then my oncologist reduced my does to every other day due to bad hand and foot syndrome.
my latest scan shows 2 new tumours. My oncologist seems fairly certain that gefitinib is no longer working. He doesn't think the break in treatment has anything to do with the new tumours but hasn't dismissed the possibility altogether. I am now back on the full dose while we wait for test results for osimertinib and immunotherapy treatments.
Has anyone had any experience of taking a short break and their cancer recurring or growing in such a short time.
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Readhill
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Lung cancer with EGFR mutation will usually respond very well to targeted therapies such as Gifitinib, however they almost always become resistant, the time scale in which this resistince develops varies greatly from patient to patient.
Just as there are several different types of EGFR mutations, there are several mechanisms by which cancers can become resistant. Cancer cells are always changing, and often develop further mutations and this will make them resistant to a particular drug being used. As you have said there are other treatment options which your oncologist will discuss with you and offfer a furhter treament plan.
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Hi Readhill, Like you I was on Gefitinib/Iressa for just over 3 years. I couldn't tolerate the side-effects SO my oncologist put me on a tablet every other day and I stood up to that and reduction all the time. Then found to be getting resistance (general growth all round) - blood cultures couldn't pick up the next mutation T790M. However, I then had to wait a while, for it to grow more in my Lymph Nodes and managed (still taking Giffy) to eventually get a biopsy via EBUS - down my throat into Lymph nodes at top of my lung. This was following 3 attempts at getting a biopsy by CT !! This biopsy they did get was found to have T790M (as is the main other mutation- although some people show PDL-1) and I started on Osimertinib/Tagrisso. I'm taking full dosage at 80mg per day and finding no side-effects apart from nail damage BUT nothing like Giffy! Thank goodness!! It was a real struggle getting new biopsy but worth it in the end.
I really don't think a short break from Giffy would have made you have growth to notice - tho apparently some people do have blips - with growth and then reduction again?? My opinion is that you have had a really good run with Giffy (3 years is quite a long time for it to keep working) - think 11 months is the norm. Time to,hopefully, follow my path - I've been on Tagrisso for 8 months now and all reducing.
I have had blood tests for osimertinib and they are testing previous biopsy samples for immunotherapy.
The consensus of opinion is that I have become resistant. I have 2 visible tumours that have appeared really quickly. There was only about 5 weeks between scans and nothing showed up on the first one.
It is unlikely that it is the break and reduction in dose but as my oncologist keeps saying, nothing has ever been straightforward or text book with me lol.
I am not looking forward to the possibility of another biopsy because the anaesthetic didnt work when I had the last one but if it has to be done I will have to get on with it lol.
I had radiotherapy on 2 tumours last year and since then everything has been fine until these new growths. The oncologist said it was not uncommon for an isolated patch of lung to become resistant but the new tumours are not in that patch.
I have coped with the side effects until I got hand and foot syndrome which was when I had the break because I was exhausted with the constant pain and lack of sleep.
Hi again, I do hope the tests show something for you. It's great really that there are now alternatives available - when I started Giffy it was the only first-line treatment. That sounds awful "hand and foot syndrome" - not heard of that side-effect before.
I suppose we also have to accept that CT scans can miss things - after all they are just slices across our bodies - so perhaps the new tumours were there but not big enough to pick up on first scan??
Wishing you some positive news next week and all the best if you do have to have another biopsy. In my case I was never given an anaesthetic only sedation (no good either)!!
I was the same. Gefitinib was my last option when I started taking it.
Hand and foot syndrome is quite common with chemo but isnt even listed on gefitinib side effects. It feels like my hands and feet are having boiling water poured on them all the time. I am using udder cream...from the vets....it really helps lol.
I think the new tumours were probably there. My lungs were covered. 3 weeks after starting gefitinib you couldnt see them on an xray.
One is about a centimetre which is quite a significant growth in a couple of weeks.
I wasnt put under for my biopsy. The first one I had was fine. They went in through by back and I didnt feel anything. The last one through my bloomin boob...that was the one that was agony.
If I have to have another I will just have to get on with it. The only thing that really freaks me out is radiotherapy and i dont know why.keep up tge good fight.
OOOH Hun That sounds painful!!! The biopsy through your boob!! Feel for you.
Do hope they get your results fast- the hanging about is awful. However, it's normally a good couple of weeks isn't it for biopsy testing??
Meanwhile, re your hand and foot syndrome, I have developed feet pain/swelling/redness and I'm just reminded by you to look up whether this may be what is happening to me- thank you.
Do let me know what the results are and we'll try to guide each other through!
It sounds very much like you could have hand and foot syndrome. Lots of moisturiser and try udder cream. Get it from an online vets though because there are lots of companies selling it in fancy packaging and charging a fortune. Elevate your feet on a night. Also try a cool mat.
I havent had a biopsy yet this time round. Waiting for blood tests results first. It is taking a long time.
My oncoligist is excellent....teaches all over the world apparently...but his communication is rubbish so I try to just get on with things until I hear from him or from the nurse.
I would really like to keep in touch. It is goid to talk to someone going through the same things xx
Hi again Readhill- do you have a real name?? Oh so you're waiting on blood cultures??!! Now in my case, they didn't show any other mutation. BUT with nagging of my oncologist (who I have trained well now) we agreed for me to have a CT biopsy first - not enough tissue. Then an EBUS to get at lymph nodes at the top of my lung. Just realised I am repeating myself??!! Sorry!
