It's all disgusting and unseemly. Nobody should be making that much money off us Guinea Pigs. It's unconscionable.
My Goodwill
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Ejourneys asked a questionBreast Cancer
Cancer drug spending in the US doubled from $25 billion in 2012 to $50 billion in 2017
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alivenwell
18 days agoRead up on blockchain. It narrows down to monitoring a distribution system from manufacturing to the patient and closely comparing new products to existing products.
Once a patent is expired, it should require generics to get an exact replica including all fillers at a reduced price. I have experienced fillers in generics very different than branded meds. They list fillers in alphabetic order rather than by quantity. When other countries refuse the excessive prices, they should lowered across to all consumers.
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Ejourneys asked a questionBreast Cancer
A friend is looking for Stage IV/pRCC Kidney Cancer blogs/support
4 answers-
LiveWithCancer
about 1 month agoI have no personal experience with any kidney-specific places, but here are some links that I found. Your friend probably already knows about them all... I have a friend at my cancer center who has stage IV kidney cancer. He told me that kidney cancer is becoming more common, at least around here. :( I know he is getting Opdivo and Yervoy (i think). Apparently, even though he didn't respond to Opdivo, the combined treatment is having better success. I haven't seen him the last couple of times I was at my clinic, so I hope he is doing okay...
Anyway, here are a few links I found that your friend might check out if she hasn't already:
https://www.cancercare.org/support_groups/137-kidney_cancer_patient_support_group - this one is interesting. It is a 15-week program. You have to sign up for it by June 1. It is led by an oncology social worker. Sounds like it could be really beneficial.
https://csn.cancer.org/forum/142 - from American Cancer Society. Seems to be fairly active.
https://www.blogforacure.com/members.php?type=kidney+cancer - blogs for kidney cancer
I followed a lot of links for groups that were just not active at all. Wishing her luck in finding what she is looking for!
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andreacha
about 1 month agoEjourneys - I was diagnosed with stage IV RCC since 2006 but unfortunately I am not aware of any RCC blogs. My original treatments were surgery in 2006 and 2007. Was NED for four and a half years - until 2012. My treatment then was Sutent (oral) which I am still taking. But with time it is becoming less efficient as I developed mets to my lungs. If there is no improvement relatively soon I will start Opdivo. I'm no expert but if your friend needs to communicate with someone with RCC, I would be glad to do so.
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Ejourneys asked a questionBreast Cancer
Dept of Health and Human Services (HHS) Ofc on Women's Health has removed Breast Cancer pgs; Internet Archive has them
53 answers-
BarbarainBham
2 months agoChicagoSandy, you don't know what I believe.
There are people on this site who've said they are stressed and can't sleep after hearing about political news---furthermore, it's not necessary or appropriate on a cancer support website. People have left the site because of it, and everyone should respect the fact that this is a site for PATIENTS. (ACS)
Any cancer news is welcome without the extraneous political digs.
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ChicagoSandy
2 months agoThis site is for cancer patients and their caregivers seeking cancer information and guidance from fellow patients. "Support" isn't just about "feeling good." Anything that impacts our cancer treatment and survival is germane--and if certain leaders with the power to influence health care policy do so in a way that affects us cancer patients adversely (while paying only lip service to their Constitutional duties), we should not be forced to shut up about it.
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BarbarainBham
2 months agoIt's previously been discussed that others go to political websites to discuss political views. Interested cancer patients can go there also, but cancer patients who don't want to be around POLITICAL ANGER AND INSULTS shouldn't have to be subjected to it.
The negativity is the issue, and we don't want it.
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Ejourneys asked a questionBreast Cancer
Psychosocial Impact of Pre-malignant conditions (PIP) Study looking for participants
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Ejourneys
3 months agoMedical Conditions such as:
Blood related: Monoclonal B cell lymphocytosis, MGUS (monoclonal gammopathy of undetermined significance), Preleukaemia/Preleukemia, SMM (smouldering/smoldering multiple myeloma).
Breast and Gynaecology related: Cervical dysplasia, CIN (cervical intraepithelial neoplasia), DCIS (ductal carcinoma in situ), LCIS (lobular carcinoma in situ), Uterine cervix carcinoma in situ, VAIN (vaginal intraepithelial neoplasia), VIN (vulvar intraepithelial neoplasia).
Gastric conditions: Barrett's Esophagus/Oesophagus, Colorectal polyps, Gastric conditions (gastritis, atrophy, intestinal metaplasia, Autoimmune metaplastic atrophic gastritis).
Male-Specific Organs/Urology: PIN (prostate intraepithelial neoplasia), Testicular intraepithelial neoplasia.
Oral related: Erythroplakia, Leukoplakia, Erythroleukoplakia, OLP (oral lichen planus).
Other conditions: Actinic Keratosis (skin), Dyskeratosis congenita (bone marrow).
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Ejourneys asked a questionBreast Cancer
Tonight's breast cancer social media (#bcsm) chat: Have you read your medical record?
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Ejourneys
4 months agoTranscript at
https://www.symplur.com/healthcare-hashtags/BCSM/transcript/?hashtag=BCSM&fdate=02%2F26%2F2018&shour=18&smin=00&tdate=02%2F26%2F2018&thour=19&tmin=15@LiveWithCancer I included that thread in the discussion :-)
https://twitter.com/Elissa_Malcohn/status/968312437182214146
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Ejourneys asked a questionBreast Cancer
Resource for natural cancer strategies - Thought of @geekling and @barryboomer especially when I saw this
5 answers-
BoiseB
4 months agoThank you E Journeys for the links. I am a great follower of "integrative medicine" I have bookmarked Annie's site and signed up for newsletters from the both sites. I noticed the article about Idaho. My brother has been fighting this bill in its many incarnations for several years not. We were discussing this a few days ago. It seems that my brother will not get his three minutes to address the legislature this year.
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Ejourneys asked a questionBreast Cancer
FDA patient engagement collaborative call-in on Jan. 12 at 2PM ET
11 answers-
LiveWithCancer
6 months ago@Ejourneys, I have participated, as you know, in some of the Twitter chats at #bcsm ... but boy, do I have trouble keeping up. I don't know when to retweet, like, follow ... just plain comment :) :) :) I was doing the lung cancer chats, too, but i just got lost. Things move sooooooooooo fast!!
I listened to a book by Greta Van Susteren that I enjoyed - All You Need to Know about Social Media (without having to call a kid) or something like that. It was good. She loves Twitter, too. I think maybe she loves it so much that she feels like everyone knows what she knows so she didn't spend an inordinate amount of time on how to use it ... or I make it harder than it is, which is entirely possible.
I love the description that Jay Rosen uses ... I have forsaken FB over the last 6 months or more. One day, I got tired of it. And, I didn't go back until my mom said I just had to go give a health update because people were starting to contact her and my brother for information :) I would enjoy the mindcasting far more than the lifecasting.
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Ejourneys
6 months ago@LiveWithCancer, if you haven't done so already, I recommend following the chats using
http://www.tchat.io/
Once you sign in, you can choose a "hide retweets" option. You can also pause it if you need to catch your breath.
Another chat tool is
http://tweetchat.com/
Both make the chats much easier to navigate than just using Twitter alone. -
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