I Tried My Best

I was raised to be responsible. I am responsible. I go to work and the job gets done. I have done the job between bouts of vomiting, with fevers and with migraines.

I am responsible but I am not crazy.

OK. Maybe the word is not crazy. However, I am definitely not one for not using good judgment or not looking at the big picture. Now, this is especially true when it comes to my vision.

I was at a professional gathering on Friday. One person there asked me about the circumstances of my sight loss. This person had an eye bleed that had started on Tuesday! That is three, count them, three! days. I advised an immediate trip to an emergency room. I told this person his sight could be very much at risk but was told in turn he had other, important obligations to attend to and he would, essentially, get around to it later.

I tried one more time and was again rebuffed. Are we truly our brother’s keeper? I wanted to call 911 and get this person to the hospital. That would not have been appreciated, but would he have appreciated my efforts if I had saved his sight? If he gets to a doctor sometime next week and gets told he has done irreparable damage to his vision will he appreciate I tried? Will he wish he had listened?

I assume our readers have more common sense, but since assuming can make an ‘ass of u and me’, I am going to spell it out. Never, as in NEVER, ignore an eye bleed. Mary Lowth wrote about vitreous hemorrhages for Patient. She stated vitreous hemorrhages are one of the most common causes of sudden, painless vision loss. Vision can be totally obscured by blood in the vitreous. Even if nothing serious is wrong that caused the bleed to begin with, you can be left with floaters. Not to mention blood is cleared from the vitreous at the rate of only 1% a day. That is over three months of impaired vision!

There is a whole list of things that can be horribly wrong to cause bleeding in the eye. Because I have dry AMD and have been warned about the potential of developing wet AMD, a bleed due to neovascularization was the first thing I thought about. There is also diabetic retinopathy and posterior vitreous detachment. PVD can be associated with a tear in the retina. None of these are problems to take lightly. [Lin/Linda: if you ever see what looks like a curtain drawing over your visual field or part of your visual field is obstructed, that IS an emergency which requires IMMEDIATE attention because it can mean that you do have a retinal tear. Most PVDs are accompanied by lots of floaters & sometimes flashes of light that are more noticeable at night (that’s the vitreous tugging at the retina. If in doubt, call your doctor.]

Lowth stated “retinal detachment must be excluded urgently”. In other words, should you have a bleed, run, don’t walk to the doctor and make sure your retina is still where it is supposed to be. Waiting three days is not an option.

Some of you are also sadly aware that bleeding can cause scarring and even more significant vision loss. Bleeds should be diagnosed and controlled as quickly as possible.

So, there you have it, some people believe they have more important things to do. They believe satisfying responsibilities is more important than taking care of their eye health. These people are wrong. If you even think you have an eye bleed, get to your doctor.

As for this person yesterday, I tried my best. Matthew 10:14 [“And if anyone will not receive you or listen to your words, shake off the dust from your feet when you leave that house or town.”]

written December 3rd, 2017 Continue reading “I Tried My Best”

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Three Types of Wet AMD

Well, the kitchen floor is now mopped. Took a deep breath and went back into the housekeeping fray after that last page. How do people get motivated for that sort of thing every day?

With a nod to our ‘wet’ readers, I am going to tackle an article on how to image different types of neovascularization. Not sure I am going to get very far because I never even ‘knew’ there were different types of choroidal neovascularization.

First off, to the article talking about imaging retinal angiomatous proliferation. Huh? Back to EyeWiki.

Choroidal neovascularization starts in the choroid. It erodes through the RPEs and results in chorioretinal anastomosis. Anastomosis? Lovely. Anastomosis is the connection of two vessels that were not previously connected. Sort of like a shunt. Got it? Good; moving on.

Retinal angiomatous proliferation is a process that happens ‘backwards’. It starts in the retina and progresses into the subretinal areas. It eventually connects the retina and choroid by forming an anastomosis. That is a connection where there is not supposed to be one. See previous paragraph.

Retinal angiogenesis proliferation has been called type 3 neovascularization. This begs the question: what are types 1 and 2? Type 3 is rare with 10% to 20% of people with wet AMD having this type of disease. This may be a good thing because the article lists all sorts of complications that are common in type 3 but rare in the other two types.

So now I have to do a little more digging and find neovascularization types 1 and 2. Back to EyeWiki where I discovered this: In type 1 the new veins are below the RPE layer. In type 2 the neovascularization passes through the RPE layer and compromises the neurosensory retina. That means it gets far enough to directly mess with the photoreceptors. Type 1 is hidden and type 2 is classic.

As far as treatment is concerned, ResearchGate.net (7/15) suggests type 1 can be treatment resistant. My guess – please note this is a guess – would be this is because type 1 is ‘buried’ in lower regions of the eye and anti-VEGF may have a harder time getting to it. That buried nature of type 1 – and another article – makes me think what we are talking about here is the occult type. Saw that classification before. Just needed to make the connection. Dawn does occasionally breaks over Marblehead.

