Should have some results by Friday.
Friday, May 23, 2014
Bone marrow biopsy moved
The Cleveland Clinic called on Thursday rescheduling Todd bone marrow biopsy to next Tuesday. I'm not sure if there was a scheduling conflict or some anxious weekend vacationers.
Wednesday, May 21, 2014
Update: Bone Marrow Biopsy scheduled for Friday, May 23, 2014
We received a call from Todd's bone marrow transplant doctor at The Cleveland Clinic on Tuesday, May 20, 2014. She was back in town and wanted to review the "game plan" with Todd. She asked how the first round of Vidaza went and how he was feeling. She assured us that the low blood counts were indicative of having the Vidaza treatments and that the blood counts would go back up to his typical numbers in time.
Todd discussed changing our local oncologist and she said that was fine. She said she wanted to schedule the bone marrow biopsy for next week. While we were under the impression that she originally wanted to do the biopsy to review the affects, if any, that the Vidaza was having on the progression of Todd's MDS, this isn't the case. Instead, she wants to do a biopsy NOW to make sure that Todd's MDS isn't naturally progressing on its own since the last biopsy.
Todd was discouraged by this. He hadn't been flooding his body with the soy peptide or nutritional supplements he has been taking the last two years to help keep his body in optimal health. These products, purchased through the company Reliv, have had positive affects on keeping Todd's blast counts down (basically the cancer cells, which are immature and ineffective blood cells that can't function properly). Since he was experiencing nausea and lack of appetite, he had a hard time drinking them.
His doctor met in conference with the other bone marrow transplant doctors and the consensus was to do another round of Vidaza if his bone marrow results are "stable" which means about the same: 7-9% blast counts and no new chromosomal abnormalities. If the results show any more progression, there will not be another round of Vidaza. The bone marrow transplant will continue to be staged and scheduled as soon as possible.
The scheduling office called today and had an opening for this Friday morning for the bone marrow biopsy to be done in Cleveland. So Todd will be going this Friday instead of next week. Results will take several days, with preliminary results by Wednesday, May 28, or Thursday, May 29.
So, we wait.
Notes:
Defining a blast cell:
In assessing MDS, using the original IPSS scale (International Prognosis Scoring System), the doctors looked at blast cell counts in determining the risk assessment of the progression of the disease. When the blast cell count reaches 20% or more, it is then considered to be full Acute Myeloid Leukemia. Since diagnosis, Todd's counts have gone up and down from 2% up to 7% until reaching their highest point of 9% in the first few months of 2014. Now, the MDS community uses the IPSS-R (the Revised International Prognostic Scoring System) which takes more things into consideration, like hemoglobin, absolute neutrophil count, platelets, and cytogenetics and the number of chromosomal abnormalities, in addition to bone marrow blast cell counts.
Todd's doctors were using the 10% blast count as a personal threshold for doing the bone marrow transplant before he started developing chromosomal abnormalities a few months ago.
To learn more about the IPSS and the IPSS-R:
http://www.qxmd.com/calculate-online/hematology/myelodysplastic-syndrome-prognosis-ipss
http://www.mds-foundation.org/ipss-r-calculator/
Todd discussed changing our local oncologist and she said that was fine. She said she wanted to schedule the bone marrow biopsy for next week. While we were under the impression that she originally wanted to do the biopsy to review the affects, if any, that the Vidaza was having on the progression of Todd's MDS, this isn't the case. Instead, she wants to do a biopsy NOW to make sure that Todd's MDS isn't naturally progressing on its own since the last biopsy.
Todd was discouraged by this. He hadn't been flooding his body with the soy peptide or nutritional supplements he has been taking the last two years to help keep his body in optimal health. These products, purchased through the company Reliv, have had positive affects on keeping Todd's blast counts down (basically the cancer cells, which are immature and ineffective blood cells that can't function properly). Since he was experiencing nausea and lack of appetite, he had a hard time drinking them.
His doctor met in conference with the other bone marrow transplant doctors and the consensus was to do another round of Vidaza if his bone marrow results are "stable" which means about the same: 7-9% blast counts and no new chromosomal abnormalities. If the results show any more progression, there will not be another round of Vidaza. The bone marrow transplant will continue to be staged and scheduled as soon as possible.
