Friday, March 30, 2007

Not my words...an update coming soon!

"If I did not believe in life, if I were to lose faith in the woman I love, if I were to lose faith in the order of things, even if I were to become convinced, on the contrary that everything is a disorderly, damned, and perhaps devilish chaos, if I were struck even by all the horrors of human disillusionment-still I would want to live, and as long as I have bent to this cup of life, I will not tear myself from it until I've drunk it all!"
~Dostoevsky The Borthers Karamazov

"I would rather be ashes than dust! I would rather my sparks should burn out in a blaze than it should be stifled by dry-rot. I would rather be a superb meteor, every atom of me in magnificent glow, than asleep and permanent as a plant. The proper function of man is to live, not to exist. I shall not waste my days trying to prolong them. I use my time!"
-Jack London

Monday, March 19, 2007

Nietzsche

"Examine the lives of the best and most fruitful people and peoples and ask yourselves whether a tree which is supposed to grow to a proud height could do without bad weather and storms: whether misfortune and external resistance, whether any kinds of hatred, jealousy, stubborness, mistrust, hardness, greed, and violence do not belong to the favourable conditions without which any great growth even of virtue is scarcely possible? The poison from which the weaker nature perishes strengthens the strong man - and he does not call it poison."

Friday, March 16, 2007

Recovery Time

SEATTLE — May 18, 2004

Patients with leukemia or lymphoma who undergo hematopoietic-cell transplantation (HCT) and survive can expect full recovery to take 3-5 years, according to a study published in the May 19 issue of The Journal of the American Medical Association (JAMA).

Hematopoietic-cell transplantation (bone-marrow transplant or stem-cells transplant) is an effective and widely used treatment for hematologic (blood) malignancies. Yet, the rate and predictors of physical and emotional recovery after HCT have not been adequately defined in long-term studies. Improved understanding of recovery could facilitate more accurate informed consent, permit better planning by patients, families, and medical teams, and enable the design of interventions to improve functional recovery.

Dr. Karen L. Syrjala, head of biobehavorial sciences at Fred Hutchinson Cancer Research Center in Seattle, and colleagues conducted a study to examine recovery of physical and mental health and return to work after HCT for treatment of leukemia or lymphoma. Patient function was assessed from pretransplantation to 5-year follow-up for 319 adults who had myeloablative (bone-marrow suppression) HCT for treatment of leukemia or lymphoma. Of the 99 long-term survivors who had no recurrent malignancy, 94 completed 5-year follow-up.

"The impetus for doing this study came from patients telling us that they wanted to know more about what life was like for people after transplant and our own interest in understanding which patients had difficulties in the long term and who did better," said Syrjala. "Now we can take what we learned and help people who are more likely to have a difficult time during recovery. We want everyone to have the best chance for a full life after treatment."

The researchers found that physical recovery occurred earlier than psychological or work recovery. Only 19 percent of patients recovered on all outcomes at 1 year. The proportion without major limitations increased to 63 percent by 5 years.

"An important message to get out to patients, their families and their physicians and nurses is that transplant is not a process that is over when the patient goes home in three months or even in one year, said Syrjala. "There is a physical and emotional process of adjustment that takes three to five years. We want to inform patients and families. It's common when patients have cancer for families to say, okay, we're going to put everything we have into this and then when it's over things will be back to like they were. There is a wish to move on. The patient has that wish too, but the process might take longer than people expect."

Results of this prospective longitudinal study show that recovery after HCT occurs gradually over 1 to 5 years as measured by improvement in physical function, return to work, depression, and treatment-related distress. Given adequate time, 84 percent of survivors returned to full-time work. At some point during treatment or recovery, 22 percent of the patients had symptoms consistent with clinical depression while an additional 31 percent had mild depressive symptoms. Higher levels of depression, lower levels of physical function, and less satisfaction with social support before HCT increased the risk of impaired physical and emotional recovery after the transplantation. Women had increased risk for depression, treatment-related distress, and delayed return to full-time work. Conversely, previous experience with chemotherapy or radiation therapy before beginning HCT seemed to facilitate recovery from the psychological aspects of this intensive treatment.

