Great Day at the IMF Regional Community Workshop in Charlotte, NC

Saturday, June 6, 2015 was a great day in Charlotte, NC for the International Myeloma Foundation's Regional Community Workshop, titled "Living Successfully with Multiple Myeloma". The featured speakers were ones we had never heard before, and we were very impressed:  Dr. Saad Usmani (Dr. Barlogie was his mentor), Director of Plasma Cell Disorders and Clinical Research in Hematologic Malignancies at the Levine Cancer Center/Carolinas Healthcare System, in Charlotte NC, and Dr. Craig Cole, Assistant Professor of Hematology and Oncology at University of Michigan, Ann Arbor. Charise Gleason, MSN, NP-BC from Emory University Winship Cancer Center, Atlanta, GA also spoke to us on Supportive Care. These doctors are brilliant, and full of hope and energy in regard to the battle against Multiple Myeloma and the exciting advances in science and research! Their work is groundbreaking, and we were privileged to sit under their teaching for the day. The Westin also fed us very well, which never hurts when you are sitting for so long trying to understand very difficult terminology, some of which is familiar and much of which is not.

Unfortunately there were no handouts, so we were writing furiously as they spoke, trying to capture screen shots of charts, graphs and other key bits of information. (I still understand very little of the science associated with MM cells and treatment, so I apologize for keeping it simple, and not sharing more. There are plenty of sites like IMF, MMRF, LLS, Myeloma Beacon, and others, that have comprehensive information for you!) With so much outdated information circulating on the internet, it was encouraging to hear about accurate, up-to-date findings, with promising data from clinical trials, especially Antibody Targeting of Multiple Myeloma (Antibody based therapy) in relapsed or refractory myeloma. Myeloma cells have surface proteins, antibodies attach to surface proteins, multiple natural processes attack the MM cells identified by the antibody! Clinical trials of the following immunotherapy combinations are showing wonderful response rates, fewer side effects (no neuropathy), and increased time until relapse, so we are excited about these trials and combinations and look forward to FDA approval:

Daratumumab + Rev/dex
Elotuzumab + Rev/dex
SAR + Rev/dex

Here was lunch. I told you they fed us well :-)

Below are a few excerpts from my notes that were important to us (I apologize in advance for any inaccuracies):

Dr. Cole stated: "Multiple Myeloma represents 1% of all cancers, 10% of blood cancers, and it is not inherited. The cause remains unknown, though data showing exposure to ionizing radiation, diesel/engine fuel, and pesticides is convincing. The incidence statistics show 3 per 100,000 are Asian, 5 per 100,000 are Caucasian, and 12 per 100,000 are African American.

An essential feature of MM cancer progression is the variability within cancer cells called 'intra-clonal heterogeneity' (ICH). There are 3-6 sub-populations of cells that have different characteristics and aggressiveness. The most aggressive take over...survival of the fittest. 82% of patients have multiple gene definitions; different biological characteristics and treatment reactions. Relapsed MM is so hard to treat because you are dealing with so many different sub-clones! BUT, people ARE getting better, and clinical trials are becoming the standard of care...then, CURE! Great changes are coming quickly with the goal of gaining maximum effectiveness from treatment, with little side effects. Question your doctor, demand more, and take an active role in your treatment decisions. "

Dr. Usmani stated:  "In regard to Myeloma options at diagnosis, MM is not one disease, so one size does not fit all. Individualized therapy by a myeloma expert is critical. Don't ever be afraid to ask for a second opinion. Patients and doctors are a partnership, and must be able to work together as a team. Good and standard risk patients make up 80%, benefiting from novel agents and high dose melphalan/stem cell rescue. 20% are high risk. My goal is to change MM to a chronic illness for the majority, and probably curative for a subset. 85,000 are living with MM in 2015. Your prognosis factors include: 1) tumor burden, 2) tumor biology and 3) patient related factors. Deeper responses to treatment improve overall disease free time. "

Maintenance Strategies (Dr. Usmani) - Revlimid (10mg) and Velcade (sub-subcutaneously) are the two drugs he primarily uses. Revlimid maintenance after ASCT does produce improved overall survival. You get better mileage from Revlimid if you are on maintenance, and don't just use it at relapse. However, it is unclear whether ALL will benefit from maintenance...doctors must tailor the treatment choices. He also mentioned: 1) Ixazomib and Oprozomib 2) Pomalidomide, and 3) Monoclonal antibodies (Elotuzumab, Daratumumab and SAR 65084).

General practitioners need to be taught two screening mechanisms for MM detection in patients over 50: SPEP (serum protein electrophoresis) and FLCS (free light chain survey). Earlier detection is critical. MRIs and PET/CT scans are a much better picture of the bones than skeletal surveys as, according to him, they don't show lesions until 70% progressed (this was shocking news!).

