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• change in distribution of Avastin
• Posted: 2007-10-11 11:57:17 By dan r
• Dear Friends,
  
  Today (10/11), Genentech is notifying ophthalmologists of a change to the distribution of Avastin. Beginning November 30, the drug must be ordered directly from Genentech by the physicians themselves, rather than by a compounding pharmacy. (A compounding pharmacy is one which breaks the drug down into smaller doses from the original vial and then delivers it repackaged to the physician.)
  
  When you read about this change in the media and the blogs (and you will), understand that the new procedure will not remove Avastin from the marketplace, and it is not being initiated in order to make Avastin more difficult or expensive to obtain. Also, since hospital physicians are unaffected by the change, the current head-to-head trials of Avastin and Lucentis will not be affected. Physicians in community private practice will probably be the most affected, but it should not affect your care.
  
  As you know, Avastin (a cancer drug) is not manufactured or approved for use in the retina. Many retinal specialists, however, are using it off-label for treatment of choroidal neovascularization, as in wet AMD and myopic MD. The main reasons for the change in distribution are 1) the FDA's concern with repackaging the drug, which allows its unintended use, and 2) expiration of 1-year contracts between Genentech and the compounding pharmacies, which temporarily allowed this procedure while Lucentis was becoming established.
  
  If you would like to learn more about this, here is where you can read the letter being sent to physicians:
  
  http://www.gene.com/gene/features/avastin/letter-to-physicians.jsp
  
  I hope this will help your understanding when the news begins to break over the next few days.
  
  Best regards,
  
  Dan Roberts, Director
  MD Support
  website: www.mdsupport.org
  email: director@mdsupport.org
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• Macular Degeneration treatment
• Posted: 2007-10-09 01:29:38 By george n
• has anyone been treated by dr. alston lundgren MD "santa fe protocol" - reversing the effect of Macular degeneration or know anyone who has been treated by dr. lundgren.
  
  thanks
  
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• Echo therapy for dry macular
• Posted: 2007-10-08 11:27:06 By Frances T
• Has anyone been treated with ECHO therapy for dry macular in Farmington, Ct.
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• Dry Macular Degeneration
• Posted: 2007-10-02 10:24:13 By Pilar R
• I would like to receive more information on Dry Macular treatments, periodically.
  
  thanks,
  
  
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• Dry vs. wet
• Posted: 2007-09-30 17:26:12 By Ann C
• I was at an event last night when someone asked me how my eye was doing. I gave them the abrieviated version since I have discovered that people don't really want to know. They then told me that their mother and 5 other people in their family had wet amd and now it has changed back to dry. I started to tell them that wet does not go back to dry it does stop leaking hopefully. They told me that I was wrong and it can go back to being dry macular degeneration. Am I wrong? I was under the impression that once it goes to wet it is wet period. The leaking stops and starts but you stay with a diagnosis of wet amd. Correct me if I am wrong and I need to apologize to this person for arguing with her,
  Ann
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• hi all
• Posted: 2007-09-26 14:27:41 By Barbara L
• Hello! I have been diagnosed with early stage macular degeneration and really care about what you are all going through; I hope to support and hear from you all. My email is psalms5556@yahoo.com; I have been getting Avastin and they said they are successfully stabilizing it before it becomes full stage; I am 46 and they found it very early stages; I need some help understanding this; thanks; I did talk to the nurse of the eye surgeon and it is kind of scary; thanks anyone! I hope you are all successful! Barbara
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• Chat Rooms
• Posted: 2007-09-23 22:13:53 By Ann C
• Does anyone know of a active chat room where people are on line to talk live to? I would like to find one and have tried with not much success.
  Ann
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• Chat Rooms
• Posted: 2007-09-23 22:13:37 By Ann C
• Does anyone know of a active chat room where people are on line to talk live to? I would like to find one and have tried with not much success.
  Ann
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• anyone game to talk?
• Posted: 2007-09-14 19:22:23 By Debra U
• It's 7:20. I have mascular degeneration and can't seem to cope with it. I do not want to get dressed or leave the house. I'm in sorry shape.
  Lowly Worm
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• new IMDSG webcast online
• Posted: 2007-09-14 15:46:23 By dan r
• Dear Friends,
  
  The September 13 webcast of the International MD Support Group featured two leading eye care professionals, Donald C. Fletcher, M.D. and Edward J. Huggett, O.D. The archived audio/visual recording of "Who Are Those People in the White Coats?" is now available free to the public and highly recommended for viewing by anyone who would like to learn more about their doctors and what they care about.
  