The scheduling office called today and had an opening for this Friday morning for the bone marrow biopsy to be done in Cleveland. So Todd will be going this Friday instead of next week. Results will take several days, with preliminary results by Wednesday, May 28, or Thursday, May 29.
So, we wait.
Notes:
Defining a blast cell:
In a patient with a myelodysplastic syndrome, the blood stem cells (immature cells) do not become healthy red blood cells, white blood cells, or platelets. These immature blood cells, called blasts, do not work the way they should and either die in the bone marrow or soon after they go into the blood. This leaves less room for healthy white blood cells, red blood cells, and platelets to form in the bone marrow. When there are fewer healthy blood cells, infection, anemia, or easy bleeding may occur. (US Gov., web).For more information about MDS, blood cells, MDS, and to see a diagram of a bone marrow biopsy see: http://www.cancer.gov/cancertopics/pdq/treatment/myelodysplastic/Patient/page1
In assessing MDS, using the original IPSS scale (International Prognosis Scoring System), the doctors looked at blast cell counts in determining the risk assessment of the progression of the disease. When the blast cell count reaches 20% or more, it is then considered to be full Acute Myeloid Leukemia. Since diagnosis, Todd's counts have gone up and down from 2% up to 7% until reaching their highest point of 9% in the first few months of 2014. Now, the MDS community uses the IPSS-R (the Revised International Prognostic Scoring System) which takes more things into consideration, like hemoglobin, absolute neutrophil count, platelets, and cytogenetics and the number of chromosomal abnormalities, in addition to bone marrow blast cell counts.
Todd's doctors were using the 10% blast count as a personal threshold for doing the bone marrow transplant before he started developing chromosomal abnormalities a few months ago.
To learn more about the IPSS and the IPSS-R:
http://www.qxmd.com/calculate-online/hematology/myelodysplastic-syndrome-prognosis-ipss
http://www.mds-foundation.org/ipss-r-calculator/
Getting a new local oncologist
Todd had a follow-up, post-Vidaza visit with his local oncologist on Monday, May 19, 2014. It proved once again that this doctor was not right for Todd.
First off, the doctor made Todd wait for him about 45 minutes before he came into the room. The doctor then asked him how he was feeling and how he did during treatments. Todd responded that he had bouts of nausea, lack of appetite, some headaches, and experienced some dizziness and was light-headed. The doctor told him that the nausea was NOT caused from the Vidaza, that something else must be wrong with him!
Well, I don't know what he is reading, but first of all, he has not personally had Vidaza treatments himself, so how would he know! Second of all, everyone reacts differently to medication. Thirdly, the first listed most common side-effect of Vidaza is "Nausea." Todd asked him why then do they administer the Aloxi, anti-nausea drug, before treatment if no one suffers from nausea. Of course, he didn't answer that question, but instead went on to inform Todd that he should go see his family doctor if he had those kind of symptoms. In his words, no one else has had those kind of symptoms with Vidaza, so "something else must be wrong" with Todd.
This was the first stupid statement. Next, he asked Todd if his bone marrow transplant doctor at the Cleveland Clinic had an assistant, implying that he doesn't talk to her directly. Todd said he didn't know. Then, he asked Todd what kind of doctor she was: "An MD?" Todd said, of course! That she might be a PhD too!
They reviewed Todd's morning blood work, which showed all three of his blood counts down more than usual. Then he began to ask Todd about his "small" red blood cells. This was an issue after Todd was first diagnosed. Apparently, Todd naturally has small red blood cells. While for some people this can be an indication that they are low on iron, this has NOT proven to be the case with Todd. We learned that it is common for people of Mediterranean descent to have these characteristically small cells. This is called Thalassemia (see below). While there may be a small percentage of Mediterranean lineage somewhere in Todd's family, we are entirely sure if this is the reason. Todd reminded him that this was the same finding two years ago and that it was proven that this was genetic and not low iron.
This doctor was angling to get him to take iron infusions again! (If you remember from the "Diagnosis" blog, this was a reason we left him for a second opinion to begin with!). Todd refused. Some doctors are always looking for ways to make more money, with more appointments, more treatments, more tests, etc. He is one of them. It is the only place I've been to where the receptionists are required to look at your health insurance card every single day before treatment. Really? Like our insurance is going to change from the day before? Maybe, but not likely.
