George’s Journal

Thanks for visiting. I hope you’re doing well.

September is Blood Cancer Awareness month. Blood cancers include leukemia, myeloma and lymphoma. Non-Hodgkin lymphoma is estimated to be the 7th leading cancer group diagnosed in the US in 2012, while all Leukemia’s account for the 10th most prevalent cancer in the US.

At the bottom of this post, you will find two appendices featuring cancer information gleaned from the Leukemia & Lymphoma Society www.lls.org and National Cancer Institute http://www.cancer.gov.

  • Appendix 1 – Types and forms of blood cancers
  • Appendix 2 – Most common cancer types diagnosed in the US

ROBIN ROBERTS – ABC GOOD MORNING AMERICA’S CO-ANCHOR

You may have heard or read about Robin Roberts’ health crisis over the past few months. Last week, she received a bone marrow transplant (BMT). One of the purposes of this post is to share with you my perspective and insights regarding Ms. Roberts’ experiences and my own so that you may understand the benefit of “stepping up” as a potential donor to the National Marrow Donor Program at www.BeTheMatch.org.

Here’s a link to an excellent ABC News article about Ms. Roberts: http://gma.yahoo.com/blogs/abc-blogs/robin-roberts-mds-bone-marrow-transplant-procedure-explained-114713780–abc-news-health.html.

Ms. Roberts is a very brave and inspirational person. What she is going through is both physically and emotionally taxing. On top of that, she is sharing her experiences with millions of people; thereby providing a tremendous service to all with her valuable insights about the lifesaving procedure of bone marrow transplantation.

The article explains her BMT procedure, and aftermath. Blood cancers and disorders are extremely complicated, as are BMTs, and this information is certainly not comprehensive or definitive; but I will try to shine some light onto Ms. Robert’s BMT and my own.

WHAT ARE THE DIFFERENCES IN THE PROCEDURES?

While Ms. Roberts and I both received what is categorized as an allogeneic bone marrow transplant (someone else’s stem cells injected or infused into you), her disease and subsequent BMT both varied from mine. Obviously, I’m not a doctor, but here are some differences I was able to discern from various articles and news reports:

1) First of all, Ms. Roberts did not have cancer, but rather myelodysplastic syndrome (MDS), a very serious disorder in which the bone marrow fail to produce enough healthy blood cells.

2) She received a non-myeloablative or “mini” allogeneic bone marrow transplant, characterized by low-doses of chemotherapy in a one-week conditioning phase followed by an injection of her donor’s bone marrow or peripheral stem cells. The objective of her BMT was to suppress her own bone marrow by receiving just enough chemo to allow donor cells to engraft and grow within her.

3) My allogeneic bone marrow transplant (ABMT), involved receiving high-dose chemo followed by the infusion of my donor’s bone marrow or peripheral stem cells. The high-dose cancer fighting treatments were given to eliminate the cancer. The infusion of the new marrow or peripheral stem cells during the ABMT replaced the bone marrow destroyed by the chem. Praise God that it worked!

4) Ms. Robert’s sister was her donor (DNA match), while mine was an unrelated, anonymous 40-year old man in Eastern Europe

5) Her BMT apparently lasted 5 minutes and was administered via syringe. My BMT was delivered intravenously (IV), similar to a blood transfusion, and lasted 2 hours.

6) During her procedure, Ms. Roberts had friends and family in her sterilized room. The only other person in my sterilized room at City of Hope was my nurse (Angela), who administered the transplant from 12:30-2:30 am.

As you may recall, at the time of my BMT, May 6, 2010, the cancer in my body was very advanced. I was originally diagnosed November 29, 2001, with a non-aggressive type of Non-Hodgkin Lymphoma called, Follicular Lymphoma.

My disease transformed into the aggressive, life-threatening Diffused Large B Cell Lymphoma, August 2009. Two months prior to my BMT, I was told by my hematologist that, “unless something dramatic happens, you have two months.”

MY PRIMARY BMT SYMPTOMS

Throughout the BMT experience, each patient reacts and responds differently. One thing is for sure, however, the BMT preparation, procedure and aftermath leaves the patient extremely fatigued and highly vulnerable to infections and viruses, which can be life threatening.

My primary symptoms were: extreme fatigue, Neutropenia (low white blood cell count), mouth pain and mucositis, skin rash and severe itching, diarrhea and Graft Versus Host Disease (GVHD) . Graft versus host disease is a condition that is experienced by allogeneic stem cell recipients.

A moderate case of GVHD, in my situation is actually beneficial. As well as attacking your body cells, the donor T (graft) cells also attack any remaining lymphoma cells. Doctors refer to this as the Graft Versus Lymphoma effect (GVL). Even now, over two years later, the GVHD / GVL is good for me (as long as it’s manageable with medication).

