Is Campath my Path?

During the holidays, Paul and I both took some time off from research.  For one reason, we needed a mental break.  Secondly, there isn’t much to decide until the donor is found.  However, the last time we met with Dr. O’Brien, the head of the CLL department at MD Anderson, she mentioned that when the time came she was leaning toward Campath as my front line regimen.  So I thought I would resume my research in preparation.  WARNING:  This may be boring.  :)

Campath, also known as alemtuzumab, is a monocolonal antibody that targets an antigen known as CD52, a common antigen (protein) found on B and T cells (part of the body’s immune system) on the surface of mature lymphocytes but not on the stem cells from which these lymphocytes are derived.  When the Campath antibody attaches to the CD52 antigen, the body’s immune system is activated to destroy these targeted cells in the blood and bone marrow.  Since the CD52 antigen is also present on healthy B and T cells, treatment will temporarily weaken the immune system and care must be taken to protect against infection during treatment.

Campath works in an entirely different way from traditional chemotherapy, which kills rapidly dividing cells.  Unfortunately, that includes healthy cells as well as cancerous ones.  Since monoclonal antibodies target only specific cells, they may cause less toxicity to healthy cells.  Monoclonal antibody therapy is usually given only for cancers in which antigens (and the respective antibodies) have already been identified.

Campath has been proven especially useful in cases with p53 deletions (ie. my 17p deletion), which are otherwise resistant to treatment.  Campath is particularly important because it stays active in the body for a long time after it is given, which means it may work longer to prevent GVHD symptoms. 

Possible side effects include 1) a reduction in blood counts (white and red blood cells and platelets), which can increase the risk for infection, anemia and/or bleeding; 2) infusion reactions such as fever, chills, nausea, rash, etc.; and 3) weakening of the immune system that can lead to serious infections.  Less common side effects include cough, muscle pain, poor appetite, mouth sores, headache, numbness or swelling of hands and feet, dizziness, weakness, etc.

Dr. O’Brien also mentioned the possibility of a “mini-transplant,” also referred to as a non-myeloablative or reduced-intensity transplant.  While there is nothing “mini” about the transplant itself, the pre-conditioning regimen is less toxic.  A mini-transplant uses lower, less toxic doses of chemotherapy and/or radiation to prepare the patient for an allogeneic stem cell transplant.  The use of lower doses of anticancer drugs and radiation eliminates some, but not all, of the patient’s bone marrow.  It also reduces the number of cancer cells and suppresses the patient’s immune system to prevent rejection of the transplant.  In a traditional myeloablative transplant, the goal of the conditioning regimen is to kill as many cancer cells as possible and to suppress the immune system of the patient to allow the donor cells to grow.   

With the non-myeloablative transplant, cells from both the donor and the patient may exist in the patient’s body for some time.  Once the cells from the donor begin to engraft, they may cause the GVL (graft vs. leukemia) effect and work to destroy the cancer cells that were not eliminated by the anticancer drugs and/or radiation.  To boost the GVL effect, the patient may be given an injection of the donor’s white blood cells.  This procedure is called a “donor lymphocyte infusion.”

The advantages of non-myeloablative transplants are that they are better tolerated.  The disadvantages are that they rely mainly on the GVL effect. 

The mini-transplant is not without risks.  Some cells in the mixture given to patients also recognize healthy cells, thus triggering an undesired immune response called graft-vs.-host disease (GVHD), in which donor cells recognize the patient's healthy cells as foreign, sometimes resulting in destruction of healthy tissue.  Survival rates among patients who receive a mini-transplant range from 30 percent to 70 percent, depending on the underlying disease, disease stage and whether the patient has other illnesses at the time of treatment.

The use of Campath, or alemtuzumab, following reduced-intensity conditioning and unrelated donor conventional transplantation has been associated with durable engraftment and significant reduction in GVHD but at the cost of impaired immune reconstitution and increased infectious complications.

