Multiple Myeloma Diagnosis

Matt here, Chelsa's husband. In the midst of a pretty overwhelming time, Chelsa and I have decided to set up this blog to share what's going on (and to help us keep track of it ourselves as we process this).

On Wednesday, May 18th, 2011, Chelsa was diagnosed with Multiple Myeloma (a form of Bone Cancer).... a diagnosis that has left us in a bit of shock, with many questions, and clinging to our faith that the Lord will walk us through this (John 14:27).

Here's some of the back story...

Chelsa and I were married on 12/11/10... it was AWESOME! We had an Amazing Honeymoon to Hawaii. In March, Chelsa decided to take a break from her graduate studies at SPU to spend some time training in a counseling program at our church. She was added to my health insurance plan and on March 7, 2011, visited a Naturopath (Dr. Amanda Heep) due to some frequent headaches and whether she may have any allergies (for years she's avoided dairy due to headaches & stomach trouble). After some blood tests, Dr. Heep contacted us to say that an abnormal amount of protein showed up in the blood and Chelsa should see a medical doctor to investigate further.

We met with Dr. Jeanne Cawse-Lucas, who suggested a few more blood tests and re-tests (including CBC with DIFF(ABS), Smear Evaluation Blood, Phosphatidyl Antibodies, Anti Smooth Muscle AB (ASMA), Anti DS DNA). Dr. Cawse-Lucas recommended we see a specialist.

We continued on to Dr. Fitzharris, who recommended more tests, including a Bone Marrow Biopsy (which was very painful due to only using a local anesthetic), and a Fat Pad Biopsy.

On Wednesday, May 18th, 2011, Dr. Fitzharris diagnosed that Chelsa 100% has Multiple Myeloma, a currently incurable form of bone cancer. Dr. Fitzharris scheduled a follow-up full skeletal survey (x-rays) and CAT/PET Scans to assess what damage the Multiple Myeloma has done to her body.

It turns out that she has likely had this cancer in her bone marrow for 4+ years already, stemming back to 2007 when she saw many doctors after experiencing some numbness in her legs, a diagnosis was never reached during that time. While the cancer has been with her for a while, the x-rays and scans have shown that it has not done much damage to her body thus far (praise Jesus!).

However, Dr. Fitzharris let us know that the cancer is "aggressive" on a molecular level, it is thus referred to as "Smoldering Myeloma." From what we understand, this basically means that the cancer is unpredictable, it could lay dormant for a few years, or choose to begin aggressively attacking the body at most any time.

So what is Multiple Myeloma?

Multiple myeloma is cancer of the plasma cells in bone marrow. Plasma cells normally make proteins called antibodies to help you fight infections. In multiple myeloma, a group of abnormal plasma cells (myeloma cells) multiplies, raising the number of plasma cells to a higher than normal level. Since these cells normally make proteins, the level of abnormal proteins in the blood also may go up. (This is how we found the disease). Health problems caused by multiple myeloma can affect bones, immune system, kidneys and red blood cell count.

How does Multiple Myeloma get treated?

While no cure exists, it sounds like there is much being learned and developed in terms of treatment. Of course, none of the treatment options we discussed sound very appealing, there are some of the top experts right here in Seattle, and it looks like there is much still being learned about it, including some clinical studies through the UW.

The way we understand our current treatment options are:

1) Observation: Given that the Myeloma hasn't really been doing damage to her body yet, one option is to wait until symptoms show up. This would mean visiting the doctor every few weeks to do tests, the hard part being that if/when symptoms show up, they will show up doing damage that may be irreversible.

2) Prescription Meds: The drawbacks here are that there are dangers associated with the drugs for Myeloma, they have side-effects, and why take them if it hasn't started doing damage to her body yet? Also, it would take 2-5 years to determine how successful this medication was in getting rid of the myeloma, meanwhile Chelsa would be infertile and unable to have babies.

Here's a bit about the drugs:

• Bortezomib (Velcade). Bortezomib was the first approved drug in a new class of medications called proteasome inhibitors. It is administered intravenously. It causes cancer cells to die by blocking the action of proteasomes. It is approved for people with newly diagnosed and previously treated myeloma.

• Thalidomide (Thalomid). Thalidomide, a drug originally used as a sedative and to treat morning sickness in the 1950s, was removed from the market after it was found to cause severe birth defects. However, the drug received approval from the Food and Drug Administration (FDA) again in 1998, first as a treatment for skin lesions caused by leprosy. Today thalidomide is FDA approved for the treatment of newly diagnosed multiple myeloma. This drug is given orally.

• Lenalidomide (Revlimid). Lenalidomide is chemically similar to thalidomide, but because it appears to be more potent and cause fewer side effects, it is currently used more often than thalidomide. Lenalidomide is given orally. It is approved for people with previously treated myeloma, but is also often used in people with newly diagnosed disease.

From what I understand, this would be what we hear referred to as Chemotherapy and would be given in cycles over a period of months, followed by a rest period. "Often chemotherapy is discontinued during what is called a plateau phase or remission, during which your M protein level remains stable. You may need chemotherapy again if your M protein level begins to rise."

3) Stem Cell Transplant: This would first be tried with Chelsa's own bone marrow. From what I understand, the marrow would be sucked out, a high-dose treatment of chemotherapy (melphalan) would be pumped in to kill the cancer, then her own healthy blood cells/stem cells would be put back in to replace the diseased or damaged marrow spots. This is first tried with her own bone marrow, and then with that of a donor.