Todd also questioned him about why he only administers 5 days of Vidaza for all his patients instead of the 7-day standard. He answered something like, 5 days or 7 days, it really didn't make a difference. Not according to the research that I have read and presented in this blog in an earlier post.
This visit was the last straw for Todd. He left knowing that he never wanted to see this doctor again. I got the names of three well-referenced oncologists from friends. One of our friends had already discussed Todd's case briefly with him and he said he was willing to take Todd as a patient and that he was used to working with The Cleveland Clinic. Although we found out that this doctor is in the same Medical Group, we are still going to switch to him. We have placed the call to change appointments and we hope that we will have a better experience with a different oncologist if Todd needs to do another round of Vidaza next month.
MORE ABOUT Thalassemia: taken from the Thalassemia website:
Defining terminology:
In both cases, the following is stated about low iron:
Source:
http://www.thalassemia.org/learn-about-thalassemia/about-thalassemia/
First off, the doctor made Todd wait for him about 45 minutes before he came into the room. The doctor then asked him how he was feeling and how he did during treatments. Todd responded that he had bouts of nausea, lack of appetite, some headaches, and experienced some dizziness and was light-headed. The doctor told him that the nausea was NOT caused from the Vidaza, that something else must be wrong with him!
Well, I don't know what he is reading, but first of all, he has not personally had Vidaza treatments himself, so how would he know! Second of all, everyone reacts differently to medication. Thirdly, the first listed most common side-effect of Vidaza is "Nausea." Todd asked him why then do they administer the Aloxi, anti-nausea drug, before treatment if no one suffers from nausea. Of course, he didn't answer that question, but instead went on to inform Todd that he should go see his family doctor if he had those kind of symptoms. In his words, no one else has had those kind of symptoms with Vidaza, so "something else must be wrong" with Todd.
This was the first stupid statement. Next, he asked Todd if his bone marrow transplant doctor at the Cleveland Clinic had an assistant, implying that he doesn't talk to her directly. Todd said he didn't know. Then, he asked Todd what kind of doctor she was: "An MD?" Todd said, of course! That she might be a PhD too!
They reviewed Todd's morning blood work, which showed all three of his blood counts down more than usual. Then he began to ask Todd about his "small" red blood cells. This was an issue after Todd was first diagnosed. Apparently, Todd naturally has small red blood cells. While for some people this can be an indication that they are low on iron, this has NOT proven to be the case with Todd. We learned that it is common for people of Mediterranean descent to have these characteristically small cells. This is called Thalassemia (see below). While there may be a small percentage of Mediterranean lineage somewhere in Todd's family, we are entirely sure if this is the reason. Todd reminded him that this was the same finding two years ago and that it was proven that this was genetic and not low iron.
This doctor was angling to get him to take iron infusions again! (If you remember from the "Diagnosis" blog, this was a reason we left him for a second opinion to begin with!). Todd refused. Some doctors are always looking for ways to make more money, with more appointments, more treatments, more tests, etc. He is one of them. It is the only place I've been to where the receptionists are required to look at your health insurance card every single day before treatment. Really? Like our insurance is going to change from the day before? Maybe, but not likely.
Todd also questioned him about why he only administers 5 days of Vidaza for all his patients instead of the 7-day standard. He answered something like, 5 days or 7 days, it really didn't make a difference. Not according to the research that I have read and presented in this blog in an earlier post.
This visit was the last straw for Todd. He left knowing that he never wanted to see this doctor again. I got the names of three well-referenced oncologists from friends. One of our friends had already discussed Todd's case briefly with him and he said he was willing to take Todd as a patient and that he was used to working with The Cleveland Clinic. Although we found out that this doctor is in the same Medical Group, we are still going to switch to him. We have placed the call to change appointments and we hope that we will have a better experience with a different oncologist if Todd needs to do another round of Vidaza next month.
MORE ABOUT Thalassemia: taken from the Thalassemia website:
Defining terminology:
People whose hemoglobin does not produce enough alpha protein have alpha thalassemia. It is commonly found in Africa, the Middle East, India, Southeast Asia, southern China, and occasionally the Mediterranean region.
