Posted on 2 Comments

Donor Update – 2/2/10

Email excerpt from my Bone Marrow Donor Coordinator:

Hello,
I emailed the information below to [Kurt’s doctors]; I am still hoping to find another match– but as of date we only have one.

Kurt Brindley MR # X-XXX-XX-XX:
has 2 haplo* sisters, 1 disparate** sister, 2 MUD [Matched Unrelated Donors] Mis- Matches and 1 MUD Match.

Sincerely,
[Bone Marrow Donor Coordinator]

– – – – – – – – – –

* When trying to match a sibling, a haplo match essentially means that she has only one of the tissue types contributed by either the mother or father. A haplo match is a half-match, so to speak, and may be used in a transplant if a full match cannot be found.

** When trying to match a sibling, a disparate match has neither of the tissue types contributed by either the mother or father. A disparate match cannot be used for a transplant.

The underlines for emphasis are mine.

Visit www.marrow.org for more information about the Bone Marrow Donor program.

Posted on Leave a comment

Finding Out – Part II

Most of us are probably familiar with the television drama scene where the doctor, prim in his white lab coat, sits at his desk in his office with a husband and wife sitting across from him. The couple seems apprehensive, knowing that their doctor called them in to tell them something very serious. And then doctor gently breaks the news to the couple that the husband has cancer. When the couple hears the news, the wife softly sobs into her husband’s shoulder as the husband resolutely asks the doctor both what are his chances and what are his options. You can imagine how the rest of the story goes. It is a typical Marcus Welby M. D. scene. However, life is not a television show, at least it isn’t for me.

The Johns Hopkins University Hospital is located on the east side of Baltimore and the main hospital is very much an inner city hospital. So, after circling around the block several times in an effort to find a place to park, and after walking what seemed at least a mile in the rain (Can you feel the melodrama starting to seep in?), I entered the hospital way out of my element and more than a little upset about having a leg full of blood clots.

Languages other than English were being spoken. Even when English was being spoken, it was often as a second language. Other than the fact that I felt like I had entered a United Nations sponsored medical bazaar, the emergency room experience started out like most emergency room experiences: long periods of waiting while sitting in uncomfortable chairs in a crowded room full of loud conversations. Eventually, I made my way through the process: check in; vital signs taken and blood drawn; move to the next waiting room to be screened; screened; move to another waiting room to wait to be seen by the on duty physician; move to the curtain-enclosed room to meet with the on duty physician; more waiting.

By this time my wife had arrived. We both waited in the small room–a large nook with a hospital bed is a better description–behind a privacy curtain. The emergency room was busy and we heard all of its busy noises, including the on duty drunk moaning and complaining about something that I could not understand. Every time he would moan, someone would holler at him to hurry up and go to sleep. A nurse entered and quizzed me with a slew of questions while she poked and prodded with her fingers and hands and listened intently with her stethoscope. With the promise that the doctor would be seeing us soon, the nurse left my wife and me to continue our pondering as to why in the heck I had a leg full of blood clots.

Posted on 7 Comments

Donor Update – 1/20/10

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.

Posted on 9 Comments

Finding Out – Part I

Finding Out – Part I

Of course once I was diagnosed with leukemia I immediately understood why I had become so tired so often beginning sometime around the end of July 2009. Physically, the year started out great. I had ankle surgery in 2007 for a dislocated tendon on my left ankle so I had not really worked out since then. But at the beginning of 2009 my ankle felt pretty good and I began running and working out. I kept it up until mid-August when I had to stop because I just did not have the energy to work out any more. I assumed it was because of Lyme disease. I was infected with that garbage way back in 2005 and had been suffering from its symptoms–lethargy and achy joints–ever since. As a result, I was not too concerned about my health at that time.

It was not until mid-November when my body made some physical alterations that forced me to take note. I was out mowing the grass, typically a three-hour project, when suddenly all of my energy drained from me. I was only about an hour into the job but I had to stop. Football was on so it was not too hard to convince myself to take a break. I made it to the TV room, put on the game and kicked my feet up. Because I was so exhausted, I fell asleep almost immediately but was soon awaken by severe cramping in my left calf and foot. My feet and ankles occasionally cramp up when I sleep so, again, I did not think much about it, even though the cramps continued through most of the afternoon.

When I woke up the next day I had what I thought was a big charlie horse in my left calf. Also, my left ankle was swollen and sore. I wrapped them and off to work I went. This went on for a week when I went to the doctor’s for a check up. I still thought I was suffering from a muscle cramp so that was how I articulated the symptoms to my doctor. He checked out my leg and told me to come back in a week if the condition persisted. The condition persisted and by a week later, my entire calf and ankle had swollen to what seemed was double its size. Back to the doctor I went. My doctor was not available so I was seen by my wife’s doctor. By this time I knew I was not suffering from a muscle cramp. I thought that perhaps I got bitten by a bug or some other poisonous critter and that is what I told my wife’s doctor. She took one look at my leg and without hesitation told me that I was suffering from blood clots.

Blood clots!? What the–! What is a healthy, forty-four year-old guy like me doing with blood clots? I do not eat too much junk. I do not smoke. I drink too much wine and coffee perhaps, but is seems that they should thin my blood, right? And what the heck did I do all that working out practically all year for if I still ended up with blood clots? I did not have too much time to reflect in the doctor’s office because she immediately sent me off to the emergency room. On my drive over, I did reflect. More accurately, I stressed out on the fact that I may soon be on blood thinning medicine, perhaps even the same medicine that my father is on. I was still battling with my current state of affairs when I limped my way in to the emergency room.

Posted on 11 Comments

Bloodwish

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.

Posted on 10 Comments

Donor Update – 1/11/10

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.

Posted on Leave a comment

My Hickman Line

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]

Posted on 3 Comments

My Doctor’s Explanation

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.

Posted on 3 Comments

My Doctor's Explanation

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.

Posted on 1 Comment

It’s Not Lymphoblastic!

Today, during a visit with my doctor to discuss Phase Two of my treatment, my doctor threw me (as well as my wife and daughter who were with me for the visit) for a serious loop. He started off immediately by explaining that after further analysis of all of my tests, I now have, and always have had, Chronic Myelogenous Leukemia (CML) in Bilineal Blast Crisis instead of Acute Lymphoblastic Leukemia (ALL), which I was my original diagnosis. I am still stuck with the Philadelphia Chromosome abnormality. That has not gone any where.

Nothing changes though, as far as my treatment goes. I will continue to take the drugs that I have been taking for Phase One of my treatment (I still need to list those on my Treatment page), and beginning Wednesday, January 13, 2010, I will begin taking about four more additional chemotherapy drugs to bring my counts back down. After my counts are brought back down again I will have another bone marrow biopsy. Oh yeah, I must not forget the fun of another four lumbar pulls (AKA, spinal taps) during the upcoming phase. Fun, indeed. Better yet, it’s a Blast Crisis!

So, in the end, nothing really changes but the name. There are consequences for the impact on my disability claims, though. I have already completed the paperwork and identified my disease as ALL. I guess there will be some backtracking to do there.