I found with my oncologist that I saw first, she was one of those who did not want/expect to be questioned as to her decisions. Very frustrating - then along came my present guy- superb- listened and figured I was one who wanted to be very involved in decisions about treatment. I got him on board by sending him questioning e-mails before/between my appointments. He seemed to understand this method and, when they initially said "no way to get a biopsy" he looked into the ways I suggested (even to the point that I said I was happy to have a resection) if it gave me the tissue they needed. Maybe worth e-mailing your Oncologist's secretary for your results??? Waiting is the very worst time I've always found.
Thankfully we got there in the end!!
Waiting on Macmillan nurse to discuss this "foot & mouth" LOL!!
I lurk around on the Macmillan Community as "dizzie-wh" if you fancy joining me there. Meanwhile I'd love to keep in touch. Going to try and give you my e-mail address - if this will allow?? g.wheelerhayden@gmail.com. Seems to have let me.
Just been reading through what you've been saying and am not only fascinated by what you have to say about Gefitinib (I'm on that) and where it might lead, but also massively entertained by your good humour. Brilliant!
My first needle biopsy was through my chest. Apart from coughing up some blood for a couple of minutes, it was reasonably OK, but I was saddened that as a man who was proud of his hairy chest, I'd had a daft looking patch shaved off.
On requiring a second biopsy two years later, I knew what to expect and so I sorrowfully gave myself a serious chest hair trim. "I've prepared this time", I told them, pointing out I'd had a trim. "Oh. That's too bad", they said. "We're going through your back this time!"
Lol. My second biopsy was startling in the blood front. They said I might cough up a little but of blood...so I imagined a ladylike cough into a hankie.....no, it was like something out of the exorcist.
I'd been told not to cough, but asked if I could because I just had to. They actually said "you can do a ladylike cough"! It was a huge bloody clot! Second time round was worse. Had to have 100% oxygen for a while before the blood flow stopped. Backstabbers!š
Oh My Life - you two!! Exactly the same with my first CT Biopsy - so brilliantly described - like something from "The Exorcist" and mine wasn't Dulux best!!! I always refer to it as "pebbledashing" the CT room!! The guy had already hit my rib on the way in SO should have expected something dire??!! ?It was as he said "I'm going to clip now" WHOOPS - caused my lung to deflate too !!
Welcome to the discussion Neil - you've got me confused with talking about chest hair and your site name "SueD_1" ??? Love the bit about Backstabbers!!
How you doing Readhill ?? Managed to nag your Onc into any results??
Spent 6 hours at A&E last night Grrh! GP thought possible DVT with my feet - then after some discussion they decided it was cellulitis and infected somehow (funny it's both feet). So antibiotics and Vitamin B - just in case it's hand and foot syndrome. They always like to keep their options open it seems??!!
Plodding around like I'm 103 today with lead weighted feet! Supposed to be in York for a face-to-face meet-up of Macmillan people too - so really fed up!!
Hi.Thank you for your email address Diz. I will drop you a message in the next couple of days. Been really tied up fighting social workers....totally different story to the whole cancer saga...trying to stop them shoving my learning disabled brother in a 'unit' after 30 years living in the community. I appear to be winning at the moment although I have been accused of bullying the poor dears but that's for a different forum to here lol.
Anyway after no contact from the hospital with results I phoned last week because I was running out of gefitinib. The nurse I spoke to made me an appointment and told me that my PET scan was fine...now I thought she meant we had no spread to anywhere outside my lungs. She also said they didn't have any blood results back and that the radiotherapy that I have been patiently waiting for an appointment for had been cancelled.
So off I went to see them to get my prescription on Friday. I saw my specialist nurse who was slightly confused that I had not had an appointment to see the oncologist. She has been on holiday. So she read a very long report, sighed a few times, then informed me that the 'tumours' they were going to zap did not light up on the PET scan so they are either benign or it is possibly just some inflammation. Lymph nodes are all clear and no sign of anything anywhere else either. The blood test results aren't back yet but as it would appear that the Gefitinib is in fact still doing its job they aren't really an issue.
I am usually quite good at taking information in but I have to admit I was slightly confused. I have spent all this time thinking I have 2 bloody tumours festering away and no one bothered to tell me that I haven't. I am very glad he decided to do a PET scan otherwise I would have spent 4 weeks being zapped for nothing, not to mention the fact that it is a 3 hour round trip to the hospital every day. He was so certain, in fact his words were 'I don't think there is any doubt it is cancer.'
I should have been doing somersaults but I had a total meltdown. Sobbing, mascara all over, the works, while telling her how shit I feel, how much I struggle with life, I think I might have thrown in a few choice words about my lovely hubby because we had had a huge row a few days before and I was very annoyed with him lol. It is the first time I have cried at any appointment in the 6 plus years since my diagnosis. I was a right bloody drama queen.
It is all very confusing. Last year I had 4 weeks radiotherapy for 2 tumours and he said that he thought only part of my lung had become resistant to Gefitinib...apparently this is quite common....I didn't have a PET scan then. I hope the bugger was right and he wasn't blasting me for no reason. I suppose we are guinea pigs with this stuff because it is all so new.
How are your feet now Diz? I know what you mean about plodding around, I walk like a bloomin penguin some days. They gave me steroid cream when mine first started then they gave me a course of antibiotics in case it was an infection. They only decided it was definitely hand and foot syndrome after neither worked.
Neil I often think the buggers should be done under the trade descriptions act. Or perhaps we are the exception and most people do cough delicately into a nice cotton hankie lol.
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