For more information, as well as an interesting read, on stem cell transplants, visit the CLL Topics blog listed below.

http://updates.clltopics.org/1323-stem-cell-transplants-are-they-worth-it-part-i

With regard to donor updates, I spoke to my MUD Coordinator and learned a few new things.  First, Paul’s HLA info came in and he was very disappointed not to be my match.  I told him that he IS my match…just not for my bone marrow!  F-42 has removed herself from the list.  M-22 is again unavailable.  A new M-24 who was also previously unavailable is now available and being sent a request.  The best news was that a new M-47 has already had his blood test and MD Anderson has received it for testing.  More on that in about a week.  We still have the first donor option, F-22/13 of 14/with the DP antibody issue.  I did learn that I have numerous DP antibodies, so the likelihood of finding a donor with no antibody issues is minimal.  The “fix” for that is either Rituxan and/or plasmapheresis,

Plasmapheresis is a process in which the fluid part of the blood, called plasma, is removed from blood cells by a device known as a cell separator.  The separator works either by passing the blood at high speed to separate the cells from the fluid or by passing the blood through a membrane with pores so small that only the fluid part of the blood can pass through. The cells are returned to the person undergoing treatment, while the plasma, which contains the antibodies, is discarded and replaced with other fluids.   Medication to keep the blood from clotting (an anticoagulant) is given through a vein during the procedure.

So for now, the wait continues.  My pain meds are keeping me at a fairly even keel, with only occasional increases in intensity.  I still get tired and need my daily nap.  I still push myself too much some days and then regret it the next….  I am trying to incorporate a little work to keep my brain occupied with something other than this and to see if a bit of extra income might come our way.  I enjoy the kids and grandkids as often as possible.  And I stay more and more in His word and before the throne. 

I truly believe that God is in this and will bring me through. 

“For it is God who is at work in you, both to will and to work for His good pleasure.” Philippians 2:13

Donor Update

Several have asked for a donor update and explanation of how the “one” is chosen.  First of all, the second possible donor, who was scheduled to do their blood test on December 21, cancelled.  It could have been holiday timing or a change of mind.  However, I learned today that it was a 22 year-old male, which fits in the “best option” category.  My MUD (Matched Unrelated Donor) Coordinator said that while male transplant patients do not always fair well with female donors, female transplant patients often do the best with a male donor.  I think it may have something to do with the antibodies that women make with each pregnancy.  So my MUD Coordinator is going to make a second request to M-22 (male, 22 years).

Another 10 of 10, who was previously unavailable until after December, is now noted in the system as available.  That person is a 23 year-old male.  My coordinator is going to send a request for a blood sample from him as well.  (Everyone she is asking for blood samples are already a 10 of 10 match according to their mouth swab.  MD Anderson does further testing to determine more extensive matching, possible antigens, etc.)

If neither M-22 nor M-23 responds, there is a M-53 and a F-42 next on the list, and a M-31 and F-21 from overseas.

So why can’t we just go with the F-22 who is 13 of 14 with the antibody/antigen issue?  It goes back to engraftment.  If the transplant doesn’t take, my organs can simply shut down.  Because my disease is stable for the time being, they are able to continue the search for the BEST match.  We have read many articles and blogs of folks who did not fair well post transplant, so it is important to eliminate as many obstacles as possible.  The better the match, the better my odds of coming out of this thing alive and well.

Our prayer this week is that both M-22 and M-23 would respond so MD Anderson can do the necessary tests, with the hope that one of them might be the “one.”  Thank you for praying with us.

Waiting expectantly…

Tamara

The Dawning of a New Year

God can show us so much through His creation.  While watching the first sunrise of 2012 from our porch in the country, the sun’s rays stretched up from the horizon, reaching toward the heavens to illumine our world.   Those rays give us the hope of a bright new day.

Many are looking for rays of hope during the coming year.  2011 has been laid to rest with its blessings and its challenges.  2012 is still a blank slate, awaiting its text.  Some are hoping for new job opportunities.  Others are praying for renewed relationships.  Many struggle with finances.  Countless just need direction.  For me, as well as many others, the hope is related to our health.  And for all of us, there is a period of waiting.

