Pancreatic Cancer and Chemotherapy

[Abqfriend]

Update on my condition

Here is an update on how I am doing.
My cancer is in remission-my doctor said I would be dead last October-but I am still alive and kicking.

Goggles-The Onion Goggles-did not fit my face-my wife is using them-when cutting onions and say they work fine.
I have ordered 3 different pair of goggles from the Ebay web site suggested here-plus found a company that makes safety goggles that may also meet my needs and cost limits. I am still waiting for the goggles to arrive.
Humidity-I have raised the humidity in my home to at least 30% -that is helping-with the use of 2 humidifiers-We live in a desert climate. The increase in humidity has been helpful. I may go up to 40% humidity level over time.
Eye Drops-my Dr. Holly eye drops just came in-so too new to evaluate. I will ask my ophthalmologist his opinion on them.
Tranquil Eyes
-just started using them during the day and find helpful. I will not use at night due to another condition I have of having to sleep on a special pillow with a small hole in it for my ear-so there is no pressure on my ear. The chemo has made my ears super sensitive to Any pressure.
I see a second ophthalmologist today.-for a 3rd opinion.
My optometrist said I had a corneal erosion on my right eye-it feels that way-and my ophthalmologist disagreed and started me on Restasis to my Right Eye-I have been on Restasis 1 week.
I take bactracin ointment to my left eye due to my ophthalmologist trying to remove-unsuccessfully my punctal plug that he had inserted a week previously.
So I am seeing a different ophthalmologist to sort out the disagreement between my optometrist and ophthalmologist.
I use genteal ointment in my eyes 2-3x a night. Both my optometrist and ophthalmologist approve of this. I am going to ask the second ophthalmologist about this when I see him later today.
So that is a quick update! Thanks everyone for asking---and caring!
Art

[Rojzen]

erosion and gels - -possibly not the best mix

Art: I am ELATED by all this good news from you. . .Your posts have been wonderful, and I'm in awe of how quickly you have mastered the many approaches we all talk about and evaluate here. . .

Your trial and error with the goggles is going to make you one of our experts. . .If you find a pair that you can wear over glasses comfortably, will you post on this? I think that's still the missing link in the goggle world. . .

More importantly, if it turns out that your optometrist has indeed picked up a bona fide erosion, I would read that as a clue to what your eyes are crying out for most. . .Yes, there is the awful dryness, foreign body sensation and pain. . .but if your corneas are deteriorating from this (and by this I mean only temporarily and reversibly, because erosions are EMINENTLY healable), I would love you to consider seriously NOT using gels or ointments, and switching to a high oncotic pressure drop full time. . .i.e., Dwelle. . .PLease forgive if you've considered this and decided against it. .. I have not been following closely enough . .but if you're game, please see the posts from liz56 and Terri, about corneal healing and Dwelle. . .OK? Gels and ointments can really get in the way of true WETTING of your corneal tissue; and not using a drop that will strengthen the corneal tissue is a missed opportunity, perhaps. . .

Keep up the incredibly good work, Art. . .There is obviously a tremendous wellspring of healing energy in your constitution. . .

[lisiamc]

Rojzen,

I agree that Dr Holly's drops do a wonderful job. However, on Sunday night I tried using Dwelle with my Tranquileyes instead of the Genteal gel I've been using at night, and I woke up to a small erosion (an erosionette? ) after three hours. So I'm back to Dwelle in the daytime and gel at night. My eyes just dry up super-quickly at night. If I can go several months erosion-free, I will try again.

Art,

Good luck with the goggles - I hope you find the right pair. Mine really do help at night.

Lisa

[liz56]

Hi, Art!

Thanks for the update, and I am sorry that the onion glasses did not work out for you. The TranquilEyes goggles have helped me a lot.

Is your second ophthalmologist a corneal specialist? It took me an optometrist, my family doctor, two ophthalmologists, and two corneal specialists before I got real answers. The second corneal specialist was the one who set me on the right path for long-term help. One factor to consider (if you are seeing a corneal specialist) is to see if he or she specializes in diseases of the cornea rather than just refractive surgery. I'm sure that some corneal specialists are great, even if they do not specialize in diseases of the cornea, but as it turned out for me, that specialty made him very perceptive and well trained in detecting abnormalities.

Sorry to hear about the (possible) erosion. I suffer from those, too, and they can heal up before the doctor sees us, which makes it hard to tell if it happened or not. It sounds like you can tell yourself. I can tell these days, but before I was diagnosed, I had no idea what was happening to me. After two months on Dwelle, I noticed a difference, but it did take some time.

