"Very exciting to be a part of this important
work. That was my goal all along...I didn't think the treatment would
actually WORK to cure my cancer...I just hoped to be a part of something
that would further the possibility of a cure"- Sue Scott
"We have to continue to spread the word and help educate about immunotherapy and clinical trials. Always Hope and Believe" - Aricca Wallace
"They have enabled years of laboratory research that is still going on." - Dr Christian Hinrichs
For this month's Immunotherapy chat we welcomed NIH researcher, Dr. Christian Hinrichs (@CSHinrichsMD), as well as patients Sue Scott (@SurvivorSueWDC) and Aricca Wallace (@mandmsportsmom), who provided their unique insight into participating in immunotherapy clinical trials.
We had 30 participants and over 1.5 million impressions. You may find more analytics here and a complete transcript here.
Here is a sample of the responses our guests and participants provided:
T1A: What is immunotherapy? How is it different from other gyn cancer treatments (surgery, chemo, radiation)?
- Unlike other treatments, immunotherapy uses the body's own immune system to help fight the disease
- Immunotherapy stimulates immune response or modifies it so that immune cells can recognize and kill cancer cells.
- immunotherapy works with your immune system to target cancer cells. For gyn cancers, this type of treatment is primarily being studied through clinical trials and our knowledge is advancing rapidly
T1B: @CSHinrichsMD - What did your immunotherapy trial for HPV-related gyn cancers entail?
- Immunotherapy is a type of treatment that uses the patient’s own immune system to fight the cancer. The immunotherapies that we are discussing today are based on T cells, a type of immune cell that specializes in killing abnormal cells.There are two types of immunotherapy that have received a lot of attention lately. One is checkpoint inhibitors. These drugs block inhibitory signals sent to T cells by other cells. This is “releases the brakes” so the T cells can attack the cancer cells. The other is adoptive T-cell therapy (ACT). For this, the patient’s T cells are grown in the lab and then infused back to the patient to treat the cancer. This is what @mandmsportsmom and @SurvivorSueWDC received. The T cells for ACT can be grown from a tumor that is removed by surgery. These are called tumor-infiltrating T cells (TIL). T cells from ACT can also be grown from blood and genetically engineered to have receptors that let them target the tumor. One type of receptor is called a CAR. Another is called a TCR.
- Our current clinical trials use T cells that are engineered to have TCRs. This does not require surgery, and it seems to more consistently and potently target the cancers
T2: For the patient, what is the immunotherapy treatment experience like? What are the common side effects with immunotherapy?
- @mandmsportsmom...After 18 rounds of chemo and 32 rounds of radiation...immunotherapy was a God send! I had to have a tumor removed and the t cells grown in the lab, had aphoresis to remove white blood cells and together they trained in the lab. I was given 7 days of chemo to deplete immune system.The t cells and my trained wbc were then put back in me. Millions of cancer cells being injected was scary! The trained wbc immediately recognized the tumors and started attacking. While this was happening it was like having the flu x 1000..fever, chills, etc just like fighting any other virus. The interluken 2 that you are given after injection, I call it gatorade for the cells. Would just ramp them back up again and symptoms of high fever, chills, etc would start again..nothing that nurses and meds couldn't help control.
- @survivorsuewdcI always say that Dr. H took out my immune cells and sent them to 5 weeks of KUNG FU school (genetically altered them in his lab) and then put 74.5 BILLION of them back in me! I feel the side effects were easier to handle than the ongoing side effects of chemo and radiation.Because the immuno trial I was in included 7 days of chemo ( to rid my body of its current TIL cells and make space for the " new and improved ones that Dr. H had "built" in his lab) I did lose all my hair. I also was sick from the IL2 doses.
- Checkpoint inhibitors that target PD-1 have remarkably few side effects. This has been revolutionary.
- Cell therapy is a more intense, often inpatient, treatment that can have many side effects.
T3A: Is immunotherapy common in treating gynecologic cancers? Is it only offered through trials?
- There are emerging data for immunotherapy in some gyn cancers, and patients can receive some treatments outside of clinical trials. Nonetheless participation in clinical trials is best whenever possible as we are still learning about these treatments.
- One of the issues is ensuring immunotherapy can identify tumor cells well. There's a lot of interest in radiation synergizing with immunotherapy. Example trial for cervical/endometrial cancer: https://clinicaltrials.gov/ct2/show/NCT03192059?term=immunotherapy+radiation+endometrial&rank=2
T3B:
Patients - How did you find out immunotherapy was an option? What were
your concerns? What led you to go forward with enrolling in a trial?
- Another God send. @cshinrichsmd reached out to former colleagues. One that happened to be my current gyn onc.
- You learn you have to be an advocate for yourself. I now tell ppl to check out https://clinicaltrials.gov/ to see what is out there
T4: What advice would you give to others considering an immunotherapy trial, or any clinical trial?
- DO IT! Once "standard treatment" doesn't work - what do you have to lose! New breakthroughs happen daily
- You don't need to wait for your medical team to bring up trials. You can do your own research or reach out to patient advocates or advocacy orgs
- Re clinical trials, shop around. There are lots of them, and they are not all equally good. Look at past results.