According to the research team, these results are both encouraging and cautionary. Patients, families, and medical teams depend on accurate recovery data when planning for posttransplant needs. Expectations that contradict actual experience cause stress for survivors and potential conflicts with family, work, and the medical team. To facilitate realistic planning, clinicians and patients should understand that full recovery requires more than a year for most survivors. Patients at risk for delayed recovery can be identified before transplantation. The researchers are now looking at rehabilitation programs that might improve the physical and psychological health of HCT recipients and other patients who have survived after curative treatment for cancer.

This work was supported by grants from the National Cancer Institute.

Media Contact
Susan Edmonds
(206) 667-2896
sedmonds@fhcrc.org

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Fred Hutchinson Cancer Research Center
The Fred Hutchinson Cancer Research Center, home of two Nobel Prize laureates, is an independent, nonprofit research institution dedicated to the development and advancement of biomedical technology to eliminate cancer and other potentially fatal diseases. Fred Hutchinson receives more funding from the National Institutes of Health than any other independent U.S. research center. Recognized internationally for its pioneering work in bone-marrow transplantation, the center's four scientific divisions collaborate to form a unique environment for conducting basic and applied science. Fred Hutchinson, in collaboration with its clinical and research partners, the University of Washington Academic Medical Center and Children's Hospital and Regional Medical Center, is the only National Cancer Institute-designated comprehensive cancer center in the Pacific Northwest and is one of 38 nationwide. For more information, visit the center's Web site at www.fhcrc.org.
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My life as a Vampire


I guess I should start by saying that I am sorry it has been so long since I have posted anything personal here. I could list all the reasons why I have neglected this task, but it boils down to distraction and stress that have kept me from hashing out my thoughts into palpable form.  With my transplant only 10 days away it's time to sit down and work a few things out and get into the habit of posting...it's all downhill from here.

It's been a pretty harrowing past few weeks. I started my third and final ICE chemo on my birthday (02/26 thanks for all the birthday wishes!), which, while not an ideal birthday, was not one of the worst birthdays I've ever had. The nurses were great, with cake, presents and VP-16! It became a birthday with everything everyone always wants; cake, girls, and drugs, lots and lots of drugs! 23 is not a huge hallmark birthday anyway, although I can say that I will be very happy to see my 24! With my last ICE behind me I thought it would be a nice smooth run to transplant, with a whole month to live life before before I descended into the pit of high dose and transplant. Then again, I am never one to do things the easy way, so the past month has been anything but...

The problems started the Monday after chemo (day 7). I came in for counts and found that I was severely anemic and needed a blood transfusion. It's pretty rare to go through so much therapy without needing a transfusion although I was hoping that I would make it until after transplant before I would need blood. Even after all the horrible treatments I've endured a blood transfusion was something I really wanted to avoid. I know it sounds silly at this point, but transfusion seemed like one more step towards being sick, something I've never really seen myself as. Blood was something I couldn't avoid any longer, so I set off to Littleton hospital to get a transfusion, my blood band securely on my wrist and War and Peace under my arm to kill a few hours. In admissions I was told I couldn't enter the hospital with my wrist band- hospital policy. After going back and forth for 5 minutes with the admission lady and getting the head of admissions to come talk to me, I was finally convinced that the hospital had a band for me and I lose this one and still get my blood (no band = no blood) so I reluctantly let her cut my band off. I found my way to my infusion room after being told, again by admissions, to go the opposite side of the hospital. I checked in with the nurses and was left sitting for the next 45 minutes to wonder what was the hold up. The nurse finally returned to inform me my blood was ordered (Littleton doesn't have a blood bank) and that it would arrive in 2 to 4 hours! Being the patience guy that I am I told her that was fine and sat down to read. Four O'clock finally rolled around ( I checked in at noon)  and a new nurse came in and told me my blood was there and that she needed to see my arm band. I said okay and showed her the arm band that admissions had given me. She looked puzzled and asked me where my blood bank band was. To my dismay I found that I had been right to be suspicious of Admissions removing my band. In order to get my blood I needed that band and do to hospital policy I now would have to be re-typed and crossed, before I could get a transfusion, something that could take hours. I had already been sitting for hours and was ready just to go home and try again tomorrow, but I NEEDED blood. I was very pale, dizzy, and my heart was beating like a freight train. I told her to go head with the new type and cross; I would wait for the blood. Everything finally done around 7:30 and I got my blood over a 4 hour infusion, putting me out of the hospital well after mid-night hoping I would never need blood again.