Side note: I read yesterday that Patrick Swayze (sp?) from the movie _Dirty Dancing_ was diagnosed with pancreatic cancer. I thought of your remarkable story and good spirits when I read the article.

Rojzen,

I agree that Dr Holly's drops do a wonderful job. However, on Sunday night I tried using Dwelle with my Tranquileyes instead of the Genteal gel I've been using at night, and I woke up to a small erosion (an erosionette? ) after three hours. So I'm back to Dwelle in the daytime and gel at night.
Lisa

Lisa,

Same here. I'm looking forward to the day when I can be one of the people who puts in a drop of Dwelle at night and maybe another during the night. Right now, I cannot do it. However, If I wake up two hours early, I can take off the goggles, put in some Dwelle, and sleep on my side for the last stretch. That's some progress, anyway. In June 2007, I made it through the night, one of the first nights, without an erosion, and I went into bed (since I had been sleeping in a chair to keep my head stabilized). I slept for exactly 20 minutes and woke up with screaming pain and an erosion. If I had just stayed awake, I could have prevented it! ugh. I'm glad that that part of this problem is in the past.

--Liz

[eva b]

fit over goggles

Rojzen...
I'm posting a separate thread about the fit over goggles I discovered from somewhere on this site...but can I remember where?

[kkahthesea]

Hi Art,
I just wanted to say Hi and tell you that you are a highly spirited person! I admire you and your stamina...an inspiration to us all!
I'm sorry to hear about your ordeal the last year... I went through two+ years of chemotherapy with my mom....and now I'm dealing with painful eyes...We never know what life has to deal us...it's been a dark time for me...but we keep looking for the light.
I think there are many helpful people on this site...Hang in there!
Karen

[Rojzen]

the overall calculation

Very grateful, here, to learn that erosions are still happening among overnight Dwelle users. . .My guess is that with continued use of Dwelle, the risk of erosion should go down, but that the twilight area, where one is switching over to Dwelle after getting good erosion protection from a gel, has to be very anxiety-laden. . .I'm blessed to be someone who, despite not doing well with Genteal and ointments overnight, ended up experiencing improvement as soon as Dwelle was started. . .but had I been doing great on a gel, the transition would have taken courage. . .

Possibly one has to factor in global/overall benefits of a new drop (effect on tear film, as well as on corneal epithelium) before feeling solid about switching. . .If one has a terrifically stable tear film, and no erosions, and also no pain or rawness, all while remaining on Genteal, for example, it's hard to argue that a switch is in order.. .But if some piece of the picture still needs fixing, a careful cost/benefit analysis should help to determine whether and when to switch to something very different, like a high-oncotic pressure drop. . .

[faithlies]

Art, I just want to say how in awe I am of your positive attitude.

I hope you are doing well, it sounds like you are taking every action possible to make your dry eye symptoms more bearable. Your posts are full of such positivity -- a joy to read!!!

Be sure to pop by and let us all know how you are doing.

[Abqfriend]

Update again

Hi everyone,
I am doing OK. My cancer is still there but not getting worse at the moment.
I saw a second opthomologist.
He recommended to me the Tranquel Eyes-which I already have and am using during the day. They help. I cannot use at night due to another condition I have where I have to sleep on a special pillow with a hole in it so no pressure is on my ear.
I tried the Dwell-and do not care for it. I read all the good comments on it-but it leaves quite alot of deposit on my eyelashes. I may try again. I find that eyelash deposits have a way to migrating to my eyes and that gives them brief transient discomfort. I shared with my opthomologist the Dwell ingredients and he had no negative comment about them. He had not heard about the product or Dr. Holly Phd.
I have found the Basch and Lomb product Soothe PF to be helpful to me. I also like Soothe XP as well as the new Optive with a vanishing preservative. I find the viscous or oily lipid layer of my tears is something I especially need in this dry climate to prevent evaporation. My tear film evaporation/clearing has been under 2 seconds which is very low.
My opthomologist also encourages the use of preservative free drops and eye ointment at night.
My Restasis is slowly kicking in.
I have two humidifiers now working in our home-and they or everything else I am doing seems to be helping as well.
I see corneal specialist next week-It is difficult to get appointments with any ophthalmologist let alone a corneal specialist-not enough doctors!-or nurses for that matter! -I am one.
-Art

[faithlies]

Good to hear it Art, keep plugging away (plugging away, haw haw, get it? -- sorry, I'll get my coat )

Anyway, you stick to what works for you. Glad to hear the restasis seems to be working.