  Remember, all monthly presentations are accessible on the IMDSG web site at:
  
  http://www.mdsupport.org/nsg.html
  
  I hope you will "tune in!"
  
  Best wishes,
  
  Dan Roberts, Director
  MD Support
  www.mdsupport.org
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• Exceptional Recovery from "untreatable" Macular Degeneration
• Posted: 2007-08-30 12:14:56 By Ray A
• 
  Three years ago I was diagnosed with "untreatable" myopic macular degeneration, having lost virtually ALL central vision in my left eye. At that time I was seeing UK 6/60 or USA 20/200.
  
  Now, three years later I am now seeing UK 6/6 or USA 20/20! No, this is not a mistake nor is it a typo, and my improvement has been maintained for two years.
  
  In my case, a tear in my left RPE broke through the very middle of my macular (the fovea). All written and verbal clinical communication to me and my family doctor GP (by my ophthalmologist consultant and also his clinical colleagues) expressed the view that nothing whatsoever that could be done to recover my vision and I should accept the situation as a "fait accompli". I was also diagnosed with macular degeneration in my right eye (though I was seeing Ok out of this eye at that time).
  
  So how did I improve so much?
  
  In one sense I was lucky. Because NO clinical evidence-based treatment for my macular degeneration was considered in the least bit appropriate on the one hand, together with my absolute refusal to believe that nothing could be done to regenerate my macula on the other hand, I sought out, selected and used a non-evidence based healing modality; a so-called "alternative" approach called Ayurveda.
  
  What I am saying is that my extraordinary improvement was "subsequent to" the Ayurvedic treatment. This is not the same as me explicitly (and possibly irresponsibly) asserting that my recovery was "caused by" the treatment. Just because one event follows another, it does not of course follow that there is a causal relationship between the two.
  
  On the other hand, as the improvement and especially the degree of it, was SO contrary to clinical expectation, it cannot be unreasonable to advance the proposition that my treatment and recovery are indeed associated.
  
  As searches through the published scientific paper bio-medical databases of “Medline” and “PubMed” show NO cases of precedents, I have published my own Case Study of my macular degeneration recovery subsequent to Ayurveda at http://www.macular-degeneration-recovery.com (copy and paste into browser address bar). I believe readers of this post will find the site both responsible and temperate.
  
  The site includes two versions of my retinal recovery against a detailed time-line - one for clinicians and the other for non-clinicians, and it also includes a discussion about possible placebo and co-incidence artefacts and additionally provides contact treatment details and contact details for myself.
  
  A final point: My current understanding is that on rare occasions some degree of spontaneous recovery from ‘myopic’ macular degeneration (the type that I have) can occur (though I have been statistically unable to quantify it). However, to date, I am unaware of any spontaneous recovery of the same (or even near) magnitude (6/6 to 6/60 or 20/200 to 20/20).
  
  [I am actively seeking citations from clinicians/ researchers that clearly show spontaneous recoveries of the same magnitude - so if any are reading this post, I would be most grateful if you would contact me so I can revise the discussion portion of my site accordingly].
  
  Best wishes,
  Ray
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• Anyone Have the ECT CNTF Neurotech Implant?
• Posted: 2007-08-29 19:55:17 By Rick H
• I will be getting the ECT CNTF implant in a few weeks. Just wanted to see if anyone else that has had the implant can give me some feedback. Have you have any bad side effects? Any noticable vision improvements?
  
  Thanks,
  
  Rick H
  Michigan
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• Just diagnosed with pathologic myopia
• Posted: 2007-08-27 22:56:17 By TEY K
• Dear all,
  
  I am 33, male and severely myopic (L-18D, axial 30.6mm, R-20D, axial 30.8mm ). I was just diagnosed with lacquer cracks in my both eyes, and a small retina hemorrhage in my left eye. That happened a few months back when I first noticed waviness when I look at straight lines and a light greyish blood patch on my left eye central vision. Both has since disappeared and my RS said the blood has resolved and there's no scarring on the macula.
  
  However, I do noticed a slight drop in visual acuity in my left eye and sensitiveness to dimly lit surroundings after what happened.
  
  My eye doctor said this was due to the thinning and stretching of the retina, RPE and chloroid due to the high myopia. I understand that the effects on the thinning of the RPE for myopic degeneration patients acts on about the same way as that for ARMD, and ultimately abnormal blood vessels will grow and retina will be damaged.
  
  Anyone who has the same situation as me, maybe you would like to share your experiences?
  