Days 7 through 10 of my chemo is always the worse. My ANC  (immune system) drops to zero, I get a fever and spend the next few days in the hospital to be watched. I made it to the evening of the 9 day, going to bed so glad that I had made it! On day 10 my counts would start to recover and I would be fine, or so I thought. I woke up around mid-night running a very high fever (103) with chills, called the doctor and went to Littleton hospital to be admitted. By the morning I was feeling pretty good, evidently I had had a transfusion reaction that had proceed to "eat" up all the blood I had gotten the Monday before (this was Thursday now).  A few units of blood and I would be fine. The blood arrived around noon and I started the transfusion, and my troubles. In the first 20 minutes of the infusion my blood pressure dropped to 88 over 22 (I am a normal 115 over 65 kinda of guy). My Onc was called and he decided to send me down to the ICU so I could be watched more closely. Over the next three days I "drank" up 7 units of blood and 2 units of platelets and had a wonderful allergic reaction to one of the anti-biotics. I also managed to gain 16 pounds in water weight which left me looking like a water balloon. No infection were found, although all my doctors agree that I probably had one. I was finally released on Sunday afternoon just in time for a fun week of pre-Stem Cell Transplant test at Children's Hospital. CT on Tuesday with a liter of Gastroview (think about drinking chalk), PET on Wednesday, more Platelets and a broviac/bone marrow scrape on Thursday, PFT's on Friday. On top of that, the CT and PET came back inconclusive. There is a small uptake on the PET, not consistent with my disease but enough to keep me from being declared in remission, something I was really hoping for before transplant. Bone marrow was clean but my Pulmonary Function test sucked. I scored in the low 70's, making my lungs the biggest obstacle I'll have to overcome to regain my life as a musician/hiker/road biker.

It hasn't been all bad. I had a nice party on Saturday will over my friend, although it makes it seem very real to think I that won't see most of them until after July. The bassoon studio up at CU (my Alma mater) also held a benefit that was a great success.

It's coming and it can't be stopped...finally seems real

Wednesday, March 7, 2007

Chemo and your Brain


From Harvard Health Publications
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Medical Encyclopedia


Many people undergoing chemotherapy complain of problems with memory, attention, and concentration — a phenomenon called “chemobrain” or “chemo fog.” When we first wrote about chemobrain in October 2002, most of what was known of it came from the anecdotal reports of patients, often breast cancer survivors, and a few studies linking chemotherapy (but not surgery or radiation) to cognitive problems.

Researchers suggested potential explanations, including the sudden chemotherapy-induced onset of menopause, multiple medications — perhaps in combination with age-related changes in the brain — or brain damage from high doses of chemotherapy drugs. Subsequent research has shown that not all chemotherapy recipients have trouble with mental function, but for those who do, the effect can last several years. Thus far, a physiological explanation for chemotherapy-related cognitive trouble has remained elusive. But two studies may help fill in the gap.

Japanese researchers used magnetic resonance imaging to show that cancer drugs can cause temporary shrinkage in brain structures involved in cognition and awareness (Cancer, Jan. 1, 2007). The brain imaging was performed on three groups of women: breast cancer survivors who had received chemotherapy, breast cancer survivors who had not undergone chemotherapy, and a healthy control group. Compared to the other women, the chemotherapy recipients had less white matter (information-transmitting cells) and gray matter (information-processing cells) in regions of the brain involved in attention, planning, judgment, remembering, and self-awareness. Shrinkage in these areas correlated with generally lower scores on measures of attention, concentration, and visual memory. The encouraging news for women receiving chemotherapy is that within three years, follow-up scans showed no differences among the three groups.

