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Post by shazbok on Feb 29, 2008 23:55:54 GMT 1
Hi thought I would start new thread to let you all know what's happening
Mon Night had base line X-ray & CT scan,
Tues morning 1st 150mg tarceva tablet.
Thursday night not sure if can see a red rash or maybe so much positive thinking I'm imagining it!
Today Friday I look like I've got heat rash crossed with measles rash goes from. under my chin to middle of my waist - arms clear. Scalp full of it and boy does it itch- not moaning must be working ;D
Will keep you posted
Love n Hugs to all
Sharon x x x x
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Post by daisey on Mar 1, 2008 0:03:00 GMT 1
Sharon, Hi!
Bob didn't get a rash till about a week or more. He was lucky in that it didn't itch though. Do hope you can sleep with it and that you can cope ok. Its odd because if there's no rash you worry! So unlike "normal"!!
Take care of yourself.
Love Daisey xx
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Post by jljenkyns on Mar 1, 2008 11:04:38 GMT 1
Hi Sharon
I think the rash affects everyone differently but with the same outcome the dreaded rash!! Have you been given any Doxecycline? I have also i have tried a full range of different creams and moisturising products on my skin, oddly enough the only one that seems to work is loreal, Maybe it was just coincidence but this is the one that seems to be working.
jim ;D
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Post by Deanne Jenkyns on Mar 1, 2008 11:55:51 GMT 1
Hi Sharon,
people think that it is a small price to pay having a rash, but it can get quite bad and be quite uncomfortable. Jimmy suffered in the beginning so much so that it caused him sleepless nights and at one point had to have a reduction in the dose. The reduction in the dosage worried me as I thought it would not work as well, but it still worked really well, seems that some people are more sensitive to Tarceva than others. What I am trying to say Sharon if it does get really bad, don't suffer in silence contact your oncologist. As jimmy said he takes a steroid doxocycline which really helps, and keeping the skin more moisturised. When Jimmy got the itch he used to apply calamine lotion to help with the itch, I have heard others say aloe vera gel works for them. How are you feeling apart for the rash?
Take care
Deanne
xxx
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Post by shazbok on Mar 1, 2008 18:11:16 GMT 1
Thanks so much for all replys Saturday - Rash is much more noticeable and raised especially on my back and neck, not made it to face yet, but the only place it Itch's is my scalp at suggestion of friend with severe eczema washed hair in 50/50 polytar/baby shampoo quite bareable as long as no one touches head! Sleeping been ok but husband is on ski hol 'till tomorrow so not sure wot it will be like when2 of us in bed!! other wise feeling great - no aches or pains just a tickly cough and usual breathlessness but not enough to stop me decluttering & spring cleaning upstairs of house - womans job never done no matter what our diagnosis may be!! (well not in this house any way  ) I know what you mean Daisey about being relieved when rash appeared , my husband & friends were cheering in French bar when I told him -as for normal I gave up many years ago on the meaning of word normal. Will keep posting with events as they occur Love & hugs to all Sharon |
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Post by daisey on Mar 2, 2008 16:05:13 GMT 1
Hi Sharon,
glad you seem to be coping so well. Bob has also found taking a 5mg steroid prednisolone per day has helped with the rash too . Its still there but ntb. He also has a beard which is very useful right now as coverage! A note of caution on the polytar, it can cause a nasty allergic reaction in some people. Me especially! Wont bore you with the details but I steer well away from anything that contains coal tar now. Bob uses a olive oil soap to wash and shave with, contains no sodium laurethate (which strips the skins oils). There is also a spray called dermamist which is an aerosol so you can spray it everywhere including your back. Keeps the skin moisturized and hence less likely to rash. I think its only available on prescription. If you run out of spring cleaning, I have plenty that needs doing!!!!LOL
love Daisey. x
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Post by Deanne Jenkyns on Mar 3, 2008 22:04:34 GMT 1
Hi sharon,
hows the rash today?
Deanne
x
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Post by shazbok on Mar 4, 2008 22:29:18 GMT 1
Today is day 8 o Tarceva and I am a mess
Red raised rash on ears, neck, back and front down to waist level
Rash on face so covered people think I've got sun burn until get close and see all yellow headed spots on and around nose chin and lips also have them in ears & all over scalp!!
As no idea if this minor, moderate or severe rash decided to call into clinic to see if could see onc - they were brill seen straight away and it's a moderate rash at moment, got list of ideas to try via GP.
So went to Gp's no appointments left 'till flashed chest so now armed with acne gel and scalp treatments will name them if work.
Refuse to complain as so many people are refused Tarceva by their PCT and at least I can still do and go where I want if anyone stares to much I'll just explain I have lung cancer and this is treatment - tends to shut them up quite fun really watching them squirm. I did this at Orlando airport when was asked 'whats happened to your hair' at passport control !
Love & hugs to all
Sharon x x x
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Post by Deanne Jenkyns on Mar 4, 2008 22:57:46 GMT 1
Hi Sharon,
sorry the rash is playing up at he moment. I hope the medications from your GP help and things settle quickly!
(((hugs))))
Deanne
xxx
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Post by jljenkyns on Mar 5, 2008 9:51:31 GMT 1
Hi Sharon
After 12 days on tarceva my rash was so bad that the onc said i should stop taking it completely, i did not follow his advice but i did come off it for a few days to give my body a rest then tried taking just the dosage. That worked i think it is an individual thing and all down to trial and error. hope you find the solution.
jim
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Post by Deanne Jenkyns on Mar 11, 2008 21:05:58 GMT 1
Hi sharon,
Hows the rash? Hope things have settled down.