People whose hemoglobin does not produce enough beta protein have beta thalassemia. It is found in people of Mediterranean descent, such as Italians and Greeks, and is also found in the Arabian Peninsula, Iran, Africa, Southeast Asia and southern China. (About Thalassemia, web).
In both cases, the following is stated about low iron:
As in mild alpha thalassemia, physicians often mistake the small red blood cells of the person with beta thalassemia minor as a sign of iron-deficiency anemia and incorrectly prescribe iron supplements. (About Thalassemia, web).So while, some people with thalassemia major may need iron or blood transfusions, it is not typical in minor cases. Of course, Todd had his tested and found his iron levels were in the normal range.
Source:
http://www.thalassemia.org/learn-about-thalassemia/about-thalassemia/
Friday, May 16, 2014
Update: Post-Vidaza treatment round one
The last day of Vidaza chemotherapy done on Tuesday, May 13, 2014, was uneventful. Todd did not get the Aloxi that day and was of course plagued by nausea, and digestion problems. He barely ate or got out of bed the entire day. He did take his prescription medication for nausea, which did help, but it can also cause the dizziness and sleepiness he was experiencing in addition to the nausea.
I, on the other hand, was busy as a bee. I decided to help with the yard work and flower-planting that Todd had started before treatment. For those of you who don't know, we are having a big graduation party for our daughter at our house on June 1. We've rented a tent to have put up in the back yard for the party. Having people over is often a big motivator for doing projects around the house that need done! We are no exception to this!
So, I planted flowers around the yard most of the morning and afternoon. I finished out the afternoon and evening by doing some party shopping, grocery shopping, making dinner, doing laundry, doing dishes, and for some unknown reason, cleaning out the refrigerator and then taking out the trash.
It doesn't take long to realize how much one person has to do when the other is out of commission. So, I have learned to empathsize with other caregivers. Not only are you trying to make them eat and stay hydrated, but you have to pick-up their share of chores. I know I can speak for my fellow caregivers when I say, that none of this is done begruggingly, but instead out of a heart full of love. However, it can be exhausting none-the-less. I hurt so bad going to bed that night that I couldn't move! I was sunburned, my hips hurt, my shoulders hurt; you name it! (I'm getting older you know!)
While most of these things are already part of my normal job duties as a mom, I don't describe them here for sympathy or as a cry for help. I just want to acknowledge that I have come to appreciate and empathize with those who do care-giving for their loved ones day-in and day-out for months and years at a time.
I appreciate those who offer their help and encouragement. I know the time will come when we will need to "call-in" those offers for help, but I have to admit it is hard to accept help even though the offers are there. I guess it is because you realize everyone else you know is already just as "maxed-out" as you in the course of their own every-day lives. Kids need driven to practice and homework needs done. Laundry, dishes, and meals are never ending. Tournaments, birthdays, and graduations are all exciting parts of everyday life you want to experience! Cancer is just such an unwelcome intruder.
You realize that the good health of yourself and your family is more important than anything. Without that, it makes it hard to enjoy any of these wonderful daily experiences of life. On the flip-side, it helps you appreciate everything you have the opportunity to experience, and you decide not to let cancer stop you from doing them. You learn to fight the cancer and not let it take these things away from you!
We may have the biggest and hardest part of our journey still to come. Todd messaged his transplant doctor today asking what to expect next. She was out of town, but sent a quick response saying that they will likely do the bone marrow biopsy in the first week of June to see how his MDS has responded to the first round of Vidaza. She then mentioned doing a second round of Vidaza after that. (There has to be 21 days between each round of Vidaza). So, I'm not sure when and if the transplant will be scheduled at this point. She said she will contact us next week when she gets back in town to discuss it.
I will be sure to keep you all updated once we know. Thanks for your prayer and support. Rest assured I will get to the point when I will ask for and accept your generous offers of help! Just keep reminding me that they are there.
I, on the other hand, was busy as a bee. I decided to help with the yard work and flower-planting that Todd had started before treatment. For those of you who don't know, we are having a big graduation party for our daughter at our house on June 1. We've rented a tent to have put up in the back yard for the party. Having people over is often a big motivator for doing projects around the house that need done! We are no exception to this!