The second study, by scientists at the University of Rochester Medical Center, found that three cancer drugs (cisplatin, carmustine, and cytosine arabinoside) used for a range of cancers tend to be more toxic to healthy brain cells than to cancer cells (Journal of Biology, Nov. 30, 2006) — at least in laboratory cell cultures. In the lab setting, these drugs killed 70%–100% of brain cells — but only 40%–80% of cancer cells. Animal studies showed that such effects lasted for at least six weeks after treatment. The drugs harmed various types of cells, including neurons that contribute to signal transmission in the brain.

The University of Rochester team speculates that these cancer drugs may block new cell formation in the hippocampus, a brain structure essential to memory and learning. The researchers stress that no one should avoid chemotherapy because of these preliminary results. But they suggest that their findings offer a physiological explanation for chemobrain and could eventually lead to ways of protecting the brain during chemotherapy.

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Last Updated: 02/07
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Good thing my days of cisplatin/carboplatin are behind me!!

What is a Stem Cell Transplant?

I found this on a fellow SCT's blog and thought it might be helpful-Thanks Anne!

When you think of a transplant, you may have an image of a major surgical procedure to replace a diseased organ. But stem cell transplants don't involve surgery. And the "organ" involved is bone marrow — not a solid organ such as a liver.

If your bone marrow stops working, your body won't produce enough healthy stem cells. And that means you may not have enough healthy white blood cells, red blood cells or platelets, putting you at risk of life-threatening infections, anemia and bleeding.

A stem cell transplant is the infusion of healthy stem cells into your body. If all goes well, these healthy stem cells take hold in your body and begin normal production of blood cells.

Although the procedure is generally called a stem cell transplant, it's also known as a bone marrow transplant or an umbilical cord blood transplant, depending on the source of the stem cells.

What are the reasons for a stem cell transplant?

Stem cell transplants are used to treat people whose stem cells have been damaged by disease or treatment of a disease. Stem cell transplants can benefit a variety of both cancerous (malignant) and noncancerous (nonmalignant) diseases.

For instance, in aplastic anemia, a noncancerous condition, your bone marrow stops making enough new blood cells. A stem cell transplant destroys the dysfunctional marrow, and healthy stem cells are infused. If all goes well, the new stem cells migrate to the marrow and begin working normally.

Similarly, in leukemia, the unhealthy bone marrow is destroyed because it doesn't work properly and may contain cancer cells. When healthy stem cells are transplanted, normal cell production can resume. In addition, immune factors in the transplanted cells may help destroy any cancer cells that remain in your bone marrow.

How do you prepare for a stem cell transplant?

Usually you remain at home until your transplant is actually scheduled. During that time, your health care team may recommend that you work on building up your strength and maintaining a healthy diet.

Pretransplant tests and procedures

Once donor stem cells become available, you undergo many tests and procedures to assess your health and the status of your condition, and to ensure that you're physically prepared for the transplant.

In addition, an intravenous (IV) catheter is typically surgically implanted, usually in your chest near your neck. This is often called a central line, and it usually remains in place for the duration of your treatment. It's through the central line that the transplanted stem cells will be infused. The central line is also used to collect blood samples, give chemotherapy, provide blood transfusions and even supply nutrition when necessary.

The conditioning process

After you complete your pretransplant tests and procedures, you begin a process known as conditioning. During conditioning, you undergo chemotherapy and possibly radiation in order to:

Destroy cancer cells

Suppress your immune system so that your body doesn't reject the transplanted stem cells

The type of conditioning process you undergo depends on a number of factors, including your disease, overall health and the type of transplant planned — whether you get stem cells donated from someone else (allogeneic transplant) or whether the stem cells come from your own body (autologous transplant).

Conditioning generally occurs in the week leading up to your stem cell transplant. In some cases, you receive high doses of chemotherapy and total body irradiation (TBI). On the other hand, you may receive only high doses of chemotherapy and no radiation at all. The type of conditioning you undergo depends on your unique circumstances.

The conditioning process may be done in the hospital or on an outpatient basis. It can cause numerous side effects and complications because your bone marrow and stem cells are destroyed in anticipation of the transplant, and even if your conditioning process is outpatient, you may need hospitalization for side effects.

