Day +35 Philadelphia Translocation Chromosome

For fear of sounding redundant, my numbers continue to improve. My ANC is 2350 and my white count is over 3,000. I am well on my way, but still await news about my donor vs patient blood test that I had done last Thursday. Apparently it's pretty involved and the results don't come quickly.

I started on Gleevec again yesterday and although I know it's my reality it feels weird to be putting chemotherapy in my body again. The side effects have been mild and once my body adjusts I won't even know I'm on it. Gleevec is a "Smart Drug" and targets a particular abnormality that I happen to have and which caused my leukemia, (aren't I special) known as the Philadelphia Translocation Chromosome (Ph+ Chromosome) - named for the city in which it was discovered in 1960. Ninety-five percent of patients with Ph+ have or will get CML (Chronic Myeloid Leukemia).

If you remember I started out with CML (probably years ago), that eventually progressed to the blast-crises phase of ALL (Acute Lymphocytic Leukemia). The Gleevec that I started taking in March and continued taking until I went in the hospital on May 20th literally kept the blast-cell phase of ALL at bay. That and the bone marrow transplant will continue to do that. Unfortunately, I will always have the Philadelphia Chromosome (and the potential to get CML) in my body. The bone marrow transplant cannot take that away, but because Gleevec targets that particular chromosome it can be kept in remission.

Each chromosome is made up of genes which are like a set of instructions that tells the cells of the body what to do. The Ph+ Chromosome forms when two normal chromosomes break and parts from each broken chromosome switch places. This results in 2 mixed chromosomes - one of which is the Philadelphia chromosome. This change is know as translocation. The Ph chromosome is an abnormally short chromosome 22 that is one of the two chromosomes involved in a translocation (an exchange of material) with chromosome 9. This translocation takes place in a single bone marrow cell and through the process of clonal expansion (the production of many cells from this one mutant cell) it gives rise to leukemia. The discovery of the Ph chromosome was landmark and is the first consistent chromosome abnormality found in any kind of malignancy. Who knows where this discovery could lead.

Translocation makes several unusual things happen. First, a new, abnormal gene called acr-abl forms during translocation. Then, the abnormal gene makes an abnormal protein called Bcr-Abl tyrosine kinase. This abnormal protein tells the bone marrow to make more white cells than it needs to with this abnormal protein and is the underlying cause of Ph+CML. If this abnormal protein is kept under control, the number of white cells decreases, keeping the disease under control. To prevent disease reactivation it is necessary that the abnormal cells are suppressed to minimum levels at all times as some abnormal cells may still remain in my body even if they are too few to be measured -that is why I need to take Gleevec for the rest of my life.

People like me, with Philadelphia chromosome positive myelogenous leukemia (Ph+CML) will have a treatment approach which is different from that of patients who lack the abnormal chromosome. The same holds true of people with other leukemias. Fortunately, the Philadelphia chromosome cannot be passed on to descendants because it is an abnormality which occurs during cell division and is only present in the bone marrow not in the germ cells which dictate genetic inheritance.

So, that is my story up until now. I'll continue to write at least weekly. Hopefully, I won't have any "exciting" news to tell. Thanks for "listening" - it means a lot.

Day +28 Going Good

Things continue to look up for me. My counts climb steadily every day. Today my counts are 30.2 Red/3530 White/88K Platelets/ANC 2020. I feel good most of the time, but find my tiredness meter dips to low quite frequently. I did however get to spend some time on our boat this weekend. It was theraputic to talk with some old friends and to be out doors in beautiful weather.

On Thursday, I'll be getting a special blood test to determine how much patient and how much donor my marrow is right now. The docs want to see all donor marrow at this point. They will also test for T-cell counts - not quite sure why, but I'll find out. These tests are routine as I approach Day +30 which is a big deal and major milestone in the world of bone marrow transplants. It's quite possible I'll only have to go to clinic a couple of times per week, I get to stop my anti-viral meds, and I'll get my driving priviledges back. Yipee!

