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Dawn
Apr 11, 2007 11:52:56 GMT 1
Post by Deanne Jenkyns on Apr 11, 2007 11:52:56 GMT 1
Hi Dawn, I know that your Dad has the rash like Jimmy. I just wondered if he was using anything on it. Jimmy has been using E45 cream to keep the area moisturised becasue his skin is also quite dry. This seems to be helping him. Hope all is well. Keep us posted.
Deanne x
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Dawn
Apr 11, 2007 21:48:20 GMT 1
Post by dtay on Apr 11, 2007 21:48:20 GMT 1
Hi Deanne, Dad has a spotty rash covering his chin, he also has itchy dry skin on his neck and shoulders. I am going to ask him to try E45 and will let you know how it works. Dawn x
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Dawn
Apr 14, 2007 13:14:09 GMT 1
Post by Deanne Jenkyns on Apr 14, 2007 13:14:09 GMT 1
Hi Dawn, Just wondered hwo things were going with your Dad? Hope he is ok and tht you are ok too.
Take care Deanne x
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Dawn
Apr 19, 2007 10:42:42 GMT 1
Post by dtay on Apr 19, 2007 10:42:42 GMT 1
Hi Deanne Checking in here everyday and reading all the fab things you are up to. My Dad is feeling better than he has for ages and he is defo putting this down to the Tarceva - he is still spotty and has an itchy rash and itchy eyes - but hey, beggars cant be choosers, thats what I keep telling him !! My Dad takes Tegretol for epilepsy ( although it is controlled and he hasnt passed out for many years) but my Sister saw an article which said that this may interfere with the effectiveness of the Tarceva so we mentioned it to his Onc and he said it was ok - I checked it out with Dr West (Onc Forum, really nice man) and he agreed that it did have an effect on Tarceva. He thinks Dads dose should be increased (he is on 150mg daily but apparently you can take 300mg daily if you are on a med that interacts like Dads). It is so difficult tho coz these Oncs dont like to be challenged in any way and you have to be so careful what you say - I think as Dad feels ok at the minute we might just see what happens and if he feels he is not so good I might take the point up with the Onc again. Keep up the good fight - I see you on every site I visit it is great ;D !!! Love to you both Dawn
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Dawn
Apr 19, 2007 11:20:26 GMT 1
Post by Deanne Jenkyns on Apr 19, 2007 11:20:26 GMT 1
Hi Dawn, Lovely to hear from you and great to see that your Dad is doing well. If we did not do our own research about things where would be. Health Care providers must hate the fact that patients have access to the internet because of the questions and challenges they face from people like us Where would we be without cyber space! I have been on that onc site and seen you on there and I seen your replies to a newspaper article above mine Hope your Dad continues to to well. Take care Deanne x
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Dawn
Apr 19, 2007 18:25:21 GMT 1
Post by dtay on Apr 19, 2007 18:25:21 GMT 1
I truly think you are a remarkable woman - constantly researching and fighting for what is basically a 'person's right'. Hopefully soon the 'powers that be' will listen. I am so pleased that Jimmy is doing so well. I read all your posts and articles and think they are great. Lots of luv xxxx
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Dawn
Apr 20, 2007 11:44:51 GMT 1
Post by Deanne Jenkyns on Apr 20, 2007 11:44:51 GMT 1
Hiya Dawn, You very kind to say such a thing but I don't think I am remarkable at all. when Jimmy was 1st diagnosed I thought I would die from a broken heart I completely fell apart and to be honest he was there for me more than I for him. This made me feel really guilty and selfish that he had to deal with my breakdown on top of being dealt the devastating blow of having cancer. He has been so positive right throughout and constantly worried about me and I have worried about him worrying about me. When they told us that he had a spread to his other lung we immediately asked about Tarceva to be told no you cannot have it even though you are a good candidate for it. I am not a strong person but for my husband I would move heaven and earth to keep him well. I did my research and my heart went out to other patients and families who were in the same position I found there postings on the internet heartbreaking because I could totally relate to how desperate they felt. I then thought I am not having this i am gonna make some noise. So hear I am making some noise. Cancer is a very private disease and a lot of people find it difficult to talk about and share their feelings. The more people making a noise though the more people will hopefully start to listen. So people like you coming on here speaking out about your Dad makes you remarkable in my eyes.