These last few months brought great change to our lives with greater change coming.  We are still waiting for the best donor match for my transplant.  We wait to see how quickly my disease progresses.  We wait to see when the transplant process will begin.  We wait to see how my body will respond. 

Whether you are waiting for a job, for guidance, or for a transplant, the waiting itself can be difficult.  The weight of waiting can be heavy.  So I went to the source of all comfort, of all guidance.  May these verses help light your way.

My 2012 Verse:  “I remain confident of this:  I will see the goodness of the LORD in the land of the living.  Wait for the LORD; be strong, and let your heart take courage; wait for the LORD!”  

Psalm 27:13-14

“But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.”  Isaiah 40:31

"I am waiting for the Lord, my soul is waiting for Him, and my hope is in His Word." Psalms 130:5 

"When I was waiting quietly for the Lord, His heart was turned to me, and He gave ear to my cry." Psalms 40:1

"Now may the God who gives comfort and strength in waiting make you of the same mind with one another in harmony with Christ Jesus…" Romans 15:5

“Truly my soul waiteth upon God: from Him cometh my salvation.”  Psalm 62:1

“My soul, wait in silence for God only, for my hope is from Him.”  Psalm 62:5

“But as for me, I will watch expectantly for the LORD; I will wait for the God of my salvation.  My God will hear me.”  Micah 7:7

“Let integrity and uprightness preserve me; for I wait on thee.”  Psalm 25:21

“The LORD is good unto them that wait for Him, to the soul that seeketh Him.”  Lamentations 3:25

“For since the beginning of the world men have not heard, nor perceived by the ear, neither hath the eye seen, O God, beside thee, what He hath prepared for him that waiteth for Him.”  Isaiah 64:4

“Our soul waits for the Lord; He is our help and our shield.  For our heart is glad in Him because we trust in His holy name.  Let your steadfast love, O Lord, be upon us, even as we hope in you.”  Psalm 33:20-22

“May you be strengthened with all power, according to His glorious might, for all endurance and patience with joy.”  Colossians 1:11

The Gift

In the Christmas season, more than any other, we strive to find the perfect gift for those we love.  We wish we could find that one thing that would bring utter joy and delight, something that would never be forgotten. 

Everyone has his or her own way of shopping.  Some stay in the Christmas mindset all year, finding gifts in April or June that they tuck away until December.  Others are all about finding the best deals.  There are those who actually enjoy the competitive shopping of Black Friday, while others avoid the crowds by sticking to the internet.  Many now utilize wish lists, which fairly guarantees that the “right” gift was purchased.  I still prefer surprises.  But that can be a tall order every time. 

This year, we did manage one surprise that turned out to be truly delightful.  We refinished my daughter’s great grandmother’s piano for her family to enjoy.  Hearing their squeals and seeing the joy in their eyes and Granny’s piano back in service was a gift back to us.  But that was a rare opportunity. 

Not many of the gifts that are given really last or remain etched in our minds.  The movies and games, toys and trinkets, gadgets and gizmos while always appreciated tend to fade with time.  What are the gifts that last, that endure, that can make a difference?  What gifts are bigger than the boxes we wrap them in?

It all starts with what Christmas is all about, the gift of our Savior.  God gave up His eternal companionship with His Son for Him to be born of, live among, and die for mankind. 

John 1:1-5  “In the beginning was the Word, and the Word was with God, and the Word was God. He was with God in the beginning. Through him all things were made; without him nothing was made that has been made.  In him was life, and that life was the light of men.  The light shines in the darkness, but the darkness has not understood it.”

Isaiah 9:6  “For unto us a child is born, unto us a son is given: and the government shall be upon his shoulder: and his name shall be called Wonderful, Counselor, The mighty God, The everlasting Father, The Prince of Peace.”

Philippians 2:4-7  “ Your attitude should be the same as that of Christ Jesus: Who, being in very nature God, did not consider equality with God something to be grasped, but made himself nothing, taking the very nature of a servant, being made in human likeness.”