- Don't accept that the only answer is to control not cure you may have to control for awhile there is hope given daily w/trials
- @cshinrichsmd T5: @mandmsportsmom and @SurvivorSueWDC are the brave volunteers who first showed that this type of treatment can work. They did this when all we doctors could say was that it seemed like a good idea. Studies that we did on samples that they donated have shown us which patients are more likely to respond to this type of treatment. Study of @SurvivorSueWDC led to the discovery of a new treatment that we hope to test soon.They have enabled years of laboratory research that is still going on.
T6:
What are some resources for leaning more about immunotherapy in
treating cancer? For finding out what's new and what trials are open?
- The most comprehensive resource for clinical trials is https://clinicaltrials.gov/. There is a lot of information and advice from your doctor is important. The NIH Clinical Center has many immunotherapy trials. Patients are not charged for medical care at the NIH. In some cases, travel is also free. https://clinicalstudies.info.nih.gov/ Also, for patients with advanced-stage, HPV-related cancers, like cervical, vaginal, and vulvar cancers, I am easy to find. https://ccr.cancer.gov/Experimental-Transplantation-and-Immunology-Branch/christian-s-hinrichs
Patients and caregivers are invited to continue our discussion on the Smart Patients platform at https://www.smartpatients.com/partners/gyncsm
Join us next month on our regular day (second Wednesday of the month) Wednesday, April 11, as we discuss SGO Annual Meeting Research Review and Ask the Docs.
See you next month and thank you for using the #gyncsm to share news of interest to our community.
Dee
Co-founder #gyncsm
RESOURCES
@FacingOurRisk new info section w/ an overview on #immunotherapy for #cancer treatment.
http://www.facingourrisk.org/understanding-brca-and-hboc/information/cancertreatment/immuno-oncology/index.php
What You Need to Know About Immunotherapy Side Effects via @cancerdotnet
https://www.cancer.net/blog/2018-02/what-you-need-know-about-immunotherapy-side-effects
@SITcancer released new consensus recommendations on recognition & clinical management of immune-related side effects of immunotherapy.
https://www.medpagetoday.com/reading-room/asco/immunotherapy/71026
@DanaFarber New Clinical Trials Test Immunotherapy for Cervical Cancer
http://blog.dana-farber.org/insight/2018/03/new-clinical-trials-test-immunotherapy-cervical-cancer/
Sue's Washington Post article
https://www.washingtonpost.com/national/health-science/cancer-was-killing-her-she-tried-immunotherapy/2014/11/10/0b252ae8-4fb4-11e4-babe-e91da079cb8a_story.html?utm_term=.0deb48a39453
Articles about #ovariancancer treatment vaccine trials https://medicalxpress.com/news/2017-04-world-ovarian-cancer-vaccine-trial.html and http://www.uphs.upenn.edu/obgyn/research/ovarian_clinical.htm [updated link 1/11/2019 https://www.pennmedicine.org/news/news-releases/2018/april/personalized-tumor-vaccine-shows-promise-in-pilot-trial ]
Overview from @theNCI - Immunotherapy to Treat Cancer
https://www.cancer.gov/about-cancer/treatment/types/immunotherapy
Overview from @cancerdotnet – Immunotherapy and Vaccines https://www.cancer.net/navigating-cancer-care/how-cancer-treated/immunotherapy-and-vaccines
@CancerResearch has an immunotherapy trials #ovariancancer page http://cancerresearch.org/immunotherapy/cancer-types/ovarian-cancer and #cervicalcancer page http://cancerresearch.org/immunotherapy/cancer-types/cervical-cancer
patient recruitment page for the NIH https://www.cc.nih.gov/recruit/
A survey on state of patients' Immunotherapy knowledge by @teaminspire - Infographic:
https://corp.inspire.com/resource/2017-immunotherapy-awareness-infographic/
NYTimes Article - Doctors Said Immunotherapy Would Not Cure Her Cancer. They Were Wrong.
https://www.nytimes.com/2018/02/19/health/ovarian-cancer-immunotherapy.html
How CAR-T Therapy, Known As A 'Living Drug,' May Help To Kill Forms Of Cancer ( #mmsm )
http://keranews.org/post/how-car-t-therapy-known-living-drug-may-help-kill-forms-cancer
PET Scans Could Identify Those Likely to Respond to PD-1-targeted Cancer Therapies
https://immuno-oncologynews.com/2018/03/09/pet-scans-could-identify-those-likely-to-respond-to-pd-1-targeting-immunotherapy/
Collaboration key to identification, incorporation of biomarkers for immuno-oncology
https://www.healio.com/hematology-oncology/practice-management/news/online/%7B64654536-7fa7-4d43-b57d-ae9b4d027a7f%7D/collaboration-key-to-identification-incorporation-of-biomarkers-for-immuno-oncology
"In Cancer Trials, Minorities Face Extra Hurdles" Researchers actually (falsely) believe people in minority groups have lower incomes & less education, & therefore less awareness of medical studies.
https://www.nytimes.com/2016/12/23/health/cancer-trials-immunotherapy.html?smid=tw-share
clinical trials check out this @SGO_org video
https://www.sgo.org/patients-caregivers-survivors/clinical-trials/
