It’s a “woohoo” kind of day!!

I was waiting to post because yesterday I got the news that my neutrophils had tanked again (to their lowest point yet) and so yesterday afternoon I rushed in for another injection. (Hi Kathryn, this is City of Hope, can you be here in an hour? Why yes, yes I can.) I’m grateful they can move so fast! For the most part the injections are not that big of a deal so far, but I did have a pretty fair headache this morning and so re-arranged my work schedule a bit to support that. 2 Tylenol put me right in an hour or so, so it wasn’t that big of a deal. (The Claritin also still seems to work for the bone pain side effect which I haven’t had!)

The reason for the “woohoo” is because I had my every 3 week appointment with my oncologist today. There are some endocrine issues (it appears I have characteristics of an over-active thyroid right now) we’ll have to work and my neutrophils are a bit low. I will see an endocrinologist about the thyroid. For the neutrophils she’s going to dial back the carboplatin dosage some more to see if we can eliminate the need for the injections by less impacting my neutrophils. I did ask if there was concern about lower dosages and she said that there is no evidence that dialing it back will adversely impact my prognosis.

The itchy/messy rash on my scalp has spread to my back. It’s still a grade 1 rash so she isn’t terribly concerned but told me I could spot use hydrocortisone sparingly if I was bothered by it. The rash is caused by the Keytruda (pembrolizumab). She doesn’t want to give me any steroids to treat it if she can avoid it because of the good news. I am fully on board with this because….

The good news is that my oncologist said that “the medications are working like gangbusters”. When she did the physical exam today she had trouble finding the tumor (and it’s not small…). She had me check (because I didn’t take the time before the appointment to check this week) and I had trouble finding it too. Now, if I raise my arm, we can both still find it pretty easily, but it definitely feels WAY different from what it did 7 weeks ago. This is phenomenal. Very much a “woohoo” moment! Mike was there with me today and we were SO excited. I figure if your oncologist uses the word “gangbusters” in a good way that is a very good thing.

So back to the hydrocortisone. One of the ways we could help the rash is with more steroids. I get an injection of steroids each week with all the pre-meds I get prior to the chemotherapy and/or immunotherapy. However, it seems that additional steroids might reduce the effectiveness of the Keytruda. Which I definitely don’t want if we can avoid it as the Keytruda is part of the wonderful news and I want all of these medications to keep doing their thing just like they are! So, I’m going to hang out with this rash a bit and hope it doesn’t get worse and just treat the biggest spots sparingly.

The other good news is that they drew the blood to check the injection impact at City of Hope today and I got the results about an hour ago…looks like my neutrophils are up enough for treatment, which is more fabulous news!

Tomorrow is a 3 drug treatment so it will likely be a bit of a rough weekend and Monday, but it’s the 3rd of 4 of these particular treatments so it feels really good to be 1/2 way through the first 12ish weeks. (There is follow-on…but I don’t have those exact details yet officially…although I think I know based on Google and a friend’s recent experience with this diagnosis.)

Overall an incredible day, I am SO SO grateful for this news. It’s just wonderful!

Thank you to all of you for sharing in this journey with us and for all of your support. I know your prayers and support are a key part of this healing! Onward!

The now “standard” note at the end of posts for website navigation help:

Thank you for taking time to keep up with us and see how we’re doing as well as all the help!  Because, I think like me, much of the world does nearly everything on their phones…I’m adding this note to the end of posts to make website navigation easier if you are on a phone.  If you’d like to read other journal entries, please click here (oldest post is at the bottom of the page).  There’s also a “hamburger” menu in the top right of the webpage that can help you navigate between the journal, ways to help page, stay in touch, and welcome pages.   Please know that reading this page and thinking of us is help!   Thank you for your support in all forms!