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Post by dsharpy on Jul 12, 2008 15:31:08 GMT 1
my dad has nsclc he was diagnosed in april he has had 1st line chemo and told yesterday it has not worked but then told he can have second line and then tarceva and if he can not cope with second line he can then go onto tarceva I feel like I am waiting for the but . It can not be that simple can it. the question is do we make out that he can not cope with the second line of chemo to go straight on it. he has secondary in his quadrant muscle which I have just found out is in his back and I am frightened the cancer will go to his spine. He does not seem to be handling the cancer very well he is in pain all the time and his pain killers are increased and then he zombied out he has lost loads of weight and aged over the past couple of months to an extent I can not believe the whole thing is a complete shock and I just want my dad back. I do not know what to do for the best he is not eating very well too. He seems to have lost his fight how do I get him to get it back any advice would be of help.
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Post by jljenkyns on Jul 13, 2008 13:44:14 GMT 1
Hi
My thoughs would be to go straight for the tarceva,if he has lost a lot of weight and is tired all the time he may not have the strength to cope with the docetaxol . I would certainly ask the question? keep us posted dont let them fob you off!! You need to have what is best for your dad right now not when or if he gets any worse.
jim x
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Post by melaniehadwin on Aug 20, 2008 14:57:22 GMT 1
Hello,
Obviously I am not a doctor, but I wanted to express that docetaxol is a really strong form of chemo. Will your father be well enough for Tarceva if he has docetaxol first and it doesn’t work? From what I understand Tarceva can only work if things like your father’s liver etc are still working, Tarceva is processed through the liver.
Really quiz your Father’s oncologist, why is he saying
“then told he can have second line and then Tarceva and if he can not cope with second line he can then go onto Tarceva”
Ask the Oncologist if he thinks your Dad should go straight on to Tarceva?
What is stopping the Oncologist from putting your Dad on Tarceva straight away?
How is the Oncologist going to assess whether your Father can cope with second line chemo? X-rays, CT scans?
In what kind of time frame is the Oncologist going to assess whether your father can cope or not?
Ask whether he thinks docetaxol is worth it and why?
Ask the Oncologist if he thinks your Father will be fit enough for Tarceva if your Father has already undergone second line chemo and it doesn’t work?
Can I ask if you are a private of NHS patient?
If you are NHS it might be worth getting a second opinion. The desire to get more treatment straight away is overwhelming but it really is worth taking the time at this stage to ask questions, get average percentages and second opinions.
Once the docetaxol is in your Father’s system you can’t take it out and he may then be to unwell for any kind of treatment.
I stress I am not a doctor so do book more appointments with the Oncologist and your Father’s GP to find out every option and possible outcome.
Good luck and positive vibes to you.
Melanie
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Post by daisey on Aug 20, 2008 19:46:04 GMT 1
On the weightloss, do ask the GP to perscribe ensure or a similar "meal in a bottle" for your Dad. Its 380 cals. per serving and full of good nutrients. Its already made up and you shake and go! Doesn't need a fridge either. I am giving it to Bob as a between meals "snack" and he find it very easy to cope with. You can also get a carbohydrate load powder to add to other food, anything really to help maintain him. He will need to be in reasonable shape I would think to get the best out of any treatment. I wish you both well, this is a hard road to walk down and (sadly) you are not alone. Take care of yourself too, I'm sure you are much needed, this is such a worrying time. Very best wishes,
Daisey x
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Post by shazbok on Aug 21, 2008 20:58:20 GMT 1
Hi
As you may have read I have been given the chance to try Tarceva I have written in the Tarceva diaries. Unfortunately after having really bad side effects so was very positive about the success, I had worse acne than teenagers my face swelled up with it 4months later it looked like Rosacea not really good when female, I had dreadful bowel problems, tiredness came & went, but unfortunately it didn't work. It is now 3months since i finished and I am only just getting back to normal with my skin and my hair fell out in male pattern baldness and is now starting to grow back! I was able to work whilst on Tarceva did change my days and leave early some days (worked for husband) still ran house single handed.
I have just been to have my 3rd treatment of Docetaxol which I am tolerating very well no sickness will feel ill sunday monday and a little unwell untill Wed back to normal Thursday I am hoping to get a CT scan in the next 3 weeks to see if it's working and whether to carry on with 3 more treatments plus I have been having cold cap and have lost no hair YIPPEE. have gone very part time at work just so can have more me time still running house!
Friends have said since come off Tarceva I seem much better got sparkle back in my eyes and seem more like myself. I must say that even though I am stage 4 I don't have any other secondries other than both lungs & I am very well.
Sorry if this has confused you but just thought I would give both sides of treatments being offered as Tarceva really doesn't work for every one, it's about time they came up with a test to detect which people have the receptors and it will work for to direct the finances to people it will work for hence making it more financially viable and to stop false hope for those it won't as I was devastated when it didn't after such bad side effects
I will say that I thought you could only have Tarceva if you had 1 failed chemo only and that Docetaxol could then be used if Tarceva stopped working.
Sorry to go on
Wishing you all the best with your decision
Sharon x x x
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Post by Deanne Jenkyns on Aug 22, 2008 19:44:54 GMT 1
Hi Sharon,
It's great that you are coping so well with Docetaxol, and it is great to get some feedback from someone having it. It amazes me the way people react to different drugs. Jimmy sailed through his first line chemo and others on the same cocktail he was became very ill. I agree about the test but having said that people who have not tested positive for certain genes have done equally as well on targeted therapies as someone who has. I don't think one really know how someone will react to a drug until they have been given it. I am so glad that you are doing so well I hope it continues for a long time.
Deanne
x
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