Health

Donor Update – 1/20/10

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Email excerpt from my Bone Marrow Donor Coordinator:

When dealing with national and international registries it takes a long time compared to family members who arrive ASAP.

World Wide I only found 8 potential matches; of samples we requested we only received 2 of them this week; they are in typing now. I do not know when the others will arrive or if they are available; we have not heard anything from the other 6.

In a perfect world I will have 3 matches but we will not know until the Class II and High Resolution typing is complete if they match. If I find 3 matches I will put them on hold.

Bloodwish

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There has been much focus on finding a bone marrow donor match for me. It makes sense because the sole reason I am going through all of the nausea and discomfort of the chemotherapy treatment is to destroy my diseased and dysfunctional bone marrow and replace it with someone’s healthy bone marrow. I named my blog Marrowish because of this need–a wish for marrow–and to remind myself to live a marrowish life–living a full life, right down to the marrow.

It amazes me how, because of my need, so many of my friends and acquaintances have volunteered to donate their bone marrow, knowing that the odds are way against their marrow being a match for me. Some have even wanted to set up a bone marrow drive in my name. Amazing.

I registered for the national bone marrow registry a long time ago. In fact, I had forgotten about it until my leukemia diagnosis. I do not remember why I did it. As far as I know I have never known anyone with leukemia. In fact, I was not really too sure what leukemia really was when I was diagnosed with it. And still, after all these years on the list I was never called. I suspect most people on the registry never are. That being said, I still encourage as many people as possible to register. Not for me, but for those who do not yet know that they will become inflicted with the disease…especially the children.

But there is also another, more immediate need where your help will be put directly to good use: donating blood.

During my first phase of treatment the chemotherapy drove down not only my white blood cell count, it also drove down my red blood cell and my platelet counts. As a result, I regularly had to receive both red blood cell and platelet transfusions. I suspect the same will be true during the subsequent phases. Each time I had a transfusion, as I watched the nurse hang the bags of blood or platelets and hook their lines up to my catheter, I felt a little guilty and wished that I had donated more blood. I am pretty sure that I will never have an opportunity to donate blood again.

So, if you are looking to have an immediate impact on someone’s life, perhaps an injured service member, or an unfortunate commuter, or even a scared, young leukemia patient, please donate blood and donate it regularly. Many of you certainly already do. Thank you. For those who have not, please do. I guarantee that, even if you hate needles and get queasy from the thought of it, you will still feel good about it after you are done. It is a noble cause. In fact, I would not be able to survive without someone with O+ blood taking the time out of their busy schedule to donate their blood to me. There are many, many others who are in just as much need, if not more. And I pray it never happens, but you never ever know–some day you may be the one in need.

If you’ve ever donated blood before, or if you donate blood any time after reading this post, please leave me a comment to let me know so we both can feel good about it together.

Donor Update – 1/11/10

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Email excerpt from my Bone Marrow Donor Coordinator:

I have found potential MUD [Matched Unrelated Donor] donors but I just requested the samples to be sent here for testing to see if they are fully matched. The samples are kept in the individual registry repository I do not have any planned arrival dates from the samples that are requested at this time. Once the sample arrives it can take 10-14 days before we know if it is a match.

The underlines for emphasis are mine. Updates will follow as they are received.

My Hickman Line

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Johns Hopkins Instructions for taking care of a Hickman Line and a Heparin I.V. flush syringe.
I have an Hickman line inserted in my juggler vein to administer my chemotherapy as well as to draw blood for my many, many blood tests. It sounds rather creepy but it is better than getting an I.V. or vein sticks over and over again. Either a nurse at the hospital or my nurse at home (my wife) flushes the lines daily with Heparin I.V. flush syringes.

Because the line is sewn directly into a vein, risk of infection is always a concern. Consequently, the catheter is always covered by a Tegaderm dressing. The dressing provides for a snug fit over the site and enables you to see through the dressing to check the site for infection. It is changed weekly and the procedure is quite a mini production. Masks and gloves are worn and there is even another set of sanitized gloves that must be put on after the old dressing is removed. My wife has been trained to change the dressing and we have kits at home with all the items needed. To take a shower I have to cover the dressing with yet another dressing, called an AquaGuard. The AquaGuard is supposed to prevent the site from getting wet. Don’t tell my nurses but the site still usually gets wet.