Side effects of the conditioning process can include:

Nausea and vomiting
Diarrhea
Hair loss
Mouth sores or ulcers
Infections, such as pneumonia
Bleeding
Infertility or sterility
Premature menopause
Anemia
Fatigue
Cataracts
Organ failure, such as heart, liver or lung failure
Secondary cancers

You may be able to take medications or other measures to reduce such side effects.

'Mini' stem cell transplants

A less intense conditioning process is available through what's known as a "mini" stem cell transplant. It's also called a reduced-intensity conditioning transplant or a nonmyeloablative transplant.

Reduced-intensity conditioning doesn't try to kill all of the cancer cells that may be in your body. Instead, it relies on the donor's immune system cells to fight your cancer cells.

A less intense conditioning regimen may seem attractive because it may pose fewer life-threatening complications. But this kind of transplant isn't appropriate for all situations. Mini stem cell transplants are typically used only for people who can't endure the harsher conditioning regimen, such as older adults or people in poorer health, and for people whose disease isn't rapidly progressing. In some cases, they may not be as successful as full transplants.

What can you expect during a stem cell transplant?

Stem cell transplants are typically performed in specialized medical centers. These centers generally have dedicated transplant units, with a team of specialists caring for you. This team often includes doctors, transplant nurses and coordinators, mental health professionals, occupational therapists and dietitians.

Stem cell transplantation involves infusing, or injecting, donor stem cells through your central line. This usually takes one to five hours. The transplanted stem cells make their way to your bone marrow cavities, where they begin creating new bone marrow and stem cells. It can take several weeks, though, for your blood counts to begin recovering.

If you receive bone marrow or blood stem cells that have been thawed, you may notice an odor wafting in your room for a day or two after the transplant. This is caused by the substance used to preserve the cells.

Just before the transplant, you may have received medications to reduce the side effects the preservative can cause. These side effects include:

Nausea
Fever
Chills
Hives

Not everyone experiences side effects from the preservative, and for some people those side effects are minimal.

What happens after a stem cell transplant?

As you wait for your new stem cells to begin functioning, you will be at risk of such complications as infections and bleeding. In addition, you may still be recovering from problems related to conditioning.

Depending on your treatment protocol, you may stay in the hospital until your blood counts recover or you may return home but remain under close medical care. Some people who have inpatient transplants are able to leave the hospital within three to five weeks, but others may face much longer hospitalizations. Some transplant facilities require transplant recipients to remain nearby for 100 days to allow close monitoring.

In the days and weeks after your stem cell transplant, you may have many of the same kinds of tests and procedures to monitor your condition that you had before the transplant. You may also need supplemental nutrition to compensate for nausea and diarrhea.

To combat various complications, you may need to take numerous medications. You may also need periodic transfusions of red blood cells and platelets until your bone marrow begins producing enough of those cells on its own.

It usually takes about a full year for your blood cells and immune system to recover to normal levels. In general, recovery from a stem cell transplant that uses your own harvested stem cells is quicker than one that uses donor stem cells.

Preventing infections

During hospitalization and once you return home, you must take special precautions to prevent infections.

These precautions include:

Wearing a filtration mask to protect against airborne bacteria and viruses

Avoiding contact with people who have any symptoms of illness, including colds

Avoiding crowds

Avoiding zoos, parks and areas heavily populated with birds

Not swimming or using a hot tub

Having someone else clean your home, particularly bathrooms and sinks

Be alert for signs of infection and report them immediately to your health care team. Such signs may include feeling ill, loss of appetite, nausea, fever, runny nose, sore throat or cough.

Home-based care

With your blood counts recovering, you should begin feeling better. Mouth sores and diarrhea may go away or become less severe. Your appetite may improve and you may begin feeling physically stronger. Even after you go home, you'll need regular medical care to monitor your condition, though. Your health care team will provide instructions about any special care or precautions to take once you're home.

Emotional and lifestyle issues

The diagnosis of a life-threatening illness can generate enormous stress for you and your family. Coping with side effects, prolonged periods of isolation, low energy and limited activity can lead to feelings of anger, grief and depression. These are normal responses to a prolonged and sometimes difficult treatment period.