Day +20 Life At Home

It's official - I'm home and so very happy to be here. My ANC was only 137 on Saturday so I was quite surprised that the docs released me. They usually prefer to keep patients until it reaches 200, but Dr. Jones said he had to look at the entire picture and how well I had done overall. Since then I have been visiting the clinic each day and my numbers as of today are great - 33.3 Red/1010 White/42K Platelets/ANC 525! Good Numbers for not even reaching Day +21 yet! My medications include an anti-viral and tomorrow I start on Bactrim another type of antibiotic. After my counts become more established (around Day +30) I'll start on Gleevec once a day - the oral chemotherapy medication that I was taking before my BMT. I'll be on Gleevec for the rest of my life.

Since being home I am more tired than ever though. The confines of my room at JHH were nothing compared to steps and dressing for clinic each day. Although Ray is taking good care of me, I am exhausted and nap every afternoon. I'm told it's all quite normal and that I should give in to it and enjoy it while I can. I am.

Day +17 Hooray!

My numbers are getting better and better everyday. 30.8 Red/390 White/30K Platelets/ANC 117 today. Good bone marrow from my big brother and my own strong body have blended nicely in bringing me to this point of wellness. I am so incredibly grateful! My team was just in and it looks like I will be discharged tomorrow if my ANC reaches 200. I am so pleased. They said that because I am leaving way earlier than most BMT patients, I should not to be surprised if I spike a fever or have a small set back and have to re-admitted at some point. I'm not counting on that, but it's good to know that it's not unusual. Now, while all this is good news, it's not to say that my saga is over - it's not - far from it. I'll have a year of added precautions and limitations, so it looks like there are many obstacles still to come and overcome. I've been given a "discharge book" that lists all kinds of limitations and possible problems that can be expected over the next 12 months. I'm entering another phase - a new normal so to speak. But, I believe that my new normal will be filled with wonder and excitement - new beginnings, new perspectives, new adventures.

Thanks for all of your prayers, good mojo, and positive thoughts that you've sent my way. Please don't stop, I still have a long way to go and believe that I wouldn't have fared so well without them. A sincere "thank you" for your support and encouragement through it all. It would have been so hard without you! I know that something good and wonderful will come of this - that your support will not be in vain - I've had a lot of time to think since my diagnoses - you can't imagine the ideas that are whirling around in my head right now.

I intend on keeping up with this blog, updating every couple of days or so. Heck, you never know what might happen. I'm not wishing for it, but I could become medically interesting at some point, so tune in from time-to-time to see how well I'm progressing.

Again, my thanks for hanging out with me for so long.


Love, Bev

Day +16 Good News Day!

My numbers are good today - 28.7 Red/240 White/31K Platelets/ANC 48!!!! Yeah!!!

In rounds this morning, the team told me that they think my numbers are real and that I will probably go home sometime this weekend! Just what I want to hear. I am so excited you can't imagine. Instead, I'll make daily trips to the IPOP Clinic. That's all I can write about now, remember, I'm medically boring!

Days +14 and +15

My numbers for yesterday, Day +14 are (23.8 R/80 W/37K P/ANC 0). I was told by the Resident Doctor that I am "medically boring". I think I'll take that as a compliment!

Today - Day +15 - I received two units of blood last night since my reds were low yesterday. My numbers today don’t reflect the new red count, but they are encouraging nevertheless. 23.9 R/120 W/34K P/ANC 0. My whites are rising, but I’m afraid to get too encouraged by that. We’ll see what tomorrow brings.

My mouth sores are still bothering me and I have a little bit of a sore throat from them. That is my only complaint, well, that and I want to go home!!! Twenty-two days is quite enough.

Day +13 We're Getting There!

My numbers are good today (26.0 R/80 W/47K P). Now, don’t go thinking my white cells are on the rise already – it might be a little too soon for that and besides, anything under 100 is considered zero. But I continue to feel the healing effects and believe that I am growing stronger each and every day.

However, I did receive some startling news today from Dr. Carraway, my oncologist. I found out that I will be on Gleevec for the rest of my life. I was really taken back by that, but have come to realize that it’s no different than any other preventative medication that people around the world take everyday - Zocor, Tricor, Cuminum, etc. My oncologist thinks it unwise to take the chance of having a single rogue cancer cell divide and multiply, putting me in jeopardy once again. Although I’m a little unnerved and haven’t learned all the ins and outs of what that means exactly, I have little choice but to follow doctor’s orders.

