• Ejourneys' Avatar

    Ejourneys asked a questionBreast Cancer

    Tonight's breast cancer social media (#bcsm) chat: Highlights of the recent American Society of Clinical Oncology (ASCO) annual meeting

  • Ejourneys' Avatar

    Ejourneys asked a questionBreast Cancer

    Cancer drug spending in the US doubled from $25 billion in 2012 to $50 billion in 2017

    • barryboomer's Avatar
      barryboomer

      It's all disgusting and unseemly. Nobody should be making that much money off us Guinea Pigs. It's unconscionable.

      19 days ago
    • andreacha's Avatar
      andreacha

      EJourneys - Thanks for the info. I just finished contacting those from my state of GA. They probably looked at the name and said: "oh, no - not again!"

      19 days ago
    • alivenwell's Avatar
      alivenwell

      Read 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.

      18 days ago
  • Ejourneys' Avatar

    Ejourneys asked a questionBreast Cancer

    Tonight's breast cancer social media (#bcsm) chat: Celebrating National Cancer Survivor's Day - Helpful? or anxiety causing?

    • GregP_WN's Avatar
      GregP_WN

      How did it go? We were out with my Sweetie's favorite Aunt. We took her out to eat for her birthday. I hope it was a good one, for me I say it's helpful, no anxiety for me. I think my age is overcoming my anxiety level, or something like that.

      19 days ago
  • Ejourneys' Avatar

    Ejourneys asked a questionBreast Cancer

    Coming up: two free Johns Hopkins Breast Cancer Survivorship Webinars

  • Ejourneys' Avatar

    Ejourneys asked a questionBreast Cancer

    A friend is looking for Stage IV/pRCC Kidney Cancer blogs/support

    4 answers
    • LiveWithCancer's Avatar
      LiveWithCancer

      I 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!

      about 1 month ago
    • Ejourneys' Avatar
      Ejourneys

      Thank you both!

      about 1 month ago
    • andreacha's Avatar
      andreacha

      Ejourneys - 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.

      about 1 month ago
  • Ejourneys' Avatar

    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's Avatar
      BarbarainBham

      ChicagoSandy, 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.

      2 months ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      This 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.

      2 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      It'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.

      2 months ago
  • Ejourneys' Avatar

    Ejourneys asked a questionBreast Cancer

    Call to action: Submit public comment to oppose HHS Secretary Alex Azar's plan to flood the health insurance market with junk insurance.

    6 answers
  • Ejourneys' Avatar

    Ejourneys asked a questionBreast Cancer

    Psychosocial Impact of Pre-malignant conditions (PIP) Study looking for participants

    • Ejourneys' Avatar
      Ejourneys

      Medical 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).

      3 months ago
    • geekling's Avatar
      geekling

      Nobody ever seems to care about a woman's ASSets.

      3 months ago
  • Ejourneys' Avatar

    Ejourneys asked a questionBreast Cancer

    FYI Prostate cancer: Large, robust study on screening gets very little media coverage

    • geekling's Avatar
      geekling

      Wow, Ejourneys, this website is a phenomenally marvelous resource.

      Thank you.

      3 months ago
  • Ejourneys' Avatar

    Ejourneys asked a questionBreast Cancer

    Tonight's breast cancer social media (#bcsm) chat: Have you read your medical record?

  • Ejourneys' Avatar

    Ejourneys asked a questionBreast Cancer

    Resource for natural cancer strategies - Thought of @geekling and @barryboomer especially when I saw this

    5 answers
    • BoiseB's Avatar
      BoiseB

      Thank 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.

      4 months ago
    • Lola27's Avatar
      Lola27

      Don’t forget this is natural combined with conventional therapies!

      4 months ago
    • BoiseB's Avatar
      BoiseB

      @Lola27 Natural + Conventional = Integrative. I am so glad my medical system is committed to Integrative Medicine several Dr.s have that listed as their first interest.

      4 months ago
  • Ejourneys' Avatar

    Ejourneys asked a questionBreast Cancer

    Free webinar on Feb. 20, 2-3:30 PM Eastern: Cancer as a Disability: Your Rights in the Workplace

    • LiveWithCancer's Avatar
      LiveWithCancer

      This should answer lots of questions people have!

      4 months ago
    • GregP_WN's Avatar
      GregP_WN

      This is a common issue, should be valuable information.

      4 months ago
  • Ejourneys' Avatar

    Ejourneys asked a questionBreast Cancer

    Tonight's breast cancer social media (#bcsm) chat: What does advocacy mean to you?

  • Ejourneys' Avatar

    Ejourneys asked a questionBreast Cancer

    Tonight's breast cancer social media (#bcsm) chat: Developing a practice of mindfulness

  • Ejourneys' Avatar

    Ejourneys asked a questionBreast Cancer

    Metastatic Prostate Cancer Project launched

    • GregP_WN's Avatar
      GregP_WN

      Thanks for posting!

      6 months ago
    • Skyemberr's Avatar
      Skyemberr

      I can't wait to see whay other solid cancers they go after! Good luck to everyone in this study!

      6 months ago
  • Ejourneys' Avatar

    Ejourneys asked a questionBreast Cancer

    FDA patient engagement collaborative call-in on Jan. 12 at 2PM ET

    11 answers
    • LiveWithCancer's Avatar
      LiveWithCancer

      @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.

      6 months ago
    • Ejourneys' Avatar
      Ejourneys

      @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.

      6 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I do use tchat.io. I couldn't do Twitter at all :)

      6 months ago