Members of your health care team can address the emotional aspects of your stem cell transplant. Physical and occupational therapists can advise you on relaxation, increasing your endurance and exploring new activities. Mental health professionals, social workers and chaplains can help you cope with anxiety and depression, and help you remain positive.

What are the risks of a stem cell transplant?

A stem cell transplant poses many risks of complications, some potentially fatal. Although some people experience few problems with a transplant, others must endure frequent tests and repeated hospitalizations.

Complications that can arise with a stem cell transplant include:

Graft-versus-host disease
Stem cell (graft) failure
Organ damage
Blood vessel damage
Cataracts
Secondary cancers
Death
Balancing the pros and cons of a stem cell transplant

A stem cell transplant can cure some diseases and put others into remission. Most people who have a stem cell transplant expect the procedure to extend their life, and it often does.

Some people sail through stem cell transplantation with few side effects and complications. Others experience numerous problems, both short- and long-term. The severity of side effects and the success of the transplant vary from person to person.

Most people who have a stem cell transplant and don't have a relapse of their disease go on to enjoy a good quality of life. Many are able to return to work or school and resume their normal activities.

Before having a transplant, make sure you understand the risks and benefits, and how your own situation will affect your transplant experience.

Tuesday, March 6, 2007

You ever feel like a test rat?

Got my pre-transplant check-up list today. Looks like a busy week ahead


Name: Darrel Hale Dates of Evaluation: March 12-16 Admit: 3-26-07

Date Time Place Test/Procedure


3/13 8:00 Radiology 1st Fl. CT Scan Neck/Chest/Abd; Chest X-rays; scans at 9:00
NPO at 6:00 – arrive at 8:00 for oral contrast

3/14 1:00 Hem/Onc/BMT Clinic Lab Tests

3/14 1:15 Hem/Onc/BMT Clinic Meet RN re cultures for w/u (15 min)

3/14 1:30 Hem/Onc/BMT Clinic History & Physical with Dr. Giller

3/14 3:00 Hem/Onc/BMT Clinic Line Teaching

3/15 12:45 Presurgery – 2nd Fl. Central Line Placement – procedure @ 2:45; Bilateral Bone
Marrow Aspirate/Biopsies – NPO milk/solids at 5:30 am,
clears okay until 12:45 (Need to confirm NPO orders)
3/16 11:00 Hem/Onc/BMT Clinic Dietary Consult

3/16 12:30 PFT Lab 3rd Fl. PFTs

3/16 1:00 MSSC – 3rd Fl. Pulmonary Consult

3/22 9:15 Audiology Pavilion Audiogram

3/22 9:45 Cardiology 4th Fl. EKG & Stress Echocardiogram (eat light/ wear tennis shoes)

3/22 1:00 Hem/Onc/BMT Clinic Meeting w/Becky Kissane to review consents.

3/22 2:00 Hem/Onc/BMT Clinic Meeting w/Missy Christensen, CPNP re patient/parent education (1/2 hour)

3/22 2:30 BMT Unit Tour 5th Fl. BMT Unit Coordinator (3986)

3/22 3:00 Hem/Onc/BMT Clinic Meeting with Social Worker

Private dentist Dental Clinic - 2nd Fl. Dental Consult



*Labs: CBC, Coags (PT/PTT/Fibrinogen) total protein, Ca, phos, Mg++, lytes, CMP, GGT, Urinalysis, quantitative serum immunoglobulins (G,A,M); Sed Rate; IL-2R Level.

Urine culture for bacteria, fungus, CMV, and adenovirus. Creatinine clearance (24 hr. urine collection). Stool Culture for bacteria, fungus, yeast. Nasopharyngeal swab for fungus/yeast.

Viral serologies: CMV screen (IgG & IgM titers if screen is ), Varicella titer, HSV-IgG titer, EBV titers, HIV-1&2. Hepatitis B Surface Antigen, Hepatitis B Core Antibody, Hepatitis C Antibody, RPR, HTLV-1&2. Specimen for cell and serum bank (30 cc defibrinated peripheral