My Hickman Line covered by white Tegaderm Dressing and clear AquaGuard dressing.

If you have not figured it out by now, we cancer patients are very needy and, unfortunately, require much care and attention. Often, it seems that I have it pretty easy compared to all of the work that others, especially my wife, have to do on my behalf.

The following is an explanation of Hickman Lines from Wikipedia:

“A Hickman line is an intravenous catheter most often used for the administration of chemotherapy or other medications, as well as for the withdrawal of blood for analysis. Some types of Hickman lines are used mainly for the purpose of apheresis or dialysis. Hickman lines may remain in place for extended periods and are used when long-term intravenous access is needed.

The insertion of a Hickman line is usually done under sedation or a general anesthetic by a radiologist or surgeon. It involves two incisions, one at the jugular vein or another nearby vein or groove, and one on the chest wall. At the former incision site (known as the “entrance” site), a tunnel is created from there through to the latter incision site (known as the “exit” site), and the catheter is pushed through this tunnel until it “exits” the latter incision site.” [Read more]

My Doctor’s Explanation

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Question: “Why was my diagnosis changed to Chronic Myelogenous Leukemia (CML) in Bilineal Blast Crisis?”

Doctor’s response: Let’s focus on the bilineage part first. White blood cells can be of myeloid or lymphoid origin. When [Kurt] came to the hospital he had a high white blood cell count with mostly lymphoid cells. The high white count favored an acute leukemia. The first and most likely diagnosis is acute lymphoblastic leukemia (ALL). We then performed a bone marrow biopsy and flow cytometry that showed that 77% of his bone marrow cells were of lymphoid origin and that 1-2% that appeared to be of myeloid origin. This meant there were two lineages – lymphoid and myeloid, although the myeloid population was very tiny. In these cases, we design a therapy that targets both lineages. For lymphoid leukemias we treat with a lymphoid induction chemotherapy regimen, which in your husband’s case was E2993. For myeloid leukemias, we can treat with myeloid induction chemotherapy or for patients that are Philadelphia chromosome positive, we can treat with a tyrosine kinase inhibitor such as Imatinib (also known as Gleevac) or Desatinib (also known as Sprycel). Because [Kurt] was Philadelphia chromosome positive, the chemotherapy plan we designed for [him] was E2993 induction with Desatinib. I want to emphasize that if [Kurt] had simply Philadelphia chromosome positive ALL (in other words no myeloid cells) we would still use the exact same regimen of E2993 induction with Desatinib.

Now let me explain in more detail the diagnosis of chronic myelogenous leukemia (CML) in blast crisis. The pathologists emphasized to us that this was a challenging case. When the pathologists first gave us their analysis of the bone marrow, they also saw basophils and increased myeloid growth which suggested CML in blast crisis. CML is at first a slow growing disease but goes through 3 phases: chronic (slow), accelerated (medium), and blast phase (fast). Some people with CML to get from chronic phase to blast phase; others and we suspect, for [Kurt], this shift from slow to fast occurred over months at most. In blast phase (the fast growing phase), CML can make either or both myeloid or lymphoid blasts which is consistent with what we saw for [Kurt]. The definitive tests to prove CML are molecular tests and cytogenetic test in which we analyze [his] chromosomes. These tests confirmed the presence of the Philadelphia chromosome and also that the size of the BCR-Abl product was the p210 product. You can read more about this, but this p210 product is found in CML not ALL.

I want to emphasize, however, that we were thinking about both diagnoses from the start of [Kurt’s] care and that for both diagnoses, our treatment plan was exactly the same. Even though the p210 test was pending when we started treatment, we were confident that the chemotherapy plan we outlined would be the best treatment for both diagnoses. Our goal is to cure [Kurt], and the current plan of E2993/desatinib and transplantation is the best strategy for defeating his leukemia.