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A Caregiver’s Perspective: Sharon Minton: Rob’s wife, caregiver and lifesaver

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“When we met Rob a few months ago, it was clear his wife Sharon played a significant role in his care and survival. Met the Mintons, hear their story and you too will recognize and applaud the efforts of an extraordinary caregiver-.”
Peggy Burkhard, nbmtLINK

In May of 2012, my then-53-year-old husband Rob Minton broke out in an itchy, red rash around his abdomen.  He went to his primary care doctor who told him that his skin was probably sensitive to our laundry detergent or the soap he was using. He sent Rob to a dermatologist and an allergist to have lots of tests done along with several skin biopsies.
Rob was told that he had dermatitis and psoriasis and was given steroids to control the condition. That seemed to help temporarily, but then the itchy, red rash would come back worse.  It spread over his entire body.  He looked as if he had a bad sunburn.  His skin started peeling off and he would swell up from head to toe. He would get infection after infection; staph infections, MRSA, and pneumonia.  We were frequent guests at local emergency rooms.

After several different doctors could not identify what was happening to my husband, we decided to go to Mayo Clinic/Jacksonville (a 2 ½-hour drive from our home) to have some further testing done.

I had been doing a lot of online research by Googling Rob’s symptoms and found a very scary diagnosis that seemed to exactly fit what was happening with my husband: an extraordinarily rare cancer called Sezary Syndrome – a type of Cutaneous T-Cell Lymphoma that affects the blood, skin, and lymphnodes.

Although it is very difficult to diagnose, the doctors at Mayo Clinic began to suspect that Rob could have this type of cancer.  After months and months of testing, he was diagnosed in early November of 2013 with Stage 4 Sezary Syndrome.  We were told that he had a 25 percent chance of living up to five years.  Our family was devastated. If it weren’t for my strong faith, I believe I would have fallen apart.

A gentleman named Neil Dicker, whose story was on a website for Cutaneous Lymphoma, sounded exactly like Rob’s.  He was diagnosed with Sezary Syndrome in 2005 and had an Allogeneic Stem Cell Transplant in 2009.   We contacted him to talk with him about his experiences.  He was tremendously helpful.  His suggestion: get onto the bone marrow recipient registry while doctors try to get Rob into a remission.  Since there is no cure for Sezary Syndrome and remissions from chemotherapy treatments had shown to be temporary, an Allogeneic Stem Cell Transplant (SCT) was Rob’s best hope for a lasting remission.  We let the doctors know that was the path we wanted to follow.

Rob was put on the bone marrow registry in January of 2014 because his only brother was not a match.  At the same time, his oncologist started him on a chemotherapy drug called Bendamustine to clear the cancer cells in his blood. He finished his chemotherapy treatment that May and was pronounced “in blood remission.”  In early July of 2014, we received a call letting us know that an 8-out-of-10 HLA match had been found.

Rob was almost ready for his stem cell transplant, but had one more treatment to get rid of any remaining cancer cells in his skin.  He had total skin electron beam radiation therapy, four days a week for eight weeks.  It caused him to lose all of his hair, but cleared his skin of any remaining cancer cells, in preparation for the transplant.

Two weeks later, we went up to the University of Florida in Gainesville (where his transplant would take place) so Rob could go through several days of extensive physical, dental and psychological exams to make sure he was able to go through the procedure.  He had been working out often during his treatments

Rob and Sharon Before Transplant

Rob and Sharon Before Transplant

to stay in the best physical shape possible.
We also had to make arrangements for where we would live after he was released from the hospital.  We couldn’t be more than 30 minutes away for emergency purposes after he was released.  We found a furnished apartment to rent located directly across the street from the hospital.  A few days later, we both moved into his hospital room on the 7th floor Bone Marrow Unit at Shands Cancer Hospital in Gainesville where we would spend the next 17 days.

On October 2, 2014, Rob was admitted to the hospital after he had a small surgery to have the Hickman (Tri-fusion catheter) placed in his chest.  This device would be the means through which he would receive all of the chemotherapies, fluids, blood transfusions, platelets, and even the new stem cells. He was hooked up to this huge IV pole that would become his constant companion until he left the hospital. Rob began his first round of the chemo and drugs that would be given over the next several days to wipe out his own immune system in preparation to accept the new donor stem cells.  Some of these drugs made him quite sick.  As awful as he felt, we would make sure that he would get up out of bed and walk his laps around the unit, IV pole in tow!  Getting exercise is necessary both physically and psychologically. He would also get up each morning and shower and get fully dressed.  We felt that was important to help him feel more like a normal day and not a sick-in-bed day.