  So far my RS has not found any CNV leakage, but it came across to me that patients with lacquer cracks are highly predisposed to CNV.
  
  I read that lacquer cracks and breaks in the Bruch's membrane typifies the early stage of the disease.
  
  Besides that, my RS also said I got some slight lattice degeneration and mild posterior staphyloma on my left eye and chlorioretina atrophy on my both eyes.
  
  Does anyone know from personal experiences typically how long it takes for lacquer cracks to progress to CNV and eventually loss of central vision?
  
  Will the progression of myopia stabilised for pathological myopia? I feel that my myopia has not been increasing much (perhaps an increase of 2D-3D each eye) over the last ten years prior to this incident.
  
  I am really very fearful and feel so helpless and uncertain of what the future lies ahead after learning about my condition. It has never occur to me so many medical complications can arise as a result of being high myopic.
  
  Any advises or sharing of experience will be greatly appreciated!
  
  Thanks!
  
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• Pathological myopia
• Posted: 2007-08-27 00:21:56 By TEY K
• Dear all,
  
  I am 33, male and severely myopic (L-18D R-20D). I was just diagnosed with lacquer cracks in my both eyes, and a small retina hemorrhage in my left eye. That happened a few months back when I first noticed waviness when I look at straight lines and a light greyish blood patch on my left eye central vision. Both has since disappeared and my RS said the blood has resolved and there's no scarring on the macula.
  
  However, I do noticed a slight drop in visual acuity in my left eye and sensitiveness to dimly lit surroundings after what happened.
  
  My eye doctor said this was due to the thinning and stretching of the retina, RPE and chloroid due to the high myopia. I understand that the effects on the thinning of the RPE for myopic degeneration patients acts on about the same way as that for ARMD, and ultimately abnormal blood vessels will grow and retina will be damaged.
  
  Anyone who has the same situation as me, maybe you would like to share your experiences?
  
  So far my RS has not found any CNV leakage, but it came across to me that patients with lacquer cracks are highly predisposed to CNV.
  
  I read that lacquer cracks and breaks in the Bruch's membrane typifies the early stage of the disease.
  
  Besides that, my RS also said I got some slight lattice degeneration and mild posterior staphyloma on my left eye and chlorioretina atrophy on my both eyes.
  
  Does anyone know from personal experiences typically how long it takes for lacquer cracks to progress to CNV and eventually loss of central vision?
  
  Will the progression of myopia stabilised for pathological myopia? I feel that my myopia has not been increasing much (perhaps an increase of 2D-3D each eye) over the last ten years prior to this incident.
  
  I am really very fearful and feel so helpless and uncertain of what the future lies ahead after learning about my condition. It has never occur to me so many medical complications can arise as a result of being high myopic.
  
  Any advises or sharing of experience will be greatly appreciated!
  
  Thanks!
  
  
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• Avastin and health insurance
• Posted: 2007-08-26 16:21:05 By Ellen K
• I'm 61 and was diagnosed with wet AMD in one eye 2 years ago. I received my first Avastin injection 14 months ago and have received a total of 6. My sight is much improved since the first injection. My biggest battle now is my insurance provider. They approved Avastin (over the phone) and covered the first 2 injections. They then started to send strange explanations of benefits. They now say they've reconsidered and won't cover it AND want me and the doctor to reimburse them for what they've paid thus far. They want medical research to prove Avastin is both effective and safe for treating wet AMD. My doctor thought he was doing a good thing to use Avastin rather than the incredibly expensive Lucentis. I've found some research, but they're very small studies because Genentech isn't even trying for FDA approval of Avastin. They're of course pushing their new, more expensive Lucentis. Has anyone had a similar experience? What did you do?
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• AMD-dry type
• Posted: 2007-08-23 07:42:04 By Eileen B
• Someone very close to me is suffering from Age Related Macular Degeneration of the dry type. This is a disease that effects the retina of the eye and causes blindness. At the moment she has reached the point where she has only peripheral vision and it is getting worse.
  
  There is laser treatment out there for the AMD wet type but not for the dry type.
  
  Apparently Dr. David Wong, Professor of Ophthalmology at Royal Liverpool University Hospital performs ‘macular relocation surgery’ for AMD dry type, but they say is a complex surgery and prone to complications.
  
  I am finding it hard to fish off the net specific information on how one qualifies for this surgery, the cost, what the success rates are, and if there are any people I can talk with who have had the surgery performed on them.
  
  
  I would be ever so grateful if anyone can offer me more information how I can help this person who I love dearly find a way to treat this disease.
  
