kd
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Post by kd on Mar 20, 2008 22:58:27 GMT 1
Hi - new member - what a crying shame we're all in it! I need advice but firstly Deanne I have read what you've fought and achieved for your husband. All I can say is congratulations. The strength you have shown and still showing on behalf of others is inspiring and frankly exceptional. I know you're not after praise but justice for all, and that we cdertainly don't have it in all parts of the "United Kingdom" ;D this situtation only brings total shame on "our Government" but nothing seems to make any difference.
To Jimmy - utterly wonderful news for you, fantastic you have reacted so positively well to Tarceva. I wish you continued sucess with it.
The advice I would like to ask is my Mum diag NSCLC Dec 06, had surgery to remove middle rt lobe, chemo, recurrence Oct 07 given 3w radio, some improvement though not as expected. Started Tarceva 8th March, now chronic fatigue (though she had this before anyway) nausea intermittent, but no sign of rash yet. I have read the worse the rash the better the treatment is taking!!! Can I ask other peoples experience of time taken when the rash started? This is now day 13 and there is a small nodule appeared on the chest area today but that is all. I'm of course terrified it's not going to work. Mum has so many other health problems, but is such a strong character and fighter but this is like nothing else on earth to fight is it? Sorry to go on - I know it's a Bank Holiday & wish all who read a Happy Easter, I'd appreciate any advice re:length of time rash appears and positive results, good luck everyone!, Kim
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Post by Deanne Jenkyns on Mar 20, 2008 23:17:38 GMT 1
Dear Kim, Studies show that Tarceva rash is associated with success, However some patients get little or no rash and can do equally as well on Tarceva. As can some patients get severe rash and no response. If you go on this website www.onctalk.com it is ran by Dr jack west an onc in Seattle. He has lots of knowledge of Tarceva and Rash...you can post on questions free of charge or even email him personally if you want. He always gets back, usually quite quickly unless of course he is attending a conference somewhere. Thank you for your kind words, Hope your mum has great success with Tarceva please keep us posted as to how she is doing. Take care Deanne x
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kd
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Post by kd on Mar 20, 2008 23:34:25 GMT 1
Thanks for your speedy reply Deanne - I did not expect one so quickly, you have certainly eased my mind. As you'll know your mind is in turmoil with it all, clutching at every straw - such a pity people are being denied Tarceva. I will certainly keep in touch with your website - such a great support - thank you for your best wishes for Mum and the info on onctalk. I found the mushroom link on your website really interesting - thanks for that too!
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Post by dtay on Mar 20, 2008 23:52:27 GMT 1
Hi KD My Dad had a very mild rash that appeared after a couple of weeks but then went away for a while and then re-appeared out of the blue. The thing is everyone is different - no two people are the same- so even if your Mum hasnt a rash it doesnt mean that its not doing the trick for her. I hope that she feels ok and that it works well for her. love Dawn
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kd
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Post by kd on Mar 21, 2008 16:08:42 GMT 1
Hi Dawn - thanks for letting me know the experience your Dad's having. What a roller coaster ride! Thanks for your best wishes for her, she's feeling absolutely awful at the moment, (day 14) absolutely no energy at all and wants to stay in bed all the time but is fighting it bless her - does your dad feel like this too? - I know everyone is different - it is such a weird situation. I hope everything works out well for your Dad too. take care, Kim x
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Post by dtay on Mar 21, 2008 22:46:04 GMT 1
Hi Kim My Dad had ups and downs when he first started with Tarceva and it did make him feel tired and fluey for a short while until he got used to it. After that the Tarceva gave him fantastic quality of life for a considerable length of time. It always contained Dads lung cancer - his problem was his lymph nodes swelled with the cancer and caused an obstruction in his Superior Vena Cava. They put a stent in to relieve the obstruction but the symptoms re-appeared after xmas and he died about 3 weeks ago caused by complications from this.I am so grateful that his Oncologist prescribed Tarceva (even tho we had to pay privately at that time) as we had my Dad for a lot longer because of it. I hope that your Mum picks up soon and that she responds well to it. She certainly seems like a fighter and that is half the battle - attitude makes all the difference. Lots of love Dawn x
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kd
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Post by kd on Mar 22, 2008 0:05:15 GMT 1
Dawn I am so sorry to hear you have lost your Dad. It is so generous of you to come on and still give advice to help others out as you do especially as he died so recently and the pain still raw for you. I am happy to hear he responded well to the Tarceva and you all enjoyed your time together seeing him have a good quality of extended life, a wonderful bonus in this nightmare. My sincere condolences to you and your family. Take good care of yourself, Kim x
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Post by dtay on Mar 22, 2008 0:27:04 GMT 1
Hi Kim I was delighted when Dad responded well to Tarceva and I have heard so many great reports and success stories, like Jimmy-Deannes husband - he is doing extremely well and has a fantastic attitude to life. I am sure that your Mum will discover its benefits as soon as her body is accustomed to it and I hope it gives her good quality of life and more besides. I seem to remeber when Dad first took it he felt as if he had a fever and was very lethargic - after a few weeks he was great tho. Keep positive - your Mum sounds like a wonderful lady. Dawn x
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Post by jljenkyns on Mar 22, 2008 22:50:53 GMT 1
Hi kim
like deanne and dawn has already said do not put to much emphasis on the rash everyone responds differently.! The rash seems to be some sort of guide to how the tarceva is working but there have been many cases where little or no rash has appeared and the tarceva has still worked. As deanne says ask Dr West he is very up there in the field of Tarceva. How old is your mother? I am so glad she is a fighter.