October 7 was “day zero” – transplant day!  We had a “new birthday” party for Rob in his room, complete with presents, balloons, and a cake.  Our children, my sister, and Rob’s brother were all there to help celebrate and watch as the new donor stem cells were infused through Rob’s tri-fusion catheter. These healthy new donor cells would give Rob and our whole family a renewed life together!

The days ahead would not be easy, by any means. Rob had to be monitored very carefully. I felt so fortunate that we had such a great team of doctors and nurses at Shands Cancer Hospital Bone Marrow Unit. They watched all of his counts, blood pressure and temperature closely. He would get blood transfusions, platelets, or be taken for an x-ray at all hours of the day and night.

Rob didn’t have much of an appetite and he didn’t find the hospital food appealing at all. I would run out to the store to pick up whatever sounded good to him, just so he would eat. His diet was pretty restricted, so finding something he could eat that sounded appetizing to him was a tricky task.

Rob continued to improve and was ecstatic when the doctor said that he could be released to live in the apartment that we had secured. Seventeen days in the hospital for an allogeneic stem cell transplant is a bit shorter than the standard, but we believe that Rob’s positive attitude and daily physical activity helped a lot.

I went over to the apartment a day ahead of Rob’s arrival to completely clean it. And when I say “clean,” I mean disinfect EVERY corner by wiping down all surfaces with a bleach solution, vacuuming all of the air vents, and making sure that there was a clean filter in the air conditioner/furnace. In Florida, we have to be aware of molds and fungus. It was crucial for Rob to be in a clean environment because his new immune system was very much compromised.
On October 24, I was able to go to bed without nurses and doctors constantly coming in to check on my husband all night long. I was really glad, but, at the same time, I was nervous. I was now completely responsible for caring for him, for keeping him safe, for taking his temperature every day, for keeping him germ-free. It soon became routine, and was not as difficult as I had anticipated. We would take our daily walks to the hospital, where we still spent hours every day in the outpatient clinic of the Bone Marrow Unit. Rob had to get IV fluids and blood work regularly.

On day +46, Rob’s team of doctors gave him a weekend pass to travel the 2½-hour drive to go home! We were both so glad to be able to sleep in our own bed again, if only for a couple of nights. It was wonderful to see family, as well. My sisters, my parents, our daughter, and a couple of friends had been taking shifts, staying with our 14-year-old son so he would be able to carry on with school and everyday life while we were temporarily living in Gainesville. We were blessed to have that help so I was able to completely concentrate on Rob and his recovery.
Rob’s health continued to improve over the next weeks. We would take short day trips to interesting places around Gainesville. This really helped both of us appreciate, together, the new lease on life that we’d been granted. Rob would still get very fatigued quite easily, so I was careful not to push him to do too much. On Day +70, just over a week before Christmas, we were given the “all clear” to move home! Although we would be making weekly trips to Gainesville, we were overjoyed to be living back in our own home.

We had a celebration on January 15, because that was Day +100 since his stem cell transplant! Day 100 is a turning point in the recovery process, as that’s when the greatest risk for critical sid

Rob and sharon After Transplant

Rob and Sharon After Transplant

e effects has passed and engraftment is complete, so new blood cells are being made. Rob had fully transformed from his former blood type (O+), to the donors blood type (A+).

For the next few months we would still be making weekly trips back to Gainesville for blood work, IV fluids and sometimes platelets. I continued to make sure that Rob avoided being around crowds and especially that he stayed away from anyone with a sniffle or cough. I made sure that he didn’t do anything in the yard that involved touching the soil and that he stayed out of the sun. He’d still be on quite a few medications for a while, so I was often running out to get prescriptions refilled. He would exercise daily, whether it was a walk or a workout in the clubhouse gym (but not before wiping down the equipment with antiseptic wipes and also wearing protective gloves). Patience, perseverance, and positivity were all key factors in my husband’s recovery.

Today, Rob is 16 months post-transplant and feels very well. He still gets fatigued, which is normal, but is living life to the fullest. Thankfully, Rob never had any issues with graft versus host disease. We are grateful every day to his wonderful donor, all of his doctors and the staff at Shands Cancer Hospital and for the renewed life that God has given to Rob and our entire family.