Anyway, anti-VEGF treatments are still first choice although I am starting to see references to photodynamic therapy (“cold laser”) and even surgery. Maybe we should look into that, too.

Type 2 is the classic type. My reading suggests ‘shots’ are the treatment of choice there.

And as far as type 3 is concerned, it appears that in spite of the complications reported, type 3 can be treated rather successfully. Anti-VEGF injections do the trick, sometimes even on the first try.

So there you are the three types of wet AMD. Learn something new everyday.

written October 24th, 2017 Continue reading “Three Types of Wet AMD”

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Maybe They Have Something

Good afternoon! It was a busy morning. My husband had to take the car for service so he dropped me off at the hospital for a shoulder x-ray and routine blood work. My shoulder pain is little better.

You would think I could just continue with up dogs, down dogs, planks, side planks and all those other yoga moves with no negative effects, but nooooo, my shoulder is really sore. It might have something to do with my not being as young as I used to be, but I doubt it.?

Then I walked down to get a haircut and Pizza Hut buffet lunch. Picked up by hubby. Grocery store. This year’s photos to the camera store for display. Home.

I have cleaning to do. I have a report to write. Oh, well. I have an OBLIGATION to our website!

At the end of last year Lin did a page on topical treatment for wet AMD. That means eye drops instead of shots. One of the ones she talked about was Squalamine. At that time Squalamine had failed to satisfy the efficacy standard laid out and the trials had been terminated.

Squalamine had failed to reduce the number of shots needed to keep crazy, blood vessel growth at bay. However, there were some secondary goals that were reached. According to the January 29, 2017 VisionAware, there were positive effects on acuity. This was especially true in people with a specific type of lesion. 31% of the people with ‘classic’ wet AMD lesions gained 11 letters on the chart!

According to healio.com a classic lesion in wet AMD has well-demarcated hyperfluorescence in the early part of the test and progressive leakage later on. It is not to be confused with occult or combined lesions.

Ohl Pharmaceuticals decided in February, 2017 to take the 200 people already enrolled and start in on phase 3 trials. In April Ohl announced it was amending the timelines of the study so there could be results late this year or early 2018. They also amended their goal to be an increase in visual acuity as opposed to a reduction in shots needed.

Now, I am wandering into the area of unsubstantiated speculation here, so don’t take what I say as gospel. OK ? OK. The April 10th press release alluded to the research being funded until early 2018. To quote: “Following the close of financing today we are funded until 2018 including completion of our ongoing clinical trial and data readout by the end of 2017 or early 2018.” Now if that were me and I were getting positive results, I would want to show off those results quickly and improve investments and other funding. If I had squat, I would stall and plead for just a little more time and MONEY.

In other words, I think they have something.

Another reason I think they have something? The press release said they were working with the patients who had “the greatest potential to benefit from Squalamine combined therapy”. In other words, they stacked the deck. (In my opinion, of course.)

Anticipating they rock the phase 3 study AND the FDA gives approval to ‘go live’ in a reasonable amount of time, a combination Squalamine/Lucentis treatment could be available in 2018. Cool. We are on our way.

Written October 9th, 2017 Continue reading “Maybe They Have Something”

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Lots of Mayo

One of the best things about the end of Summer here is vine-ripened tomatoes. Our plants did not do well this year but I do take handouts.? I have been being given tomatoes for the last two weeks.

Now, I don’t know about you, but I think vine-ripened tomatoes are truly wonderful on BLTs. With mayo. Lots of mayo. I have been eating BLTs for the last two weeks. With lots of mayo; that is. [Lin/Linda: BLT = bacon, lettuce and tomato sandwich’ mayo = mayonnaise.]

Bacon and mayo mean fat. And what did Lin send me today but an article on fats and AMD. What?!? Do they have a camera in this house? Last time this happened I was going to stand in the sun all day at Briggs Blues Fest. “Sunburn correlates with AMD.”

Now, they are after my BLTs? (With mayo!) Is nothing sacred?

Joan Miller – I actually know a Joan Miller and I bet a lot of you do, too. Just all different ones – is at it again up there in Massachusetts. She is apparently the expert on eyes and fat. Dr. Miller is the person who was experimenting with statins to try to lower risk of AMD. In fact, she co-authored another paper on AMD, fats and statins just this past May. I am printing it off now as we ‘speak’. It is, however, 26 pages of text so don’t expect a quick turnaround time.

What is causing the latest ripple is some very preliminary work Miller is doing on blood testing. The Macular Society ran an article on blood biomarkers for (wet? Not finding that in the Massachusetts Eye and Ear Hospital press release) AMD. Apparently they found 87 fatty proteins, lipids, that were in much higher quantities in the blood of people with AMD. With early warning, different interventions may be used to slow down the progression of the disease.