The good news about Gleevec, known as a “Smart Drug”, is that it targets only leukemia cells not other fast growing cells like hair follicles as other chemotherapy’s do. It goes right to chromosome 99,2, the Philadelphia translocation chromosome and kills any cancer cells that may grow.

Days +11 and +12

Day +11 - My mouth sores are still around, but have not gotten any worse – if anything they have improved. I am careful to rinse my mouth many times per day with a saline solution provided.

I got 2 more units of platelets last night. Tell me, why do platelets have to be infused at 4:00 AM? My counts today are 28.6 R/60 W/ 9K P – you can see why I needed platelets. After receiving platelets, my count rose to 76K - super platelets I guess!

I am growing more accustomed to my baldness. I’ve found if I plaster a smile on my face it helps my overall appearance while elevating my spirits. I yearn for long silky tresses.

My appetite has returned somewhat and I’m not really losing any weight at this point. The docs like that – they encourage eating and exercising. I walked 25 laps today = 1 mile.

Day +12 - I am feeling good this morning after a pretty good nights sleep - well at least as good as you can get in a hospital. My blood pressure is low and there is concern over whether or not to change my atrial fib medications. It's always something!

I really do feel like I am on the upswing and that my body is healing. I have been here 18 days so far and feel like things are going to turn around in the very near future. Call me over zealous - I don't care - I simply feel changes taking place in my body - and they're all good! My counts are 25.3 R/70 W/60K/ANC 0.

Day +10 Miscellany

My hair was starting to fall out rather quickly yesterday, so I decided to bite the bullet and get my head shaved. Whew! I’m glad that’s over. It was much harder than I ever dreamed. I feel as though I look like a little old man and I am not happy. I know this is just one more step in the many that I have to take to get to the end of this nightmare, but it's not easy. My hair will grow back (it takes 6 months to 1 year to grow back a full head) and in the scheme of things it’s a small price to pay. But, I’ll warn ya – I’m sensitive about it, so no bald jokes!

My counts today are 27.2 - Red; 70 - White; 16 K - platelets (after receiving one unit last night); with an ANC of O. Keep watching the white count - it will go even lower as I tend towards bottoming out. I am still on my usual antibiotics, anti-fungals and all the other stuff they are giving me.

I now have mouth sores (mucositis). They started out looking like little blood blisters and then they just turn sore. Sometimes they swell a little. Mine are located in the back, kinda where my jaw hinges, so it prevents me from opening my mouth too far. Right now I feel like I have the beginnings of a sore throat. We all know what that feels like. So far, they are tolerable and I've been told there are soothing and numbing medications if necessary.

A Couple of Things

My ANC hit zero today where it will likely hover for 7-14 days. Geez, that is a long time! When my ANC starts to rise and reaches 500 I'll be released. Statistically, patients do much better at home than they do in the hospital so if there is an upward trend and all else is okay I'm told that often a doc will release early. Once released I’ll have to come in to clinic every day to have my counts checked (and attended to if necessary) and whatever else might be needed.

As many of you have asked, Brad is feeling well after struggling for a couple of days to work through the effects of his anesthesia and not taking his regular meds, etc. He is feisty as ever and has already started making a list of things that I can do to repay him!!! For the serious minded – I’m only kidding!

My hair is beginning to fall out slowly but surely. I am finding small remnants here and there around my room and in the bathroom. Guess it’s just a matter of time. I’ll post a picture – maybe!

I have lost about 12 pounds since I've been here, mostly in the last ten days. Sometimes food is just not appealing although I'm encouraged to eat as much as I can tolerate. Patients are also encouraged to walk laps around the unit everyday. It's a little boring and I am one of a few that is well enough to do it, but is good to get out of my room, is good for my lungs and overall well being.

Vancomycin Resistant Enterococci (VRE) - Enterococci are germs that are carried by everyone in their gut – along with numerous other bacteria. These bacteria can sometimes cause infections. Vancomycin is an antibiotic that is often used to treat infections caused by enterococci. In some instances, enterococci have become resistant to this drug and thus are called Vancomycin-Resistant Enterococci (VRE).

