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Cancer Immunotherapy Community from the Cancer Research Institute

Your support group and discussion community for issues related to cancer immunotherapy

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Cancer Immunotherapy Community from the Cancer Research Institute

Share your story!

In: Survivor stories

Marissa_CRI

share-your-story-20

200258

  • 2 Replies

Hi Everyone, I am the new patient program manager at the Cancer Research Institute and would like to hear from you! If are willing to share your experience with cancer and immunotherapy so that other patients can learn from your experience, please email me at mclifford@cancerresearch.org. Our hope is to share your story, either through a short video or written article to help educate ... Read More

Cancer Immunotherapy Community from the Cancer Research Institute

New FDA committee talks patient engagement challenges and opportunities

Chronic-Inspire's journal

Chronic-Inspire

new-fda-committee-talks-patient-engagement-challenges-and-opportunities

200258

The FDA's Patient Engagement Advisory Committee held their first meeting last week. By Radha_Inspire Digital Editor, Inspire Early and consistent patient involvement along the spectrum of the clinical trials process – especially during the initial design stage – was the common refrain heard during last week’s inaugural public meeting of the FDA’s Patient Engagement Advisory Committee ... Read More

Cancer Immunotherapy Community from the Cancer Research Institute

Fighting words: How we talk about cancer

Cancer-Inspire's journal

Cancer-Inspire

fighting-words-how-we-talk-about-cancer

200258

By Radha_Inspire Digital Editor, Inspire News reports and public well-wishes for Senator John McCain, who was recently diagnosed with glioblastoma, an aggressive type of brain cancer, have struck a linguistic nerve among cancer patients and caregivers with their descriptions of the senator as a “fighter,” engaged in “battle,” ready to “win” against cancer. The heightened awareness ... Read More

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Cancer Immunotherapy Community from the Cancer Research Institute

Gene testing, precision medicine, and shared information

Brian's journal

Brian

gene-testing-precision-medicine-and-shared-information

200258

Dear members, How should we be thinking about our genetic information when it comes to disease? It’s a question many of us are asking here on Inspire, sometimes very intensely, depending on the nature of the disease. The information we get from our genome can have a direct impact on so much, including how, or if, we can be treated for certain types of disease -- that is the nature ... Read More

Cancer Immunotherapy Community from the Cancer Research Institute

Cancer stories that “no one wants to hear” might inspire change

Cancer-Inspire's journal

Cancer-Inspire

cancer-stories-that-no-one-wants-to-hear-might-inspire-change

200258

By Radha_Inspire Digital Editor, Inspire Over the course of 11 intense and difficult months, Renata Louwers’s husband Ahmad was diagnosed with and died from metastatic bladder cancer. The question Louwers kept asking herself then and afterwards was why no one was talking about the experience of dying from cancer? “I think it’s a crisis in this country,” she told Inspire. In a recent ... Read More

Cancer Immunotherapy Community from the Cancer Research Institute

How do you make medical decisions?

Brian's journal

Brian

how-do-you-make-medical-decisions

200258

  • 1,052 Replies
  • Processing ...

Dear members, As patients and caregivers, we have more sources of medical information available to us than ever before to help us make the best decisions possible for our health. Advice from our doctors is sometimes not the same as the information we learn from the experiences of our peers, and there are often other sources of information available as well. Some of our decisions feel ... Read More

Cancer Immunotherapy Community from the Cancer Research Institute

keytruda not working, starting on CAV chemo - SCLC - ext

roxane1's journal

roxane1

keytruda-not-working-starting-on-cav-chemo-sclc-ext

200258

Devastating news, 2 weeks ago hubby had a CT scan, we new from the GP, the report wasn't good. Increasing pain all over, high temperature, no appetite at all and tiredness all the time. For the past 2 weeks or so he was sleeping most of the day. Today was supposed to be the treatment day, but instead he was admitted to the hospital they will run some tests and start CAV on thursday ... Read More

Cancer Immunotherapy Community from the Cancer Research Institute

How to pick a hospital for cancer surgery? Inspire members help researchers

John2's journal

John2

how-to-pick-a-hospital-for-cancer-surgery-inspire-members-help-researchers

200258

Dear members, This past weekend, an Inspire researcher and a member of our Advanced Breast Cancer Support Community participated in a panel discussion at the Medicine X conference at Stanford University. The main stage session at the international conference examined how people with cancer choose US hospitals for their cancer surgery, and to help improve how patients choose hospitals ... Read More

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Cancer Immunotherapy Community from the Cancer Research Institute

OPDIVA OUTCOMES

In: Survivor stories

Rubyj43

opdiva-outcomes

200258

So my husband is going on number 17 treatment of Opdiva. The doctor discouragingly told us that she usually sees progression after a year of being on OPDIVA. While I understand her means of honesty I just can't help but be upset that she kinda is taking away our hope and instilling a fear into us. Did anyone have any different experiences. Thank you in advance ... Read More

Cancer Immunotherapy Community from the Cancer Research Institute

What’s in a number? The million member milestone

Brian's journal

Brian

whats-in-a-number-the-million-member-milestone

200258

Dear members, Last night, Inspire hit a milestone -- one million members. One thing that is clearer than ever is that the value of this community is created by you, every minute of every day. I often think that our job is to provide you a safe, supportive space, and then get out of your way. The words you write and the friendships you forge are things we could never create on our own ... Read More

Cancer Immunotherapy Community from the Cancer Research Institute

HNC mets to lumbar bone, so radiation decision

In: Checkpoint blockade (e.g., Opdivo (nivolumab), Keytruda (pembrolizumab))

Sokewel275

hnc-mets-to-lumbar-bone-so-radiation-decision-1

200258

Hello team, I've been thru chemo's and erbitux over this past year (no rad due to original lower back spot ). I had mixed responses; shrinks but new little spots still in lumbar and hip. Now I'm on Opdivo seeing how that works. 1st scan in late November. I'm optimistic but now too optimistic. In the meantime my lower back has been pretty painful causing lack of sleep so Sloan Kettering ... Read More

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