So what are the gifts that cannot be wrapped in pretty paper and ribbons?  The gift of time.  The gift of kindness.  The gifts of love, laughter, forgiveness, humility, patience, and service.  The gift of a smile, a thoughtful word, a tender touch, a knowing look. 

I’m sure that my husband would have enjoyed something other than spending two days in the kitchen with me, but he chose to devote his time to chopping, measuring, shaping, and dipping Christmas goodies and preparing recipes to share with family and friends because he loves me and wanted to give the gift of time together. 

My daughter would probably prefer to play her new piano without interruption, but she will patiently share her knowledge and love of music with her child so that she can love it too.

My granddaughter probably won’t remember her first ride on a ferris wheel, but she will remember cooking with her Tadee, working in the yard, tickles and hugs in the morning, and prayers, stories, and songs at night. 

The two people who have been tested to see if they are a good match for my transplant have chosen to be available to give the gift of healthy cells, the gift of life, to someone they don’t even know.   (We’ll know more results next week.) 

We can focus on what we get or on what we give.  In reality, the gift of giving is the greatest gift you can give yourself.   In giving comes great rewards.   Spend time with people you love.  Enjoy a child.  Value your elders.  Listen to the stories of both.  Look for the beauty in each day, in each person. 

When the paper and bows are thrown away and the tinsel and trimmings are tucked back in their boxes, the gifts that will be remembered are the gifts of you.

Merry Christmas, and may you enjoy the gifts of one another in the New Year.

A Match? Or Everything You Ever Wanted to Know About HLA Typing but was Afraid to Ask!

I spoke with my MUD (Matched Unrelated Donor) Transplant Coordinator this morning, and she had good news and not so good news.  Because the not so good news was difficult to comprehend, I am going to provide some details to HLA typing that might help those who are wanting to more fully understand what all is going on.

The good news was that the person who went in for their blood test last week was not only a 10 out of 10 match but was even better at 13 out of 14.   Some facilities require 6 of 6, 8 of 8, others 10 of 10.  The more markers that match the better the results.  MD Anderson looks for 10 of 10 or better.   So 13 of 14 is really good.

What are these “markers?”  Human Leukocyte Antigen (HLA) typing is used to match patients and donors for bone marrow or cord blood transplants (also called BMT).  HLA are proteins — or markers — found on most cells in your body.  Your immune system uses these markers to recognize which cells belong in your body and which do not.

Several of you have also asked the difference between a bone marrow transplant and a stem cell transplant.  Basically not much except for how they retrieve the stem cells.  Bone Marrow Transplants (BMT) or Stem Cell Transplants are done to restore the body's ability to produce the different cells that make up the blood.  Bone marrow is the spongy tissue inside large bones.  It contains immature stem cells.   Stem cells mature to become red blood cells that carry oxygen, white blood cells that help fight infection, and platelets that help stop bleeding.  In a bone marrow transplant, the donated stem cells are taken from bone marrow.  In a stem cell transplant, the donated stem cells are taken from circulating blood.  Bone marrow donation is a surgical procedure done in a hospital.  The donor is given anesthesia; then a needle is used to remove marrow from the hip bone (similar to a bone marrow biopsy).  Peripheral blood stem cell donation is done in an outpatient setting.  The donor is given medication over several days to increase the number of stem cells in the bloodstream.  Then a needle is inserted into an arm vein to draw out the blood.  The blood passes through a cell separator machine that removes the stem cells.  The rest of the blood is returned immediately to the donor.   This is the now the more common procedure.

The not so good news is where it starts getting confusing.  When mine was tested, they discovered that I have HLA antibodies in the DP (more on this shortly).  The antibodies are similar to the resistance we develop to Chicken Pox after we’ve had it.  That’s a good thing with Chicken Pox.  But if I have a resistance to a part of my donor’s cell makeup, it could inhibit engrafting.  Engraftment is when the donated cells start to grow and make new blood cells.   A close HLA match reduces the risk of a post-transplant complication called graft-versus-host disease (GVHD).  GVHD occurs when the immune cells from the donated marrow (the graft) attack your body (the host).