take care
jim x
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kd
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Post by kd on Mar 23, 2008 20:41:41 GMT 1
Thank you so much for all your helpful and kind words Dawn & Jim - much appreciate it - especially at this time when I don't know if I'm on foot or horseback! Mum is 74, & actually still looks about 60! despite what she's going through! I can't get over her strength of character despite it all, she has fought ill health throughout her life but still worked throughout it & to have had this Lung cancer diagnosis has nearly broken her in two. Same as everyone I know - but it seems especially cruel for her, knowing what she's been through. Still no sign of the rash, and I will contact Dr West, I've looked at his website and what another wonderful resource. We feel incredibly lucky (!!?? did I really say that?) not to have had to fight for Tarceva - I was preparing for it believe me. Take care all & thanks again, Kim x
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Post by dtay on Mar 23, 2008 21:55:54 GMT 1
Hi Kim - get as much info on everything as you can so you and your Mum can always make informed choices. Dr West is a great guy and will help whenever he can. Hope your Mum is ok love Dawn x
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Post by wendy on Mar 24, 2008 12:15:04 GMT 1
Hi Kim This is a wonderful site isn't it and the advice Deanne and Jimmy offer is worth a million, just wish the people who run this country had as much compassion. Take care and love to you and your great Mum WendyXX
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kd
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Post by kd on Mar 24, 2008 16:45:50 GMT 1
Hi All, & thanks for your messages Dawn & Wendy - this certainly is a great website, as I said originally, it is quite exceptional what Deanne has achieved and I am sure will go on to achieve even more - & Deanne if there is anything I can help/assist with in any way I will only be too happy to do so - there is such injustice going on with regard to denying ill people, not just cancer sufferers, but in all areas the drugs that may help them. I did email Dr West & he has reassured me the rash is not the only indicator. Mum has started to get some redness & itching now, around the eyebrow area and nose & an itchy area on her arm. She obviously is not too happy! I have not said anything about the rash being an indicator the drug is working, so she is in the dark about that. Personally I think the less you know the better really. But I need to know and am scanning the web relentlessly for info. It can confuse you even more though! Hope all enjoying the Bank Holiday - back to work for me tomorrow though!! take care, keep well, Kim x
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Post by Deanne Jenkyns on Mar 25, 2008 14:52:56 GMT 1
Hi Kim, Pleased that you managed to get some reassurance from Dr West, and thanks again for your praise and kind words, makes me blush It is good for people to come on here as patients or cares and share their experiences of this horrible disease because it gives others an understanding of what to expect and know they are not alone. Their is support here from people who share and understand their fears and pain and try to make that just that little but more bearable. Keep us all updated and don't forget to take care of yourself too. Deanne xxx
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Post by dtay on Mar 25, 2008 23:10:36 GMT 1
Hi Kim, I agree with Deanne's wise words - make sure you look after yourself too. Dawn x
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kd
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Post by kd on Mar 27, 2008 22:14:21 GMT 1
Thanks Deanne & Dawn for the messages - yes I am beginning to know what you mean. I feel totally useless now, Mum is totally weak and has absolutely no energy - she managed to take herself to bingo this afternoon, but she said she doesn't know how she got there or back home. She is a fighter as I said, but it is, as you will know, the cruellest of things to see your loved one so utterly helpless - I look at her now and don't recognise her anymore. I am hoping the Tarceva is some of the cause taking effect and hopefully this exhaustion will pass & she will get stronger - though only time will tell. The rash is not really getting any worse, just a patch here and there - what a cruel part of life cancer is - and happens to so many, totally tragic.
I hope you are both OK, & of course Jim still doing well, totally understand how over the moon you must feel Deanne - and have a great weekend to all , Kim xx
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Post by dtay on Mar 28, 2008 19:34:40 GMT 1
Hi Kim, I understand completely what you are going thru - my Dad had times when he had no energy whatsoever and he was a shadow of his former self, but we just made the most of the better days and he rested on the weary days. Like your Mum my Dad had tremendous spirit and was a fighter, I am sure with her great attitude she will have many good days. Thinking of you Dawn x
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Post by Deanne Jenkyns on Mar 29, 2008 20:05:36 GMT 1
Hi Kim, How is your mum doing today? Hope she is doing better and that you are ok too. I know seeing someone go through this is both mentally and physically exhausting. Hope their has been some improvement on the tiredness. Made me chuckle when I read she went to the Bingo! Good for her!
