I left off the last post with where we were at in December and trying to decide what our options were to treat the mutation of the CML cells. There are not many. This mutation is rare, and most of the targeted chemo drugs on the market do not address or affect the enzyme in this mutation. There is one drug that is on the market for a few years. This drug has some serious side effects. We have been told in 15-20% of patients taking this drug, there have been cardiac, bleeding, and liver issues.
The second option for treatment is Bone marrow transplant. This could be a potential cure, but also comes with its own complications. This is also only a 60% success rate according to some well known websites (success rate can be considered cure, as well as survival). Our doctors assure us that CML is the easiest cancer to treat with a bone marrow transplant and although they have not discussed cure rates with us, lead us to believe that success is higher with CML than other cancers.
So we have been headed down the path of transplant. Honestly, we are on the path that the doctors send us without really knowing where we are going and/or if it is the right path. We are trying to do our research and look into options. The one major issue with dealing with a major health problem is that the amount of control you have over decisions is much smaller than you realize.....for many many reasons.
Of course, we are at the mercy of the doctors we see. A transplant doctor knows transplants. He (we have only seen male doctors at this point) might not have as much knowledge about other treatments or medications available. And we have no idea if the doctor we are visiting is any good. The medical community is very protective of its doctors. It is hard to figure out what makes a good doctor and if the doctor we are seeing is one of those good doctors.
One major reason is insurance. As we start down this path, we are told to check out MD Anderson. Of course. They are a major cancer research and treatment center.... one of the best in the nation. But our insurance doesn't cover MD Anderson. None of the insurance that we can get cover it. MD Anderson only accepts insurance policies offered by employers, and we purchase our own insurance plans. Insurance and cost limit us drastically to the doctors we see, the medical centers we can look into. Some might argue that his health is worth any price. But is it? It is a question no one likes to answer, but in a situation like this, it needs to be addressed somewhat. We have three girls at different ages, including college. This affects them and their future as well. Do we want to completely bankrupt our family and put us into debt for this? If we knew that by doing so, we would cure the cancer and save my husbands life, maybe. But we don't. We have no idea if going to a renowned cancer center gives us any advantage. There are no guarantees in any of this. So we walk around all the landlines, we take the path that has been laid out for us, and we hope that by keeping our eyes and hearts open we make the correct decisions.
Tuesday, February 23, 2016
Wednesday, February 17, 2016
A new journey
My family and I are on a new journey. One that is still slow. Steady? That remains to be seen.
I am not a writer. I am not a doctor. But I have decided to try to journal our journey. So lets start this with the background.
Two years and 6 months ago, my husband was having a lot of weight loss. There were other symptoms that had gone unnoticed (mild depression and such). The weight loss was the real red flag. He was losing about 1/2 a pound every other day or so. This prompted him to make an appointment with his general doctor who ran some blood work. He got a call that evening around 6 pm telling him he needed to head to the hospital at that moment. The doctor suspected it was leukemia based on the blood work, but the hospital would run more tests to verify. I knew the moment he called me in what it was. I don't know how I knew, as I hadn't even been worried at that point about the weight loss (more like jealous!).
We tried to keep calm for the kids sake, and headed straight to the hospital. A flurry of blood work, a lot of waiting, and many doctors later, he was admitted at midnight and started on a low dose chemo. In the midst of the panic and bad news, our oncologist was calm and reassuring. Drew was diagnosed with Chronic Myelogeneous Leukemia (CML) which is the "good" kind. The main concern that evening was that the white blood cell counts were so high, Drew was at a risk for a stroke. The chemo would bring down the white blood cell counts quicker, and then he would be started on an oral targeted chemo medication that would treat the CML. He was released a couple of days later and we resumed life "normally". It sounds weird to anyone who has any knowledge of the word leukemia. But it was fairly normal. The chemo in the hospital did not have the typical chemo reaction of hair loss or nausea. The medication had fairly benign side effects (some weird cramping and mild tummy problems if not taken with food). But other than more doctor appointments and lots more blood work in the future, we felt like we had dodged a major bullet. We were told that the medication would work until it didn't, and then there were 2nd generation drugs we could try. We were told that many people were on this drug for 10-15 years (about as long as the drug existed) and that in the UK, some were considered cured and could live without the drug. We felt confident that things were going to be fine. Until.......
This past November, Drew went into his regularly scheduled oncologist appointment. He was down to seeing the doctor about every 4 months or so to keep an eye on things. But the BRAC-able levels in his body had risen from virtually zero to 1 %. (I will fill in medical detail in another post) The doctor was concerned because those should not really changed, so he ordered more blood work to find out why. In December we learned that the leukemia cells had mutated, and the current medication was no longer doing its job completely. The really bad news is that the cell mutation is a fairly rare one that the majority of the second generation drugs do not affect.
More on our options presented next.
I am not a writer. I am not a doctor. But I have decided to try to journal our journey. So lets start this with the background.
Two years and 6 months ago, my husband was having a lot of weight loss. There were other symptoms that had gone unnoticed (mild depression and such). The weight loss was the real red flag. He was losing about 1/2 a pound every other day or so. This prompted him to make an appointment with his general doctor who ran some blood work. He got a call that evening around 6 pm telling him he needed to head to the hospital at that moment. The doctor suspected it was leukemia based on the blood work, but the hospital would run more tests to verify. I knew the moment he called me in what it was. I don't know how I knew, as I hadn't even been worried at that point about the weight loss (more like jealous!).
We tried to keep calm for the kids sake, and headed straight to the hospital. A flurry of blood work, a lot of waiting, and many doctors later, he was admitted at midnight and started on a low dose chemo. In the midst of the panic and bad news, our oncologist was calm and reassuring. Drew was diagnosed with Chronic Myelogeneous Leukemia (CML) which is the "good" kind. The main concern that evening was that the white blood cell counts were so high, Drew was at a risk for a stroke. The chemo would bring down the white blood cell counts quicker, and then he would be started on an oral targeted chemo medication that would treat the CML. He was released a couple of days later and we resumed life "normally". It sounds weird to anyone who has any knowledge of the word leukemia. But it was fairly normal. The chemo in the hospital did not have the typical chemo reaction of hair loss or nausea. The medication had fairly benign side effects (some weird cramping and mild tummy problems if not taken with food). But other than more doctor appointments and lots more blood work in the future, we felt like we had dodged a major bullet. We were told that the medication would work until it didn't, and then there were 2nd generation drugs we could try. We were told that many people were on this drug for 10-15 years (about as long as the drug existed) and that in the UK, some were considered cured and could live without the drug. We felt confident that things were going to be fine. Until.......
This past November, Drew went into his regularly scheduled oncologist appointment. He was down to seeing the doctor about every 4 months or so to keep an eye on things. But the BRAC-able levels in his body had risen from virtually zero to 1 %. (I will fill in medical detail in another post) The doctor was concerned because those should not really changed, so he ordered more blood work to find out why. In December we learned that the leukemia cells had mutated, and the current medication was no longer doing its job completely. The really bad news is that the cell mutation is a fairly rare one that the majority of the second generation drugs do not affect.
More on our options presented next.
Subscribe to:
Posts (Atom)