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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Eyes Open, Mouth Closed

TGIF! In real time, welcome to the weekend!

In the interest of fair and unbiased reporting, I am once again writing about wet AMD…..well, actually I am writing about intravitreal injections, a topic many more of us are going to be interested in very soon. Although there seem to be PLENTY of you wet folks getting the shots already. Did you know intravitreal injections are the most commonly performed medical procedure in the US? According to a 2015 Review of Ophthalmology article, Updated Guidelines for Intravitreal Injections, the numbers are twice what they are for cataract surgery. That makes sense considering people only ever have two cataract operations as opposed to perhaps 24 or more injections in a year alone. No matter the logic behind the numbers, though, that is still a lot of trips to the doctor.

Anyway, when shots first started in 2004, there was a ‘best practices’ paper written. That paper was revisited in 2014.

One thing I noticed? You chatty people should stop trying to engage the doctors and nurses in conversation! That was suggested back in 2004 and has been supported in more recent literature.

Why, you may ask. Do you remember when your parents told you not to bite (or get bit!) because the human mouth is filthy? They were right. Mouths are ridiculously germy.

Healio reported a strict ‘no talk’ policy during injections causes substantial difference. Chatty doctors had seven cases of infection due to oral pathogens. Doctors who did not talk had two. Granted, these numbers were over a total of over 47,000 injections, but do you want to be the one with a raging eye infection? (That answer should be ‘no’.)

And if you asked to have a companion for ‘moral support’ and got told no? Infection was probably the reason. Doctors can control whether they speak or not, but they have no control over people you bring with you. They are not being cruel. Leave the motor mouth in the car.

Other things in the best practices paper were equally common sense. Use adequate antibiotics and anesthesia. Monitor intraocular pressure. Wash your hands! The whole idea is to reduce discomfort and reduce infection, not necessarily in that order.

Pretty much, the lesson is: avoid infection. Make sure you have a nice, clean face and hands when you get there. Understand why you cannot have people with you. Be quiet and allow the medical staff to be silent as well. Although the paper said masks and sterile drapes are optional, if you want them, you have the right to request them.

Once again, the goal is to keep you comfortable and – more importantly! – keep you from having eye infections. Stay healthy! In the end, the responsibility is on you. Speak up about concerns. If they won’t cooperate, look for other resources. Continue reading “Eyes Open, Mouth Closed”

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A Dozen Years of Progress

Here I am again, trying to offer a balanced look at AMD. Rumor has it the wet folks are wondering when they will get consistent coverage of their issues. Dunno.

When are we getting someone with wet AMD to write for us? You write. We publish. Until then, I can throw a few pages together, but my problem is dry. I cannot even begin to speak to the subject as well as someone with wet could. Consider it.

Found an article from BrightFocus Foundation. Title: How Effective are Age-Related Macular Degeneration Treatment? At the risk of sounding like a broken record, I like how the author points out there were very few treatments a scant 12 years ago. As the baby boomers we continue to drive many, many things in the world. Pig through the python; yes? We are now losing our vision and unless something is done, we are going to break the bank with our care needs. People respond to numbers, large numbers.

Which brings me to, did you know there are something like 200,000 new cases of CNV (wet AMD) every year in the United States alone? That is from CATT at 2 years: the facts.

I got to the CATT study because the BrightFocus article (above) referred to it. It is a 2010 study that seems to remain pertinent today. It was mentioned with ANCHOR, MARINA and HORIZON. These are all efficacy studies for your ‘shots’.

In the ANCHOR and MARINA studies Lucentis was proven to improve vision several lines on the chart. This was in the short term. The HORIZON and CATT studies were longer term and in these some gains were lost.

The VIEW trials suggested Eylea every eight weeks is superior to Lucentis every four weeks. However, more study is needed.

Avastin is a cancer drug. Injected into the body, it inhibits growth of new blood vessels in tumors. It tries to starve those, nasty things. Off-label use of Avastin for CNV has shown similar efficacy to Lucentis.

A big selling point for Avastin is cost. The article suggests it is $50 a shot. The others are thirty to forty times that much! Insurance problems? Talk to your retinologist about Avastin.

The BrightFocus article ends with good news. Did I mention I like this guy’s attitude? He reported a more recent CATT finding was 50% of patients retained 20/40 vision in the treated eye five years after the start of anti-VEGF treatments. Only 20% had 20/200 or worse! What do you think of those apples?

Again, these gains are in little more than a decade. How can you doubt more great things are coming and coming fast?

OK. How’d I do?

written July 1st, 2017

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