Tanya Temkin

Data nerd/research advocate/gardener. Major life changes since 2017 #BRCA2 #ovariancancer & #braintumor dxs. Claiming that experience but not letting it own me.

[Tanya Temkin @tanyaltee]

TIL: I really need to update my estate planning and advance directive. It’s not always a one-and-done process, but one that needs periodic revisiting and revision
#gyncsm

[Tanya Temkin @tanyaltee]

I discussed outreach strategy with my genetic counselor and a peer navigator at FORCE. I knew that, for myself, receiving a form letter about my genetic test results would have turned me off. I would prefer a more personal, one-on-one approach, so that’s what I used
#gyncsm

[GYN Cancer | #GYNCSM @gyncsm]

T5: For genetic testing, what are some considerations when it comes to sharing the results with family? Are there resources for how to reach out - and for handling their reactions and questions? #gyncsm

[Tanya Temkin @tanyaltee]

A2: I had to be very clear about my main agenda in contacting family members. It wasn’t for support or validation. I’d just tested + for BRCA2 and getting word out to fam was my overriding concern.
#gyncsm

[Tanya Temkin @tanyaltee]

I needed to re-connect with relatives I hadn’t talked to in YEARS. when I contacted them, I asked first what was going on in their own lives before approaching discussion of my cancer issues
#gyncsm

[Tanya Temkin @tanyaltee]

Living with HGSOC x 4 years. Spent a Lot of time talking w/extended fam about OvCa dx and genetic test results
#gyncsm

[Tanya Temkin @tanyaltee]

@gyncsm
Hi. @tanyaltee checking in from Berkeley, CA

[Tanya Temkin @tanyaltee]

I read up on the side effects of cisplatin and decided I didn’t want the kidney toxicity, risk of hearing loss and peripheral neuropathy. And I didn’t want a hibiscus that made me think of all that. #gyncsm #ovariancancer

[Tanya Temkin @tanyaltee]

Presenting… hibiscus cisplatinus! I came across this beauty with an unfortunate name while making two important decisions : (1) what kind of hibiscus to place in my front yard and (2) whether to switch from carboplatin to cisplatin for 3d line tx of #ovariancancer. #gyncsm

[Tanya Temkin @tanyaltee]

I have a lot of catch-up reading to do. Especially interested in any research on PARP after PARP. #gyncsm

[Tanya Temkin @tanyaltee]

I’m mostly going to be lurking too, since I’ve been on LOA from most social media/advocacy while dealing with recurrence. #gyncsm

[Tanya Temkin @tanyaltee]

Hi. Tanya here, stage 4 HGSOC survivor after a long absence from Twitter. #gyncsm

[Tanya Temkin @tanyaltee]

Your experience of mis-diagnosis and delayed treatment is all too common for people with #ovariancancer, and a major reason the vast majority of us get diagnosed at late stages. Primary care docs STILL need education to recognize its symptoms. Best wishes to you. #gyncsm

[Dr. Nadia Chaudhri @DrNadiaChaudhri]

I’ve been silent on Twitter for a long time. What I thought was stress-induced abdominal pain turned out to be metastatic ovarian cancer. I was diagnosed in June after major abdominal surgery. It’s time to share my story n/1

[Tanya Temkin @tanyaltee]

Thanks to all our moderators and other participants. A shared decision-making tool for PARPi’s is much needed. I’ve seen so many OvCa patients agonize over the decision. It’s not one anyone takes lightly

#gyncsm

[Tanya Temkin @tanyaltee]

TIL: I was reminded of how hopeful women are about PARPs and then there’s the awful disappointment of PARPi resistance
#gyncsm

[Tanya Temkin @tanyaltee]

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
#gyncsm

[Laura J Havrilesky @LHavrilesky]

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. 1/2 #gyncsm

[Tanya Temkin @tanyaltee]

T5: Big decision! Medicare women aren’t eligible for manufacturer-sponsored financial assistance. Makes things difficult
#gyncsm

[Tanya Temkin @tanyaltee]

Most OvCa women I know IRL and SM would like to try a PARP. But get scared by list of side effects or aren’t aware that manufacturers have financial assistance to help with the astronomical cost
#gyncsm

[Tanya Temkin @tanyaltee]

T3: I didn’t see any drawbacks for myself. Weighed risks/possible benefits from the published lit. Only possible problem was $$$COST$$$
#gyncsm

[Tanya Temkin @tanyaltee]

@ShereeseMayMba @womenofteal I’ll post the URL after the chat

[Tanya Temkin @tanyaltee]

T1b: I regularly post about PARPi clinical trials/ research on closed FB groups for BRCA, OvCa. And a group dedicated solely to PARPi’s

#gyncsm

[Tanya Temkin @tanyaltee]

T2: women I know IRL and via social media know that most benefit is for BRCA+’and those with somatic HRD

#gyncsm