July 6, 2019 at 5:45 pm #47014
Looking through the MDS message board has me thinking that someone might be interested in our story because we have gone through a lot of what I’m reading here: MDS to AML to Transplant and back to MDS. Our trip began about 10 years ago, in 2009. Routine bloodwork showed that my husband Larry, then 60 years old and in good health had mysteriously low white blood cell counts but doctors could find no disease. He had a bone marrow biopsy in May 2010 at Moffitt Cancer Center in Florida, but he had no MDS. Doctors looked at his bloodwork, then looked at him in amazement, saying he was “a medical miracle” and to keep up the good work. We enjoyed travel and an active life.
In late January 2011, another bone marrow biopsy revealed that he did have MDS—low risk RCMD. He still amazed doctors at his routine visits to Moffitt 3-4 times a year while we continued with our lives without treatment.
Then on 2/24/16, Larry was suddenly diagnosed with Acute Myeloid Leukemia at age 67. We were shocked because his MDS had been so stable for so long. Larry had been feeling tired and out of breath for a couple of weeks. We thought it might be something with his heart, but a bone marrow biopsy confirmed our worst fears. He was out of breath because his hemoglobin was so low.
Larry almost died during the month he was at Moffitt Cancer Center getting chemo to push the AML into remission. He had VRE (Vancomycin-resistant enterococci) and Typhlitis (Neutropenic enterocolitis) infections but made it out alive. Now the race was on for a transplant. The doctors wanted to start before the AML came back, so we were scheduled for early June 2016, about 6 weeks after we’d returned home.
Those 6 weeks were scary and bittersweet. Moffitt doesn’t sugarcoat the transplant process. We were told that the success rate was about 40 percent and that we should have our affairs in order. We checked our wills, he gave me all his passwords, and we tried to enjoy each moment, knowing we might not return together.
None of Larry’s 3 siblings was a match, nor was there a good one in the registry. But Larry’s 43-year-old son could be a haploidentical transplant donor, a happy option.
Moffitt required us to live within 15 minutes of the hospital for at least 100 days, and we found a great furnished apartment nearby. We got to know several other transplant families there and that was wonderful for mutual support. Unfortunately, true to the statistics, about half of them lost their cancer battle sooner or later.
Larry went through a lower intensity conditioning for the transplant since he’d had such an awful time combatting the AML, and he tolerated the transplant well at first. About 2 weeks into it he had some kind of seizure and ended up in ICU. Finally, on Day 25 we got to “ring the bell” and move to the apartment.
We went to the clinic daily over the following months, slowly rebuilding his strength. Larry spiked a fever that wouldn’t go away. After many tests, everyone was astonished to find that he had tuberculosis! It had probably lain dormant in his system for many years till let in by a weak immune system. Our bodies tell the story of our lives.
We finally were discharged home on Day 110 and for the next 4 months, a public health nurse visited our home each morning to watch him take his TB medicine—this is a serious infectious disease! The next months were consumed with recovery and we cheered each milestone: last prednisone on Day 178. Notebook entry Day 218 “Getting more normal.”
We traveled a fair amount after that and enjoyed our bonus time together. But it all came crashing down in August 2018. Larry was hospitalized for 10 days with pneumonia, and never really got better over the ensuing months. In March 2019, Moffitt declared that he was “doing excellent!” But just 2 weeks later he was admitted to the local hospital with a fever and infection of unknown origin. In late April 2019, he got a call from his local primary care provider who was worried about a routine blood test showing lowering blood counts, especially low neutrophils.
Our local oncologist suggested another bone marrow biopsy and did one in his office on May 9, 2019: Day 1065 since the transplant. The pathology report confirmed: “… relapsed myelodysplastic syndrome (MDS), best characterized as myelodysplastic syndrome with multilineage dysplasia (MDS-MLD).”
