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!

100 Days “Huge Milestone!”

“You’re at 100 days! This is a huge milestone!” Quote from Rob’s hematologist at his doctor’s appointment yesterday. 🙂

We are so excited to celebrate with all of you 100 Days!! Rob is officially 100 days post stem cell transplant!!

Rob continues to make milestones along the way, including:

1. M Spike: His M Spike ( also called M Protein) is normal, or undiscernable!

According to the Leukemia and Lymphoma Foundation, “Higher levels of M protein mean the disease is more advanced.”

2. Walking: He is regularly walking two blocks, and even did some mall walking.

3. Eating: He continues to try more solids to his Ensure diet, and is drinking more water. For any other cancer fighters following here, we learned a helpful tip. If you have a metallic taste from the chemo, put a slice or small wedge of lemon in your water. It helps the water taste more like water, and less like metal.

4. Energy: His hematologist noticed him having much more energy, and he navigated the hallways and parking deck at Levine with such ease! This used to be a huge struggle, and it was amazing to see how far he has come!

5. Restrictions: Since reaching 100 days post transplant, Rob has fewer restrictions. He’s able to drive, and doesn’t have to wear his mask as often! His hematologist said to wear it when walking by yard work, construction areas, and in crowds.

What’s Next:

Rob is going to begin Tai Chi classes at Levine to help his core strength continue to improve. He still has trouble pulling himself up from lying down. The doctor thinks this class will improve his core strength.

Chemo: Rob is continuing  maintenance chemotherapy, and is currently on the 2nd round. He schedule is three weeks on, one week off.

Labs and appointments: Labs are checked every four weeks, with a follow up appointment by the hematologist a week later (the week gives the lab results plenty of time to come back). This will be the norm for a while. Rob will continue to get the IVIG and Reclast infusions, as well as future palliative, rheumatology, cardiology and pulmnology care.

We are grateful to have such an outstanding medical team on our side! And, equally as grateful to all of you!! Thank you so very much for helping us get to 100 days post transplant!!

Please keep Rob in your prayers as he gets stronger each day and continues to Keep Pounding multiple myeloma!

Blockbuster!!!

Rob just walked ALL THE WAY around the BLOCK!! NO walker, NO cane, just Rob!!! 🙂 🙂 🙂 🙂

Thank you for helping him Keep Pounding–he just POUNDED our block!!!

Coming up, he has a pulmonologist appointment, labs, and a hematology appointment. After he gets through the last appointment next week, I’ll post an update.

Thank you so much for your prayers and support!! We could not have come this far without the Keep Pounding Rob team!!!

Friday, 5/24 Milestone Update

Hi Keep Pounding Rob team!

I have a few milestone updates to share!

Rob continues to get stronger each day!! He has walked halfway around the block- WITHOUT the cane!

Rob is slowly but surely eating more solids. The taste is still off quiet a bit, but the doctors say this is normal and will improve.

We are close to the 90 day anniversary of his stem cell transplant!!

Next week are labs and infusions for IVIG (to strengthen immune system) and Reclast (to strengthen bones), and a pulmonologist appointment.

Thank you so much for your continued support and prayers!!

Have a great Memorial Day weekend!!

VGRP Diagnosis Explained

Hi Keep Pounding Rob team!

It’s been a week since Rob we learned that Rob had a Very Good Partial Response (VGPR) to the high dose chemotherapy and stem cell transplant. 

The word “partial” threw us for a loop at first, despite the “Very Good” in front of it. I think that’s human nature. 😉

From the Myeloma Central website, a Very Good Partial Response is described as:

“One of the 5 treatment response categories developed by the International Myeloma Working Group. VGPR is a less favorable response to treatment than stringent complete response (sCR) or complete response (CR), but is better than partial response (PR) or stable disease (SD).”

Source:  MyelomaCentral.com

Rob has faint traces of Multiple Myeloma that are too small to measure.  However, these traces are not active, and not lighting up the PET scan as they did last September.   In order to keep these traces inactive, Rob has started maintenance chemotherapy.  

These faint traces of multiple myeloma is why Rob’s diagnosis is  Very Good Partial Response.  While it is not complete remission, it is the next best outcome, and we are so thankful!

Coming Up Next:

Rob has quiet a few more appointments coming up in the next few months.  Monthly labs and oncology appointments, infusions, counseling, chemotherapy, palliative care, cardiologist, pulmonologist and rheumatologist care as well.

Each of these appointments will help Rob Keep Pounding as they keep a close eye on the Multiple Myeloma, and his overall health, including ongoing low blood pressure and high heart rate issues.

Between the excellent medical care he has received over the past nine months, and the love and support of all of you, we both feel fortunate beyond measure!

Thank you for helping us Keep Pounding!! We will continue to Keep Pounding our way to a Multiple Myeloma Cure!

No Active Multiple Myeloma!

Hi Keep Pounding Rob team!!

We had a great report from the oncologist!

No Active Multiple Myeloma!

There are five stages or ratings to classify Multiple Myeloma treatment.

While he is not in complete remission, he is at the next best stage:

Very Good Partial Response

More details:

Very good partial response (VGPR) is not complete remission, but is the next best diagnosis.

There are some faint traces of inactive Multiple Myeloma, which are too small to measure. There is no active Multiple Myeloma now.

Rob will be placed on maintenance chemo to hopefully keep the inactive Multiple Myeloma in check.

We go back in three weeks for labs and four weeks for an oncologist appointment.

Keeping on top of the cancer is key. They will continue to monitor him closely for any changes. And we will continue to Keep Pounding those changes!!

Thank you, Keep Pounding Rob team!!! We could not have gotten through this past NINE months without ya’ll!

You have not only helped us keep our faith, but definitely strengthened it through the good days and the bad!!

I will update with more milestones as he continues to recover from the transplant. I will also have more detailed information about VGPR (Very Good Partial Response).

Much love and a heartfelt thank you to you all from Rob and myself!!

Milestones!!

Hi Keep Pounding Rob team!

A quick clarification:

We don’t have the results from the bone marrow biopsy and the PET scan yet.

When we do, hopefully next week, we will post an update on the blog. 🙂

Milestones!!

Rob has made huge strides over the past few days!! He continues to manage the up and down escalator with ease! He is also able to go up and down our front steps WITHOUT a cane!!

As if that wasn’t exciting enough, he can walk to the car and back without a cane as well!! He will still use it when going to the doctor next week, or to a store, but he has made great strides (literally) without it!!

On the food front, he has made great strides there as well! He is slowly adding solid foods along with the high protein Ensures!

Prayer request:

Please keep us in your prayers next week, as we learn the bone marrow biopsy and PET scan results.

If all goes well, we will be discussing maintence chemotherapy. More on this next week.

Update Reminder:

As a reminder, the blog is the best place for the most updated and accurate information. 😉

We will post updates here every step of the way as Rob continues to Keep Pounding!!

Thank you so much for being there, Keep Pounding Rob team!! We could not have made it this far without your support and prayers!