  Many Thanks,
  
  Eileen
  contact@ebnefsi.com
  
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• Number of RS visits?
• Posted: 2007-08-21 09:52:20 By Mary S
• Hello folks.
  I was a bit curious about actual visits to the RS. As you see we all have slightly different vision Problems.
  
  So just to compare what each of us are doing, Please consider answering a few questions.
  
  How many of you go to see your RS every month, 3 months, 6 months, or one year?
  
  Are you receiving treatment?
  
  What is the treatment your receiving?
  
  How long have you been receiving this treatment?
  
  Has the treatment helped improve your vison?
  
  Has this treatment kept your vision stable. If so for how long has your vision been stable?
  
  Thanks for responding.
  mar
  
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• Wet Macular Degeneration
• Posted: 2007-08-16 21:35:58 By Ann C
• I am recently diagnosed with wet this May,2007. I am getting the Avastin shot and also doing hyperbaric oxygen therapy which my GP feels will enhance the avastin. At this point I will try everything. I am 57. My question is what can I expect. Even with the shot will my vision still deteriorate? What are my chances of my right eye which is clear now of having the dry version> my insurance co is not covering the shot and it is costing a small fortune, I don't know what to do. I am so scared of putting my family into financial trouble paying for this but I also don't want to loose my sight. Can anyone let me know how fast this goes and how long I may be able to work.
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• Topical AMD Drug TG100801
• Posted: 2007-08-15 11:36:27 By Mary S
• Re: TargeGen Announces Successful Completion of Phase I Clinical Trial of Topical AMD Drug TG100801
  
  It has been along time since we have heard anything about this eye drop.
  I sure hope they have not stopped the research on it.
  Has anyone heard anything "NEW"
  about the trials of it, and results, or if it will continue to be tested and be out there for public use sometime soon?
  Website: http://www.targegen.com/
  
  http://sev.prnewswire.com/health-care-hospitals/20070227/LATU09127022007-1.html
  
  TargeGen Announces Successful Completion of Phase I Clinical Trial of Topical AMD Drug TG100801
  SAN DIEGO, Feb. 27 /PRNewswire/ -- TargeGen, Inc. has announced that the Company has completed a single-center Phase I clinical trial of TG100801 in 42 healthy volunteer subjects. TG100801 is a small molecule, topically applied (eye drop), multi-target kinase inhibitor that is being developed for the treatment of macular degeneration and other debilitating diseases of the eye. Preliminary results from this Phase I study suggest that TG100801 is well tolerated in humans at the low and high doses tested when applied topically twice daily for 14 days. Final study results are expected by the end of April 2007. TargeGen currently plans to initiate Phase II clinical trials in wet age-related macular degeneration (AMD) patients in mid-2007.
  
  TG100801, applied daily in eye drop form, is designed to suppress disease related edema, angiogenesis and inflammation simultaneously. Edema, angiogenesis and inflammation are pathological hallmarks of AMD, diabetic macular edema (DME) and proliferative diabetic retinopathy (PDR). Currently approved therapies for macular degeneration require repeated injection into the eye.
  
  "The successful completion of this 'first in human' safety study with TG100801 represents a meaningful milestone for TargeGen and sets the stage for the near term initiation of human efficacy trials. We remain very optimistic about the potential for demonstrating efficacy in humans in the near future," stated Peter G. Ulrich, President, CEO and Co-Founder of TargeGen.
  
  
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• Lucentis Report5
• Posted: 2007-08-13 21:03:17 By Leo M
• To let you know I went to the RS last week for Checkup everything was fine and scheduled a appointment in 3 months unless I see changes
  Not very much activity on this board. Where is everybody?
  Leo M
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• low vision rehab delivery model launched
• Posted: 2007-08-11 21:43:24 By dan r
• An historic event in low vision care was officially announced on August 10, 2007 at the third annual Envision 07 Conference in Kansas City, Missouri. As part of the keynote speech, R. Tracy Davis, O.D. described a model that has been developed over the past five months by leaders from optometry, ophthalmology, low vision, low vision rehabilitation and the low vision community. Read about the "Low Vision Rehabilitation Delivery Model" and see the diagram at www.mdsupport.org/library/deliverymodel.html
  
  This is an exciting development that we hope will eventually make the lives of every low vision patient easier. We have a third meeting coming up, and I'll continue to keep you up on the latest.
  
  Best wishes,
  
  Dan Roberts, Director
  MD Support
  www.mdsupport.org
  
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