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Dear Deirdre,


dazdot
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  • 2 weeks later...

My brother now has to have another consultation tomorrow, during which he will have to have blood tests to find out the options for the bone marrow transplant. This has come as bolt from the blue as there has been no real mention of the transplant for months, this has obviously knocked him down a bit from his previous high. We are now just hoping the good news will continue.

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Thanks for all the messages, they are really appreciated 169144-ok.gif. It is now confirmed that he is is 100% in remission laugh.gif , but this is only a temporary thing, he will never be cured. His consultant has informed him that he is a prime candidate for a new anti body treatment (he has already had a small course of this) the only problem being is that this is not yet a fully recognised treatment in this country, therefore there is no funding available for this. That in itself is not a huge problem as he will go private if necessary. This treatment will still not cure him it will probably give him 2 - 3 years, this is then where the bone marrow treatment comes in, again, this is not going to cure him, but will give him up to 5 years maximum. We still don't know if once the 5 years is up if he can then have another course. All in all we think it is still a step in the right direction. 169144-ok.gif

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Good news Daz, big credit to your brother and your family for dealing with this with so much courage and optimism....he is a fighter evidently and he will beat this as much as he can I am sure. New treatments come out all the time and I bet he'll take all possible opportunities. 169144-ok.gif

Pass on my best wishes to him and get those beerchug.gif open! grin.gif

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Great news about the remission. I guess there isn't too much you can do for a while to change the course of events so I hope you all get the most out of your 'bonus' time together.

It is possible to repeat bone marrow transplants but not that common. The best people to ask are the ones looking after him, of course.

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  • 1 month later...

It's been a long time since the last update, so here goes. His 3 monthly check up has gone well as the specialist can not feel the lumps this time. That was the good news. The other (I wont say bad) news is that the new treatment (Rituximab) is not available on the Nhs. There are a few trails up and down the country, the only problem is you are not allowed to join these unless they are in your region. So it looks as though he will have to go private. Thanks for reading. 169144-ok.gif

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Good news Daz, thanks for the update. 169144-ok.gif

Is it worth writing to local MPs etc regarding the drug he needs and stirring up some publicity or does he just want to get on with life and not have the fuss? It seems wrong he should have to go private but at the end of the day if it helps him, its worth any price. I know you cannot put a value on him beating this thing.

Best wishes to him for continued positive news! beerchug.gif

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[ QUOTE ]

Good news Daz, thanks for the update. 169144-ok.gif

[/ QUOTE ]

Your welcome.

[ QUOTE ]

Is it worth writing to local MPs etc regarding the drug he needs and stirring up some publicity or does he just want to get on with life and not have the fuss?

[/ QUOTE ]

I really don't know to tell you the truth, but it's worth a thought. 169144-ok.gif

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It seems wrong he should have to go private but at the end of the day if it helps him, its worth any price.

[/ QUOTE ]

It certainly does seem wrong, especially when he was told that he is an ideal candidate due to the way he has responded to the chemotherapy.

[ QUOTE ]

Best wishes to him for continued positive news! beerchug.gif

[/ QUOTE ]

Thank you so much Lottie 169144-ok.gif

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Great stuff, Daz, it sounds about as good as you could have hoped for.

[ QUOTE ]

[ QUOTE ]

It seems wrong he should have to go private but at the end of the day if it helps him, its worth any price.

[/ QUOTE ]

It certainly does seem wrong, especially when he was told that he is an ideal candidate due to the way he has responded to the chemotherapy.

[/ QUOTE ]

I'm going to be a little hard here and say that I don't think this is wrong at a population level. These treatments can be very expensive and the NHS doesn't have limitless resources so there has to be some rationing somewhere. Of course, at an individual level, you never want to see anyone deprived of treatment and it feels instinctively wrong.

I hope you don't mind me saying this, Daz. I'm not wholly insensitive though and wouldn't have done if you hadn't said that he could afford to pursue it privately.

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[ QUOTE ]

Great stuff, Daz, it sounds about as good as you could have hoped for.

[ QUOTE ]

[ QUOTE ]

It seems wrong he should have to go private but at the end of the day if it helps him, its worth any price.

[/ QUOTE ]

It certainly does seem wrong, especially when he was told that he is an ideal candidate due to the way he has responded to the chemotherapy.

[/ QUOTE ]

I'm going to be a little hard here and say that I don't think this is wrong at a population level. These treatments can be very expensive and the NHS doesn't have limitless resources so there has to be some rationing somewhere. Of course, at an individual level, you never want to see anyone deprived of treatment and it feels instinctively wrong.

I hope you don't mind me saying this, Daz. I'm not wholly insensitive though and wouldn't have done if you hadn't said that he could afford to pursue it privately.

[/ QUOTE ]

Everybody is welcome to there opinion James. 169144-ok.gif You are right with all of the above, especially the cost of the treatment, we will know for definite the full cost for the 2 year treatment on Tuesday 21st, the figure being banded about at the moment is £15,000. Not a great amount of money where life is concerned. 169144-ok.gif

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  • 3 weeks later...

He has been accepted on a trial for the drug Rituximab (first session today), he will need to have one session every 3 months for 2 years, the first 2 courses are to be free but the remaining sessions he may have to pay for. Good news in my books. 169144-ok.gif Thanks for reading.

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  • 1 month later...

Well I thought this thread would carry on being full of good news, but obviously not. The good news is that my brother is doing great, he is getting the anti body therapy he needs, so thumbs up there. 169144-ok.gif

The bad news is that my Mum has now had it confirmed (she had a brain scan last Thursday), that her original lung cancer has spread to her brain (even though her original treatment consisted of chemotherapy and a six week course of preventative radiotherapy to her head), apparently she has six secondary cancers in the brain along with a lesion and some swelling. She has been suffering with headaches just lately and has now started to lose the use of one leg and one arm. At the moment it seems as if all that can happen is steroid treatment to keep her comfortable until the inevitable happens. Fcuking cancer, it seems to be haunting our family. Thanks for reading.

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  • 2 weeks later...

Thanks for all the messages. 169144-ok.gif

It was confirmed yesterday (by the consultant) that my mothers brain cancer is incurable, she is to have 10 sessions of radiotherapy starting in approx 2 weeks time. This should hopefully prolong her life, but by how much no one knows. The anti depressants and steroids have perked her up so much that she is the one keeping all us sane. Thanks for reading.

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