Take care of yourself Deanne x
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Dawn
Apr 20, 2007 15:03:37 GMT 1
Post by dtay on Apr 20, 2007 15:03:37 GMT 1
I am the same as you - I cried in the Doctors office when my Dad was given his diagnosis, and whilst I tried to be strong for him, he ended up being supportive of me as well as coping with the terrible news. He has always been so brave infront of me, although I think he has broken down to my Sister, I try to keep his mood buoyant and keep positive whan we are together - for me as much as him if I am being honest !! I fing it easier to cope that way. I am so proud of of my Dad -he is the best in the world and I struggle to come to terms with what the future holds. I think my Dad finds his situation difficult to talk about - he calls it his 'illness' and his 'complaint', I have never heard him call it Cancer. I guess he finds it easier to cope that way. He used to say to me 'you spend far to much time on the computer, as a little knowledge is a bad thing, just leave it to the Doctors' now he is pleased that I am getting little snippets of info and he asks me things to check out for him !! We are all desperate aren't we - so please keep making your noise ! Lots of luv Dawn x
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Dawn
Jun 14, 2007 19:41:51 GMT 1
Post by Deanne Jenkyns on Jun 14, 2007 19:41:51 GMT 1
Hi Dawn, How is your Dad doing? Hope all is going well, I know you said he was thinking about a holiday did he go?
Take care Deanne x
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Dawn
Jun 15, 2007 17:52:36 GMT 1
Post by dtay on Jun 15, 2007 17:52:36 GMT 1
Hi Deanne, Dad is doing ok so far, although he has a chronic cough. He went to my sister's Villa in Southern Spain and had such a great time and felt so good that he decided to extend his stay and didnt come back until yesterday !! He said that he hardly coughed at all whilst he was there and the heat made him feel good. We are going over for a fortnight at the end of July and hope that Dad will come with us if he still feels ok - my kids love his company as he is always so full of fun with them !! xx
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Dawn
Jun 21, 2007 21:19:41 GMT 1
Post by dtay on Jun 21, 2007 21:19:41 GMT 1
Hi Guys Dad went for his monthly check-up with his Oncologist today and had a chest x-ray and his cancer is still stable with the Tarceva. We are delighted and he is over the moon. I just hope and pray that the Tarceva works for a long, long time. Dawn x
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Dawn
Jun 21, 2007 21:55:06 GMT 1
Post by Deanne Jenkyns on Jun 21, 2007 21:55:06 GMT 1
Dawn, I am so happy that your Dad is doing so well! It really is uplifting! Long may it continue hun!
Take care Deanne x
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Dawn
Jun 21, 2007 22:02:40 GMT 1
Post by dtay on Jun 21, 2007 22:02:40 GMT 1
Thanks Deanne - I am so happy for him, considering 4 months ago they gave him 2 months to live without treatment - we had to ask for Tarceva, it wasnt offered to us, and I firmly believe that without it my Dad wouldnt still be here. It has given him much better quality of life than he had - he looks really well, as I have said before, unless you were told you wouldnt know he was so ill. I just pray it continues. Dawn x
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Dawn
Jun 21, 2007 22:13:40 GMT 1
Post by Deanne Jenkyns on Jun 21, 2007 22:13:40 GMT 1
Hiya Dawn, I am so pleased that your Dad is doing so well. I seem to remember you saying that they said his cancer type was not fitting with the drug! Just as well he has his family fighting his corner otherwise...well it does not bare thinking about does it. It makes me sick to the stomach when I think about others who are alone and do not have anybody and are basically been sent away to die. It is so upsetting. Through our own research we are where we are now. I just hope that others find this website and see that their are other options. Sadly though people are not in the position to fund a drug for even a short time and their are many more drugs out their being denied to patients. The cancer treatment in this county is 3rd world!
Deanne x
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Dawn
Jun 22, 2007 10:08:28 GMT 1
Post by phillipa on Jun 22, 2007 10:08:28 GMT 1
Dawn,
this is good news. Kent and I are going having his scans sent up to Cookridge. the words from his oncologist up there 'I think we can do something to knock this out'. Far different to what we have been told down here, but we will wait until they have reviewed the scans. The golden ball treatment I have been banging on about for the last four months has been reported in the papers over here. They start trials in Texas next month. Kent met the criteria for this trial, we should have accepted.