-by Sharon Minton

Survivorship Means Victory: Evelyn’s Survival Story

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Survivorship means Victory; victory over death, pain, fear and anxiety. My life changed dramatically in May 2007 when I was diagnosed with AITL (Angioimmumoblastic T-Cell Lymphoma) which is an aggressive and recurrent type of cancer. After numerous regimens of different chemotherapy cocktails, which did not put me in remission, I had an allogeneic transplant in April 2008.,

During this arduous journey there were many highs and lows. Often, I felt like I was on a roller coaster ride with no end. Now I am approximately eight years post-transplant and I can reflect clearly on this adventure.

Evelyn during treatment

Evelyn During treatment

Surprisingly, I discovered numerous positives along this path; positives like having greater compassion for people wrestling with awful diseases and a desire to encourage these victims. Also, I learned to forgive people who didn’t understand the struggle I was facing. Prioritizing my time, energy, activities, and emotional well-being became primary for me. Small troubles were allowed to slip out of focus. Following explicit directions from my medical team and caregiver also became a priority. It was important to surround myself with positive, caring people; and, I learned to ask for help without being embarrassed. Some relationships, such as the one I have with my husband, were strengthened while others fell away.

Other positives include having a greater trust in God, my husband, who was my caregiver, and in the medical personnel who attended me. I learned to read my body signals and am comfortable with expressing my medical needs and concerns. Also, I understand the value of good nutrition and exercise. Now I have a strong sense of purpose and believe I was spared so I can help others along this same road. I recognize myself as a strong and courageous woman who can face extreme difficulties with grace.

The nbmtLINK has been a great source of information for me. I have watched several of the webcasts and participated in ongoing phone conversations about cGVHD with experts in the field. I also read the Living Now newsletters from cover to cover as soon as they appear in the mailbox. In addition, I have watched the New Normal video to learn as much as I could about my disease.

In conclusion, I am truly thankful to be a survivor and am grateful to each person who supported me along the way.

Evelyn on her motorcycle

Meet BMT Recipient Bill Meade: Making a Difference by Supporting His Peers

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Bill Meade

Bill Meade

I clearly remember lying in bed at Oregon Health and Science University Hospital (OHSU) in Portland in the fall of 2009. I had been diagnosed with acute lymphoblastic leukemia weeks earlier.

The doctor just pronounced to my wife and I, “Well, we’ve got you in total remission, now we’ll work on your transplant. It’s a full non-related bone marrow transplant, using stem cells.” He left the room and I looked at my wife and said “What the heck does that mean”?

My name is Bill Meade. I was 59 at that time and was still in somewhat of a shock that “super healthy me” had cancer. The doctors at OHSU were wonderful, gifted people but only had a limited time with each patient. I so wished that I could have spoken with someone who had actually been through all that was ahead of me.

I was unaware, at that time, such groups as the nbmtLINK existed but I vowed that when I got through this I was going to look into that possibility, and help if I could.

I am connected with three cancer organizations now, including the nbmtLINK, as well as my local hospital. I have supported twelve patients in the United States and Canada in the last four years through these groups, talking on the phone and through e-mail.

They all do a great job connecting me with patients who have a similar diagnosis and treatment options. It varies at what stage, if at all, a patient wants to speak with someone who has been through the entire process. Some patients were just diagnosed, some are still waiting for a match.

It’s a gut punch when you are diagnosed. Often, many do not wish to discuss the treatment and future with someone who has been there. However, some do. I have spoken to many and heard a lot of stories. It’s amazing how similar our thoughts, fears and concerns are.

I am fortunate to be here, in Central Oregon, enjoying each and every day with my bride of 47 years and my Goldendoodle of five years. I’m more than willing to discuss my experience.

Note: The nbmtLINK has a free Peer Support On Call program available. This program offers emotional support from trained volunteers who are bone marrow/stem cell transplant survivors, caregivers and donors.

Matt Carpinelli’s Touching Story: How the nbmtLINK Helped his Father

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Matt and family

Matt Carpinelli and family

The night of December 17, 2001, changed my life forever. That was the night that my 54 year-old father, Dave Carpinelli, was diagnosed with AML. I still can’t bring myself to write out the scary thing that stands for, so I use the acronym. My strong daddy, the guy I never saw scared, was white as a sheet. He knew what this meant even though my mom and I had no idea. He was the kind of guy that wanted to know what he was up against, so he knew the bad news of his diagnosis before it was confirmed.

We learned that there is a 5% five-year survival rate for men over 50 diagnosed with AML. It was a bad diagnosis, with only one chance at living for more than a few months. That one chance was a bone marrow transplant. We all thought that leukemia was something that kids got, not adults, and BMT’s were something for younger people.