There are several groups of HLA markers.  MD Anderson primarily looks at A, B, C, DR, and DQ.  My antibodies are on DP, which most facilities don’t even test.  But because MD Anderson looks for the best match at a detailed level, my antibody situation will be a factor to consider.  If this 22 year old female with 13 of 14 matches ends up being the best match available, then there are extra steps that can be taken at time of transplant to help overcome the antibody issue.  For now, they will continue to search for the best match and keep this one on the back burner. 

For more information on HLA typing, here are a couple helpful sites.

 

http://en.wikipedia.org/wiki/Human_leukocyte_antigen     

http://marrow.org/Patient/Transplant_Process/The_Donor_Selection___Transplant_Process.aspx

The lack of a fully matched donor (8/8 matched, i.e., matched at HLA-A, -B, -C, -DRB1) does not preclude transplantation as a possible treatment option, because transplant outcomes are generally better when patients are transplanted earlier in their disease rather than later.

The NMDP (National Marrow Donor Program) therefore recommends not delaying transplant in the hopes of finding a better matched donor later. The NMDP bases this recommendation on a 2007 study of 3,857 transplants demonstrating that 6/8 patients transplanted in an early disease stage do better than fully matched 8/8 patients transplanted in advanced disease stage. [5] Because disease stage at the time of transplant is the only factor under direct control of a physician, an early referral is perhaps the single most important step that can affect survival. (See the NMDP Clinical Fact Sheet on Outcomes in Unrelated Hematopoietic Cell Transplantation for additional data.)

 (Taken from BeTheMatch.org.) 

With that in mind, I am going back to my local oncologist tomorrow, and then we will meet with my transplant doctor on January 2.  The MUD Coordinator will keep the transplant doctor and the head of the CLL department in the loop with regard to possible donors.  The doctors at MD Anderson were very pleased with our proactive approach.  While it is scary to say the least, the potential for long-term survival is greater with this plan. 

I think that this past month of increased fatigue has helped me begin to accept what the next year or so is going to be like.  I am learning my limits, and while I still push them often, I now know how far is far enough.  As I wrote on an earlier post, we continue to prepare.  It doesn’t feel like much sometimes, but it is all I can do right now.  Prepare and pray.  Pray for the right donor.  Pray for the right timing for the transplant.  Pray that the right pre-transplant treatment is chosen.  Pray that my body accepts the transplant.  Pray for no infections.  Pray for Paul and my mother as they provide care for me before, during, and after.  Pray for continued positive attitude.  Pray for peace.

“And the peace of God, which surpasses all understanding,

will guard your hearts and your minds in Christ Jesus.”  

Philippians 4:7

The Weight of the World…and a Possible Donor

How do you carry the weight of the world when extra pounds keep piling on?  As a cancer patient, the fear of the unknown is a daily battle.  As a cancer patient with uncommon components, the unknown is a bit greater.  It is easy to read and quote the Scriptures that talk about laying down our worries and letting our Savior carry us through, but it can be more difficult to actually do it on a moment-by-moment basis. 

As a mother, I worry (no, let’s say that I am mindful, prayerful, and thoughtfully concerned) about each of our children…their relationships, their jobs, their finances, their families, their health.  I am concerned and prayerful for my grandchildren, especially Dana with her failed hearing tests.  As a wife, whatever troubles my husband troubles me…whether it’s his back, his job, or his commitment to make everything right for me.  As a daughter, sister, cousin, aunt, niece, and friend, I pray and follow the medical, emotional, relational, financial, and overall needs of those I love.  There are those dealing with everything from the trivial to the traumatic, from simple to life threatening.  They all matter. 

How do we compartmentalize all that is in our hearts and minds?  How do we carry the load?  How do we lay it down?