I've been lucky with my optician and his staff, they've been great and got to the bottom of my problem after seeing three doctors at the eye hospital who in the end told me I had dry eyes and to basically "deal" with it.

I broke down and cried at my opticians last Saturday I was so frustrated with it all. I bought two pairs of glasses as I couldn't wear my contact lenses any longer and the polycarbonate they used in one pair distorted my vision, so I've got to wait another fortnight for another pair.

The girl who dealt with me was so nice, I took a box of chocolates in for her today to say thank you

So here's to the doctors, nurses and all of the other people who are trying to help us get through our problems.

Good luck Art -- and apologies for the bad joke

[dianat]

When you throw around a bad joke, faithlies, you owe everyone a box of chocolates...

[dianat]

Art,

There are techniques to deal with the Dwelle/lash buildup. We all have that issue with it. I don't use Dwelle enough to have a routine with it, but some here do. I'll ask Rozjen what her methods are for handling it. I think Dwelle's long-term use may be helpful for you...for all of us really. I'm trying to stick with it myself. I've been a Nutratear user for years and have always liked the feel. Still, I am curious to realize the therapeutic benefits of Dwelle.

Stay tunes. I'll ask Rozjen about the crusties.

Diana

[liz56]

Hi, Art!

So glad to hear your update! It *does* take time to get in to see a corneal specialist. I was lucky, because my ophthalmologist thought that my problem was so bad that he got me in. However, when I was looking for a second opinion, one place told me that they could put me on a list and that it would take a month!

On the Dwelle drops, I understand about the effect on the lashes and on the skin around the eyes. It bugs me, too. My eyes are in such bad shape that it does not matter to me too much, however. So, if you are irritated with it, maybe it its a sign that you can be a little discriminating in your choices.

One thing that I do after I put in the drops is that I run a damp washcloth over my closed eyes. Today, I had to be out for a while, so I took drops. I experimented with an idea that I had. I just replaced my tranquileyes foam today, so I took the old foam inserts, cut them in half so that they were the same shape but thinner, and took them with me, dampened, in a baggie. That way, I had a clean and soft sponge to use when I was out and putting in Dwelle drops. Also, I put it only one drop in each eye. I agree that the drops can be annoying, can burn at first, and be a little hard to get used to. Compound that with the fact that it took two months of my using them to get a noticeable benefit, and you get a sense that these are more like a medicine than a "quick-relief" eye drop. It's so different from other drops that it does not work within the regular set of expectations but, in my experience, exceeds expectations in the long run. It may not be like that for you, though, and you should do whatever works best for you.

Let us know how things go with your next appointment.

Best wishes,
Liz

[Rojzen]

Hi, again, Art. . .I second Liz's crucial observation about Dwelle not being a quick fix. . .Instead, it seems, for many, to provide substantive improvement in one's eye health regardless of the subjective experience with it, albeit with a few quirky maintenance issues to attend to. . .Dianat is a gem for prompting us to address these maintenance issues, because without easy solutions to those side issues, the main quest can seem less appealing. . .For me, and, I predict, for you, Art, it could be very well worth putting up with side issues of Dwelle for the unique benefits you may reap. . .

Overnight, the Dwelle does crust enough on my eyes that I actually have to pull the lashes apart in the a.m. in order to open my eyes. . .At that hour, I don't have any crust dropping into the eyes. . .I prevent crust getting into where it could be irritating by heading straight to the wash basin for an a.m. eyelid wash. . .I use Sterilid or baby wash (dilute) to remove the Dwelle crust, and then do a little massage on the eyes, to activate whatever meibomian action I can. . .

If i need another dose of Dwelle during the day, I pop the drops in and keep the eyes shut for a minute. . .Then, when I open, I hop to the wash basin again, keeping eyes shut, and just rinse the exterior lids with warm water.. .THen a quick dab with a clean towel, and no crust is likely to form afterwards. . .

When I'm lazy, I let the crust sit on my lids, and even get in my eyes. . .I have lost some sensitivity to the stuff, apparently, because even when it gets in to my eyes, I'm not bothered much by it. . .My eyes still feel better with Dwelle crust in them than they did on my best day taking other drops or Restasis (:^)). . .

I hope this is helpful, but as Liz has shown, there are many approaches here to Dwelle residue removal...