So there you go...our day in a nutshell! It has been forever since I blogged, but wanted you all to know that EZ is well, and continues to be in CR (5th birthday coming up August 25, 2015!). Blessings to all of you! Sure would love to hear from our blog friends. This is us at our son's wedding reception December 20th...dancing the night away!

Happy New Year 2015

I hardly know where to begin, so why not wish everyone a Happy New Year! Right off the bat I'd like to set your minds at ease and say that Big EZ continues to be in complete remission with no detectable M-spike and all other numbers stable. When we haven't heard from fellow bloggers in quite a while, we worry that something is wrong, and often it is. For us, life is just full and busy, so for the most part, a quick Intagram post is about all I can muster! We are extremely grateful that five years post diagnosis, EZ has not relapsed and his numbers continue to look good. 

And now for a quick review of 2014 and four very exciting events in the life of our family: 

1. Our son, Nick, got engaged to the beautiful Anne Davis in March. When EZ was diagnosed in January of 2010, he wondered if he'd live long enough to meet the girl Nick would one day marry. Our prayers were surely answered and we love Anne so much!

 2. In celebration of my 60th birthday, EZ and I took an amazing trip to the Grand Canyon, Hoover Dam, Zion National Park and Las Vegas in April.

 3. We welcomed a new grandson, Will, in May. Big sister, Emery, was beyond excited, and so were we!

Guenthers Christmas 2014

That makes six beautiful grandchildren for us!

 Dews Christmas 2014

4. Nick and Anne got married in Chapel Hill, NC on December 20, 2014!

 The wedding party with EZ serving as Nick's best man. It was such an honor for EZ to stand beside his son on this very special day!

Our five oldest grandchildren all participated in the wedding. Were they ever adorable!

Gigi looks beautiful surrounded by 5 of her great grandchildren!

Beautiful engagement and wedding photos by Robyn Van Dyke Photography

 All Bakers have now married in the month of December, with Nick and Anne marrying on our 39th anniversary! Here we all are at the wedding: Nick and Anne, day one, Leah and Kyle 8 years, Tara and Jamie 14 years, and Ernie and I, 39 years! What a cause for celebration!

 There was so much more to celebrate in 2014, but these are definitely some of the highlights. May you all have a healthy and happy 2015, and hopefully you will hear from us more often! We care very much for those of you who stop by our blog, and would love to hear from you! For now, let's all try to remember these wise words in the new year:

Four Years Ago Today

When you are diagnosed/living with any form of cancer, you can lose hope, forget how to laugh, and immerse yourself in a world where numbers suddenly become the most important thing to you. EZ has always been a "numbers person", but I have always struggled with numbers...I am a people person. You are soon forced to discover a lot of new terminology that you never dreamed you would become proficient with, and you can hardly concentrate on anything but the disease.

Four years ago today we had our first meeting with Oncologist Dr. Alan Kritz, from Cancer Centers of North Carolina. Having the results of EZ's MRI (1/4/10) and sacral biopsy (1/14/10) in hand, Dr. Kritz did a bone marrow biopsy and extensive bloodwork, ordered a 24 hour urinalysis and long bone x-rays (bone survey).   The Bone Marrow Biopsy Report and labwork from 1/20/10 revealed the following: 

•     M-spike 2, WBC - 7.0, Hemoglobin- 12.0, Platelets - 200 K

•     20-30% plasma cells, monoclonal IgA kappa plasma cell population

•   Cytogenic studies revealed trisomy 3, but negative for both a deletion of RB1 on chromosome 13 and a deletion of TP35 on chromosome 17. 

  A Bone Survey from 1/22/10 showed the following:

• Multiple punched-out lesions involving the skull, bilateral humeri and left femur 

I often look back to my notes from 1/5/10 when we met with our orthopedic doctor to get the results of the MRI. I didn't even know how to spell "myeloma", let alone understand what he was telling us about the suspicion that this mass of abnormal cells (plasmacytoma) on EZ's sacrum most likely indicated some form of blood cancer. Complete shock!

