When Todd was first diagnosed, this was the hematologist who he went to first. As I stated in his diagnosis blog, we lost confidence in him when he started prescribing iron infusions (administered via IV) when Todd's iron wasn't low. Although some MDS (Myelodysplatic Syndrome) patients suffer from low iron, Todd did not.
Between the unnecessary treatment and lack of vigilance (he wanted us to come back in 6 months), we opted to get a second opinion at The Cleveland Clinic. When we called for an initial consultation, The Cleveland Clinic offered to get us an appointment the next day! We went to Todd's first appointment in November, 2011.
The doctor assigned to Todd's care at The Cleveland Clinic was both a PhD. and a M.D. He was on the staff there and at University Hospital in Cleveland.
Later, once his MDS began to progress, we were referred to a bone marrow transplant doctor and the whole transplant team. We were assigned a nurse and a transplant coordinator. Everyone was extremely nice, caring, and thorough. Even the nursing staff! We did all the bone marrow type matching and found that one of his brothers was a perfect match. They followed Todd closely every three-five months, repeating bone marrow biopsies, blood work, and exams.
Once treatment became necessary, we wanted to get the out-patient chemotherapy locally since we would need to go every day for 5 days and then 2 days the next week. The Cleveland Clinic is about 3 1/2 hours from Dayton. So, we told our Transplant doctor that we had used a local oncologist upon initial diagnosis. We didn't think he was that bad, that we couldn't use him just to administer treatment.
Our transplant doctor was efficient and professional and called the local oncologist personally to arrange the treatment. The local oncologist's office did call us, but they wanted Todd to come in for an office visit first, which we didn't feel was necessary. They set up an appointment for the Thursday before treatment was to begin. Todd called back and asked if he could just do the office visit and treatment the same day.We got the idea that the doctor wanted to collect the fee for an office visit, so Todd said to charge us for both, but to please do it on the same day.
We showed up for the office visit and treatment on Monday, April 28, 2014. The doctor was immediately agitated. Todd was not happy about being there or about the treatment.
He examined Todd, asked about his symptoms and asked, "So why are they recommending the bone marrow transplant? I don't understand why?" Todd said he didn't understand either but I said because there were signs of progression including increased blasts and chromosomal abnormalities, including 4 deletions, with one being on #7, which is an indicator of developing AML (Acute Myeloid Leukemia).
His answer was, "So?" I was furious. What did he mean, "So" as in "So what?" Then he proceeded to give us his opinion, which we weren't there for. He wasn't Todd's treating physician!
He said something like, why only one treatment on Vidaza? That wouldn't do anything. He would give 4 or 5 rounds of Vidaza and that this COULD put Todd in remission for a few more years when a new treatment MIGHT be developed by then! I wasn't ready to listen to his hypothetical maybes and mights. Meanwhile, Todd's disease could still progress to AML and maybe a new treatment still wouldn't be available by then.
I said that it was my understanding that cytogenetic abnormalities affected the prognosis negatively. He just nodded his head and continued to disagree with the one treatment regimen. I said, that Todd's transplant doctor admitted that the use and recommendation for treatment regimens for Vidaza was controversial, but as a transplant doctor she was on top of the finer points of treatment.
He said, of course no hematologist is ever going to agree with a "transplanter."
He was angry that Todd didn't come to an office visit last week throwing around words like the appointment was cancelled or there was a "no show" or something. Todd said that he wanted to do the office visit and begin the treatment the same day. The doctor answered in anger, that there had to be insurance approval first. Todd said everything should already be approved. I too said I had just spoke with the transplant doctor and she assured me that she had talked to him and that everything should be ready to go.
He then denied speaking with Todd's doctor personally. He made some excuse that her people talked his people, but he wasn't involved. So, he refused to start the chemotherapy that day. We asked if we could at least do the two days this week, and he said he said no they only start treatments on Mondays around there.
He then denied speaking with Todd's doctor personally. He made some excuse that her people talked his people, but he wasn't involved. So, he refused to start the chemotherapy that day. We asked if we could at least do the two days this week, and he said he said no they only start treatments on Mondays around there.
He left the room to arrange for Todd's blood work and I was so angry I burst out into tears! He was mad because Todd didn't come to the appointment that prior Thursday and so he refused to begin treatment that week! It was like he was getting back at us or punishing Todd.
