If you are not Stage IV but have questions, you may post here
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and i notice this is already pinned at the top. Good job!
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I salute you, Chrissy. This is brilliant!
Tina
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gentianvioloet:
I am not stage IV but probably as strong a IIIc as one can be - I had a tiny tumor with a LOT of node involvement that just happened to stay local. Here is what I personally feel:
1) I set the tone as to what information I am ever willing to release to specific people. Take it from her as to what she is willing to discuss and stick with that. Trust me when I say, not everyone realizes there are some questions that should NEVER be asked but be there if she wants to talk.
2) Friends and family know I have cancer, that's a given (gee, doesn't the bald head, no eyebrows or lashes kind of give that away) but I am also on Facebook mostly to keep up with family/friends, I almost never post. I have specifically asked each and every one of them to please not mention it or post on ANY social media. First off, I may have missed telling someone and I did not want them finding out thru FB. I also did not want to log on and see people ask how I am and my whole page be about me and cancer. As I explained to them, "I have cancer but it is not who I am or what defines me". I need to have as much normalcy now as possible.
3) not sure how much your friend is able to do but during all phases of treatment (4 A/C, 4 taxotere every other week) 35 rads with boost and now Arimidex, I had two friends that set up tiny surprises for me at different milestones. Prior to treatment we went to a local casino/racetrack about an hour away that just renovated areas and opened a new hotel and stayed for a few days (we don't even gamble), went to see some stage shows in DC shortly after first chemo and again after my final one and then back to the casino/racetrack again for New Year's Eve. We also have always travelled together in the past and will resume that pretty soon.
Even now that treatment is over, one thing that is so important is we still meet and do things together but they are ever respectful of the fact that I may have to call it a night early due to being tired, or I may hurt from Arimidex. This is the best revenge I can get from this disease - not to allow it to keep me down and as I said, I'm "this" close to stage IV. A PET scan before I began treatment showed no other traces of disease after surgery. I just completed treatment and in 2 weeks begin the tests that will tell me if it all "worked" since mine was also an extremely aggressive tumor.
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I like this post! Nice idea!
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Hope your treatment has done its thing financegirl and you can take a trip real soon. Your friends soynd like real sweeties best wishes x
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Hey Debbie,
Great that you posted it here. I had taken it down, and private messaged you to post exactly here . I don't know if you had seen my message to you. Sorry if you simply thought someone took it down.
Good luck,
Melissa Mod
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This is a great idea, Chrissy. There was such a heated discussion on another forum I was afraid my Mother's voice (through me) would be silenced if I was blocked from posting. No reason to punish a stage lV person just because they aren't computer literate.
My only concern is that this thread is already long, and it's been up for less than 24 hours. It might be hard to wade through all the posts if you want to answer somebody's question or post a question. Your question might get lost in the many posts after it before a person that can help you sees it. I doubt that people would read every post, and I can see this thread is going to get really long really fast if we can't start our own topic.
I would still like to be able to support the stage lV women/men when they start a thread. I hope that's allowed.
Again, it was a brilliant idea, Chrissy. It does help provide a partial solution.
Peggy
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Financegirl, I wholeheartedly second the suggestion for friends to take the initiative to get together and invite the patient out for some fun on the town. The friends who have done this for me during my treatment have really helped brighten my days and my mood.
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What a good idea to that this thread. Will keep it in mind if needed in the future. Thanks!
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Momine,
I'm not stage IV, but tI have heard of this through my work. I know this is a theoretical concern, because many tumours express the receptors that bind Neulasta and Neupogen. I am not personally aware of any actual human outcomes studies looking at cancer progression with Neulasta and Neupogen. I know there was a letter to the editor in the New England Journal of Medicine some time in the past 2 years about this.
There are similar concerns about Epo and Aranesp, which are used to treat low red blood cells. A few years back there was actually a study in the New England Journal of Medicine looking at overal survival. If memory serves me, it may have been two studies published in the same issue. It appeared stimulation of red blood cell production that way might be harmful in terms of overall survival.
It's definitely one of those things where they're trying to balance risk vs. benefit. Dying of overwhelming infection is bad, having a heart attack because of severe anemia is bad. And it's hard to know the balance when the risks are theoretical and not well-delineated by human studies.
If I get a chance, I'll try to Pubmed it for you. Or you can do it if you're comfortable. Pubmed is free access.
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Outfield, thanks so much for the info.
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I'm starting to rethink this thread. It's going to get too long to answer any questions or concerns I might have for my Mother. They will get buried by the many posts after them. Very few will read all the posts.
Although it's a good effort, and I applaud Chrissy for coming up with something, I don't think it's the solution. I feel my Mother's voice has been almost silenced because she's not computer literate and has to go through me. My Mother is being punished because she can't use a computer.
Peggy
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Hey Peggy
Was there a conclusion I missed that said you can't post in Stage IV? I hope not. I love your posts and it's good to hear how your mom is doing. You have given me so much support and I would hate to see you go.
I thought the idea was to try to find somewhere that newbies might like to check things out with stage IV folk, not to ban people like yourself from the IV forum. Lots of gals on the Stage IV boards have said this.
Laurie x
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Chrissy - Thank you so much for providing a thread that allowed me to ask such sensitive questions of Stage IV sisters. The timing was perfect because I was unsure exactly how to proceed beyond the original phone call; what my friend is going through is beyond my narrow scope of fears/emotions with this disease.