There were a lot of misconceptions and uncertainty those first few months after diagnosis. What would the transplant be like? Would it kill him? What if he didn’t have the BMT? If it worked, what would life be like? To our surprise, these weren’t questions that our oncologists and doctors could really answer.

Matt's father

Dave Carpinelli

That’s when my dad found the nbmtLINK. The LINK gave him comfort and helped dissipate his fear of the unknown. My dad made friends from the LINK, people that told him the truth about what to expect with his transplant. More than anything, Dave Carpinelli was a straight shooter, and someone that really didn’t like B.S.

The people and resources of the LINK gave it to him straight. They weren’t fun things to look forward to but at least he knew what to expect—less fear of the unknown.

I am forever grateful for the relief that the nbmtLink gave my father in the final months of his all too short life. He was optimistic about what his life could be if he survived. He learned from the LINK that his life would be different but still good after the transplant.
Thank you to everyone who gave my sweet father that comfort while preparing for his final journey.

Amanda Schamper: Giving Back and Going Strong

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Amanda Schamper

I was 30 years old and seven weeks pregnant with my third child when I was first diagnosed with leukemia. I had no symptoms other than being slightly tired, but who isn’t a little tired with a five and three year old running around? The doctor had discovered my leukemia from the initial lab work that was done at my first O.B. doctor’s appointment. It was a miracle that it was discovered in the early stage. Because of the kind of leukemia I had, there is an oral medication that can be taken which has a 98% remission rate. Unfortunately, I couldn’t start this treatment because of the high risk of birth defects.

Instead, I gave myself daily injectable chemotherapy for four months until I was told that it had stopped working. I was getting anemic and the leukemia was spiraling out of control. My doctors had done research into the preferred medication and felt it was safe enough for me to start taking it, now that I was in my second trimester. As you can imagine, this was a difficult decision to start this treatment as I didn’t even like taking Tylenol while pregnant. My husband and I felt I wasn’t helping my son by not taking care of myself and the leukemia. He was born full-term and perfectly healthy. I like to call him my little miracle because without him, I wouldn’t have known I was very sick until it was possibly too late. He is in the first grade now and quite the friendly personality.

We had thought everything was going to be ok but four weeks after he was born the leukemia had changed forms and turned into a blast crisis. I was then told I needed a bone marrow transplant to save my life. I was devastated. What was supposed to be the happiest time of my life turned into my worst nightmare.

The doctors said that if and when I had the bone marrow transplant, I’d have to spend 100 days away from my family, friends, pets and home while I recovered, since I lived so far from the hospital. But first they needed to find me a bone marrow donor match. They tested my sister, with a simple cheek swab, to see if she was a match for me and we were disappointed to learn that she was not. I was told that only 30% of patients who need a bone marrow transplant will find a match within their family and the other 70%, like myself, must turn to the National Bone Marrow Registry to try to find a life-saving match.
I was one of the lucky ones. They found a match for me within two months. Once they got my leukemia under control, I successfully had my bone marrow transplant when my son was just six months old.

In October of 2015, I celebrated my six-year transplant anniversary, which is a huge milestone in the cancer survivorship world. I also had the incredible opportunity to meet my bone marrow donor during Delete Blood Cancer’s annual Gala in NY, four years ago. He’s a man from California, just a year younger than I am, and his reason for donating was simple. He is very close to his mother and when he learned that I was also mother of three, he knew that he had to help because he couldn’t imagine growing up without having his own mother.
It was an amazing experience to finally thank the man who saved my life. In all honesty, I wouldn’t be here today if it wasn’t for his willingness to donate. He is truly my hero and I’ll be forever grateful for not only what he has done for me, but for my entire family as well.
I now work for Delete Blood Cancer DKMS, the non-profit organization that helped save my life. I help to raise awareness and increase the national/global bone marrow registry so that other patients can have the same opportunity as I did, to have a second chance at life.

Leukemia Survivor and her Son

Our new website is up and running and I have a question for you.

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It’s time to get our blog going. We are rounding up posts and inviting patients, caregivers and health care providers to share, share and share some more. We learn from each other and therefore we can help each other. Will you consider joining us? If you would like to be a guest blogger, please contact Peggy Burkhard at (248) 770-5172 cell or (248) 358-1886, or email, peggyburkhard@nbmtlink.org.

We surely look forward to hearing from you soon!

I ask you this—what do you know now that you would love to share, as a patient, caregiver or health care professional, with someone newly diagnosed and about to start the bone marrow transplant journey? I look forward to hearing from you.  – Peggy Burkhard, Executive Director, nbmtLINK