So, I planted flowers around the yard most of the morning and afternoon. I finished out the afternoon and evening by doing some party shopping, grocery shopping, making dinner, doing laundry, doing dishes, and for some unknown reason, cleaning out the refrigerator and then taking out the trash.
It doesn't take long to realize how much one person has to do when the other is out of commission. So, I have learned to empathsize with other caregivers. Not only are you trying to make them eat and stay hydrated, but you have to pick-up their share of chores. I know I can speak for my fellow caregivers when I say, that none of this is done begruggingly, but instead out of a heart full of love. However, it can be exhausting none-the-less. I hurt so bad going to bed that night that I couldn't move! I was sunburned, my hips hurt, my shoulders hurt; you name it! (I'm getting older you know!)
While most of these things are already part of my normal job duties as a mom, I don't describe them here for sympathy or as a cry for help. I just want to acknowledge that I have come to appreciate and empathize with those who do care-giving for their loved ones day-in and day-out for months and years at a time.
I appreciate those who offer their help and encouragement. I know the time will come when we will need to "call-in" those offers for help, but I have to admit it is hard to accept help even though the offers are there. I guess it is because you realize everyone else you know is already just as "maxed-out" as you in the course of their own every-day lives. Kids need driven to practice and homework needs done. Laundry, dishes, and meals are never ending. Tournaments, birthdays, and graduations are all exciting parts of everyday life you want to experience! Cancer is just such an unwelcome intruder.
You realize that the good health of yourself and your family is more important than anything. Without that, it makes it hard to enjoy any of these wonderful daily experiences of life. On the flip-side, it helps you appreciate everything you have the opportunity to experience, and you decide not to let cancer stop you from doing them. You learn to fight the cancer and not let it take these things away from you!
We may have the biggest and hardest part of our journey still to come. Todd messaged his transplant doctor today asking what to expect next. She was out of town, but sent a quick response saying that they will likely do the bone marrow biopsy in the first week of June to see how his MDS has responded to the first round of Vidaza. She then mentioned doing a second round of Vidaza after that. (There has to be 21 days between each round of Vidaza). So, I'm not sure when and if the transplant will be scheduled at this point. She said she will contact us next week when she gets back in town to discuss it.
I will be sure to keep you all updated once we know. Thanks for your prayer and support. Rest assured I will get to the point when I will ask for and accept your generous offers of help! Just keep reminding me that they are there.
Thanks: Anna a Beavercreek Girl Scout
While going out to the cancer treatment center where Todd received treatment, they provided coffee and tea, but a Beavercreek, Ohio Girl Scout named Anna provided the encouragement and subsistence for the patients.
Todd, like most chemotherapy patients have trouble with eating, digestion, and/or they suffer from a metallic taste in the their mouths. While they encourage patients to eat before coming to treatment, some days Todd just didn't feel like it after getting out of bed. So, when I was getting us tea and coffee from the hospitality station, I noticed the little colored lunch sacks with the top folded down and secured with a yellow happy face sticker that the nurses had told us about. A young girl scout, whose father had been through cancer three times, was earning a badge by doing volunteer work. In this case, she made up little treat bags for the patients. Inside there was candy and a granola or breakfast bar with a personal message and her girl scout card.
Twice, Todd got a little bit of an appetite and was able to get a little snack when doing his treatment thanks to Anna. Many of the patients took advantage of these little treat bags while they were there too.
Our thanks go out to Anna in Beavercreek, Ohio for her compassion and encouragement. I''m not sure that we will ever get to meet her or thank her personally, but she touched our lives just the same with her kindness. It is obvious that she had learned from her own experiences (her dad having to go through treatment several times), that she could make a difference in other people's lives by this small yet significant work. Isn't this what God wants us to learn through the trials in our lives? How we can in turn help others? Anna did. And thanks to her parents who taught her these lessons and supported her in her project and to the Girl Scouts for being the vehicle in which young girls can serve.