 We were indeed facing Multiple Myeloma, and treatment proceeded in earnest. Radiation to EZ's sacrum began on 1/26/10, a port was surgically implanted on 2/4/10, and chemotherapy and bone strengthener infusions began on 2/5/10. All the while we were trying to educate ourselves about what we were facing and what the prognosis might look like. As many of you know, much of the literature can be outdated and grim, but many new advances are taking place in the world of Multiple Myeloma, and though not curable, it is highly treatable. Wow, how we clung to those words...highly treatable. Our plan was to beat this aggressive blood cancer into remission, and move on to stem cell transplant, and maintenance therapy. Though not without its share of hardships, we accomplished our mission and EZ has remained on maintenance therapy (Revlimid 10mg) for over 3 years now. Under the care of Dr. Kritz, and Dr. Cristina Gasparetto at Duke, he has achieved wonderful results and we are so very grateful. We, of course, are praying that remission continues for a long time to come, though we are not ignorant of the fact that relapse is a very real possibility.

I want to encourage those of you who may have also received very unexpected news at one time or another, that all hope should not be lost. Dig your heels in, educate yourself with up-to-date information about what you are facing, choose your doctors wisely, don't be afraid to seek second opinions, ask questions, surround yourself with family and supportive friends who will "come along side" you in your battle, and never underestimate the power of prayer! All that we have been through has served to strengthen our marriage, deepen our faith, and enlighten us as to the beauty of each day, never taking life for granted. 

We have many fond memories of the past 4 years. We have had 3 grandchildren born (with another on the way) since EZ's diagnosis. We have traveled to Disney World, the Keys, Seattle, Alaska and soon, The Grand Canyon and Hoover Dam. We have moved to a new home where life is more manageable (and yard maintenance is provided!). We have met some incredible people, in person and online, who are also battling MM or caring for a loved one with MM, and our lives are richer because of them. We have been humbled by the generosity of many, some of whom we have never met. We have learned to accept help. We have laughed. Most of all, we are even more convinced of how much we are loved by God, who in His faithfulness, has sustained us. 

We look forward to 2014 with hope and excitement, as there will be a new baby boy to meet, and new travel adventures to enjoy with one another. Live life, remain hopeful, and stay positive.

 

Three Years Post Transplant Appointments...All is Well!

It has been a busy couple of weeks with doctors appointments, but it makes it all worthwhile when the news is good! Both our local oncologist and the team at Duke continue to be pleased with EZ's stability, numbers and undetected M-spike. For now, he continues with visits every other month to the Cancer Centers of North Carolina to see Dr. Alan Kritz, and the Duke ABMT Clinic to see Dr. Cristina Gasparetto (only once a year now). They both agreed he should stay on 10 mg Revlimid as maintenance.

Why not take a little snooze while you wait?

Here is the happy patient with Dr. Gasparetto (sorry it's blurry!). She is such a wonderful, caring oncologist and spent real quality time with us:

After EZ's appointment we took a victory lap down and around the clinic hallways. How well we remember being in the position of so many we saw that day... no hair, feeling so weak and sick, sleeping, receiving stem cells, or harvesting stem cells all hooked up to that amazing aphresis machine! (For a look back on our journey, you can click on the "Stem Cell Transplant" label.) I was deeply touched by a nurse hugging and comforting a wife/caregiver who was in tears in the hallway, out of her husband's sight. We saw them walk into the clinic, and he was so weak that a staff member followed along behind him with a wheelchair fearing his strength would give out. It brought back memories of a day I felt exactly like her...scared to death! Hopefully EZ can give others hope that they too will be taking a victory lap one day. They certainly are in good hands at Duke!

Below is a look back on what I wrote the day EZ's stem cells were harvested for transplant on August 17th of 2010:

What a day of celebration this is for us as we look back on all the steps it took to get us here...23 chemotherapy treatments, 22 radiation treatments, 8 months of doctor's visits, 31 days hospitalized at Rex, 26 days unable to get out of bed, 5 months of walking with crutches or a walker, surgery to have a port put in, surgery to have the port taken out and a Hickman catheter put in, echo-cardiogram, EKG, chest x-rays, 3 bone marrow biopsies, a failed intrathecal pain pump, 2 great physical therapists, brilliant oncologists, long bone x-rays, MRIs, CTscans, and Neupogen injections. But most of all, we are here because of the power of your prayers and a mighty God who loves us and has a perfect plan for us, all in His perfect timing! Here is Ernie with his stem cell harvest after 6 hours of aphresis.

We always have to take a picture of EZ beside his pic on the Hall of Fame in the Transplant Clinic. It is encouraging to see so many survivors on that wall!!

So very thankful that, for now, all is well.

Three Years Post Stem Cell Transplant - Happy Birthday EZ!

August 25, 2010 is a day we will never ever forget. This is the day EZ got a new lease on life with his stem cell transplant at Duke.  We will forever celebrate each year we are given, and never forget the difficulties EZ faced, and overcame, to get here. Click the titles on his One Year Celebration and his Two Year Celebration for a look back.

