Nov 11,2020 Chat - PARPS and You : How Do You and Your Doctor Decide?

We were so happy to host Drs. Laura Havrilesky (@LHavrilesky), Shelby Reed (@ShelbyDReed) and Laura Fish (@laurafish4) to discuss the development of a shared-decision making tool for maintenance PARP inhibitors for women diagnosed with ovarian cancer. We had thirty-one participants join the chat. You may find the analytics here and the transcript here. Resources may be found at the bottom of the post. 

Here are some highlights from the chat.  

T1A: How have you gotten information about PARP inhibitors? Have you seen advertisements (print, TV, social media)? 

• T1A: research online, SGO conference 2019
• T1A: first heard about PARPi’s from a friend in the pharma industry who accompanied me to my first visit with Gyn Onc 
• T1: I've seen more and more mention of PARPs on cancer nonprofit twitter accounts. Seems like more and more studies are coming up and the science is moving faster. 
• I started visiting SHARE, OCRA, FORCE websites to learn more about PARPi’s. Then read the Phase III clinical trial reports 

T1B: How do social media sources (including online patient communities) play a role in your information gathering about possible treatments?

• T1B Although I am not on a PARP I see lots of support and info sharing in Facebook Groups, @smart_patients and @teaminspire
  
• T1B: Occasional use of closed patient groups to assess drug side effects or successful strategies to handle side effects

T2: Are PARP inhibitors a better fit for certain women than others? 

• T2 PARP inhibitors are FDA-approved for treatment of women with ovarian cancer in different categories, based on what is going on with the cancer right now and the woman’s or cancer’s genetic test status. The table below lists them. 1/4
• T2 - 3 big studies came out October 2019, showing that PARP inhibitors given as maintenance therapy after a response to frontline chemotherapy can give a woman with ovarian cancer 6 extra months on average until the cancer begins to grow again. 2/4 
• T2 Women with BRCA mutations OR genetic changes called HRD, can gain about a year of extra cancer-free time with a PARP inhibitor, while women not having any of these genetic changes in their tumor may gain no extra time at all or up to 3 extra months. 3 /4
• T2 Genetic testing and tumor testing can find BRCA and other mutations such as HRD to help determine the likelihood that taking a PARP inhibitor will have a positive impact. 4/4
  

 

T3: What are the pros and cons of maintenance therapy with PARP inhibitors? 

• T3 Common side effects of PARP inhibitors are fatigue, nausea, and low blood counts such as low platelets and anemia. When taking a PARP inhibitor, a woman will need to be seen frequently at first to check the lab values and adjust doses. 1/2
• T3 This image from a presentation of the PRIMA randomized trial at the 2019 ESMO conference shows the specific side effects of niraparib (green) compared to an inactive placebo (pink). 2/2

• T3: Pros for me it was very tolerable and civilized cancer care with just a pill and few side effects. Cons: Didn't work (slowed growth didn't stop or reverse). Eyepopping Costs (covered by insurance luckily.
• T3: I didn’t see any drawbacks for myself. Weighed risks/possible benefits from the published lit. Only possible problem was $$$COST$$$

T4: Is there anything you wish you had known earlier about PARP inhibitors?

• T4: When I tried Naraparib it was still pretty early on and very new for approval for maintenance for BRCA wt. I knew it was less likely to work, but still disappointing - for me it was an easy and tolerable therapy. I think there is more clarity now on best use.

T5: How do out of pocket expenses play a role in decisions you make about taking a PARP inhibitor? (and you can continue w/ tweets about anything you wish you knew about PARPs)

• T5 Even though PARP inhibitors cost over $12,000 per month, insurance companies or Medicare usually foot most or all of the bill. Some women have no out of pocket expense or a very small one. However some women have monthly co-pays of over $1,000.
• T5 Here are links to PARP patient assistance sites: olaparib / Lynparza: https://www.lynparzahcp.com/ovarian-cancer/olaparib-patient-support.html        niraparib /Zejula: https://www.zejula.com/en/financial-support                               rubraca/ rucaparib: https://www.rubraca.com/ovarian-cancer/  2/2
• T5: Big decision! Medicare women aren’t eligible for manufacturer-sponsored financial assistance. Makes things difficult
• T5: My gynonc nurses helped by submitting to the drugmaker to cover some costs. It effectively covered my OOP max on my insurance, and I was not billed for my costs. Very helpful.

T6: Are you aware of the current @ASCO guidelines about PARP inhibitor maintenance therapy?

• T6 ASCO recommends that all women with advanced stage ovarian cancer who have a good response to initial chemotherapy be offered PARP inhibitor maintenance therapy and make a shared decision with her provider.
• T6 Here is a link to the full ASCO guidelines on PARP inhibitors in ovarian cancer. https://t.co/wfU3gqhkSB
• Here is a summary of the PARPi in Management of #ovca @ASCO guideline

• I wonder how that’ll make a difference in clinical practice. My gyn Onc (and others, according to their patients) don’t see much benefit for those not BRCA+ or HRD+ and don’t like to prescribe them to those patients 
• I agree there is a very important distinction here-see the replies to T2 below for different levels benefit. Thats where the "shared decision" comes in -I agree that PARPi are not right for everyone.
• Need to think about how that changes Survivorship and how pts may best cope with idea of continuing therapy instead of feeling “done”. Reinforces how important it is to understand ovarian cancer survivorship of continuum of many on and off therapy

We are so grateful for all Drs. Laura Havrilesky, Shelby Reed and Laura Fish do for patients and we look forward to the end result of their project - a Shared Decision Making Tool for women considering PARPs as maintenance therapy.

You can continue this PARP discussion at an “Ask the Experts” session on the online patient community Smart Patients (@smart_patients) starting Thursday at 1pmET. http://smartpatients.com/ovarian-cancer .

Please join us for our next #gyncsm chat Wednesday, December 9, 2020 at 9pmET as we discuss The Needs of Young Adult Gyn Cancer patients (#ayacsm).

Happy Thanksgiving!

Stay safe and see you next month!

Dee 

RESOURCES

Efficacy | ZEJULA (niraparib) https://t.co/f9iMWl8Oce

@FacingOurRisk Maintenance Therapy for Ovarian Cancer https://www.facingourrisk.org/info/risk-management-and-treatment/by-cancer-type/fallopian-ovarian-peritoneal/maintenance-therapy

PARPs Frontline Maintenance Therapy Transforms Advanced Ovarian Cancer With PARP Inhibitors https://www.onclive.com/view/frontline-maintenance-therapy-transforms-advanced-ovarian-cancer-with-parp-inhibitors

Using PARP Inhibitors in Frontline Maintenance Therapy for Ovarian Cancer https://www.cancernetwork.com/view/using-parp-inhibitors-in-frontline-maintenance-therapy-for-ovarian-cancer

@SGO_org Practice statement: Frontline PARP inhibitor maintenance therapy in ovarian cancer: A Society of Gynecologic Oncology practice statement https://www.gynecologiconcology-online.net/article/S0090-8258(20)33747-1/fulltext