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Post by caroline on Apr 11, 2008 22:30:57 GMT 1
Hi,My husband has NSCL cancer since feb 05 he had chemo and radio. twice but the dr. gave him tarceva which he has been taking now for 10 days.We were so happy when he received it.We read on this and other site how everyone who is taken it got a new lease of life.He has come out in quite a bad rash and some diarrhoea which we were expecting,but he is hardly eating any food,sleeping a lot and feeling more unwell than he did before starting the tarceva what I wanted to ask is this normal?And if so will it get any better?He is on 150mg.He is not taking any other drugs.I dont want to ask dr.in case he takes him off it.SOMEBODY PLEASE REPLY I AM SO WORRIED ABOUT HIM.
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Post by Deanne Jenkyns on Apr 11, 2008 23:19:08 GMT 1
Hi Caroline, I Have read through your post and 1st of all would like to say how happy I am to see that you and your husband have been fighting this devastating disease for years ! I am also pleased that your husband has been given the chance to start tarceva. The side affects your husband is experiencing are common side affects of Tarceva, the rash is often a good indication that the drug is working, but at the same time I know it can be distressing. Look on www.onctalk.com the website is ran by an oncologist who has lots of experience with Tarceva and side effects. You can even email him personally no charge. I have sought advice from Dr west many times. Goodluck , please keep us posted as to how your husband is and how you are coping with everything. Deanne xxx
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Post by jljenkyns on Apr 11, 2008 23:34:34 GMT 1
Hi caroline
sorry to hear your husband is not having the best of time with the tarceva. the trouble with any new drug we all respond differently, maybe he just needs a little more time for his body to accept the drug as at the moment it is alien to his body defenses.!! eventually the rash will start to subside ( ask your doctor to prescribe docecycline this will help a lot with the rash and also use a moisturiser on the skin. maybe you should ask his oncologist about reducing the dosage until his body gets used to it.!! this is what i did originally.I also used tescos own make of immodium to help with the diaorrhoea unfortunately it is all trial l and error but hopefully you will find the right formula shortly, do not get dispondednt as i said before we all react differently
jim
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Post by caroline on Apr 12, 2008 0:28:06 GMT 1
Hi,deanne&jim,Thank you for your reply it made me feel a bit better.We will ask the dr. about docecycline and get some immodium from tesco. Caroline.
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Post by Deanne Jenkyns on Apr 12, 2008 13:20:24 GMT 1
Caroline, Glad you are reassured somewhat, everything is such a worry isn't it. I remember when Jimmy 1st started on the drug I was also afraid that he would have to stop taking it if the side affects got too bad. He has now been on it for a year and side affects are minimal, still has some skin problems but they are under control now. It does get easier, so tell him to stick with it.
Take care, Deanne x
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Post by daisey on Apr 12, 2008 17:42:15 GMT 1
Hi Caroline, my husband started Tarceva a few months ago. He too had ups and downs and it does take time for the body to adjust to it as Deanne and Jimmy says. After 3 months and still on the full dose of 150mg the side affects vary still but they are generally much better than in the first 6 weeks. You just feel so helpless don't you when the man you love is feeling so awfull! Do hope that things improve for you both soon. We've found its a case of managing the side affects as and when and theres a lot of info on both this site and the onctalk one. Hang on in there and take care of yourself too. Love Daisey x
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Post by caroline on May 9, 2008 0:37:45 GMT 1
Hi,Deanne & Jim Just to let you know took your advice and asked dr.for docecycine for Roys rash and it is clearing up like magic and also some cream to keep the skin from drying out.But he is still not feeling as good as he did before he started tarceva.He feels worse in the mornings retching and just unwell,but come the evening he starts eating and feeling better.Anyway I hope Jim is still keeping well.Once again thank yous for advise.Caroline.
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Post by Deanne Jenkyns on May 23, 2008 22:11:47 GMT 1
Hi Caroline, Wondering how things are going?
Deanne x
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Post by caroline on Jun 7, 2008 21:30:35 GMT 1
Hi Deanne and Jim,Roy has now been on tarceva 10 weeks and like you said it is getting better.He had a scan 2 weeks ago and one of the spots had gone down from 2cm to half a cm and 2 spots he had on the bones have gone.so we are very happy with the results.I was reading Jim diary update in it he said about taking doxecycline,does he take it all the time?The dr.only gave us one months supply which cleared the rash up,but since he finished the course they are starting to come out again.He is still retching first thing in the morning after taking tarceva.Has anyone any tips or hints on how to help with the morning sickness.Glad to hear Jim is doing so well.Caroline
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Post by jljenkyns on Jun 7, 2008 22:08:26 GMT 1
Hi caroline
To be honest i take the doxecycline all the time as long as it keeps the rash away why not?.As for the reduction in the tumours that is great news you must both be so happy with that. As for the morning sickness i have never suffered that so i cannot comment, maybe ask the doctor for some anti-sickness tablets?
jim
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Post by caroline on Jun 22, 2008 20:43:05 GMT 1
Hi,Roy has been on tarseva for 3 months now,he feel fine in himself,and rash under control.Only problem he has is he cannot eat and he has lost over 2 stone.Has anybody else had the same problem?and if so how long did it take yo eat normaly again.Thanks Caroline.
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Post by thistle on Oct 14, 2008 19:49:12 GMT 1
Hello everyone who is taking tarceva or those whose partner or loved one is taking it. My husband Paul has been taking it a week now. Some spots developed after four/five days to the face, neck and chest and he still has a bad cough which the drug does not seem to be helping. He is extremely tired and sometimes cannot keep his eyes open and his face has fallen into his food. At the moment the worst thing for his is the mouth ulcers on his tongue and inner lips preventing him from having a hot drink and his throat almost closing up with a swelling and rawness. The nurse at the hospice shone a torch down it today and said there was no infection so no immediate need to consult the lung cancer specialist nurse and I managed to get an over the counter throat rinse which soothes the whole mouth area which he says has helped. Like Roy Paul's diet is dreadful, I gave him complain soup tonight but he eats very little and he has lost a lot of weight and muscle from his frame. His solution is to go on the Mr Kipling apple pie diet as he finds that if he likes something there is more chance that he will eat it. I am finding that tesco or sainsbury strawberry milk goes down well with him too. All for now, would be grateful for any feed back if any has any words of wisdom. Thanks again for the wonderfuls site. Love Kimxx
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Post by dsharpy on Oct 14, 2008 23:21:49 GMT 1
Hi Caroline and Kim Can I just ask that are they having a problems at all with texture of food my dad can't eat certain foods because the texture makes him sick he too has lost a lot of and just wondered whether this is a common problem although I have not heard of it much. I have also learned that let them eat anything as long as they are eating something and the onc. said cakes are good because they are full of fat. Donna
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Post by thistle on Oct 15, 2008 9:27:05 GMT 1
Hi Donna,
Thanks for the reply to my post. I guess mr kipling apple pies are full of fat, so good choice for Paul but not for me!! He has awoken today with a white covered tongue with thrush not unlike how he was when he had chemotherapy last year which did not work. I am hoping this does not mean that his immune system is down. He is too tired to go out today and had a very restless night. Onwards and upwards!! Much love, Kimxx
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