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Dawn
Jun 22, 2007 18:45:39 GMT 1
Post by dtay on Jun 22, 2007 18:45:39 GMT 1
Phillipa - I saw that article and it sounds great. Sounds like those Docs are on the ball and know what they are talking about - will be thinking about you and Kent. x Deanne - you are right, they told my Dad that he didnt fit the criteria for Tarceva and that his cancer wouldnt respond !! x
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Dawn
Jul 20, 2007 16:13:22 GMT 1
Post by dtay on Jul 20, 2007 16:13:22 GMT 1
Hi Guys - Another update- Dad went to see his Onc again yesterday and they are still pleased with him. His cancer is still stable and his quality of life is good. That is great news for us as he is coming to Spain with us in ten days and I want him to have a great time with his 3 grandchildren. He still has a cough but it is because of the location of his tumour and doesnt affect him too badly. I am so pleased for him coz I love him sooooooo much !! xxx
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Dawn
Jul 20, 2007 19:59:28 GMT 1
Post by Deanne Jenkyns on Jul 20, 2007 19:59:28 GMT 1
Hiya Dawn, fantastic about your Dad. Hope you all have a fantastic holiday! I know you will!
Deanne xxx
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Dawn
Jul 20, 2007 22:10:29 GMT 1
Post by jljenkyns on Jul 20, 2007 22:10:29 GMT 1
Hi Dawn
Great news for you all i hope you all have a greta time in spain it will do your dad the the world of good. His cough will probably lessen with all the nice clean fresh air.
jimmy xx
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Dawn
Jul 21, 2007 1:55:46 GMT 1
Post by norfolkbirdie on Jul 21, 2007 1:55:46 GMT 1
Excellent news Dawn, have a great holiday, enjoy!!! Ros
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Dawn
Aug 21, 2007 21:04:50 GMT 1
Post by dtay on Aug 21, 2007 21:04:50 GMT 1
Dad had another scan a couple of days ago as he has been feeling a bit rough - was very worried incase his tumours had progressed as he wasnt eating much and was very tired - we were all panicking like mad thinking that the tarceva wasnt helping anymore - great news tho, no more growth so all is still stable. I love stable !! Since the results he has been given a boost and is feeling much better again. Going on holiday again for a week - needing more sun after the rain we are having again in UK!! dawn x
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Dawn
Aug 21, 2007 21:17:30 GMT 1
Post by Deanne Jenkyns on Aug 21, 2007 21:17:30 GMT 1
Dawn, My heart sank when I read the first couple of lines of your post. Then I read the rest of it and I thought thank goodness!!! Thats brilliant news! Enjoy your holiday and give your Dad a huge kiss and a massive ((((hug)))) from me!
Deanne xxx
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Dawn
Aug 22, 2007 20:05:42 GMT 1
Post by dtay on Aug 22, 2007 20:05:42 GMT 1
Thanks Deanne - will give him a big kiss from you. We went thru a few days of panic as Dad was feeling really rough and i was worried that he was deteriorating and you always jump to the worst conclusion, dont you ? My sister took Dad to his Onc in Bristol who said that she thought that the Tarceva wasnt working anymore and they did a chest x-ray which was inconclusive. So they did a ct scan to see if there was any progression and after consulting with a Radiologist they said there was no change and that he was stable. We were all so relieved ! He is continuing the Tarceva, thank goodness. Just finding out that he is still stable has given him a new lease of life and he is going to Spain with my sister and my 14yr old daughter. I decided that I might aswell go away for a week too so I'm looking to get a last minute cheapie this weekend !! I was checking out Dr West's website and he has done a really interesting post on staying on Tarceva even after slight progression as it could be beneficial with symptom management. Obviously it works differently for each patient but potentially it could be helpful. Hope Jimmy is still doing so well, Love Dawn xx
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Dawn
Aug 27, 2007 18:07:12 GMT 1
Post by Deanne Jenkyns on Aug 27, 2007 18:07:12 GMT 1
Hi Dawn, Been wondering about your Dad, are his eyes any better? Hope there is some improvement.
Deanne x
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Dawn
Aug 27, 2007 20:38:40 GMT 1
Post by dtay on Aug 27, 2007 20:38:40 GMT 1
Thanks for asking Deanne, you really are a special Lady ! Dad is much the same - although he says he thinks his eyes arent watering quite so much. Dr West doesnt think its the Tarceva - I think I have baffled him !! He is in Spain with my Sister (Dad that is, not Dr West !!)and I was thinking that it might be an allergic reaction to the heat or the sun. They are going to put a call into Dads Onc in Bristol in the morning to see what she thinks - she might suggest a stint off Tarceva so that Dad can see if it is that causing his eye problems. Other than that he is great in himself. I might have mentioned to you before that my Sister has a house in Spain and they go regularly - they were at the supermarket there this morning and someone stole my Sisters handbag with everything in including her passport, credit cards, 3 mobiles, her husbands wallet etc.......... good job my Dad is there as he is the only one with any money now !!! I'm off to Turkey for a week in the morning but hope that you and Jimmy are both ok, and I am delighted that he is happy with his new Onc . Dawn xxx
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