Deanne xxx
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kd
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Post by kd on Mar 29, 2008 23:00:31 GMT 1
Evening Dawn & Deanne - hope you are both OK - thanks for your messages, it means a lot. Thanks for your encouraging words Dawn - I sincerely hope you are right. My poor Mum is totally exhausted, she is suffering badly and cannot make it out of bed at the moment hardly. She has suffered diarrhoea, nausea, no appetite. I am finding it almost unbearable to see her, though I must I know, we don't have a choice do we. Dawn it takes a lot of strength doesn't it. We get the strength from somewhere - our love for the person suffering these cruel indignities I suppose.
I know these are known side effects but does anyone know if this is "normal" to suffer so badly for so long? I suppose it is an impossible question - as it will affect everyone differently.
I know what you mean about the bingo Deanne - Mum loves bingo, but I don't know when she'll get there next!
Take care & thanks again for your caring words and thoughts, Love, Kim xx
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Post by dtay on Mar 30, 2008 0:20:02 GMT 1
Hi Kim As you rightly say, everyone has different side-effects. My Dads included diarrhoea, high temperature and nausea - this was worse at first and then eased off after a while - I remember tho he felt totally wiped out and often had to spend the day in bed just resting. When someone you love so much is suffering it is very distressing and you must be exhausted with your emotions - I was on a see-saw of highs and lows for a long time - you cope tho, the strength comes from somewhere and I think you and your mum are very special wonderful people. Big hugs Dawn xx
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kd
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Post by kd on Mar 30, 2008 20:36:20 GMT 1
Thanks for sharing the experiences your Dad had Dawn, I appreciate it. It sounds very similar to Mum's. It's also nice of you to say such nice things about me and Mum, we are extremely close & I'll do anything for her. I'm sure you was the same with your Dad - we can't do enough to try and make things as easy to bear as possible - but it never seems enough does it. Have a good week, Kim xx
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Post by shazbok on Mar 31, 2008 12:36:20 GMT 1
Hi Kim Have only just got back from holiday and read your messages. I too have been lucky enough to have been given the chance to try Tarceva I have started a 'Tarceva diary' on this site I started on the 26.02.08 and go for a CT scan tonight to see if it's working. I have been suffering badly from the rash which started on day 4 and must admit to having some days of being very tired, 3 weeks into the treatment and I am having bowel problems and having to resort some days to Imodium luckily havn't felt sick but not eating much as havn't got time to spend sat on loo!!! I sometimes think that when we start another regime of treatment it reminds us that yes we are actually ill and so much depends on it working that it can be quite hard in the beginning of the treatment to pick oneself up again and be positive especially if for a while we are feeling worse, this of course is just a personnel observation. I do hope your Mum is feeling much better today and can see a visit to Bingo in the very near future. As everyone says look after yourself as well as Mum Lots of Luv and Hugs Sharon x x x
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Post by Deanne Jenkyns on Apr 1, 2008 11:21:02 GMT 1
Hi Kim, It's amazing where we get our strength. It's heartbreaking seeing someone you love go through such a terrible thing. Do you have other family members supporting you too Kim, I hope so. You can feel very isolated going through this. I found that with people close to me I have still held back on my true fears in case I upset or scare them. I am pleased that you are finding support and comfort here too but hope that you have others to lean on. Hope your mum improves soon and the side affects from the drugs settle down soon. Stay strong honey.
Deanne xxx
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kd
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Post by kd on Apr 1, 2008 20:41:53 GMT 1
Thanks for your message Sharon - great to hear you seem to be doing so well on Tarceva - I read your diary - been skiing! Glad it's not stopping you getting away - it must have done you the world of good. Hope you get the results you deserve with the CT scan - fingers crossed for you certainly. Mum is still very unwell as she has so many other medical problems - I just hope this is temporary until the Tarceva starts to do it's job - please God!!
Hi Deanne thanks for your message too, I do have support but find your website very helpful as you are "speaking" with people who know what you're going through - luckily most people I know have been lucky enough (so far, at least) probably not to have known anyone with lung cancer so don't really know what to say & I don't want to go on about it all the time anyway.
Thank you again for providing such a warm & friendly forum for ordinary people to come on looking for some advice, letting off steam or whatever - it's priceless!
Take care all, Kim xx
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Post by Deanne Jenkyns on Apr 8, 2008 21:11:51 GMT 1
Kim, Been wondering how things are with your Mum? Hope things have improved and that you are doing ok too.
Deanne xxx
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