At Moffitt, the doctor confirmed the bad news that MDS had returned. She reminded us that transplants work only 40% of the time. Most (80%) that fail do so within 2 years and the rest fail after that. We’d begun to think that we’d made it, but we were wrong. There was no longer a cure for us. It was almost exactly 3 years since our transplant.
We were told that Haploid transplants tend to have a longer recovery time and that his less intense pre-transplant conditioning might have allowed some of his bad cells to hide. Larry wasn’t a good candidate for a “donor lymphocyte infusion” of more donor cells. In older patients getting a Haploid transplant, there is a 50% chance for remission that is usually short and a 50% chance for “horrible” GVHD. They didn’t recommend another transplant, nor did we want one.
The Moffitt transplant program turned us back over to our home oncologist. They said to try Vidaza for 4 cycles and if that doesn’t help, to return to our original MDS doctor at Moffitt to explore trials.
We’re not ready to give up, and we’re glad we had that bonus time from the transplant. We tried the first 7 days of Vidaza infusion, and he tolerated it very well. Unfortunately, we watched his blood counts go down even further. When his hemoglobin went to 6.2 (and his neutrophils at .19) we got two units of blood, which helped a lot. But two days later we needed another 2 units as well as platelets.
I’m now learning from all of you on this page what might be next for us. Perhaps you will find something for yourself from our story.July 6, 2019 at 9:55 pm #47016
Thank you for bravely sharing your story. My own husband had high risk MDS which evolved into AML and the induction chemo was not sucessful, and given his deconditioned state, he was not a candidate for another round or for a clinical trial, so we brought him home where he died 18 days later – july 5, 2018.
Reading your story makes my heart joyful that you have had more days than you’d hoped together and I hope that there are more in the future than you can imagine right now. You and he both have shown such great courage and persistence in how you’ve traversed this.
My best to you both, and for the time and the love you share, now, and always.
p.s. I still come here to read about how people are doing or if there are any new developments in treatment.July 7, 2019 at 5:52 pm #47019
Thanks for your note of support Angela. I am so sorry that your husband lost his battle so quickly. The past 3+ years have been really tough, and sometimes we wonder if its been worth all the sickness and trouble. But your note reminds me that any day we’re together is a good day. This disease is so unpredictable and scary! I’m sure that your experience and insights can help others. It helped me feel less sad about what we’re going through. Take care of yourself. TeriJuly 7, 2019 at 9:18 pm #47020
Thank you so much for sharing your journey Teri. My husband, almost 63, has been on wait and watch for almost 3 years now, mainly struggling with low RBCs, tired and afib/afib flutter challenges. All other diseases, deficiencies and autoimmunes ruled out. Like your husband, his attitude and zeal for life has always remained high. He did not let it stop him, just took it a bit slower. His first and only BMB did not show MDS, just hyper-cellular with excess iron stores, blasts were a little under 3%.
In February, 2019, right before a scheduled trip to Jamaica, he started getting ill with bouts of food poisoning, throat/tonsil virus, skin infections. We left on April 3rd as planned because he said he felt fine. Prior to that he was a bit stubborn and did not bother seeing our primary for these illnesses. At that point, we only knew his RBCs were low/anemia so he thought this bad streak would pass.
Three days into our trip, he developed a skin infection and a fever of 102.5 and he felt very sick. We got a flight back home, saw his primary and he was hospitalized with influenza A, afib & afib flutter and he was neutropenic. This continued through May.
All CBCs since are now showing both low RBCs, WBC and neutrophils. Although his local hemo wants to wait for one more CBC and a second BMB before firmly giving a an MDS diagnosis, he has been accepted into the Sidney Kimmel Cancer Center at Hopkins in early August.
Your story, like so many others here, humbled me tonight. My recent fear, sadness and self pity were lifted a great deal. Truthfully, it is the first time since allowed myself to feel it so deeply. Your story is one of strength, love and determination. I can only hope and pray that wherever this takes us, we too can face it with such optimism and hope. My prayers tonight for you and your husband and every precious person here fighting this battle and their families.
God bless you and your husband Teri.
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