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/
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