Is there any suggestion out there for my sister whose disease has so far not responded to any proceedure or chemotherapy including Alimta? Are there any tips about how to care for bone fractures from bone mets?
Is there any suggestion out there for my sister whose disease has so far not responded to any proceedure or chemotherapy including Alimta? Are there any tips about how to care for bone fractures from bone mets?
Hi Valerie,
Sorry about your sister. Has she considered clinical trials? We have a Clinical Trials Matching Service specifically for lung cancer. Give them a call at 1-800-698-0931 and they can tell you (or her) about options for trials she may be eligible for.
People are often concerned about clinical trials because they are testing drugs that are not yet on the market, but there have also been people who have had great success in these trials. It would definitely be worth exploring at least!
I'm not sure what you mean by "taking care of bone fractures." There are medications that can help with bone pain and bone strengthening. Radiation can sometimes help as well. Or are you referring to something else?
Hope that helps.
Amy
Amy: with clinical trials, does a person run the risk of getting a placebo and then actually receiving no treatment at all? Thanks.
Susan L
Hi Susan,
It's a good question and it really depends on the trial and what phase it is in, but you would be told if that was a possibility before you actually enroll in a trial. Placebos are rarely given alone and when they are used, it's usually in addition to an established treatment. It is VERY rare that a patient receives no treatment at all. That would bring up all sorts of ethical issues, and would probably only be the case if the person enrolled in the trial has already exhausted all other options.
But it definitely can happen and if you are interested in exploring clinical trials, it is definitely something to ask about. You would never go into a trial without knowing, and study staff usually monitor progress very carefully so that if your cancer starts to advance, they generally end your involvement in the trial so that you can try a treatment that might work.
Let me know if you have any other questions!
Amy
Thanks so much Amy. I'll try to check your suggestion out. I was wondering what you thought of this new format? I seem to be missing 2 things, Barbara Allen and a way to learn from every inquiry, which I tried to do. Do they still notify you? I now have to search this site on my own and the entries seem random, not consequetively dated and presented. I really appreciate the support but I also relied on the educational information.
Thanks
Valerie
Hi Valerie,
I appreciate you asking me what I think of the new format. There are still a few things that I don't like about it, but we are working with Inspire to make some changes. There are some default settings in the way we post that makes it so that sometimes they get posted to non-LCA sites if we aren’t paying close attention. I can’t find a way to look up comments that a person has made on their profile, just posts they have initiated. I’m bummed that the search function went missing, but I know they are working hard to get that back up – I know this is one of your concerns. Sometimes the search function on the old site annoyed me, so it’s quite possible that the new one will make things even easier!
Of course, one thing that I don’t like is that a few people have left. I hope everyone knows that my responses regarding this phenomenon are not to blow anyone off or be cavalier. It’s just that I know that different people feel comfortable with different formats. I have also learned in my life (a bitter pill to swallow) that I (nor anyone else) will ever be able to make everyone happy all the time. Even when we do things with the best intentions, sometimes they cause stress that can be too much for people.
There are things about this new site that I like better. I like it that I can go to the “All” discussions tab and just read right down, instead of having to click through each topic area to make sure I am getting everything. I like the pictures next to everyone’s username because it makes it feel more personal. I like reading people’s inspirations. The security settings are much better because we have control over all of the settings and over how much or how little we want to share with people.
I like how clean it looks. I have seen other support sites and that feel cluttered to me and I can’t find my way around them, and I feel like, after a few days of using this site, it seems much easier to navigate than other sites. I’m actually starting to forget how the old site looked, to be honest!
You mentioned something about notifications. Do you mean the daily emails that we got or something different? The daily emails should still be coming through, but check Walter’s posting regarding this to see if we can trouble-shoot: http://www.inspire.com/groups/lung-cancer-alliance-survivors/journal/not-ge tting-your-daily-e-mail-updates-read-here/ . The entries (I assume you mean the posts) are in chronological order by most recent post.
Let me know if you have other questions.
Amy
Add to the discussion