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Post by daisey on Jan 11, 2008 19:50:15 GMT 1
I am new too all this so please tell me if I am posting incorrectly! My husband starts Tarceva on 12th January. 150 dosage. Bob had NSCLC, part lung removed, stump regrowing, now has spread to his bones, mainly his ribs. Initial surgery, 12 weeks Chemo and a months radiotherapy have not stopped the spread. We have private insurance and suggested Tarceva ourselves to a reluctant Oncologist. To look at Bob you would not know he has anything wrong. His hair has grown back, he has lost his "tummy" and his appetite is now back to normal. He has some pain from his bones and takes painkillers and anti-inflammatory 4 times daily. Apart from that he is the most wonderful man in my life! If it could be helpful to others I can "diary" his progress? Daisey x
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Post by dtay on Jan 11, 2008 20:38:22 GMT 1
That's what happened to my Dad, Daisey - we had to fight for Tarceva and had to pay privately for it. My Dad has stage 4 NSCLC and Tarceva gave him very good quality of life for quite some time. I hope it works its magic on your husband - I will be thinking about him and send hugs to you both. Dawn x
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Post by daisey on Jan 13, 2008 18:24:02 GMT 1
Thankyou Dawn. All good vibes are so welcome! How is your Dad now? How long has the Tarceva helped him for? Daisey x
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Post by daisey on Jan 13, 2008 18:25:00 GMT 1
Day 1. Tarceva taken at 10 am according to directions. 150 mg.
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Post by emilyr on Jan 14, 2008 13:32:15 GMT 1
Hope its going well. You are so lucky to have the drug, and I really hope it works for you. We are at the stage of having to fight for it for my Dad. His oncologist has written to the PCT to request funding for it but suspects that the application will be rejected. It is SO frustrating, and we will do all we can to make sure he does get it (we are currently lining up 2nd opinions, letters to MPs etc so we can get a mini-campaign off the ground if necessary). However, if we are unsuccessful, we are going to look into paying for it privately. Dawn - you say that you did this. Did you already have private cover?? Dad doesn't. We are trying to explore the possibility of paying for the drug itself privately but having the NHS continue to pay all other care costs. Does anyone have any views or comments on this?
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Post by daisey on Jan 14, 2008 20:38:01 GMT 1
Emilyr, what a dreadful situation. I know some people are renting a house or flat in Scotland in order to register with Scottish GP and funding for this. But what a upheaval especially if someone is feeling unwell. probably not an option for most. I gather there is a meeting on 16 Jan and then in April? Have you been onto NICE website? And I gather Roche have something about access on their website but I haven't seen it myself. I wish you the very best in this postcoded care lottery. love Daisey.
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Post by daisey on Jan 14, 2008 20:40:15 GMT 1
Day 2. 150 taken 9 am. Good nights sleep. No painkillers taken today and only very mild pain. Did Bob imagine an itching sensation earlier on his nose? I have applied a steroid cream "just in case".
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Post by dtay on Jan 14, 2008 21:18:50 GMT 1
Daisy - hope Bob is doing ok. Dads rash appeared after about a week on Tarceva - I must say he managed very well and had only mild irritation with the rash. Emily - Dad hasnt got private health cover - we paid £1700 a month. Dad isnt taking it at the minute as he is not doing too good - he has one chest infection after the other and he is giving his body a rest. Dawn x
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Post by daisey on Jan 15, 2008 16:47:39 GMT 1
Day 3. 150 mg taken. Bob had to take pain killers again in the night. Also quite uncomfortable during today so back on mild pain killers for day time use and stronger for night time. No noticable reactions to the Tarceva to date. Dawn. Hope your Dad improves and can get back on treatment soon. Daisey x
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Post by wendy on Jan 16, 2008 9:53:45 GMT 1
Hi there Daisey Just to wish you both all the best and sending big hugs and positive thoughts your way. Hope the Tarceva does its stuff. Wendyxx
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Post by daisey on Jan 16, 2008 19:55:42 GMT 1
Thanks Wendy. Yesterday it rained all day, I felt so low, life has changed so much! I told myself off and reminded myself we are the luckier ones, at least we have a chance with Tarceva. Its lovely to know others care and it really helps. x
Day 4. No reactions. Bob took pain killers last night and slept well. Mild pk's today and the sun shone too!
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Vicky
Full Member
Here to support Deanne & Jimmy!!