Most likely, Ms. Roberts is experiencing many of the above symptoms. And I suspect she is feeling much worse than the media reports suggest. I hope and pray her disease is wiped out and that her recovery goes extremely well.

Among the variables that influence a patient’s experience are, in no particular order: age, overall physical fitness, type of BMT, donor DNA match, disease progression prior to BMT, faith, (positive) attitude, support of family and friends, and the experience and expertise of hospital’s medical team.

EVERY DAY IS A GIFT

Right now, over two years later, my energy and stamina are up to about 75%-80%. It’s a much longer climb back than I thought. Also, I have neuropathy, from all the chemotherapy, in my right leg and foot. The blood clots in my right leg are somewhat manageable with medication.

The symptoms of neuropathy are numbness, cramping and restriction of my mobility. I’ve been athletically active throughout my life, i.e, played competitive football, hockey, tennis, baseball, running, rollerblading. Amazingly, I never experienced a knee injury, or a serious leg, ankle or foot injury. Now, I can barely manage a short jog, and my balance and agility is greatly diminished.

However, these inconveniences and adjustments beat the alternative… Overall, I feel good! My recovery has taken longer than anticipated, and I’ve lost a bit of my athleticism, but I’m so grateful to be alive and cancer-free…no complaints!

COMPREHENSIVE SUMMARY OF BMT SYMPTOMS

Maria Thompson, ARNP-c, is an Advanced Registered Nurse Practitioner Certified and worked at Duke University Medical Center BMT Program for six years. Mrs. Thompson wrote an excellent article that summarizes the symptoms for BMT patients. This article is also the most comprehensive “caregivers guide to symptom management” I found, please click:
http://www.nbmtlink.org/resources_support/cg/cg_symptom.htm.

BE THE MATCH…SAVE A LIFE
I encourage you to please visit the Leukemia & Lymphoma Organization’s site at www.lls.org and join the National Marrow Donor Program at www.BeTheMatch.org. Thanks for reading this blog and please share this link with any cancer patient/survivor and caregiver you know.

God Bless You and Yours,

George

‘With God All Things are Possible.” Matthew 19:26

APPENDIX 1 – TYPES AND FORMS OF BLOOD CANCERS

LEUKEMIA

Leukemia is a type of cancer that affects the blood and bone marrow, the spongy center of bones where our blood cells are formed. The disease develops when blood cells produced in the bone marrow grow out of control. An estimated 44,600 new cases of leukemia are expected in the US in 2011.

Types of Leukemia can be grouped based on how quickly the disease develops and worsens. Leukemia is either chronic (which usually worsens slowly) or acute (which usually worsens quickly):

Chronic leukemia: Early in the disease, the leukemia cells can still do some of the work of normal white blood cells. People may not have any symptoms. Doctors often find chronic leukemia during a routine checkup – before there are any symptoms. Slowly, chronic leukemia gets worse.

Acute leukemia: The leukemia cells can’t do any of the work of normal white blood cells. The number of leukemia cells increases rapidly. Acute leukemia usually worsens quickly.

The types of leukemia also can be grouped based on the type of white blood cell that is affected. Leukemia can start in lymphoid cells or myeloid cells. Leukemia that affects lymphoid cells is called lymphoid, lymphocytic, or lymphoblastic leukemia. Leukemia that affects myeloid cells is called myeloid, myelogenous, or myeloblastic leukemia.

Four common types of leukemia:

Chronic lymphocytic leukemia (CLL): CLL affects lymphoid cells and usually grows slowly. It accounts for more than 15,000 new cases of leukemia each year. Most often, people diagnosed with CLL are over age 55. It almost never affects children.

Chronic myeloid leukemia (CML): CML affects myeloid cells and usually grows slowly at first. It accounts for nearly 5,000 new cases of leukemia each year. It mainly affects adults.

Acute lymphocytic (lymphoblastic) leukemia (ALL): ALL affects lymphoid cells and grows quickly. It accounts for more than 5,000 new cases of leukemia each year. ALL is the most common type of leukemia in young children. It also affects adults.

Acute myeloid leukemia (AML): AML affects myeloid cells and grows quickly. It accounts for more than 13,000 new cases of leukemia each year. It occurs in both adults and children

MYELOMA

Myeloma is a type of cancer that begins in the bone marrow. Myeloma belongs to a spectrum of disorders referred to as “plasma cell dyscrasia.”

It affects the plasma cells and has several forms:

Multiple myeloma is most common: More than 90% of people with myeloma have this type. Multiple myeloma affects several different areas of the body.

  • Plasmacytoma: only one site of myeloma cells evident in the body, such as in the bone, skin, muscle, or lung.
  • Localized myeloma: a few neighboring sites evident.
  • Extramedullary myeloma: involvement of tissue other than bone marrow, such as skin, muscles or lungs.