Todd, like most chemotherapy patients have trouble with eating, digestion, and/or they suffer from a metallic taste in the their mouths. While they encourage patients to eat before coming to treatment, some days Todd just didn't feel like it after getting out of bed. So, when I was getting us tea and coffee from the hospitality station, I noticed the little colored lunch sacks with the top folded down and secured with a yellow happy face sticker that the nurses had told us about. A young girl scout, whose father had been through cancer three times, was earning a badge by doing volunteer work. In this case, she made up little treat bags for the patients. Inside there was candy and a granola or breakfast bar with a personal message and her girl scout card.
Twice, Todd got a little bit of an appetite and was able to get a little snack when doing his treatment thanks to Anna. Many of the patients took advantage of these little treat bags while they were there too.
Our thanks go out to Anna in Beavercreek, Ohio for her compassion and encouragement. I''m not sure that we will ever get to meet her or thank her personally, but she touched our lives just the same with her kindness. It is obvious that she had learned from her own experiences (her dad having to go through treatment several times), that she could make a difference in other people's lives by this small yet significant work. Isn't this what God wants us to learn through the trials in our lives? How we can in turn help others? Anna did. And thanks to her parents who taught her these lessons and supported her in her project and to the Girl Scouts for being the vehicle in which young girls can serve.
Monday, May 12, 2014
Our Experiences with a Local Oncologist v. The Cleveland Clinic
Today I want to discuss our experience seeing a local oncologist versus seeing a specialist at a reputable and renowned treatment Center. In our case it was a local oncologist in the Dayton, Ohio area versus The Cleveland Clinic, Cleveland, Ohio. Our experience with the local oncologist/hematologist has so far been unfavorable. While I won't disclose the oncologist/hematologist's name here (although I'm tempted to), it appeared that he was more into making money than practicing his profession, which is to do "no harm" and provide the best care.
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
Day 6: The treatment that almost didn't happen
We arrived at the Cancer Treatment Center in Kettering, Ohio, not sure of our appointment. Todd said over the weekend that he didn't think they had us on the schedule for today, and I responded, "Why wouldn't they?"
Sure enough, we showed up on Monday morning at 8:00 am and they had no treatment scheduled. The nurse said they never do more than 5 days of treatment of Vidaza. We had never heard of this! Our bone marrow doctor in Cleveland told us it would be a 7 day treatment, 5 days one week and two the next week.
The nurse waited until the local oncologist came in to ask him what he was going to do. Meanwhile, I called Cleveland Clinic to ask them what treatment had been prescribed. They said usually the treatment is 7 days, but that some doctors do 5.
By this time the nurse had returned with orders from the local oncologist saying she was to go ahead and give it to him if that is what the doctor at Cleveland said to do. This isn't the first problem we've had with the local oncologist. (I will write a separate post about this).
I relayed this to Cleveland and they said to do the seven days if he is going to administer it.
Being the first time we had heard of a five day treatment, I decided to Google it. My favorite "go to" source, the MDS Beacon, came up with a story dated May 2013 that spoke of a study conducted in Portugal where the treatment center used 5- day treatments because of limited staff scheduling. While the study didn't find the 5-day treatment to be necessarily inferior, it is NOT the recommended treatment regimen in the United States or Europe, nor is was there enough data at that time to recommend a 5-day treatment over the 7-day standard. (O'Reilly, McHale, et al, as cited in Engle and Haehle np).
Gillian Lush, another writer of the MDS Beacon, wrote in 2009 about a information submitted by Garcia, de Miguel, and Bailen, et al. where "three different dosing schedules were studied, each on a 28-day cycle." It was found that:
Todd's treatment regimen would be considered: Treatment on days 1-5, 8 and 9. This is done because facilities are not open for treatment on Saturdays and Sundays, which would be considered days 6 and 7.
I'm not saying that there is more evidence, trials, or published studies that the Kettering doctors relies on that I haven't read, because he obviously may know more that I don't. However, looking at these two studies from a layman's point of view, we chose to stick to our guns and insist on seven days of treatment. If he is going to go through all the sickness and side-effects of the Vidaza, he might as well go for the treatment with the better results.
In addition to treatment, they finally drew Todd's blood to review his counts. They are supposed to check your blood work every three days, but for some reason, this was the first time in six days that they took his blood. His platelets were about the same, but still low. His white counts had dropped quite a bit, but this is usually expected as a side-affect of the chemotherapy.
