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mary colleen
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Thanks for asking - - we are doing well. Vic is NED right now, though we struggle with certain deficits relaed to his brain tumor, surgery and WBR. It's all ok though, since his scans are clean. I kind of came out of the woodwork tonight to honor Don M, whom I consider to be a hero to so many here. I read daiily, and especially follow your progress as a near neighbor! Feel free to PM me! Take care - - - - MC
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Jude and Amanda - I read nearly daily, but virtually never post. I have to make an exception here....Don was a kind, gentle, intelligent man. He replied to me on many occasions when I needed a word or two. I appreciated it all the more because I understood what he was going through himself. Consider yourselves blessed for having had him in you lives. He was graceful, which says a lot. Mary Colleen
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Husband newly diagnosed NSCLC IV
mary colleen replied to ChristinaMarie's topic in INTRODUCE YOURSELF!
Christina Marie, I am very sorry to hear of your troubles. Please do understand that that this disease is becoming ever more manageable, and that "inoperable" and even "incurable" do not necessarily mean "terminal". Many conditions are essentially incurable, but are highly treatable and many people do very well for long periods. LC is moving in that general direction for many. I would guess that the drugs you are referring to are Cisplatin and Gemcitabine, commonly known as Gemzar. This is a very common first line regimen. My husband had it as well. From Dr. Jack West's Cancer Grace site: My research at that time and after incicated that it was about the same in study effectiveness as Carboplatin/Taxol, another very common first line regimen. As for cisplatin/gemcitabine vs. cisplatin/vinorelbine, nearly all experts in lung cancer consider the platinum-based doublets to be nearly identical in activity, with main differences in tolerability. The three doublets that are included as "gold standard" choices in our large post-op chemo trial (with or without avastin) are cisplatin/navelbine (vinorelbine), cisplatin/gemzar (gemcitabine), and cisplatin/taxotere (docetaxel). I would consider any of these to be completely acceptable options. Cancer Grace is at www.cancergrace.org, and is filled with useful information that you may find helpful. Mary -
Ned, I think I know what you mean about the weight feeling good against your back. I'm sure that if you thought you had a problem, you'd be going to the onc to mention it. For now, I would almost certainly blame Rosie, who looks like pure trouble:)
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Ned, The only think I can say here is that some of the medical sites mention that the pain of mets may tend to become worse at night - I have done my share of surfing due to pain my husband has. On the other hand, a good share of pain of all causes becomes worse at night....if it didn't, Tylenol PM wouldn't exist. MC
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Teri, you are in my thoughts today. MC
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Wishing tremendous peace for you.
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A very special thought for Ernie. God Bless!
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My husband had WBR about one year ago. Studies indicate that it greatly decreases the risk of future brain mets. As mentioned, we are one year out with no recurrence. The treatment was rather difficult, but manageable. From about the middle of the treatments onward, he had very significant fatigue. There are also ore superficial effects, such as hair loss, ear and scalp burns (like a sunburn), and some miscellaneous effects such as fluid buildup in the inner ears. One thing to understand about WBR is that it can take several months to recover from. My husband's neurological status (appetite, sensory perceptions, energy) became markedly worse 2 months after treatment ended before it began to improve. He still has minor memory issues. I still occasionally debate inwardly whether it was worth doing, and the answer I always come to is that it was. The negative impact it has had is minor in relation to the fact that he has not had any new brain mets. Hope this helps.
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I'm soooo happy for you Bucky!
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My husband had them too. We were told that it is a semi-common side effect. They were self-limiting.
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Bucky, my friend - we need you and your wonderful spirit here in full force. Please do everything that you need to do to look after this problem and overcome it. I do understand it - I have had my own internal struggles and bleakness since my husband's diagnosis. It's a tough problem. I am with you in spirit as you work through this! Mary Colleen
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I consider it a perfectly viable option; if it helps, use it. MC
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Teri, I have thought about this post since you wrote it. Not sure why. I did not intend to post in response, because I don't feel I doubt I can add anything important to the discussion. For some reason, you and the post remained on my mind today, and here I am. I can only say that I agree with Ann's post. Let it simply 'be', and say or do whatever feels natural. You're the right person, if you feel up to it yourself. I know you still miss Bill acutely. There is nothing wrong with sharing that - look at this as an exchange, not as you only providing the support. I just sense that it is not possible for you to do or say the wrong thing in this situation. Don't over think it, and take a hug from me with you. MC