Hold on, hold strong

“Hold on, hold strong” words that are said to me now after my visits with oncologists. I tend to dissociate to those well meaning words, which are to
meant comfort me, because well it is obvious, I am holding on so hard.
More than ever now.

We’ve had another change of course; the Mayo clinical trial that I sought hard after, signed consent forms, and started to get evaluated for was taken off the table the same day because, bittersweetly, I currently do not have “measurable disease.” What does that mean, you ask?

It means all my lymph nodes have reduced below 1 cm, and my last endoscope only showed a mass that, when biopsied, only had 0.5 mm of cancer in it. So for clinical researchers, it excludes me, as they need things to be 1 cm and above to track progression or effectiveness of said pharmaceutical. So great, right? Well…

As many of us patients know and doctors as well, the stomach cannot be seen in imaging scans either so that isn’t trackable. But what is growing… are the lesions on my bones. Some twice the size from my previous imaging.
(more on this below)

So back to regular systemic chemo every two weeks, with a bit of hiccup and pausing of treatment, as my bloodwork is now getting bit wonky (mostly due to Xgeva shot I got, which has been placed on pause as well).

According to my chart, I have now been diagnosed with
• Anemia (low amount of healthy red blood cells)
• Hypo-phosphatemia (low level of phosphate)
• Hypo-calcemia (low levels of calcium).

So I am currently getting weekly infusions along with home oral supplements to raise the levels of these. Not to mention my hemoglobin is starting to trend down, which is a bit worriesome.

I know I need the bone injection to keep my bones strong, but not sure when i will be able to get another one. I am also now looking into radiation to the bones to see if I can start to stave off some of the pain I am starting to feel.

Those close to me know, that HUGE part of my personality is to go down the research rabbit hole, but these 3 additional issues have me in mental paradox. It is known that the higher the calcium in the body, then the lower the phosphorus, also if you take iron with phosphate, it cancels out the phosphate.

I don’t have a medical degree, but the conundrum of these has me twisted (and yes I will ask my oncologist about these concerns). I have literally been given Iron infusions then immediately after, phosphate and calciums infusions. 🤷🏻‍♀️

In the meantime to distract myself from these issues above, I decided to take upon creating the only support group on Facebook for Claudin 18.2 positive patients. Now that the FDA has approved of the 1st targeted therapy for Claudin expressing patients, with the med Zolbetuximab (Vyloy). It been very fulfilling to provide a private space for patients to come together and share their experience as we walk hand in hand, into this new territory.

This new targeted therapy hopefully, will be added to my treatment around the 2nd week of Dec. This is something am proceeding with caution as the results is meant to just extend our time a bit further than conventional treatment for 1st line patients and the side effects can be intense. But this is just a small beginning into researchers really delving into the Claudin 18.2 protein with new and upcoming trials.

If you are a patient with Claudin expression and is interested in joining,
here is the link: Claudin 18.2 Support Group for Patients and Caretakers

Other than my usual gallery of photos, I rather share two videos that were created for November Stomach Cancer Awareness Month by the wonderful non-profit Hope for Stomach Cancer.

As always, thank you for reading, and following along on this journey, one that I really hope many of you will never have to face.

PART ONE – my family history with cancer Shot 9/9/24

PART TWO – my symptoms, and treatment so far. Shot 9/9/24