Posts: 127
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Post by Vicky on Jan 16, 2008 22:31:00 GMT 1
Hi Daisey,
It must be so difficult dealing with what you and Bob are going through, and it must be tough trying to be strong all of the time, so allow yourself guilt free down days hun ((hugs))
I hope Bob is doing ok and not too uncomfortable.
Thinking of you both.
Love Vicky xxxxxx
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Post by wendy on Jan 16, 2008 22:48:05 GMT 1
Evening Daisey and Bob Hope that you felt a bit better today. The weather and darkness this time of the year certainly doesn't help. It helps to share feelings and know that other people care. This website is fantastic and is such a help to everyone. Sleep well and lets hope that each day things improve. Big hugs and love Wendyxx
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Post by daisey on Jan 17, 2008 17:51:43 GMT 1
Wendy, Vicky, Dawn and Emilr - you are lovely! This can feel a lonely path especially when, as a Mum, you are trying to keep everyone in hopefull mode despite all the stats. But I expect you all know how that type of situation feels yourselves, which is why you are so suppportive of course! Very much appreciated!!!!!!! Love Daiseyxxxx
Day 5. Bob took 150mg Tarceva. PK at night. Mild pk in day. No reaction.
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Post by daisey on Jan 18, 2008 19:22:16 GMT 1
Day 6. 150mg taken. No reaction.
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Post by dtay on Jan 18, 2008 20:02:00 GMT 1
Great diary Daisey - I look forward to seeing Bob's progress. I hope he tolerates Tarceva really well and it proves very successful for him. Fingers and toes crossed. Dawn x
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Vicky
Full Member
Here to support Deanne & Jimmy!!
Posts: 127
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Post by Vicky on Jan 18, 2008 22:46:07 GMT 1
Hi Daisey,
Been thinking about you and Bob.. sending you both ((hugs))
Love Vicky xxxxx
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Post by daisey on Jan 19, 2008 18:26:58 GMT 1
Thankyou both! x
Day 6. 150mg tarceva taken. No reaction though Bob seems quite tired today compared to "normal".
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Post by wendy on Jan 19, 2008 22:17:07 GMT 1
Evening to you both Day 6 already..........wow, doesn't time fly. Glad to hear that Bob is tolerating the Tarceva well, and hope that this continues. Aren't we all lucky that at least we've been given the opportunity to try this amazing drug? When does he see his consultant next? Loads of love and big hugs coming your way. Wendyxx
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Post by daisey on Jan 20, 2008 18:48:40 GMT 1
Day 7. 150mg taken. Bob was tired, quiet and in some pain yesterday despite having had a good nights sleep. He had PKs last night. Feels much better today and no PKs. No other reaction.
See's Oncologist in 2 weeks Wendy and then a scan in about another 6-8 weeks. I'm hoping we can get away at some point. I have huge problems sleeping! The mind goes walk about with all the uncertainty! love Daisey x
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Post by daisey on Jan 20, 2008 18:57:39 GMT 1
Hi Wendy, just read your earlier postings and see you are on Tarceva yourself. How are you now? Hope you have had a good result? Daisey xx
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Post by wendy on Jan 20, 2008 21:13:19 GMT 1
Evening Daisy Yep I've been on Tarceva!However this about you not me. The news that someone you care about has cancer takes a long time to process doesn't it and there are highs and lows. I've had support from a fantastic hubbie and family but never really knew how many wonderful friends I had, they've all been great! Sites like this help so much, as there are times when you feel so alone and don't know where to look for help. Just a few words of encouragement or being pointed in the right direction along with knowing that there are people out there who are in a similar position to yourself helps. Fingers crossed for a good night, do you find you sleep to start with then wake up and the mind goes into overload? That's when I turn the radio on and find that radio 7 is wonderful. hope you manage to get away for a few days somewhere really nice. More hugs coming to you both. with love Wendyxx
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Post by daisey on Jan 21, 2008 17:05:40 GMT 1
Day 8. 150mg taken am. No reaction. PK night time only. OK today so far.
Thanks Wendy. x
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Post by dtay on Jan 21, 2008 21:16:06 GMT 1
Hi Wendy - its great that you have such a marvellous support network and you sound like such a great,positive person x
Hi Daisey - pleased that Bob is doing ok - long may it continue ! love Dawn x
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Post by wendy on Jan 21, 2008 21:20:46 GMT 1
Evening Daisey Do you have friends and family to support you? You need others at such times don't you, just to think you're not alone. Let's hope this rain stops soon and everyone can get out. Take care hope you both have a good night Wendyx
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