When I was routinely tested for VRE it was discovered that it is present in my body (colonization). It's very likely that I picked up the germ while here. I am at risk for it becoming an infection because I have a weakened immune system. Because it is colonized I require no special treatment - hopefully the antibiotics I am currently taking will keep it at bay.

If left untreated, VRE can manifest into a bacteria infection in the blood. I know, is this all getting a little too Twilight Zone’ish and dejavu’ish??? A bacteria infection in my blood, vancoymycin!!??!! If you haven’t read my first post or know the story of my leukemia diagnoses you won’t get it, but feel free to go back to read that part.

So, I’m kinda in a quasi-quarantine and will be there until I receive 3 consecutive negative finds. They only test only once a week, but I’m told this will not interfere with my release since my infection fighters will be fired up by then and people at home deal with these types of germs everyday and don't even know it. Since VRE is often passed from person to person by the hands of others anyone who visits will have to be suited and wear gloves as well as the usual mask. This is a Hopkins protocol so that the germ won’t be transmitted elsewhere in the hospital. Ultimately, it’s for the protection of the other patients with suppressed immune systems.

What Blood Counts Mean - from Stephanie

Just a quick overview about what the numbers mean. Every day they are checking Mom’s blood counts. They check the white blood cell count, red blood cell count, platelets count and absolute neutrophil count (ANC). Today they are 32.5-R/110-W/44K-P/ANC-44).

Leukemia is cancer of the white blood cells. In order to cure this disease, they wipe out the bone marrow, which is where all blood cells are created. There is just no way to wipe out only the bad cells, so they wipe out everything. They then give the patient donor bone marrow and wait for the new marrow to grow and make new blood cells.

As we are waiting, we expect low numbers of all the blood cell types. If the red blood cell numbers fall too low (as measured by the hematocrit), then Mom gets blood transfusions. If the platelets are too low, then they can also be given by transfusion.

It is the white count and most especially the ANC that are important in determining when Mom goes home. The ANC is the absolute neutrophil count. Neutrophils are one subset of white blood cells and they are the cells responsible for immunity against infections. Mom needs to have an ANC above 500 in order to go home. Her count today is 44. We expect it to drop to zero in the very near future and to stay there for a while. Then it will gradually rise as the donor marrow begins to take root inside her bone marrow and begin to produce new blood cells.

Once the ANC reaches that magic number of 500, she should be OK to go home. At that point she will still be at some risk for infection, and will have to take precautions like staying at home and wearing a mask around others until her ANC count reaches the 1500-1800 range.

Day +6 Blood Counts

Today was a great day. I woke this morning feeling fully rested and raring to go. It's June 1st afterall.

My counts continue to fall (30.8 Hemogrit/186 White/15K platlets/90 ANC-neutrophil no.). My red cells are hanging tight since I received 2 units of blood yesterday. My platlet count is so depleted (normal is 150K - 350K) that I will probably need a unit by tomorrow. These numbers are from 10 PM Sunday evening so it's possible that the count could drop to 10 or 20K. As my numbers decrease it is imperative that my red cells and platlets are kept at a reasonable level since no one (not even you) can live without either one of them. The number to watch though is my ANC number. That is the one that we'll watch drop to zero and then slowly climb back up to normal levels. I'll be waiting for my new marrow comes to charge in, take over and lead me to a normal immune system! The red cells and platlets will follow suit on their own. YES!!!

What I Might Face in the Days to Come

Mouth sores (mucositis) typically appears 7-14 days after the start of therapy and heals when blood counts return to normal. Mucositis includes redness, dryness, swelling, ulcers and white patches and are a result of high-dose chemo that can temporarily damage some normal cells such as those that line the mouth, throat and gut. The nurses are adament about rinsing with a Sodium Chloride Solution seveal times a day to prevent mucositis - I follow orders well.

Hair loss (alopecia) always occurs following high dose chemotherapy. It begins to fall out 1-3 weeks after the first day of treatment. Since my first day of treatment was May 20th I'm in that time frame. I am a little unsure how I feel about it, but I guess I don't really have any choices now do I? I came preared with some cute hats and have purchased a wig although I haven't picked it up yet. Maybe I'll be the exception. Do I sound like I'm in denial???

Hair begins to grow back 4-6 weeks after the last treatment. I've heard mine might come back gray!