Susan (Kirin) Smith's fight with Cancer

Not so routine after all

In November 2018, Susan went to the doctor for a routine physical. One of the lab results, the total protein, was high, so more tests were ordered. At this point, I really didn't expect anything was seriously wrong. The next round of tests showed an M-spike (or M protein) and we were referred to a hematologist.

We were told Susan had some level of myeloma: either smoldering myeloma (a precancerous condition), or active multiple myeloma, a cancer of the plasma cells.

We left the hematologist's office and went straight to the hospital for a skeletal survey (basically an x-ray of every bone from head to toe). There was no sign of bone damage so a PET-CT scan was next. In addition to these tests, blood was sent off for further testing.

Near the end of January, all of the tests were negative. Just one last test, the bone marrow biopsy. If there are fewer than 60% plasma cells in Susan's marrow, then she has smoldering myeloma. If it is over 60%, then she has active multiple myeloma cancer. I honestly thought with all the negative tests that it was going to be smoldering.....Susan is healthy and feels fine! She can't have active myeloma!

Well, I was wrong...

The biopsy showed 60-70% plasma cells in her bone marrow and our cancer journey officially began. 

What is Multiple Myeloma? 

Multiple myeloma is a type of blood cancer that affects plasma cells. In multiple myeloma, malignant plasma cells accumulate in the bone marrow (the soft, spongy tissue at the center of your bones), crowding out the normal plasma cells that help fight infection. These malignant plasma cells then produce an abnormal antibody called M protein, which offers no benefit to the body and may cause tumors, kidney damage, bone destruction, and impaired immune function. The hallmark characteristic of multiple myeloma is a high level of M protein in the blood.

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What do we do now?

The treatment plan is 4-6 cycles of Chemotherapy using 3 different drugs, followed by high-dose chemotherapy and an autologous stem cell transplant. 

The regimen consists of Velcade , Revlimid ,  and Dexamethasone. The Velcade is given as a shot in the clinic on days 1, 4 , 8 and 11 of a 21-day cycle, and the others are taken orally at home. Revlimid is taken every day for 14 days followed by 7 days off, and the dexamethasone is taken once a week.

Once the disease has been lowered by about 90%, they will harvest enough of Susan's stem cells for 3 transplants.

After a couple of weeks to recover, she will be admitted to the hospital and given a very large dose of Melphalan, a strong chemotherapy agent, that will hopefully kill all of the myeloma cells. Unfortunately, this will also kill everything in Susan's bone marrow, including healthy plasma cells.

Two days later, Susan will get an infusion of her stem cells. This will start to rebuild her bone marrow and immune system. This treatment will require 2-3 weeks in the hospital.



Once her immune system has recovered enough, she will be allowed to go home. It will take a minimum of 3 months from the stem cell transplant for Susan to recover enough to return to work and a normal routine. 

There is no cure for Multiple Myeloma. But, we are praying for a deep and lasting first remission!

We need your help!

As this process has continued, the costs keep adding up. We do have insurance but the out-of-pocket maximum is $6000 per year and there are many other items not covered by insurance.

I will be on unpaid leave for at least 6 weeks to care for Susan.

Because Susan will be very susceptible to infection after the stem cell transplant, we have already made several improvements to our master bath to minimize the chance of mold or bacteria.

We hope Susan will get back to work at the 3-month mark, but that is not guaranteed.

The other reality is that this treatment is not the end of the story. This is our new normal. Susan will have continued testing and ongoing maintenance therapy until they find a cure.

Please share Susan's story with your friends and family.  Thank you so much for whatever help you can give financially. Every little bit will be a big help. We cherish your thoughts and prayers.

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Rob