SJAS
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Posts posted by SJAS
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FABULOUS
! Keep that wonderful news coming. -
So many have had such good luck with stereotactic radiosurgery - hope your husband's goes equally well. I recently received an e-mail from a woman whose Stage IV husband had it 9 years ago and he's doing great! Thinking of you both.
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(((Sharon & family)))
So wish that things were moving in a different direction for you. My heart goes out to all of you. Prayers for strength and comfort.
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We saw a retina specialist today. He thinks that Steve is having radiation retinopathy, which normally can occur from 6 mos.-2 years after radiation. Steve's was probably accelerated because he is a Type 2 diabetic - even though his was well-controlled and he had been repeatedly tested before and had no problems. Dr. thinks it "set the stage" for the quick damage.
More tests this p.m. to see if they can do anything. They hope to at least be able to control the swelling and then see what can be done perhaps with a laser. If the major problem is from the swelling, it is hopeful. If most of it is vascular damage - things don't look too good. It may also be progressive. Anyone who has had WBR should really take note if they have a quick change in their vision.
Sadly, today is Steve's birthday. Guess his present is that there is still hope of saving his vision. Right now he is unable to read anymore. That was one of the things left in his life that he loved to do and still could do. I have a lot of experience with people who are blind, but I also know what a blow this is. Sorry for the whining. Just that he just re-registered his car after getting his stabe scans last month and now this. At least we had stable scans....
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Hi John,
Thanks for getting back to me and for the suggestion to also make sure his oncologist knows what's happening. We saw a retina specialist today. Steve has been a well-controlled Type 2 diabetic for 7 years with no previous evidence of eye damage. But the specialist believes that the diabetes "set the stage" for damage from radiation. I didn't know that radiation retinopathy can show up from 6 mos. -2 years after radiation. Steve is a bit early for that, but he still think that's what it is. More pictures this p.m. then they will see what they can do to at least control the swelling. Maybe some laser surgery too. Additionally, the possibility that it is uncorrectable and possibly progressive. Sure hope not, he already can no longer read. What a setback - and today is his birthday
Thanks again John!
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You've gotten some good advice and I'm glad you're going to be getting more opinions. Has anyone mentioned a triple-dose MRI. Steve had a couple when they were considering gamma knife for him. They really provided a much clearer picture of what was going on. Going to be saying lots of prayers for you TAnn.
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Just wanted to add my good wishes too and hope everything went beautifully after all your hard work.
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Steve had WBR ending in 3/04. He has been on Iressa since the end of July and MRI and CT scans within the last month have shown him to be stable. He also has been on Aredia or Zometa since about 9/04.
He has had a sudden severe vision loss. Opthamologist found severe bleeding/edema in both retinas posteriorally. No cataracts and other parts looked ok. He contacted a retinal specialist who also seemed puzzled, but he will probably see Steve on Monday.
Any ideas what could be causing this? Any questions we should be asking? Really appreciate your input as this has really thrown us in a spin. Thanks for any help!
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We're reeling a bit at this point. Steve has had a sudden severe vision loss. Found severe bleeding - edema in both retinas. The opthamologist was stumped - said it didn't fit what he knew of radiation retinopathy. Called a retina specialist who also seemed surprised by it. He will see Steve probably on Monday (of course, we had one of those late Friday p.m. appts. which just let you worry all weekend).
Has anyone had any experience with this? He did ask about shielding of the eyes during WBR, but it was our understanding that the WBR just went down to the top of the eyebrows. Also wondering if this could be connected with the Iressa. Any help would be appreciated!
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WBR was VERY hard on Steve. Severe scalp burns, his ears swelled up (making it difficult to hear) and turned a blackish color. Fatigue was overwhelming, but has improved in the last few months (finished WBR in 3/04). He seems to be having some short term memory problems, but only noticeable in that Steve used to have one of the most incredible memories I have ever seen. Even he has commented on how he is forgetting things, but it's not really compromising his life at this point.
You can read some of my old posts about Steve's WBR. He was being evaluated for Gamma Knife for 4 mets which disappeared with chemo. We resisted WBR because of possible side effects, but he soon had 15 mets. No choice at that point.
Not to freak you out, but I am soon posting a request for info regarding bleeding in the retinas. The opthamologist asked if his eyes had been shielded during WBR - but it was our understanding that the WBR only went to the top of his eyebrows. Will post when we get more info.
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Angie,
I'm going to hold good thoughts that the WBR, while a bear to get through, will eventually turn things around for your dad. Just keep telling him that it does get better even if things get rough during treatment. When it's over, things will slowly start to improve. Prayers for you all.
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You'll definitely have a real angel with you for this Christmas - may it be a blessed one.
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Congratulations Becky! From what I remember of Michigan winters, forget about the undies, make sure the snow blower is unpacked
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Oh Lisa,
I will be saying prayers for all your family. You have had so much to deal with at such a young age. ((((Lisa & family))))
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Heather,
I'm so sorry I am just getting to this post now. Things have been pretty crazy around here and I'm lucky to get more than five minutes on the computer. I just want to congratulate you and tell you what an incredible person you are. We had nothing around here so I just planned a rally - can't imagine the amount of work it took you to do all you did. People like you are going to make all the difference in this fight. You certainly have gotten things rolling---or is it running
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A bone met instead of a brain met! Here's to a quick and effective good riddance to that met. Prayers for you both.
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Angie,
A great deal of what you wrote about your dad could have been written about Steve when he was going through radiation. The fatigue was overwhelming, he didn't talk much and spent most of the time in bed. The eating was the same (this was when he lost most of the 60 lbs). We never tried Megace, but every other trick to try to interest him in eating. Amazingly our GP thought it might be severe acid reflux - even though we were highly doubtful because he didn't have the symptoms which we associated with acid reflux. The medicine worked miracles and he immediately started eating again. Also, I don't know if your dad is on morphine, but morphine also caused Steve's BP to really go down. Hope things start turning around - and remember they can! (Steve is sitting right next to me looking for the name of the acid reflux med. He's doing terrific!) Oh, he found the name. It was Protonix.
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Gail,
I'm so sorry your cat didn't have a few more lives left. It is so hard to say good-bye. I fully expect heaven to be filled with all of our dear creature friends - wouldn't be heaven without them.
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Like lung cancer isn't enough to have to deal with....I do hope you can teach those people a lesson. I think your compassion toward others in need sets a beautiful example for them if they would JUST OPEN THEIR EYES!
Wishing your family a wonderful Thanksgiving. -
If Sandy talked you into holding the Michigan bash next year, at least hold out for housewarming presents!
Hope you are going to start the new year off in that beautiful new home. Congrats 
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Wow, thanks for the "heads up" on this one. Humm, where was that article last year when everyone I knew was giving those candle parties?
I have boxes of candles I never used. Of course when we were without power for several days a few years ago, they did come in handy - that is until my son was trying to wash dishes by candle light and put the candle right under the wood cabinets! We have a permanent reminder of that one. 
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Thanks to all of you for your good wishes. What an incredible group of folks you are.
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Welcome to TeeTee and Rosebush,
While it's tough to see more families joining the fight, it's lovely to have more in the fold to support each other. Thanks for joining in!
! Keep that wonderful news coming.
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Enjoy every moment- you've sure earned 'em.
Wishing your family a wonderful Thanksgiving.
HAPPY FRIDAY!
in GENERAL
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Just like a cat to decide just when and for whom they will dance!
The picture is super though. Thanks for the smile, Peggy. It helped after the week we've been through.