j ross
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Posts posted by j ross
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Welcome from a fellow Brit
My husband was given a poor prognosis over two years ago and he is still here feeling fit although he still has the disease and the last scan showed slow progression.
Please let me know if you would like me to share any informatiom experiences with you in relation to UK.
Jennie
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This drug kept Barry very stable for over a year. So it does have its uses. I cannot understand this.
Jennie
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I am so so sad. her courage was evident in her posts.
She will be very greatly missed. My condolences to her family. It is so unfair.
Jennie
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Good news for one member is good news for all members.
Great
Jennie
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Hi
Because Barry had been on iressa for over a year he already had the rash when he started Tarceva in Feb.
When iressa was first started the rash was pretty bad to look at but it did not affect him very much.
After a while it kind of calmed a little. On starting tarceva it flared up again (although not as bad a when first on iressa]. It has again calmed down. His face is quite red but the spots are not too bad. His torso remains ichy and spoty but it does not worry him too much.
Best wishes
Jennie
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Mazel tov to you all. Have a wonderful weekend
Jennie
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Hello Everyone,
I need your opinions please. First of all Barry's latest ct scan was I think good. Please let me briefly summerise: Stable appearance in chest. (There are tiny nodes etc but not much else). However "there is a small cluster of nodes slightly more prominent. Impression possible slow progression of the left para aortic lymph node" compared with last scan (Feb)..
OK. Barry is on Tarceva and we are trying to get our
National Health Service to pay for this, which they are relunctant to do. Our oncologist (who is employed by them) prescribed the tarceva on the basis that we pay for it. He felt if the ct either showed stability or remission we would have a case for financing. Now after this scan he is not sure. He wants to wait another month and have a pet scan to compare with one in February.
In the meantime we continue to pay for the drug.
I somehow have the feeling that the reading of the scan was compromised to tilt the balance in favour of some progression. When I asked how much this node had grown I was told a few mm. (I think I need to say that we are talking about a lympth node).
What do you think. Please respond. If we think we are being treated unfairly we have legal redress. I do like our oncologist, after the first one wrote us off it was a nice change. Barry remains fit and well and leads a normal existance.
Jennie
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Latest Scan
in HOPE
Hi Everyone
I think it's good news. Let me quote the bottom line: Stable appearancs in the chest. Small cluster of left para aortic nodes is slightly more prominent.
We are having problems with the British NHS. We are asking them to pay for tarceva which they are very relunctant to do. If there is any sign of progression they have a get out so I am wondering if they are looking for trouble. Meanwhile Barry feels very fit and healthy and leading a normal existance.
Best wishes to you all> I am thinking of you.
Jennie
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Hi fellow brit.
So sorry to hear about Claire.
Jennie
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I have been following this for sometime and things are really looking promising. I also hope it gets available real soon.
Jennie
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Hi from a fellow Brit. There was also confusion with diagnosis. Is was not until they operated that they were able to see the full extend of Barry's spread. We have been around the block with the NHS
but two years later we are so far in pretty good shape.
Jennie
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Hi My husband, Barry, went on to Tarceva after small progression with Iressa which he was on for just over a year. He has noticed that a couple of slight pains he was feeling seem to have gone. Had a scaan and we get results next week.
Jennie
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Hi. We were given a similar prognosis. That was two years ago and for the time being we are still here. Please get a second opinion.
Jennie
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You are wonderful. Thanks for all your research and for remembering that not everyone is in the US. We wish you many more years/
Jennie
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We were also given little hope by our doctor. Well two years later we are still here fit and able.
Jennie
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Jackie
You live quite near me (I live in Harpenden nr. St.
Albans.) Is your dad being treated at the Lister?
Pleade pm me.
Jennie
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Hi
From a fellow Brit. Wherabouts do you live? My husband was also diagnosed with 3b two years ago.
Jennie
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Mazel tov
Jennie
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hello
I an a bit scared of tempting fate but Barry is now 2 years post diagnoses. The first onocologist really recommended pallative care. Well as yet he is still very fit and able and if it were not for the worry we would be leading completely normal lives.
Jennie
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Wishing and praying for success.
Jennie
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Rich, thank you so much for all your research and support. You are an inspiration, and very much appreciated.
Jennie
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Yes I do agree. I try and research and over the last two years two drugs look promising. The first is the vaccine developed by biomura/merck which had some really promising results but to get info on trials release dates in vey hard even when contacting the company. The other type of drug is for acquired resistence to egfr inhibitors. Astrazenca has a drug in development, zactima, and wyeth also. Again try and get some concrete information it is hard. Wish there was some pressure group out there.
Jennie
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I am so so sorry for your loss. Thinking of you and your family.
Jennie
Whoo Hoo! Hot Dang!
in HOPE
Posted
YES!
Fantastic
This helps us all.
Jennie