Multiple Myeloma Teams for Cures Walk/Run 5k!

Hi Keep Pounding Rob team!!

A quick update, and then on to some EXCITING news!!!

Rob had a great monthly report from Levine today! His cancer remains inactive. He will have a lung scan next week, as a proactive approach to keep an eye on an area there. He’s continuing monthly IVIG infusions, labs, palliative care and oncology appointments.

Thank you for your continued thoughts and prayers!!

EXCITING NEWS!!!

What: Multiple Myeloma Research Foundation Team for Cures 5K Walk/Run

When: Saturday, October 26th, 2019

Where: Clanton Park 1520 Clanton Rd. Charlotte, NC 28208 

Keep Pounding Rob Walk Page: https://walkrun.themmrf.org/Charlotte/KeepPoundingRob

On October 26th, 2019, Rob and I are participating in a walk to raise funds for the Multiple Myeloma Research Foundation. (MMRF).

A brief explanation directly from the MMRF website of how amazing this organization is in the fight for a cure:

“The mission of the MMRF is to relentlessly pursue innovative means that accelerate the development of next-generation multiple myeloma treatments to extend the lives of patients and lead to a cure. Nearly 90% of total budget goes directly to research and related programming. The MMRF has been awarded Charity Navigator’s coveted four star rating for 12 consecutive years, the highest designation for outstanding fiscal responsibility and exceptional efficiency. The MMRF has facilitated unprecedented accomplishments including helping to bring ten new drugs to market that are now standard therapies for patients with multiple myeloma and being used or explored as treatments for other cancers.”

We are excited to join other multiple myeloma fighters on October 26th!! If you’d like to participate in the walk with us, either in person or as a “virtual” walker, please visit Rob’s Keep Pounding walk page here:

https://walkrun.themmrf.org/Charlotte/KeepPoundingRob

All donations go directly to the Multiple Myeloma Research Foundation.

Thank you, Keep Pounding Rob team!!! We never dreamed Rob would be preparing to walk a 5K, and appreciate your thoughts and prayers that helped him get to this point!!

A picture’s worth a thousand words!

Hi Keep Pounding Rob team!

Before I explain the pictures, Rob’s monthly cancer labs look good! The multiple myeloma remains inactive at this time. We are so thankful! Chemo continues with three weeks on, one week off.

He had excellent reports from his cardiologist and rheumatologist, and will follow up in six months. 

We are monitoring blood pressure regularly, and we have found a good balance with one medicine helping lower the high heart rate while another is helping raise the low blood pressure (due to chemo and stem cell transplant).

Now to the pictures: The pictures above are incredibly significant and we wanted to share. The picture of Rob on the stairs (which he had no idea I took), says so much about his recovery. 

This is the first set of steep steps (other than the ones leading to our back yard) that he has mastered. While going up and down steps is still tricky, he now can attempt-and succeed –at walking up and down stairs in public.  We have always said slow and steady wins the race-and now the staircase!  😉

The second picture was taken recently with our dog, Dexter. This is significant as a year ago, Rob was throwing the tennis ball for Dexter. That’s when he first felt pain in his shoulder, and he thought he had injured it throwing the ball. 

When he became unable to lift his arm, we knew something more was going on. Granted, we had no idea it was cancer, as that was the furthest thing on our mind.  Looking back at a year ago, we would have never imagined that Rob would have been diagnosed with cancer, have 8 cancerous tumors, undergo chemo (including high dose), a stem cell transplant, and continuing chemo today.  After the diagnosis, we never thought that less than a year later, the multiple myeloma would be inactive and under control.  We also would have never imagined the support, love and kindness shown to us by our amazing Keep Pounding Rob team!!

Thanks to his amazing medical teams and all of you, we can enjoy and embrace these pictures of everyday life on a whole new level!! A picture really is worth a thousand words!!

Up Next: 

Rob continues chemotherapy, and can venture out more, with caution (having hand sanitizer and masks nearby, and avoiding anyone is who is knowingly sick). He’ll get re-vaccinated this month. Anyone who goes through multiple myeloma, chemotherapy and a stem cell transplant losses significant portions of his or her immune system, including the protection provided by all vaccinations received as a newborn.  The other vaccinations occur 1 and 1 ½ years after transplant.

Lung scans will occur in the fall, to keep a proactive eye on an area there. 

We’ll continue to provide updates here, along with some information about resources that LCI offers cancer patients and families. 

Good luck to everyone preparing for (or already at) school and college!

Thank you for helping us Keep Pounding!!

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!!