Deanne
xxx
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Post by shazbok on Mar 14, 2008 17:26:49 GMT 1
Hi Deanne & Jim Sorry no reply earlier keep hoping things will get better! 'Rash' (by that I mean red marks with yellow heads) starts at top of scalp as far as wrists and stops at my waist back and front face is a real mess more purple than red and yellow heads, went to clinic on Wednesday and completely threw the registrar came out with doxecyclin and more Tarceva as we are off to France skiing next week for Easter hols. May as well scare all French as well. Am trying a skin regime that my hubby found on internet called Good Skin on Tarceva at www.practicaltruisms.com/GoodSkin.htmlno miracle cure yet but it's also no worse. Bit fed up as really do look a mess just keep telling myself better than the alternative. Hope every one else keeping well and having fun Love & hugs to all Sharon x x x |
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duane
New Member
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Post by duane on Mar 14, 2008 17:38:31 GMT 1
Hi Sharon,
Ange was fed up with how she looked until she had her 1st x-ray, that made up for it. 6 months later the rash has almost gone & as I've said on this site before she's living a normal life. Keep with it if you can,
Take Care
Duane
xx
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Post by Deanne Jenkyns on Mar 29, 2008 20:09:12 GMT 1
Hi Sharon,
Been wondering how you are doing? Hope the rash is more manageable now and that you are OK.
Deanne
xxx
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Post by shazbok on Mar 31, 2008 11:58:57 GMT 1
Hi all
Just got back from skiing in France & yes I managed to ski as well I was just selective with the days weather dependent as have become fair weather skier. I can recommend mountain air to everyone as once again I felt great and skin cleared on face really well no yellow headed spots just a darker colour but looked like every one else with goggle marked suntans!! Still struggling with bowel problems but at least a bit slimmer. Going for CT scan tonight and see Onc next wed so fingers crossed for a positive outcome. Must admit to feeling a bit more tired before went away but probably due to just trying to do too much as always.
Luv and Hugs to all
Sharon x x x
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Post by Deanne Jenkyns on Apr 1, 2008 11:13:02 GMT 1
Hi Shaz,
Lovely reading this post and the fact that you went skiing! Jimmy had some Tarceva related stomach problems for a while too but it soon cleared. He took Tesco's own brand of diarrhoea tablets they seemed to be better than immodium for him. I read in another post that you were having a CT yesterday. I hope it goes well and you don't have too long a wait for the results.
Take care
Deanne
xxx
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Post by shazbok on Apr 3, 2008 14:23:36 GMT 1
Hi Deanne
It's easy to ski once you know how it's all downhill!!! Its the getting up when you fall that's the problem and walking and carrying skis that's hard but I have two 6foot very fit sons to help there.
Yes get my results next week 9th so got everything crossed, have decided not to do sponsored walk on 12th as rehearsals for this Fashion show taking up far more time and energy than I ever expected what happened to walk to the bottom of cat walk and turn around!!! Never mind keeps me away from housework and the ironing pile.
Hope every one on the site feeling quite well, I must admit Tarceva does seem to be making me very tired longer I'm taking it hopefully this will pass have too much to do to spend extra time asleep. Will post news on wed/thurs
Luv and hugs to all
Sharon x x x
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Post by shazbok on Apr 24, 2008 14:28:40 GMT 1
Hi to all
A quick update as have poorly laptop so doing this at work and very busy, when am I not!!
Appointment to see onc went well CT scan showed only very slight deterioration, measurements of 1mm or 2mm increase this could just be due to where 'sliced' to do the readings.she believes that in the 5 weeks since last CT growth would have been alot more so it's a positive result and I'm staying on Tarceva at the 150mg dose.
I am having some problems with it setting off my IBS so have been struggling for last 2weeks but things seem to have settled down, skin not too bad V V V dry no matter what I use or how often but things could be worse.
Sorry to see new people having to find the web site hope every one out there not suffering too much
Luv & hugs to you all
Sharon x x x x
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Post by Deanne Jenkyns on Apr 24, 2008 20:46:50 GMT 1
Hi Sharon,
Fantastic news, so happy to read of another positive response! Sorry that the IBS is causing problems, hope it settles soon. NICE again have kncked back the guidence for Tarceva! It's a crime that it is being withheld when so many could benefit!
Take Care and thanks for updating with your Fab news! it's always good to read!
Deanne
xxx
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Post by shazbok on Jun 4, 2008 14:05:42 GMT 1
Hi all
I'm afraid it's not good news, Came out of hospital last Friday after 18 days in with pneumonia! After a variety of x rays ct scans and ultra sounds it was decided that cancer has grown so Tarceva hasn't worked. So all my suffering of horrendous skin rashes and keeping no food in was to no avail except I have lost 2 stone so look alot better - always looking for the positive. Unfortunately I missed my chance to Strutt my stuff on the catwalk so all that practicing for nothing never mind there's always next year god willing. So it's now back to the dreaded chemo once I've got rid of this infection. But I am grateful that Doncaster PCT did give me the chance to try Tarceva after a little persuasion, and I wish everyone else on it much better luck than me. But at least it still hasn't spread any where else and still contained within my lung I have 1/3rd of lung capacity in R lung and just about full capacity in the other so lets hope it's 3rd time lucky for treatment working when I get to start Docetoxil
Chin up to every one and luv & hugs to all
Sharon x x x
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Post by Deanne Jenkyns on Jun 4, 2008 21:00:37 GMT 1
Dear Sharon,
I am so sorry that Tarceva has not worked it's magic on you I really am. So sorry you have been so ill ((((hugs)))) Hope the infection is soon clear so you can crack on with treatment. Keep us updated honey.
Lots of love,
Deanne
xxx
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Post by jljenkyns on Jun 5, 2008 18:01:35 GMT 1
Hi Sharon
the same goes for me , such a pity the tarceva does not work for everyone. I am sure you will be strutting your stuff next year.
jim xx
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LC charity Ball
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