After treatment, he got out for a bit and then went home to rest. He is still having issues with digestion and nausea, but they did give him the Aloxi today, which we hoped would be a big help. He has lost weight and I'm still pushing him to eat whenever I can.
Tomorrow will the last treatment for now.
References:
Engle, Elizabeth and Haehle, Maike. "Five-Day Vidaza Dosing Schedule May Have Similar Efficacy In Higher-Risk MDS As Seven-Day Dosing." The MDS Beacon. Light Knowledge Resource., 29 May 2013. Web. 12 May 2014. http://www.mdsbeacon.com/news/2013/05/29/5-day-vidaza-azacitidine-higher-risk-myelodysplastic-syndromes/
Garcia, de Miguel, Bailen, et al. "Different Clinical Results with the Use of Different Dosing Schedules of Azacitidine in Patients with Myelodysplastic Syndrome Managed in Community-Based Practice: Effectiveness and Safety Data From the Spanish Azacitidine Compassionate Use Registry " Poster. 2773. 3 December 2009. Web. 12 May 2014.
https://ash.confex.com/ash/2009/webprogram/Paper21649.html
Lush, Gillian. "Approved Vidaza Dosing Schedule May Be Better and Safer Than Alternatives (ASH 2009)." MDS Beacon. Light Knowledge Resources. 14 December 2009. Web. 12 May 2014.
approved-vidaza-dosing-schedule-may-be-better-and-safer-than-alternatives-ash-2009
Gillian Lush, another writer of the MDS Beacon, wrote in 2009 about a information submitted by Garcia, de Miguel, and Bailen, et al. where "three different dosing schedules were studied, each on a 28-day cycle." It was found that:
"Of the three groups, the overall response rate of group C (who had 7 days of consecutive treatments)was the highest at 74 percent. Group A (5 day only treatment) showed a response rate of 58 percent, and group B (who received Vidaza on days 1, 2, 3, 4, 5, 8, and 9) showed a response rate of 65 percent." (Lush n.p. Parenthetical statements added).
Todd's treatment regimen would be considered: Treatment on days 1-5, 8 and 9. This is done because facilities are not open for treatment on Saturdays and Sundays, which would be considered days 6 and 7.
I'm not saying that there is more evidence, trials, or published studies that the Kettering doctors relies on that I haven't read, because he obviously may know more that I don't. However, looking at these two studies from a layman's point of view, we chose to stick to our guns and insist on seven days of treatment. If he is going to go through all the sickness and side-effects of the Vidaza, he might as well go for the treatment with the better results.
In addition to treatment, they finally drew Todd's blood to review his counts. They are supposed to check your blood work every three days, but for some reason, this was the first time in six days that they took his blood. His platelets were about the same, but still low. His white counts had dropped quite a bit, but this is usually expected as a side-affect of the chemotherapy.
After treatment, he got out for a bit and then went home to rest. He is still having issues with digestion and nausea, but they did give him the Aloxi today, which we hoped would be a big help. He has lost weight and I'm still pushing him to eat whenever I can.
Tomorrow will the last treatment for now.
References:
Engle, Elizabeth and Haehle, Maike. "Five-Day Vidaza Dosing Schedule May Have Similar Efficacy In Higher-Risk MDS As Seven-Day Dosing." The MDS Beacon. Light Knowledge Resource., 29 May 2013. Web. 12 May 2014. http://www.mdsbeacon.com/news/2013/05/29/5-day-vidaza-azacitidine-higher-risk-myelodysplastic-syndromes/
Garcia, de Miguel, Bailen, et al. "Different Clinical Results with the Use of Different Dosing Schedules of Azacitidine in Patients with Myelodysplastic Syndrome Managed in Community-Based Practice: Effectiveness and Safety Data From the Spanish Azacitidine Compassionate Use Registry " Poster. 2773. 3 December 2009. Web. 12 May 2014.
https://ash.confex.com/ash/2009/webprogram/Paper21649.html
Lush, Gillian. "Approved Vidaza Dosing Schedule May Be Better and Safer Than Alternatives (ASH 2009)." MDS Beacon. Light Knowledge Resources. 14 December 2009. Web. 12 May 2014.
approved-vidaza-dosing-schedule-may-be-better-and-safer-than-alternatives-ash-2009
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