4) Stem Cell Donor Transplant: This would be the above process with someone else's blood/bone marrow. The issue here would be that it can take a long time to find a donor. The doctor asked if Chel has siblings or parents that could provide this -- both her parents are alive and she has two half-siblings, but it doesn't necessarily mean that any would be a match. The process of finding a matching donor can take a very long time, so we may need to make some decisions about this soon. (?)

There are more severe treatments that could come up, but would be more likely if the cancer started to aggressively attack Chel's body, this would be like Radiation Therapy, where they would target an area that the myeloma cells are forming a tumor that's causing pain or destroying a bone and blast it with radiation.

Basically, we're VERY BLESSED to have received this diagnosis when we did because it has not done serious damage to Chelsa's body and we have a lot of options for fighting it.

What about starting a family?

This question has been a very difficult one to address. As if there weren't already enough risks and worries involved with having children, we do not know when this disease could begin attacking Chelsa's body. So, we could try to have a child now, but what if it begins attacking after she is pregnant... we wouldn't be able to fight it with the treatments. Or what if it attacks shortly after the child is born? What if she starts the drugs after the child is born and the side effects make her very sick?

If we choose to wait and try the drugs before having children, the doctor told us it would take 2-5 years to tell whether the drugs are successful. They would also make her infertile, potentially forever. We are having a "baseline" test done to tell where she is at now in order to better figure out whether she could have children after treatment. We also spoke to a fertility clinic (which was very overwhelming). They said the standard for cancer patients is to have an Embryo frozen so that it can be placed in the womb after the cancer is treated to then be grown and birthed. Another possibility is to have the Eggs frozen, to be placed back in the womb after treatment in hopes that they become fertilized in to a baby. This is a lot to consider. While we are told that the process of extracting eggs / creating an embryo is fairly standard and fairly low-risk, it is still a pretty big deal. It's very expensive ($10-12,000?) and not covered by insurance. We also need to consider our beliefs and spend some time in prayer for whether this would be what God wants for us, versus trying to begin a family on our own terms. Not to mention, I would need to have my swimmers tested for health as well (this could potentially make our decision very easy if I'm not fertile). I feel a bit overwhelmed even typing this.

In Summary...

Not exactly what we had planned for our first year of marriage, but God is providing none-the-less. I firmly believe that He knows each and every one of the days we have here, that He has a place for us in the story that He's writing, and that He loves Chelsa and I and will faithfully take good care of us. While God's Word never promises that we will have easy lives, or even long lives (ie. see the life of his son Jesus), He does promise that he is faithful and will strengthen us and protect us from evil (2 Thessalonians 3:3). He also promises that he hears our prayers (1 John 5:14-15).

So Please Pray for Us!

What can you do?

Currently, there isn't anything to do. Thankfully, my insurance (Regents Blue Cross) through working at the UW is pretty good. The bills would already be pretty insane, so it has been a huge provision that we have the insurance. My supervisors and coworkers are also a blessing - the are very supportive. I have been able to attend all of Chelsa's appointments so far. It is another huge blessing to have Chel's Mom just a few blocks away to help as well, and an awesome sister and brother-in-law. I'll let Chelsa tell you more about them.

So while it would be nice if there was something we could do, the most that can be done right now is to PRAY. We will not be shy to ask for money if that becomes a concern, will certainly be seeking advice (though it would be nice to mostly keep it to this blog as we don't want this disease to define us or be all we talk about), and we will certainly be asking for your prayers and company on a regular basis.

Currently, we are asking that you please pray for the following:

1) HEALING: Please pray that the Lord takes this Cancer away from Chelsa's body completely.

2) TRUST & ACCEPTANCE: Please pray for both of us to accept whatever happens, that we do not turn to anger or despair, that we appreciate God's many blessings in our life and find joy in Him, and that we trust that He will give us the strength, endurance, patience, and love that we need. Specifically, I struggle with worry about not being a dad and having a legacy of children. While I find it hard to believe that God would let the world be deprived of the beautiful children Chelsa and I (okay mostly Chelsa) would make, I would appreciate prayers of acceptance for the Lord's will and timing in the matter, and against the temptation toward entitlement or bitterness.

3) GUIDANCE: Please pray that we receive clear guidance on how to proceed. Specifically, we are going to seek a second opinion from another doctor and could use guidance on who to see. We also could really use guidance on what to do in regard to our desires to start a family --- whether to exercise patience, dive in head first and full of trust, to be planfull in making preparations that could open up more possibilities in the future, or to focus more on serving other families. In addition, we could use prayer for what sort of treatment to pursue, when to pursue it, where to pursue it (with what doctor/medical center), and how to plan.

Thank You So Much Everyone. Please feel welcome to leave us comments, questions, prayers, and/or advice. We will do our best to update this often in order to keep you well informed.

Jeremiah 29:11 - "'For I know the plans I have for you,' declares the LORD, 'plans to prosper you and not to harm you, plans to give you hope and a future.'"

Resources:

John Piper: "Don't Waste Your Cancer" (blog), "Christ and Cancer" (audio), "If God Wills Disease, Why Should We Try to Eradicate It?" (blog), "How can I comfort my brother whose daughter has cancer?" (audio)

Matt Chandler: Pastor of Village Church in Texas who had a seizure and was diagnosed with Brain Cancer on Thanksgiving 2009. "One Year Later" (blog)

This is a series of video-blog updates from him as he has walked through this with his family:

http://www.youtube.com/user/villageChurchTX#g/u

This one is right before his brain surgery, two weeks after the seizure, really powerful stuff:

http://www.youtube.com/watch?v=SMerKVKssQU&feature=mfu_in_order&list=UL