大家好,各位同事,家人和朋友。我是Joan Bowness,是加拿大七乐彩开奖公告网络(MNC)的同伴支持志愿者,用于眼部七乐彩开奖公告患者。黛安·哈蒂(Diane Harty)要求我开设跨国公司’的新成立的葡萄膜七乐彩开奖公告患者讨论论坛,所以去吧。一世’d首先要感谢跨国公司将重点扩大到在其网站和任务中包括并突出眼七乐彩开奖公告。眼七乐彩开奖公告确实是一种孤儿/罕见病,尤其是在加拿大。一世’d也要祝贺跨国公司发布其资源手册“葡萄膜七乐彩开奖公告指南”。它是医学界以及我们自己的OMers之一的宝贵资源。该手册包括我们都需要了解的重要信息以及资源清单。一世’我向戴安娜·哈蒂(Diane Harty)保证,我会在不久后添加到该列表中。
现在,简单介绍一下自己。我最初于2003年末被诊断出脉络膜七乐彩开奖公告,并于2004年初接受了近距离放射治疗。十年来,我忠实地回到了PMH进行随访检查。 2014年春天,我完全盲目(我知道是坏双关语),因为有消息称肿瘤已经克隆并重新长出。除了移开我的眼睛,别无选择。一旦我知道可以进行预后基因测试,我就决定完成这项工作。幸运的是,在我进行预定手术的不到一周的时间里,我发现了加拿大影响遗传学公司,并且是其中一家公司’首批接受新批准的葡萄膜七乐彩开奖公告检测的患者。结果不是我想要听到的。他们把我放在‘high risk’类别,但是通往那一线云的一线希望是,加拿大的医疗系统现在可以安排我的计划并在财务上为我进行常规MRI,CT扫描和X射线检查。
我邀请大家,尤其是加拿大的OMers,加入我的讨论论坛。我们许多人属于其他论坛,我们’ve met each other ‘digitally’ on those websites. 然而, I feel that it is important that we also participate in a Canadian forum so that we can get a broader understanding of what our medical system offers us. It will also enable us, together with MNC, to be more pro-active for the care and follow-up that we need. Hope to hear from you soon.
你好安妮特:
Good to 再见 here. We OMers are thankful that your organization has taken us under your wing and begun to focus on our particular 牌 of melanoma. We congratulate you on the publication of your patient booklet. I understand that Dr. Krema is now handing it out to newly-diagnosed patients. I believe that we now need a sticker, or something similar, to affix to the front of the booklet alerting these newly-diagnosed people to contact your organization ASAP for more information and for peer support by way of phone or email chatting should they desire it.
还要祝贺您刚设计的网站。那里很多东西。真的让您印象深刻’我已经与营员们取得联系‘sun smart’ message out there.
嗨,康妮。欢迎登船。我同意大部分信息是‘美国或英国为基地,因此最好在加拿大建立网站。有趣地了解如何以及何时制作假体。我们得到一个‘custom conformer’ during surgery and I actually had another 自定义构想者, painted to look like an eye, as my first prosthetic because there was a tiny area in a corner that hadn’t healed properly. I feel fortunate to have received such excellent care this 时间 round and am excited about all the new research that’正在被报告。我们可能还没有治愈的方法,但是我们肯定有几年前我们需要的更多选择。像安妮特(Annette)一样,我想请您将此网站的字样传播给您的加拿大西部同胞OMers。保持良好。琼
I have decided not to have any of the ultrasound tests given that there is no treatment for METS at this 时间. My Oncologist gave me the option and simply said I can tell you in advance that you have it and ruin the last few months or simply live with the fact I may get it and get on with my life as if I have never heard of OM. I am a very proactive guy with my health but dont have any need to know something that is out of my control. Keen to hear how others are feeling about this strategy. All the best to each of you on the forum.
I’m from Lethbridge, so not far from you. I was diagnosed 6 1/2 years ago. At that 时间 there was no genetic testing done. i have opted for abdominal ultrasound, first 5 years every 6 months, now have moved to annually. I have a great family Doc who does check not my ailments thoroughly when they do arise. As I had Direct Beam radiation, I have been receiving Avastin shots to control the radiation damage to the treated eye. As has been mentioned, best to err on the side of caution with this!