In my thoughts this morning, I admitted that I am worried about finding a donor.   And I’m worried about what will actually happen when they do!  It’s scary to consider the reality of going through the transplant process and embracing the variety of possible outcomes.  The last conversation with my Transplant Coordinator revealed that she had sent four requests but no one had yet responded.  Today, she told me that one went in for his/her blood test yesterday and we should have the results by next week.  She said that it looks positive so far, and that once we have a confirmed donor it could take as little as four weeks to move forward with the transplant.  Wow!

It's hard to stay focused when I'm tired.  It’s hard to push myself when I don’t know what tomorrow holds.  Of course, I don’t suppose any of us know what tomorrow holds!  We just take one day at a time, thankful for His daily provision of grace.  I stand with you in prayer for the spoken as well as the unspoken requests on your heart.  Thank you for standing with us as well.

"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light."  Matthew 11:28-30

"Behold, God is my salvation; I will trust, and not be afraid: for the LORD JEHOVAH is my strength and my song; He also is become my salvation."  Isaiah 12:2

"An anxious heart weighs a man down, but a kind word cheers him up."  Proverbs 12:25

“Cast your burden upon the LORD and He will sustain you; He will never allow the righteous to be shaken.”  Psalm 55:22

"So do not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own."  Matthew 6:34

"God is our refuge and strength, an ever-present help in trouble."  Psalm 46:1

“Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.”  Philippians 4:6

“Indeed, the very hairs of your head are all numbered.  Do not fear; you are more valuable than many sparrows.”  Luke 12:7

“And my God will supply all your needs according to His riches in glory in Christ Jesus.”  

Philippians 4:19

A Shot of Rum

When I was 17, I smoked one, actually only a portion of one, cigarette.  I was mad at my parents about trying to enforce some sort of restriction (parents do that) when I wanted freedom (teenagers want that).  I felt the relaxation from that one indulgence permeate my entire body.  I knew right then that I would never smoke another because that’s why people get addicted to those things!  I also realized that eventually it would take more than just a portion of one cigarette to accomplish the same feeling.  So that was the end of smoking.

Tonight, I had a similar experience with a shot of rum.  I have been so excited to have Paul home taking vacation time this week.  But each day I have had increasing discomfort.  As I am apt to do, I wanted to make the most of each moment…work on projects together, decorate for Christmas together, get our gifts selected and wrapped together, have lovely meals together, and just spend that precious commodity of time…together.  And we have, some.  But mostly, I just don’t feel very well.  I don’t want to take my nap when he’s home.  What was it that I used to say?  “You can sleep when you’re dead!”  Doesn’t seem quite so appropriate anymore.

Anyway (my brother will cringe because I used that segue, but that’s a whole other story), back to the rum.  I have been taking two Motrin PM every night just so I can sleep.  It’s been working fairly well.  But the more tired I get during the day, the worse my nights are.  It sort of feels like what I imagine “restless leg syndrome” must feel like, except all over.  I lay there trying to coax myself into rest to no avail.  Then I feel guilty about feeling bad because I imagine that my mom’s RA, my cousin’s peripheral neuropathy, not to mention my dear husband's back pain, probably feel quite similar.  I, however, can eventually get a bone marrow transplant and feel better…after a while.  They can’t.  Of course, I guess most folks don’t die from RA either.  But I digress.

Back to the rum.  I finally just could not stand it anymore and got up to find something, anything that might help me relax and get some sleep.  So I open the cupboard and pour a shot of rum, warm it up a bit, and sip it down.  I could feel its warmth permeate my entire body.  Then I realized, just like when I was 17, that this is why folks get addicted to this stuff too!  Ugh! 

So what is one to do?  The Transplant Coordinator continues her search for a donor.  And I wait.  I want to wait with dignity, with a smile, with laughter in my voice, with confident hope in my heart.  I want to enjoy every moment with my family and friends.  I have packed and planned tons of fun into this last month of the year not certain what the next will bring.  But it’s difficult to fully embrace each moment when I just don’t have the energy because of the nagging drain of the ache. 

So my prayer request is simple.  Please pray that I can rest without rum, that I can enjoy as many moments as possible, that I will be patient, and that I will be a good girl and take my nap.