Rob Update, 7/14

Hi Keep Pounding Rob team! 🙂

Happy Summer! 🙂

Rob has been making some huge strides over the past month! 🙂 🙂

As of today, Rob’s multiple myeloma is inactive, and while it still shows up in the monthly lab work, it’s a very small and immeasurable amount. It is not enough to light up the scans like it previously did last fall.

Rob’s hematologist checks his myeloma markers and other labs every four weeks, followed by a hematology visit. This is to make sure the maintenance chemotherapy Rob is on is keeping the multiple myeloma inactive.

Rob remains with a “VGPR” diagnoses—Very Good Partial Response. Better than limited or no response, and not as good as complete remission. However, as Rob’s hematologist continues to point out, there is “Very Good” in front of that diagnoses.

On his good days, Rob can walk 2-4 miles (yes, miles!), without any assistance what-so-ever!!

His appetite is improving, though taste is still off for many foods. We’ll take the improvement though and have confidence it’ll continue to improve.

It is very nerve wracking each month when it comes time to check the labs for the multiple myeloma markers. Some of the friends we have met on this journey are doing great, and sadly, one has relapsed, but continues to keep pounding! Our friend, along with all of you, inspire Rob to do the same!

Rob’s smile and wonderful (and joyfully mischievous) sense of humor is back in full force! He has the most positive attitude even on the toughest of days!!

The chemotherapy he is on does lend itself to tough days, including sleep issues, neuropathy pain, overwhelming fatigue and appetite issues. But it’s also given him good days, not to mention great monthly lab results of keeping the multiple myeloma inactive.

Speaking of chemotherapy, Rob’s doctor gave us this analogy to help explain his maintenance chemotherapy regimen:

Think of your yard and weed control. If you don’t spray for weeds, they will come back. Have you ever looked at your yard and thought “Where did those weeds come from?! They weren’t here yesterday?” Hence the importance of a weed killer or other means to take out the weeds and keep them at bay.

If you just use the weed killer once, weeds are more likely to come back. If you use it regularly, the weeds are less likely to take over your yard. If the weeds do return with the weed killer you are using, you change to a different brand or method to eliminate them.

Rob’s maintenance chemotherapy serves the same function, to keep the multiple myeloma cells that are inactive from becoming active and attacking his body like it did last fall–the same way that weeds can attack our yards at any time. The high dose chemo he had with the stem cell transplant only killed active multiple myeloma cells, not inactive cells.

Next up:

Rob has quite a few appointments, including surgical oncology, rheumatology, cardiology and palliative care. He’ll have some lung scans coming up in the fall, so that his pulmonologist and hematologist can keep an eye on that area. We are thankful beyond words that his medical team is staying on the proactive side.

He’ll continue chemotherapy with 3 weeks on, 1 week off regularly for quite a while. He’ll also have monthly infusions of IVIG (to strengthen his immune system) and Reclast infusions every 3 months (to strengthen his bones). He’ll begin a series of vaccinations, just like newborns get. When you go through a stem cell transplant, you must get revaccinated for things like measles, chicken pox, etc.

Thank you so much for helping us get this far, Keep Pounding Rob team!!

We hope everyone is having a wonderful summer!