We had a wonderful, fast paced celebration with the Dew Crew yesterday after church and before Awana. EZ planned the menu of French Dip sandwiches, kettle cooked chips and pretzels, and cookies & cream ice cream pie with Oreo crust. (For all the food critics out there, I KNOW this isn't the healthiest menu...it was his birthday, so we indulged! Back to leafy greens, veggies, fruit, lean meats, and much less sugar tomorrow:-)

This year we have been heavily involved with downsizing and moving to a new home that requires much less maintenance on our part. We sold our house of nine years, and moved to our new home on August 9th, which is the reason I have been absent from the blogging world. Now that we are somewhat settled, I hope to do alot of catching up. 

Once again we have so much to be grateful for. Here are just a few things that come to mind:

1. No hospitalizations or major illnesses this year.
2. EZ can sit for longer periods of time and we have enjoyed dinners out.
3. EZ flew for the first time! Six hours from Charlotte to Seattle, first class, no problems.
4. We were able to take a cruise to Alaska, courtesy of my sweet mom. Amazing!
5. EZ almost single handedly packed up our entire basement, making multiple trips with his trailer to
    a storage unit to unpack. His physical stamina and ability to build and work on projects has
    greatly improved.
6. He remains on 10 mg Revlimid daily, and continues to be in complete response with no detectable
    M-spike.

When you live with an incurable cancer, you never know when the tables will turn, so for now, we celebrate special 'anniversaries' such as this, with much joy. Sleep remains elusive, peripheral neuropathy wreaks havoc in his legs and feet, he lives with pain every day, and fatigue hits pretty hard sometimes, but he copes, never complains, and carries on.

(Can you tell Samuel wasn't too happy about this picture?)

We don't ever want to take this day for granted and thoroughly enjoyed planning and celebrating! We are grateful to be in our new home, creating new memories, and remembering God's goodness to us.

(Our daughter, Leah, created this housewarming sign for us!)

Thank you so much for stopping by to rejoice with us!

 

Woah, Long Time No Blogging!

I really can't believe it's been three months since I blogged. As our routine became more "normal" and issues related to Multiple Myeloma became more mundane (and that's a good thing!), the busyness of life just took over. So much has gone on these past three months it's hard to know where to begin!

We had a wonderful Easter celebration with the whole family able to join us at home. We even had a special guest...Nick's girlfriend, Anne. We were all smitten, and very thankful she could join us for church and Easter dinner. Anne has just completed her second year of dental school, and the two of them really compliment one another. We have enjoyed having her at many more gatherings since Easter and already feel like she is part of the family! (She was a brunette with straight hair when we met her, but has gone back to her natural color and curls. All of our curly haired granddaughters are thrilled!)

(Lovely dishdrain,..hostess fail!)

 EZ had his 6 month check-up at Duke (4-4-13) and all is great. No M-spike detected, continue on 10 mg. Revlimid daily, and come back in 6 months. We were thrilled! This August will be three years post transplant. We continue to have confidence in the oncologists that are determining EZ's plan of treatment, and pray that this complete response hangs around a long time. We also attended two seminar/dinners put on by the ABMT Clinic at Duke (in April and June), and were able to hear from them about all the latest research and clinical trials. It is always a blessing to re-connect with other survivors, new and old, and see them doing so well!

Our son Nick was presented with his "white coat" during a special ceremony at the UNC School of Dentistry (4-5-13). This signifies his official entry into patient care at the clinic, and it was quite impressive. We are so proud of all the hard work he has put in studying this first year in order to reach this point. He will be leaving on July 16th for a month in Nepal, to participate in a humanitarian project with four other students and a faculty member. They will hold dental camps providing much needed dental care such as extractions, fillings, cleanings, and sealants. They will then travel on foot in the Annapurna Ranges, providing oral hygience education and supplies to villages along the route. This is an amazing opportunity for Nick and we can't wait to see pictures and hear about his experience.

We celebrated EZ's Dad's 90th birthday (4-11-13) with a visit to the mountains. His father continues to amaze us with how active he is mentally and physically. He loves nothing more than riding tractors, four wheelers, and bulldozers in the woods. We just recently celebrated EZ's Mom's 89th birthday (6-18-13) and feel so blessed to have both of them in our lives, married 67 years!

 On 4-25 we headed for Jacksonville, FL for the wedding of a longtime friend's son. We thoroughly enjoyed our time there, seeing friends from our years spent in south Florida. It was a beautiful rehearsal dinner, wedding and reception and we are thrilled for Daniel and Rebecca!

 

The biggest news for April involved all the preparations to list our house for sale. It is sold, and we are officially closing in a month, both on our current home and a new home...yikes! More on all that coming soon, but for now I've got to start packing!