Which interventions? Dunno, but by the time the Massachusetts study is replicated a few times, we may have something to fight fat in your eyes. Lowering the fat in your eyes means less fatty, ‘eye poop’ (aka drusen) to get between your RPEs and Bruch’s Membrane. That means fewer starving retina cells sending out “Feed me!” signals. Since the “Feed me!” signals are actually the VEG-F, vascular endothelial growth factor, a signaling protein of the body, if we get into the process and interrupt it before the VEG-F (read: “Feed me, Seymour!” signaling) is released, we will not need anything to rid our eyes of the protein. No anti-VEG-F required.  [Lin/Linda: The quotes “Feed me!” and “Feed me, Seymour!” are references from Little Shop of Horrors that she used in a previous page.]

In short: no fat = no drusen = no starving retinas = no ”Feed me!” aka VEG-F signal = no anti-VEG-F shots.

Just to quickly jump across to Europe, I want to mention a lot of the preliminary work for this study was done by a Dutch team headed by Eveline Kersten. Dr. Kersten did a pretty exhaustive literature review of all of the compounds found in fluids from AMD patients. Her literature review gave other researchers an idea of what compounds they should look for in the blood of AMD patients and non-AMD patients to do comparisons. Everyone builds on what others have done. We are in this together.

That is it for now. One other battlefront has been opened. The enemy for this one is fatty eyes. [Lin/Linda: notice that Sue didn’t say anything about giving up her BLTs with “lots of mayo”.  ::grin::]

written September 15th, 2017 Continue reading “Lots of Mayo”

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“Feed Me!”

We are having another dreary day. These days always manage to give me that napsy feeling. They also make me want to eat! Ugh.

I do much better when life is fast-paced and I am forced to follow along. If you want something done, ask the busy person.

So maybe if I want to get something done, I should force myself to be busy??? A bit of perverse logic there. Oh well….

I spent a few minutes today looking for new information on lampalizumab. There was nothing except business articles talking about the billions of US dollars Hoffman-LaRoche had been counting on before the phase 3 study failed to show a significant effect for the drug. I guess we need to wait for the research report to actually find out what went wrong. Everything out there now is all doom and gloom and speculation about what will happen to Hoffman-LaRoche stock.

I believe we talked about phase 3 of experiments like this. Phase 3 is a larger “proof of concept” phase. CenterWatch says 70 to 90% of drugs pass phase 3. Apparently most of the work is done in phases 1 and 2. With a statistic like that, now I am REALLY curious to find out what went wrong.

But, never fear, unlike Hoffman-LaRoche, we have not put all of our proverbial eggs in one basket! The article I was referring to in the page Recent Advances in AMD goes on to list quite a few different lines of research. In addition to research into anti-inflammatory therapies they are also experimenting with protective factors for the retina. Then add to those the experimental therapies that inhibit the visual cycle.

No, I am not exactly sure what that is either. My impression is it involves slowing the metabolism of the retina to cut down on drusen aka ‘eye poop’. Less eye poop to get between Bruch’s Membrane and the RPEs, the longer you will have usable vision. Sort of sounds like the low fiber dog food they marketed years ago. Low fiber was supposed to equal fewer ‘landmines’ in the yard. I don’t think that was good for puppies and I am not sure if slowing eye metabolism is good for eyes, but they are the experts so who knows?

Based on the theory neovascularization is caused by under-oxygenated, under-fed retinal cells screaming “Feed me!” like Audrey 2 in Little Shop of Horrors, they are also trying to increase the supplies to the choroid before the retinal ‘natives’ get restless.

MC-1101/MacuCLEAR is a vasodilator that has come through phase 1 testing and is ready for phase 2. That is a topical. They have tried several, other vasodilators with no or mixed results. One of the other ones they have tested is Viagra. However, Viagra did not help eyes at all! Sorry about that. (There goes that excuse for getting the script!?)

Of course, the last course of investigation mentioned is stem cells. I think this may be where I came in. And I know it is where I am going out right now! Chat at ya later!

written September 10th, 2017 Continue reading ““Feed Me!””

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Research: Dry & Wet AMD

Hello! I am going to get to the article Lin found on BrightFocus Foundation’s website about ‘lamp stuff’ aka lampalizumab but first I wanted to quickly mention a Google Talk by Isaac Lidsky. The title is Eyes Wide Open.

Lidsky began losing his sight to retinitis pigmentosa when he was 13 years of age. Although he has been totally blind for many years, Isaac Lidsky is extremely accomplished and has developed a philosophy that includes all sorts of concepts such as being present in the moment, doing what works and not abdicating responsibility for your life to your personal heroes and villains. His half an hour Google Talk may make some people rethink their attitudes towards their sight losses.