Coolbreeze, bobkat, steelrose, Bon, Sandilee, Cynsister, Apple, and financegirl - I thank all of you for taking the time to share your different opinions with me. I carefully read each post and when I called her today, I let her take the lead in just which direction the conversation would go. It was very emotional for both of us but I felt comfortable knowing that I had counsel from your perspectives. I hope I made her feel comfortable too. We will be meeting soon for coffee; again thank all of you for so generously sharing your emotions and advice.
Sending all of you good thoughts, Barbara
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Hi Laurie,
I can still go to your threads to offer support, which I fully intend to do. I think they're trying to discourage us from starting our own topics, questions, etc. by pinning the non stage lV thread at the top. Don't know if they will totally block us from starting new topics or not. I hope not, but in any event, you know I will always be there for you guys. I truly consider all of you my cyber family. When your heart breaks, my heart breaks for you. When you have joy to share, I'm there to help you celebrate.
Peggy
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Barbara - You're already a good friend for even asking how to approach this situation with your friend. It shows that you want to put her needs ahead of your own and you'll never go wrong if you try to do this. I also have a best friend like you and she is my best source of support. I can tell her anything, no matter how upsetting, and she always lets me talk even though I know it must be difficult for her to hear. She never asks me upsetting questions just to satisfy her curiosity like some of my friends do. She never quizzes me on how long I think I have, or offers unsolicited advice/suggestions. She doesn't offer meaningless platitudes when I get bad news, but usually lets loose with a string of profanity. It's obvious she cares, and she never makes it about herself. She's a gem of a friend, and so are you!!! Everyone should be so fortunate as to have a friend such as yourself.
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Actually the stage IV is for people who have it and since you are posting for your mom who can't access a comp - I think that makes you Stage IV as her advocate. Don't see any reason why you shouldn't start a new thread for your mom. She would do it herself if she were able.
Lx
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Peggy, you're kind of um, established here as far as I'm concerned. This is where I see it gets complicated. I don't think it's fair to discourage the folks who have been with us for so long not to post all of a sudden! I think this thread is great as a filter for all the new people, or people who don't usually don't post here to ask questions. It's a good start in weeding out some of the... how shall I say... stupid aggravating posts. Am I wrong?
And gentianviolet... Barbara... I can't think of a more gracious first poster on here than yourself. I wish you and your friend all the best, and many more years of friendship!
Rose.
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Just popping in to repeat what has been said in PM and on another thread, that there is no reason that posts and threads of family members and others with questions about caring for those with Stage IV should not continue as they have.
Judith and the Mods
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Glad to see you posting peggy, i've been a bit worried about you. Its different for me cos I only log in to see how you guys are doing cos (sentimental or not) i care about you. Take heart because it sounds like lots of people enjoy and appreciate your posts i know i did x, and are happy to answer your questions when things are really tough. Its been pretty hard hasn't it, reading all this stuff but hang in there and know that people are rooting for you and your mom just like I'm rooting for all you other guys xx steph
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Laurie, Rose, and Steph, I love you guys. I'm a little clearer now about my posting choices. I know I took this kind of personally, and I probably shouldn't have, but I was just so scared they were going to block ALL the caregivers, and that did affect me personally.
I hope this thread is a great success, and Chrissy was brilliant to think of it. She is one smart lady.
Peggy
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chrissyb - what a brilliant thread. Way to cut through all the drama. Thank you for coming up with a crystal clear solution!
trisha
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Peggy, I think you are awesome. Anyone with the courage to hang out here with us like you do, by proxy for your mother... well, that is darn near angelic in my book.
If you try to sneak off, we will come after you. Cuz we're your creepy stalker friends.
Hee hee.
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Hi Chrissyb,
You are so kind and thoughtful to start this thread. Love and hugs to.
Amy Lynn0 -
I'm glad I can post in this thread and receive support and love from amazing women who have so much to give in their experiences that touch the heart and soul.
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Peggy,
I have always enjoyed your posts and the comfort that you provide us when we are down. I am glad you feel ok to post on the stage IV!
I am glad that it is not restricted for others also.
Thanks to the mods for not doing that. I also think that hiding it or something would make it hard for a new comer that was advance stage to find it. That would defeat the purpose of the board all together.
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Maryam, spells are haram.
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Right back at ya, lulu, and ma. I love giving all you guys as much support as I can. Our relationship means so much to me. Like the Michael Jackson song says "Just call my name, I'll be there".
Peggy
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I thought we were all in this BC journey together. I now feel alienated from a part of this that may become my reality in the near future. I can learn about coping skills and possible treatments that I will have to concider. I feel like I should feel guilty because I haven't progressed YET.
When my friends ask me to enlighten them about BC, I'm happy to give them all the details that I have learned from the women on this board. With the right info perhaps they can avoid the mistake I've made. I ignored the signs of my BC for 2 years out of ignorance and now I'm paying the price. I wish someone had open my eyes to the BC risk.
I don't post on the stage IV threads because I really have nothing to offer except apologies, tears, and unwanted caring. I would hope that we can travel BC together because we are battling the same thing at different levels. Lets not exclude each other from the power of knowledge. With all the research I've done I learned the most from the women here, no matter what stage they are in.
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Chef127 - No one is closing the Stage IV forum to lower stages so the information that is there will still be available for all to read. You can still learn from our experiences if you so desire. We also aren't interested in not allowing everyone who wants to to post comments, so you can still offer sympathy & support. Some of us would just like there to be specific guidelines that can be followed so the comments are relevant to the forum. After all, the forum is for Stage 4 women/men and their families. I would think that anyone who cares about the Stage IV women would be happy to listen to their feelings on a matter close to them.
And, fortunately for you, we are not on the same BC journey. You may or may not ever join us and I hope you never do. And, that's the point of having a forum specifically for us - because our experiences are unique to our particular stage.
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