It’s been 11 weeks since the trial started and unfortunately my CA-125 (a tumor marker) is rising AND I have a visibly enlarged lymph node in my lower neck (above clavicle). I have a PET CT this week, moved up a bit from next week. The results of that will determine what comes next.
Some possibilities are:
- A lymph node biopsy next week. This will help determine the cause of the lymph node swelling. It’s probably cancer but it could be a complication from the sepsis infection I had (though I’m told that if that were the case the swollen lymph node would probably be under my armpits and not in the neck).
- If there’s cancer in the one lymph node, and it’s an isolated “hot spot” that isn’t responding to the immunotherapy, but the rest of me is responding, it might be my first time trying radiation. It would be a relatively short course aimed at the lymph node. If that works, to control the hot spot, we’d keep going with the immunotherapy.
- If there’s progression of cancer not isolated to one hot spot but spread through many lymph nodes or other parts of my body, and if the pleural effusion is worse, MGH will petition the study sponsor to add Cemiplimab, the second drug that is part of this study (this is the drug I was originally supposed to start in late March but because of a scheduling error at MGH which put me outside of the treatment window start date, I was unable to get. Regeneron (the trial sponsor) is looking to change the trial rules to allow those of us who progress while on REGN4018 the option of adding that second drug – so we shall see what happens – but there’s a chance I still may get the second immunotherapy drug after all.
For at least the next week or two, it’s likely I will remain on the study. How long I stay on it will depend on how well I respond to whatever treatment plan addresses the swollen lymph node and rising CA-125, what the CT shows, and if and when I get Cemiplimab.
So, there are loads of questions still to be answered and a ton of uncertainty.
At this point, 2 years and nine months into my diagnosis, with two lines of chemo and two clinical trials under my belt, uncertainty is something I’m pretty used to living with. While I am concerned, worried, and thinking about what might be next, I don’t want to waste too much time day drinking, worrying, and eating my feelings because I feel pretty healthy at the moment. I’m trying not to obsess and worry because I don’t yet know what is to come. Since I’ve got way more strength and stamina and have been enjoying catching up on socializing, creative projects, and getting stuff done around the house.
My infusion days are much shorter (starting at 6:30 when I leave the house) and ending some time between 1 to 3 p.m. when I get home. I’m still anemic, but it’s moderate, not severe. The only other side effects I seem to be having from the immunotherapy are elevated lipase and analyse numbers (related to how my pancreas is functioning). However, because I have no symptoms of pancreatitis (yay), we are able to proceed with treatment. There are people on this trial who, like me, eventually have little to no symptoms and continue to have a clinical response. While I’m not one of them please know if you are considering this trial that not all people only have a clinical response while highly symptomatic even though that has been my experience.
As my naturopathic doctor said, “The water is pretty muddy right now and we’re not sure exactly what is going on.” So, I’m also back to some supplements, some off-label drugs that might have an anti-cancer effects, and I’m looking at the merits of local regional hyperthermia as well as whole body hyperthermia.
As always, I have incredible support from my friends and family as well as the medical team at MGH. I wish my responses to treatment would be longer lasting so I’d not need so much near constant treatment. However, I’m glad there are more treatments (not enough but more than in the past) for people like me who are considered platinum resistant. I sighed out loud today when my oncologist was talking about next steps because I’d hoped for a longer and better response and was feeling deflated.
I’m glad I have tools such as guided imagery, expressive writing, diving into bed with a good book, Netflix binges, and walkie talkies with loved ones and our dogs to help get through the crap days.
I’ll share more in a week or two when I know a bit more about what’s next.
You Matter Mantras
- Trauma sucks. You don't.
- Write to express not to impress.
- It's not trauma informed if it's not informed by trauma survivors.
- Breathing isn't optional.
You Are Invited Too & To:
- Heal Write Now on Facebook
- Parenting with ACEs at the ACEsConectionNetwork
- The #FacesOfPTSD campaign.
- When I'm not post-traumatically pissed or stressed I try to Twitter, Instagram & Pinterest.
You are my hero and I’m coming to your book signing!!!🙏💕💛💙
Thank you for the Murky Moment update. I am glad to find the good part–that you are feeling healthy despite the murkiness. My best wishes for you to write right through the upcoming biopsy wringing out that lymph node.
I spent yesterday evening and today, catching up on your blog and pod casts. I remember the first thing I read that knocked my socks off. It was your adoption piece. I was transported to China with you and felt the response that your daughter was having, all from the words you had written. I loved thr Father’s Day post about your father. I didn’t live that you went through it, but how you put it into words that made me feel what you were going through. You are so good at translating your thought into a written word and making people feel what you are feeling. That truly is one of the gifts of your life. This cancer piece makes me nervous. I know Jaden’s situation is different but we go through those feelings every time she has a swollen lymph node or bruise. I can’t imagine knowing that she would have to go through this the rest of her life. You have done so much with your life already, it makes the rest of us look bad lol. I have always described you as a different type of vibration- one filled with love and special gifts – writing and communication are the ones that I am so envious of. I love you even though we don’t see each other anymore and I hope you get the stable health you so deserve. Deb
I love you and am still trying to find the words to respond!
Deb:
You are a special person and one thing I appreciate about you and my sister, especially as I age, is how you both prioritize family fun and socializing. Whether it’s because I was an introvert, stretched thin as a single parent, or a pretty terrible driver, this isn’t something I did. I told my sister recently that if it wasn’t for her Kai would never see her cousins and our family would not get together near as much. You say such kind things about me but I’ve been pretty self-absorbed a good amount of my life and often just trying to juggle the things on my plate. But writing has always been something that makes me feel alive and is where I feel most like myself (as opposed to socially awkward). There is no cure for my cancer. There is just hope that a treatment will stick for a bit so I can have some time with NO EVIDENCE of DISEASE if that is possible. I haven’t given up hope that it is possible and I also am aware that for each line that fails that is less likely as I’ve been requiring more treatment just to manage/control the cancer’s spread which means, shit is getting real. But I also know I’ve lived with a disease for almost 3 years that kills 20% in the first year. I read all the time on my support groups about people who didn’t survive surgery or the first frontline chemo or who have been hospitalized so much that they have no quality of life and can’t enjoy or be there for their kids, spouses, etc. And of course, most heartbreaking to me is hearing about kids who get this disease, and young parents, which seems particularly cruel though it’s not fun for anyone. I remind myself that a full life can be lived and that isn’t dependent on the number of years we get and mine has been incredibly full and wonderful. I know I don’t see you in person much but I love you and our bond is tight and real and our time together at 3Com was special. We got to see each other all the time and that was amazing. You are a gem, a special person, and I hope Jaden never faces any more illness. She’s been through so much in her young life and deserves relief, health, and happiness. I’m sure it’s so hard to live with the fear now that you know all too well horrible things can happen for no good reason to great people of any age. I am learning things from this disease about joy stalking, seizing the day and spending time with loved ones, all things you have always been excellent at. I’ve learned deep talks and laughing our ass off are pretty much the best way to spend time (bonus when there’s yummy food around).
I love you. Thank you for your kind words, for caring, for being who you are. You are a great human. Again, I love you!
Cis