While I don’t expect many people to feel ‘lucky’ they are going blind – and Lidsky does consider his blindness to have been a blessing – Lidsky’s perspective on things can be thought provoking.

OK, onward to ‘lamp stuff’. We have quoted Joshua Dunaief before. One of the most helpful things he does for me in the current article is give us a pronunciation guide for lampalizumab. It is lamp-uh-liz-you-mab. Sort of like “Lamp!…uh, Liz, you mad/b?” You know, what you say when you knock over Elizabeth’s favorite light.

We have gone over the study results already in these pages. Complement factor I variant folks got kickin’ results. The rest of us, not so much. A reason for genetic testing for us before we submit to needles in the eyes, literally!

Dunaief says results are expected in 2018. Yep, December is their target date for publication. He does not mention phase 3 is over this December as is indicated in clinicaltrials.gov.

So, basically, still not really sure what is happening with ‘lamp stuff’ and me. May be offered it in December. May not be. May accept the offer. May not. I would love to know my genotype as compared to the SNPs they found in the experimental sample. Being a responder would be incredible. Being a nonresponder would be very bad. Dilemma.

And information for our ‘wet’ friends for my last 200 words. In JAMA Ophthalmology Jackson, Boyer and Brown reported the results of an experiment with an ORALLY administered vascular endothelial growth factor (VEGF) inhibitor. In other words, they have been experimenting with a pill they hope would do the same thing as your anti-VEGF shots.

The stuff is a tyrosine kinase inhibitor. It caused a lot of upset tummies and diarrhea (5 and 6 subjects out of 35 respectively) but the side effects were not bad enough to stop the experiment. Some people did stop because of liver problems. Those with liver issues would probably not be candidates for the treatment.

Only 40% of the total required rescue shots. Even those people received fewer injections than they had without the pills.

Before you all rush out for your X-82 pills, bear in mind this was a phase 1 experiment. That is safety and tolerability, guys. They are moving on to proof of concept, phase 2, with a bigger n. (n being the number of subjects in the study, remember). Check clinicaltrials.gov if you are interested.

Remember we all do our part in this fight. If you have a strong liver and a strong stomach, X-82 might be your kind of research. You might get to be a lab rat before I do!

written September 2nd, 2017

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This and That

Hey, guys! No idea what I am going to write about. I will just start and see what comes out. I have an hour to kill before going to teach class.

Told you I renewed my driver’s license yesterday. That was sort of stressful. I tried to do everything ‘right’ so I did not end up ‘outing’ myself. I would not want to try to pass as fully sighted everyday. I guess the truth really does set you free!

Remember: I don’t drive. My stubbornness and vanity are not worth someone’s life. I just needed to feel like a ‘big girl’.

After that I went and made a physical therapy appointment. I need to bring this shoulder back to health. Right now it is cramping my style worse than the eyes. The eyes don’t hurt! The shoulder does. I thought I was being good, but it still aches. Try trying to be active but not using one arm. Grrrrrrrrrr……

After kayaking on Sunday (yes, I know I have a bum shoulder. It reminds me hourly), I went to the phone store and got a new cell phone. Two and a half hours later and I was out of there. In that time I had to go potty at least once. If the process went on for another half an hour I was going to ask them to order take out!

Anyway, the point is this: phone store people are very helpful. They will spend the time with you. I still have a lot of stuff to do on the phone but Ron, the phone store guy, gave me his number and he promised to walk me through it all. As soon as I figure out some of what the hey I am doing on this phone, I want to load the augmented reality app and see how it works as a magnifier.

If your phone is slightly older, like mine was, it might behoove you to invest in a new one. On the new one, Ron turned the magnification up all the way. If I do the three taps thing after that, letters can be ¾ of an inch high. The easier to see, my dears.

Three taps thing? Yep. It is possible on Android phones to tap the screen three times in quick succession and everything magnifies. Three times again and it goes back down. No one may have showed you that little trick. The younger generation believe tech knowledge is innate, not learned. They think we should know.

And now news some of you can actually use, they are finding more evidence that we may be better off doing genetic testing before we start drug therapy. PubMed recently ran an article citing research that the risk allele of the Y402H polymorphism in the CFH gene is related to less favorable outcomes when using bevacizumab (Avastin) or ranibizumab (Lucentis). (Quiz: What does -zumab as a suffix tell us? Answer: humanized antibody. I learned something!) The ‘in English’ version of that is this: if you have a certain variation on the complement factor H gene, your response to those drugs will be less than you expected when it comes to wet AMD control. If you are not getting desired outcomes with either bevacizumab or ranibizumab, you might suggest your doctor try another drug instead. It appears that, in some cases, if one of those drugs doesn’t work well, the other one won’t work well either.

Well, I guess I should stop prattling here. Need to get ready to go again. Type at you later!

written July 12th, 2017

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