THE ARTICLE

Trisha’s story of surviving Plasma Cell Leukemia

On November 15, 2019 at 29 years old, my world changed forever. I was diagnosed with Plasma

Cell Leukemia. It is basically a hybrid of Multiple Myeloma and statistically only shows in

men over 60. I wanted to be special but not like this! At my 6 week postpartum appointment

with my second babe, my stomach had not been shrinking like it should but I assumed it was

because it was my second baby or the diastasis recti. My OB did a ultrasound and saw a lot of

ascites and that my liver was massive so she instructed I go to the ER as that was not normal.

My ribs had also been really hurting towards the end of my pregnancy but the doctors kept

saying it was Costochondritis.

And so my adventure begins.... I was first admitted to the hospital for a slew of tests to try and

figure out what was going on. The liver doc kept saying it was the heart causing it and vice

versa. One of the last docs to come in and see me was the hematologist to say they had to

check all boxes and sent my blood away to make sure it wasn’t cancer. Cancer! I had not even

thought it could be that! Those results would not be in for a few weeks so I left the hospital

after a week of no answers and we started going to follow up appointments. Nothing wrong

with the liver, nothing wrong with the heart, and the last appointment was at the cancer

center. I half filled out my paperwork because I was telling myself I would not be back so what’s

the point?! Jokes on me! We were told of the diagnosis and I had to do a bone marrow biopsy

right then as well. Everything was happening so fast. That next week I had transferred doctors
to one who specializes in this rare leukemia and that next day I was admitted to the hospital to

start my first round of hard chemo to get it under control. It was at about 65-70% of my body.

They started me on VD-PACE over a continuous drip for 4 days.

Before going to the hospital I had cut my hair shorter in anticipation of losing it all. It did start to

come out so I cut it even shorter and thankfully it held on. That was the one thing I was

dreading the most... not the chemo but my hair. Whether it’s realized or not, a woman’s hair is

what defines her (amongst other things). I also had to stop breastfeeding as you can imagine so

going cold turkey while in the hospital was not pleasant either. Being away from my girls was

more difficult than anything. My husband and I spent Thanksgiving in the hospital and I did get

to see my newborn once but they did not let babies on the oncology floor. I saw my oldest a

few times so that helped too. Once I finished my chemo, my heart started to get a flutter and

my rate hit 200 one night so I was rushed to the cardiac floor but the docs got it back under

control very quickly with amiodarone. Since then, I have had heart problems so that has added

to the worries of it all. I had zero heart issues prior.

I was a perfectly healthy 29 year old when I first got diagnosed. A few blood transfusions and

my levels recovering later, I started dexamethasone, velcade and daratumumab. This was to get

me to a level where I can get an allogeneic bone marrow transplant. I started getting all the

testing done leading to my transplant scheduled for the beginning of May. My latest bone

marrow biopsy showed 20% which meant it was on the rise again and was breaking through my

current regimen. We were devastated with the news and not expecting this setback but we try

and see the positives in everything. My heart needs to heal more! I am now on revlimid,
dexamethasone and Panobinostat with prayers this gets me back down so I can get my

transplant. My next bone marrow biopsy is end of June! This transplant will be my cure!

Thankfully my donor is on standby for a year.

 THE SUMMARY

Trisha, a 29 years old mother, was diagnosed with plasma cell leukemia. This condition is a

hybrid of Multiple Myeloma and is prevalent in men over 60. During her postpartum

appointment on her second baby, they noticed that her stomach is not shrinking and it should

be. Her OB did an ultrasound and found a lot of ascites. She was immediately instructed to be

admitted to the emergency room because the findings were not normal. To clear things up, she

was confined to the hospital and undergone some tests. Doctors of several filed had her

examined. Some of them thought that it may be because of her liver and some said that her

blood must be tested away to detect cancer. Since it takes time to get the results of those tests

she left the hospital not knowing the problem behind those clinical manifestations.

Some of the test results came normal but not on the cancer detection part. Trisha and her

partner were told that she had to do a bone marrow biopsy as soon as possible. She was

transferred to a doctor who specializes in the rare kind of leukemia that she had and started

her first round of chemotherapy to get the condition under control. She was started with VD-

PACE over a continuous drip for about 4 days. Trisha even decided to cut her hair shorter since

she anticipated that it will eventually lose it all. It is one of the things she feels dreadful about.

She felt horrible that she can't even spend her time with her kids. But she also felt a lot better

whenever she had the chance to see them.

After finishing her chemotherapy sessions, her heart suddenly felt flattered and her heart rate

reached 200 bpm one night so she was rushed immediately to the cardiac floor. Fortunately,
the situation was taken under control through the administration of amiodarone. Her heart

developed some problems after what happened. She realized that she was perfectly fine not

until she was diagnosed with the condition. Through a few blood transfusions, she must meet a

level where she can get an allogeneic bone marrow transplant. Her latest bone marrow biopsy

showed 20% which means that it is breaking her goal to meet specific levels. Even though they

don't expect to experience some drawbacks they still managed to become optimistic. Trisha is

taking revlimid, dexamethasone, and panobinostat. These medications and more prayers might

bring her to the transplant that she needs. Her next bone marrow will be in June and hopefully,

this will be the key to cure her condition.