After crying in my car for a while, I called Todd's transplant doctor in Cleveland and left a message to talk to her about what was going on. She called me back a few hours later. I told her that I just needed to confirm what I though I had understood: that Todd's cytogenetic abnormalities put him in a higher risk category, that one round of Vidaza was scheduled for now pending its results or staging for a bone marrow transplant, that he could still progress to AML in the meantime, and that she had personally spoke to the local oncologist.
She took her time and confirmed all these things to me. She had personally talked to him, although she said it had been almost two weeks ago. She explained that while there can be positive results from Vidaza, there is still the chance that it will not work at all or keep him from progressing to AML at anytime. She also confirmed her thoughts about only doing one round of Vidaza for now. She is open to doing more if Todd has good results, but at present, there is no definitive studies defining what the "perfect" number or rounds of Vidaza treatments are the most effective. She also called Todd and reassured him of these same facts.
I felt it was unethical for the local oncologist to give us his medical opinion contrary to Todd's treating doctor, who is a specialist in the field from one of the best hospitals in the world. I also didn't t think it was his job to "punish" Todd and put off treatment for another week!
In addition to this, there was a discrepancy in the number of days the Vidaza treatment was to be given. He only does 5-day treatments, whereas Todd's bone marrow transplant doctor requested seven days. This only confirmed to me that he wasn't aware of the bone marrow doctor's orders, nor did he ever communicate with us at the initial appointment that he only intended on treating Todd for five days and not seven. Instead, we had to insist that he change the orders for seven days. (See post Day 6: The day treatment almost didn't happen).
Because of these reasons, our experience with the local doctor has not been favorable. We are glad we chose to get a second opinion at The Cleveland Clinic. If Todd has to have a second round of Vidaza after the 28 days of waiting, I will seriously see if we can have the treatment administered by a different oncologist in the Dayton area and not the one we are using now.
Terms:
Cytogenetics refers to the microscopic analysis of chromosomes in individual cells. Genomics refers to the detailed molecular analysis of the entire genome. (www.pathology.washington.edu/.../cytogenetic...)
Vidaza: www.vidaza.com
After crying in my car for a while, I called Todd's transplant doctor in Cleveland and left a message to talk to her about what was going on. She called me back a few hours later. I told her that I just needed to confirm what I though I had understood: that Todd's cytogenetic abnormalities put him in a higher risk category, that one round of Vidaza was scheduled for now pending its results or staging for a bone marrow transplant, that he could still progress to AML in the meantime, and that she had personally spoke to the local oncologist.
She took her time and confirmed all these things to me. She had personally talked to him, although she said it had been almost two weeks ago. She explained that while there can be positive results from Vidaza, there is still the chance that it will not work at all or keep him from progressing to AML at anytime. She also confirmed her thoughts about only doing one round of Vidaza for now. She is open to doing more if Todd has good results, but at present, there is no definitive studies defining what the "perfect" number or rounds of Vidaza treatments are the most effective. She also called Todd and reassured him of these same facts.
I felt it was unethical for the local oncologist to give us his medical opinion contrary to Todd's treating doctor, who is a specialist in the field from one of the best hospitals in the world. I also didn't t think it was his job to "punish" Todd and put off treatment for another week!
In addition to this, there was a discrepancy in the number of days the Vidaza treatment was to be given. He only does 5-day treatments, whereas Todd's bone marrow transplant doctor requested seven days. This only confirmed to me that he wasn't aware of the bone marrow doctor's orders, nor did he ever communicate with us at the initial appointment that he only intended on treating Todd for five days and not seven. Instead, we had to insist that he change the orders for seven days. (See post Day 6: The day treatment almost didn't happen).
Because of these reasons, our experience with the local doctor has not been favorable. We are glad we chose to get a second opinion at The Cleveland Clinic. If Todd has to have a second round of Vidaza after the 28 days of waiting, I will seriously see if we can have the treatment administered by a different oncologist in the Dayton area and not the one we are using now.
Terms:
Cytogenetics refers to the microscopic analysis of chromosomes in individual cells. Genomics refers to the detailed molecular analysis of the entire genome. (www.pathology.washington.edu/.../cytogenetic...)
Vidaza: www.vidaza.com
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