Doctors divide myeloma into groups that describe how rapidly or slowly the disease is progressing:

  • Asymptomatic or smoldering myeloma progresses slowly and has no symptoms even though the patient has the disease.
  • Symptomatic myeloma has related symptoms such as anemia, kidney damage and bone disease.

LYMPHOMA

Lymphoma is the name for a group of blood cancers that develop in the lymphatic system. The two main types are Hodgkin Lymphoma and Non-Hodgkin Lymphoma (NHL).

In 2011, about 662,789 people in the US are living with lymphoma or are in remission (no sign of the disease). This number includes about 159,846 people with Hodgkin lymphoma and 502,943 people with NHL.

Hodgkin lymphoma has characteristics that distinguish it from other diseases classified as lymphoma, including the presence of Reed-Sternberg cells. These are large, cancerous cells found in Hodgkin lymphoma tissues, named for the scientists who first identified them. Hodgkin lymphoma is one of the most curable forms of cancer.

Non-Hodgkin Lyphoma represents a diverse group of diseases distinguished by the characteristics of the cancer cells associated with each disease type. Most people with NHL have a B-cell type of NHL (about 85%). The others have a T-cell type or an NK-cell type of lymphoma. Some patients with fast-growing NHL can be cured. For patients with slow-growing NHL, treatment may keep the disease in check for many years.

Types of Lymphomas: NHL subtypes are classified by certain factors such as the type of lymphocyte they developed in. The two major subtypes are:

  • B-cell lymphoma
  • T-cell and natural killer (NK) cell lymphoma

Some of the subtype names relate to the lymph node areas (“follicle,” “mantle” and “marginal” zones) they appear to originate in.

B-Cell Lymphoma Subtypes

  • diffuse large B-cell lymphoma (DLBCL) – my 2nd diagnosis 8/09
  • follicular lymphoma – my Initial diagnosis 11/01
  • mucosa-associated lymphatic tissue (MALT) lymphoma
  • small cell lymphocytic lymphoma/chronic lymphocytic leukemia
  • mantle cell lymphoma
  • mediastinal (thymic) large B-cell lymphoma
  • lymphoplasmacytic lymphoma & Waldenstrom macroglobulinemia
  • nodal marginal zone B-cell lymphoma
  • splenic marginal zone lymphoma
  • extranodal marginal zone B-cell lymphoma
  • intravascular large B-cell lymphoma
  • primary effusion lymphoma
  • Burkitt lymphoma-Burkitt leukemia
  • lymphomatoid granulomatosis

T-Cell and Natural Killer Cell Lymphoma Subtypes

  • peripheral T-cell lymphoma, not otherwise specified
  • cutaneous T-cell lymphoma
  • anaplastic large cell lymphoma
  • angioimmunoblastic T-cell lymphoma
  • lymphoblastic lymphoma (can sometimes be a B-cell subtype)
  • NK-cell lymphoma

The most common subtype is Diffuse Large B-Cell Lymphoma (DLBCL); which makes up about 30 percent of all NHL cases in the United States.

NHL Forms: Doctors classify the NHL subtypes into categories that describe how rapidly or slowly the disease is progressing:

Aggressive NHL, also called fast-growing or high-grade, makes up about 60 percent of NHL cases in the US. The most common aggressive subtype is Diffuse Large B-Cell Lymphoma (DLBCL)

Indolent NHL, also called slow-growing or low-grade, makes up about 40 percent of NHL cases in the US. The most common indolent subtype is Follicular Lymphoma.

(I had the 2 most common lymphoma types: Follicular and DLBCL)

APPENDIX 2 – MOST COMMON TYPES OF CANCER IN USA

The below table lists the most common cancer types diagnosed in the United States (excluding nonmelanoma skin cancers) and include the estimated numbers of new cases and deaths for each.

The most common is prostate cancer, with more than 240,000 new cases expected in the US in 2012. The cancer with the lowest incidence is pancreatic cancer, with 43,920 new cases expected in 2012.

Cancer Type Estimated New Cases Estimated Deaths
Bladder 73,510 14,880
Breast (Female – Male) 226,870 – 2,190 39,510 – 410
Colon and Rectal (Combined) 143,460 51,690
Endometrial 47,130 8,010
Kidney (Renal Cell) Cancer 59,588 12,484
Leukemia (All Types) 47,150 23,540
Lung (Including Bronchus) 226,160 160,340
Melanoma 76,250 9,180
Non-Hodgkin Lymphoma 70,130 18,940
Pancreatic 43,920 37,390
Prostate 241,740 28,170
Thyroid 56,460 1,780

References

1. American Cancer Society: Cancer Facts and Figures 2012. Atlanta, GA: American Cancer Society, 2012

2. Chow W-H, Dong LM, and Devesa SS: Epidemiology and risk factors for kidney cancer. Nature Reviews Urology 7(5):245-257, 2010.

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