Sunday, November 4, 2012

Pregnancy & Myeloma

This is why I am here! Okay, I began writing this blog post when I first started my blog about a month ago. I have had it in my "drafts" and have been avoiding it like the plague. To be honest, there is not a whole lot of information or research on the topic of pregnancy and its implications for people living with MGUS, smoldering myeloma, or multiple myeloma. Myeloma and pregnancy is really "uncharted territory" as most people diagnosed are beyond childbearing years.

After J and I got married in August of 2011 we started talking about if/when we would have children. We wanted to be married at least a year before we started on the "baby" journey. As I have written previously, after my diagnosis of MGUS in September of 2009, I never thought pregnancy would be an issue. It never even entered my mind!

In April, I was in to see my doctor at Dana-Farber. J and I were thinking of trying to start a family that summer. I saw a research fellow before seeing Dr. R and I asked her if she thought I would be okay to have children, assuming she would say, "Of course!" However, her response was, "If you want to have children, you should make sure to have them sooner than later." I was 28 and thought that I had plenty of time to have kids - but the fact that she said "sooner than later" was a bit unsettling.

When Dr. R came in he said he thought that I would be fine to have children but he wanted me to have a bone marrow biopsy. I had never had a BMB before and this would be for us to be "super careful" and make sure I was stable before conceiving. He said that if the plasma cells were below 5% green light for babies, if the cells were between 5-10% I would need to be more cautious, and if they were 10% or higher I would then be considered "smoldering." We all know how that turned out.

After my biopsy results suggested smoldering myeloma (10-15%), Dr. R said that if I were to become pregnant there was risk that things could progress more rapidly than if I had I not become pregnant. He said the cells have estrogen receptors and my body/immune system would be focusing on taking care of the baby instead of fighting off these cells and could lead to more rapid growth of the "bad" plasma cells. The baby would be fine - myeloma is not passed down from mother to child - they know that much. He said that if I do become pregnant and things start to go "south" with my health (meaning CRAB symptoms - elevated calcium, renal failure, anemia, or bone destruction) I would need to deliver the baby as quickly as possible in order to start treatment.

Margaret, who writes an excellent blog called, Margaret's Corner: Living with Smoldering Myeloma has graciously allowed me to link a post that she wrote about pregnancy here. Please check it out! As you can read on her post, the limited information that she found was not the most encouraging.

I have done my best googling and I have also not found many studies or articles written on this topic. This is what I have found, some of which is the same as on Margaret's post:

Multiple myeloma and pregnancy: a case report and literature review.

Multiple myeloma presenting with spinal cord compression

Haematological cancers in pregnancy
-There is a table in this article that states for asymptomatic myeloma, the suggested approach is "monitor carefully" during all pregnancy stages. For symptomatic myeloma, pregnancy termination is recommended during for the first trimester. During the second and third trimester, suggested treatment is similar to non-pregnant women using chemotherapy. However, doctors should avoid treating with lenalidomide (Revlimid) and thalidomide as they cause birth defects but might consider treatment using bortezomib (Velcade) but fetal toxic affects have not been established. Aggressive cases require early delivery.
 

Renal failure complicating myeloma in pregnancy

Multiple Myeloma and Pregnancy


Obviously, there is a lot of unknowns with my situation. I need to see what my biopsy results are in December. Also, like I have written before, most people are not diagnosed with MGUS at my age. But scientists now know that MGUS always precedes multiple myeloma. However, many women diagnosed with multiple myeloma are in their 50s,  60s, and 70s - and many had children before diagnosis. Which means, if these patients had children in their 20s or 30s and had undiagnosed MGUS and were not diagnosed with active multiple myeloma until 60 or so...maybe their pregnancies didn't affect things. Maybe not. Maybe yes.

8 comments:

  1. Hi Elizabeth, If you're interested in living a long, healthy life and having lots of babies (or even just one), then open your mind, grab some tea and spend some time reading my blog.

    http://curingmyeloma.blogspot.com/

    You're so young and you're health focused, so I thought you might be interested. I'm here in the Boston area too (north shore).

    Take care,
    Theresa

    p.s. love your tree

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    Replies
    1. Hi Theresa,

      Thanks so much for sharing the link to your blog, I will definitely check it out! I am definitely always looking tips to fight this disease.

      Elizabeth

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  2. Hey Elizabeth - thank you so much for this post. I have been trying to fine answers about pregnancy and MGUS but I have not had much success! I am also 28 and I was diagnosed with MGUS in May, after two BMB's. I already have one sin from a previous relationship but my husband and I were thinking of having one of our own. I would love to talk to you more about things/MGUS. The past year has been a hard pill to swallow and it's not often I find someone the same age who is in the place in their lives as I am who too has MGUS. If you ever want to talk feel free to send me an email - Kersey.84@gmail.com :) I wish you the best!

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    Replies
    1. Hi! Thank you for the well wishes and I'm sorry to hear your situation is similar to mine. I will definitely shoot you an email sometime soon - I'd like to hear more about your situation and what your next steps are going to be. Take care, Elizabeth

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  3. Hi Elizabeth
    I hope you get this but I to am in your position and would like to know how things are going. Please email me at marianadacosta1982@gmail.com

    ReplyDelete
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    My Big Kid

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