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zac495
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  • Hey I got a penn doctor! After Trish dumping me I think maybe penn better??? Dunno now. I'm sure I'm fine!
    Hi Ellen
    Took me about three calls but I did finally get them to give me dr Khan at FCCC. Had to persist. I think would be easier in your situation. I also saw dr Fung one time when Millenson was out. I liked him and think he also would be good

    I’m sorry you have cause for concern and of course hoping is false alarm
    Hi zac495, my email address is: michelle.mcdermott@comcast.net
    Thank you so much for offering to send me your journal on your auto stem.
    Shelly
    Hi Ellen,
    Are you going to the Wissahickon Valley Relay for Life on June 1? If so, please let me know which team to join. You can also email me at rasander1@gmail.com.
    Regards,
    Rich
    Nope, not macular degeneration. Mine is called Non-Arteritic Ischemic Optical Neuropathy or NA-AION. It's basically a stroke in the optic nerve, just as the nerve passes through the back of the retina. I've now had it in both eyes - it's the most common cause of sudden vision loss in those over 50. It blots out part of my peripheral vision, downward and inward, in both eyes. The first eye happened just before my lymphoma diagnosis, in 2008. The recent one was in March - it blocks out part of the central focus of my left eye, so it makes reading sort of aggravating. And, since I have a cataract forming in my other eye, which makes vision fuzzy and puts halos around bright objects, it's been sort of a pain to read (which I pretty much do for a living...)

    The clinical trial med will hopefully allow the "stroked" cells to heal somewhat and bring back part of that vision. I'll settle for getting my 20/20 (corrected) central vision back, even if peripheral is sacrificed to some extent.
    Yeah - I haven't really monitored and responded on the "Worried" forum for all that long, even being a moderator. I started in earnest only a couple of months ago, after they made me a moderator over on the other big cancer forum.

    Just in that short time, I've noticed that about 80% of the posts come from males between 18-26. What the heck is with these guys? They should be out crashing cars, partying, hiking and living life - not hunkered in the basement, trying to fit vague symptoms to dread disease via Google.

    You nailed it - it's like a game to them almost. They truly do not understand that even for a "mild" lymphoma treatment, it's no picnic. It's not something you want.

    Hope your eyeball issue is resolved soon and easily treated! I've got stuff going on with my eyes too (not cancer), and I'm even in a clinical trial to try to fix that. Loss of vision is not fun, either!
    Thank You for the file detailing your journey, still have some of it remaining to read,
    MERRY CHRISTMAS!
    Les (tbear)
    You're so welcome. Remember what I said - you can email me ANYTIME. And you must get yourself a mattress topper. Sounds silly but you're going to be there for awhile. It will really help you be more comfortable. Also a blanket (I took a duvet), towels, socks, leggings, shirts that you can pull over that are V neck. Why V? Because the line can be accessed. Or it doesn't have to be V, but slightly low - not high neck, get it? :) HUGS
    Here is the link http://www.carepages.com/carepages/Cheerful495 But it will be gone soon. If you give me your email, I can send you the word document I made so it's saved. Hang in. It's tough but it's doable! If you want to (or she does) correspond with me regularly, my email is ellen495@gmail.com I've walked others through this. Not only don't I mind, I "enjoy," it. (Obviously I wish no one needed me, but since that's not the case, it's something that gives me a good feeling - that's what i mean by enjoy). It never bothers me. Will they teach you to clean the line yourself? OH I just saw your email. I'll email you now!
    Ellen, I saw where you were saving a copy of notes about your Auto-SCT .... I am starting down that path myself, get a central line in Wed 22nd, ....

    My wife of 38 + years will be my care-partner, I know she is might near as worried about the steps ahead as I am. I would love to read / share your notes with her ..... if not too much trouble.???

    Whatever you decide is A-OK .... Thanks ... Les
    What a sweet message, Les. I'm so glad that it's helped. Others did the same for me when I was sick. HUGS!!!!!!!!!!!!!
    Just a big THANKS Ellen, there is no way of telling what your posts have done to help others in this journey, they help me every day ....

    Thank You!

    Tbear .... (Les)
    So, why go to doctor if we can just Google up the disease and treatment? We can take the shortcut and head straight to the pharmacy! If doctors were only as available as Google is... :-D
    Absolutely!!! yeah I probably beat DLBC (4.5 years since SCT) but the FL is always watch and wait forever. What can we do? It's disconcerting, yet I'm optimistic more and more and better and better treatments will come along IF and when we ever need them. HUGS
    Ellen

    You are so uplifting in your posts. They aren't even to me and make me feel better. You have such a way to share empathy with others even if that isn't what you experienced.

    Michelle
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