嗨,帕特对...好‘see you’再来一次。鸣谢以向Marty保证他’按照他的情况采取正确的行动。很高兴你的家庭医生‘gets it’并密切注视着你希望Avastin的镜头能继续控制眼睛的伤害。
My GP is also great and I thank her every 时间 I see her. When I was re-diagnosed in 2014, I wanted scans but didn’尚未根据多伦多PMH的协议获得资格。她对我说的话[原文如此]”我对这种疾病一无所知,所以您必须让我知道保持最新状态的必要信息。” However…it’关于她所熟悉的疾病和状况的诊断(不必要?),这是一个完全不同的故事,但是她’最重要的地方。照顾自己。琼
Thanks to all of you for your feedback. It is a surreal journey walking around with the possibility a ticking 时间 bomb in your blood. The question is how do we handle the uncertainty of the potential explosion that may have been lit with a short or long fuse. We don’不知道哪个。或对于某些人来说根本就没有保险丝,但无论如何我们都无从得知。至少可以说非常奇怪的情况。首先,让我说,韦斯博士在加拿大西部运行的程序是一流的。它是快速,高效,有效,信息全面的。我对韦斯博士及其团队的评价是10/10。我们非常幸运,有一个年轻而聪明的医生位于卡尔加里,负责照顾所有获得OM的加拿大西部人。超级高兴并为成为艾伯塔省医疗保健系统感到自豪。考虑到这种情况,这是非常好的经历。尚不确定肿瘤科医生,因此以后将进行报告。他确实说过您属于1a类,没有治疗,因此您不妨继续生活并享受这是一个非常可行的选择。另一种选择是每年进行超声波检查,但它们容易产生误报,这将导致大量挖掘和压力,原因何在?我认为还不错。
琼, thanks for the 名字, very helpful. I beleive the Dr. at UCLA would be the closest and I could drive there. Do you know anything about Dr. Madhavi Kurli in Phoenix? She looks to be new to the OM game. Marty
马蒂:有两个人的回音。一个人知道‘of her’另一个是病人。似乎受到高度重视。一位写道:“是!! Kurli博士是我的医生,她诊断了我2013年8月,我做过斑块手术,从那以后一直见到她,她告诉她在伦敦和美国接受了培训,并计划在凤凰城的Mayo诊所接受治疗。但是她’现在已经开设了自己的办公室,伟大的医生和女士脚踏实地。” The other said, “Yes. I’ve heard very good things about her. She did some 她的 training at NY Eye & Ear Infirmary.” If you wish, I will 尝试 让您与她的患者保持联系。琼
安妮特(Annette)也要求我也回覆“Scared to Death”因为我在2014年也接受了摘除术,在2004年也接受了近距离放射疗法。到目前为止,我还没有患上转移性疾病。一世’我不太确定从哪里开始,但我会尝试一下。您从哪里获得有关像您这样的患者的寿命不超过5年的信息?我可以向您保证,患者当然可以而且可以更长寿,而且这个数字只是统计数字。我通过在线支持小组认识一位女士,她在与转移性眼部七乐彩开奖公告生活并治疗了27年后仍然活着。您是个人,而不是统计人员,并且有许多因素将决定您的寿命。是的,我们都知道无法治愈眼部七乐彩开奖公告的转移形式,但是研究,临床试验等领域的许多活动都显示出了巨大的希望。我亲自接受过玛格丽特公主的治疗,现在在霍格医生的护理下进行例行诊断,霍格医生是医学肿瘤学家,他将我们的OMers带到了他的翅膀下。我第一次见到他时,他给了我一些建议,我将与您分享。他告诉我要尽自己最大的努力去活出自己的生活,并尽我所能地保持健康,因为研究进展如此之快,以至于他几乎可以保证我在不久的将来比那时更好的预后。 。换句话说,他告诉我‘time’ would be my friend. The intervening years have proven him correct when I look at results of some of the new treatments. Some people actually go one step further and follow a regimen of adjuvant therapy which boosts the immune system in the belief that it can ward off metastases for a longer period of 时间.
恐惧是正常的,但最好不要让恐惧控制您的生活。积极思考对帮助我们充满不确定性大有帮助。如果您愿意,我愿意亲自与您交谈;但是,我想请您浏览加拿大七乐彩开奖公告网络执行总监Annette Cyr。最后,我和你在一起很好,并希望那些小野兽是真正的良性。 琼
早安,博尼塔。我叫琼。我住在安大略省,也是大四学生。我会尽力回答您的问题和疑虑。我也是玛格丽特公主的病人,我最初在2004年初接受过近距离放射治疗。这是一个令人恐惧的诊断,既因为它带来了健康问题,又因为它通常是‘lonely’这种疾病非常罕见,以至于您可能不会’不认识其他也受到治疗的人。
没有人能真正预测出治疗后会恢复多少视力,但我确实知道眼睛要花几个月的时间才能恢复原状。三个月后,我几乎恢复了全部视力,但几年后,即使肿瘤远离视神经,我仍然失去了视力。我认为这可能是因为当我接受治疗时肿瘤已经变大了,并且存在辐射泄漏引起的损害。这也是十多年前的’t actively treating what is typically called radiation retinopathy at that 时间, whereas they are now with some good success stories. The one thing that is pretty universal is that your eye will be extremely light-sensitive for quite a while. I wore wrap-around cocoon sunglasses over my regular glasses every 时间 I went outside. I still do most of the 时间, even though the sensitivity eventually went away. 这很重要‘positive’您身体健康。我们都认识到,健康的人经过重大医学干预后可以更快地康复,对您有益。
PMH眼肿瘤科的人会很好地照顾您。我对他们有最大的信任。他们将让您定期返回进行检查,并在需要其他监视时将您转介至其他部门。同时,如果您需要聊天,我可以联系您,但您必须通过七乐彩开奖公告网络来启动此过程。
保持良好;坚强点;照顾好自己;并让其他人帮助您。 琼
有趣的是,我遇到了另外两名正在接受这种癌症治疗的女性…一个年龄要小一些,而另一个年龄与我相同(七十多岁)。在我被诊断之前,都没有视力问题。
Unfortunately, I think we were all in shock so didn’t exchange email addresses which is why I was so happy to find this forum. I also met a gentleman from PEI while at Princess Margaret Lodge. He had a reccurence and received a different form of treatment the second 时间. With all of this treatment he was still lucky enough to retain his sight.
I am surprised at the number of 时间s people are checked for OM in the USA. I was told that I would have blood tests every six months and scans every year. In the US it is far more frequent. I’m sure that the Canadian way is more than enough. My melanoma is considered small and was caught early I think.