Well, I won’t mince words, I’m beyond happy to say goodbye to another personally atrocious, melanoma-filled August and hello to another September filled with hope!
- September 3, 2021 at 10:30 pm
Last August was when I was diagnosed with a very painful recurrence in my stomach, after 18 glorious months of stability and being off treatment. This August, I battled through the endless , frustrating process of trying to start a clinical trial while the mass in my stomach grew painfully during my 1.5 months of treatment washout. I’ve struggled with exhaustion, eating, stomach pain, fear, anxiety and constant discomfort. We cancelled all of our travel plans while we constantly worked through new treatment schedule “plans” and now with the surge of Delta, I fear I’ve lost the chance to meet my niece who lives across the country before she turns 1.
All that aside, on September 2 I received my first doses of the STING agent and officially kicked off my first clinical trial. I’m already dealing with some expected side effects — fever/chills, headache, a bit of heart racing, exhaustion, injection site pain and some different stomach discomfort where my stomach mass exists — but boy have I never been more excited to have side effects and not just cancer symptoms!
The first 15 days of this trial I’ll receive 4 STING injections (two at a time). Then, on the 28th day I’ll start my second round of the Ipi/Nivo combo. This combo will be a bit more spread out though — I’ll receive Nivo every 4 weeks (for 30 months) and 4 doses of Ipi every 8 weeks. I’m hoping the spread out nature of this combo will help me to not develop hepatitis like I did last time. I’m also very excited because Ipi/Nivo was extremely effective on my melanoma and I’m hoping the second round with the STING agent will deliver even more durable results.
If anyone else has or is participating in a similar study, I’d love to hear from you. No matter who you are though I’m sending you all positive vibes for effective treatment, great quality life and what we all want more than anything…treatment durability!
BubblesParticipantClinical trials are not for the faint of heart, are they Amanda??? Fingers crossed for some great results. In case others wonder, here is a pretty cool article on STING – https://www.sciencedaily.com/releases/2021/04/210408131429.htm
- September 5, 2021 at 9:11 am
Thanks so much for being a rattie!!! You will teach us all. Wishing you my very best!!!! Celeste
Thanks, Celeste! That was a good, succinct read. Some of the reading I’d done related to DTING had been a lot more complex and hard for me to follow.
- September 5, 2021 at 10:04 am
For the record, you are correct being a rattie is certainly not for the faint of heart!!!!!!!! It does give me even more appreciation for all the brave ones who came before though!
jbronickiParticipantAmanda, always in awe of your absolute amazing personality and determination. I started reading about STING last night and was having trouble too and then Celeste’s link really helped!
- September 6, 2021 at 4:12 pm
I’m keeping all appendages crossed.
I didn’t think I could have more respect for patients in clinical trials, but now working in a phase 1/2 investigational cancer department, I do! It has grown many times over. The patients are EVERYTHING to bringing these treatments to the rest and these protocols are intense to say the least.
THANK YOU. But most importantly, I’m hoping this hits the target quickly and you get great outcomes for you and your beautiful daughter and family.
- September 6, 2021 at 9:46 pm
Great news on the clinical trial. I’ll be reading up on the STING procedure to keep in my back pocket, like I’m doing with the TIL story. Hope this one turns out positive. I think the fact that you had a positive reaction to ipi+nivo in the past is a good sign.
Warren (used to be gopher38, but for some odd reason the system marked me as a spammer, so now gopher38bis)
Awww, jbronki, your posts are always the kindest! I’m very hopeful about this trial and will certainly keep everyone posted on any strange responses or side effects. We all need each other through this!
- September 8, 2021 at 1:36 pm
I hope life is treating you well and that you enjoyed the heck out of your summer!
Hello Amanda (if you’re reading this).
- September 8, 2021 at 11:45 am
Quick question. I believe you said that you are doing this trial through U of Pitt. If I remember correctly, you are living in Milwaukee (could be wrong there). If so, how is this working? Are they administering the treatment in Milwaukee somewhere and then you go to Pitt for consultations? Wondering how this works, for this and for other trials. Thanks in advance.
ed williamsParticipantWarren, Dr. Jason Luke at UPMC Hillman is doing research with Sting and is a good source of information! several other injectable type drugs are also in the pipeline of clinical trials including TLR-9 agonist, NKTR-214 a modified IL-2 drug as well as sting agonists. here are a couple of good links on the topic. https://dailynews.ascopubs.org/do/10.1200/ADN.19.190427/full/. https://www.mdpi.com/2072-6694/13/11/2695/htm
- September 8, 2021 at 12:29 pm
Hi Warren, You have an excellent memory! I’m from Milwaukee originally, but I live in Columbus, Ohio now which is only about a 3.5hr drive from Pittsburgh. Right now, everything is happening in Pittsburgh so it’s kind of a pain but they’ve been good about scheduling things all in a row to make the trips as quick as possible. It’d be much easier if I could do this in Columbus, where I live 10 minutes from the clinic, but Ohio State Medical Center isn’t running any good trials for me right now so we all thought it was best that I pursue this trial in Pittsburgh.
- September 8, 2021 at 1:41 pm
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