lee
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Posts: 7
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Post by lee on Oct 15, 2008 12:35:58 GMT 1
Hi all. I joined this forum a few months ago when I was doing some research on Tarceva. My Mam was diagnosed with non-small cell lung cancer (adenocarcinoma) in May 2007. After initial success with Gemcitabine/Carboplatin and radical radiotherapy, we were given the bad news this July that the tumour had started to grow again and that there were a couple of nodules on her liver. The oncologist recommended Tarceva. Within about four days of starting Tarceva, my Mam developed the "tarceva rash" all over her face... the oncologist said this was the worst case of this rash he had ever seen, but that was a good sign that the drug was working. This correlated with the independent research I had done, and in fact her skin was so bad that we were all convinced it must be having a positive effect. She also experienced many of the other side effects associated with Tarceva - extreme fatigue, loss of appetite, sore eyes etc. After 10 weeks my Mam had a scan and we found out that the Tarceva had done nothing. In fact, since starting it, there has been spread to the lymph nodes in her neck. I just thought I'd better post this to expose the flip side of all the success stories out there about Tarceva. Our sense of disappointment was only heightened because most of the stuff you read about implies that the worse the rash, the more likely it is that the drug is working... well, not always! Anyway, we have gained alot of inspiration from other people's stories on this website, and I'd like to thank everyone who contributes. My Mam starts more radiotherapy today, with the option of chemo in a few week's time. Does anyone have any experience of the chemo drugs vinorelbine and taxotere? Cheers, Lee.
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Post by shazbok on Oct 15, 2008 15:15:03 GMT 1
Hi Lee
Sorry to hear about your Mum if you have read my Tarceva diary 'Shazbok' you will see that I too had all the symptoms very severely whilst on Tarceva but it didn't work for me either, I too had the same chemo as your mum 1st line but that was unsuccessful so that as stopped after 3 sessions, I am 1 session away from completing 6 of Docetaxol otherwise known i believe as Taxoter and it is working I had a scan after 3 sessions and showed reduction in all tumors small or large, I will have another scan when treatment finishes and will post results. Tell your Mum not to worry but if they offer her cold cap to try it as have and have NOT lost any hair in fact it is growing like wild fire on my head - rest of body hair free saves a fortune at beauticians!!! Apart from this last treatment I have felt very well except for couple of days 2 days after treatment last 1 lasted nearly a week but small price to pay, and I have felt much better than I did whilst on Tarceva.
Good Luck Sharon
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Post by jljenkyns on Oct 16, 2008 15:06:11 GMT 1
Hi lee
it just gos to show that what works for one does not work for someone else, the positive if you find the positive is that at lease you were given the option to try the Tarceva albeit to no avail, looks like taxotere might be the next option fingers crossed for you
jim
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lee
New Member
Posts: 7
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Post by lee on Oct 20, 2008 13:16:27 GMT 1
Hi Jimmy, Sharon, thanks for getting back to me. Jimmy, I am so glad this drug seems to be working for you. I followed your story in the Gazette last year, and witohut your fight I doubt my Mam would have been offered Tarceva by South Tyneside. Sharon - thank you! You have made me feel a bit better about Taxotere, and I'm so glad it's helping you. Not sure when/if my Mam will start more chemo, she's got her last bout of radiotherapy today and it has knackered her (she had intensive treatment every day over four weeks lasty November, but is having just five session this time).
Speak to you both soon, Lee.
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Post by jljenkyns on Oct 21, 2008 20:20:58 GMT 1
Thanks lee
i get i am one of the lucky ones, So glad the fight did make a difference i just wished it would work for everyone. As for the radiotherapy actually floored me also it was a nightmare but got there in the end, hopefully your mam will feel the full benefit. As for the taxotere it seemear myself as though there is a lot of positives coming out of it something i thought i would never hear myself say. just goes to show how little we all know about these different treatments
jim
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lee
New Member
Posts: 7
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Post by lee on Oct 27, 2008 16:19:13 GMT 1
Hi, well, it has floored my Mam as well! She had her last one about a week ago, and the last week has been a struggle - she's been absolutely shattered. She's starting to pick up a bit now, she'll probably just find her feet in time for our next meeting with the doctor to discuss yet more treatment which could floor her again! I'll keep you posted, Lee.
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Post by jljenkyns on Oct 27, 2008 21:41:57 GMT 1
ok thx
jim
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