[Cheryl G]

Pregnancy and multiple myeloma

by Cheryl G on Tue Feb 09, 2016 11:48 am

Some of you who have been participating in the forum for a while will recall that there have been a couple of forum discussions about pregnancy, multiple myeloma, and also some of the earlier stages of the disease (MGUS and smoldering myeloma). Examples of such discussions include:

"28 Female - Borderline MGUS / smoldering myeloma" (started Aug 30, 2012)
"MGUS and pregnancy" (started Feb 4, 2014)
"Pregnancy after myeloma treatment? Anyone had a baby?" (started Dec 5, 2011)

I thought it worth pointing out, then, that a new study has been published about pregnancy and multiple myeloma. The study is a joint effort by myeloma specialists at several different institutions, including Dana-Farber, the John Theurer Center, the University of Wisconsin, and a couple of centers in Poland.

The abstract of the study gives a good summary of its findings, so I won't both trying reduce it down to just a few bullet points. I will note, though, that it does mention one finding that I thought was interesting:

Although some authors postulate that pregnancy might lead to progression of multiple myeloma, data are limited and no consensus on this point has been reached.

Here is the reference:

A Jurczyszyn, "Multiple Myeloma in Pregnancy – A Review of the Literature and a Case Series", Clinical Lymphoma, Myeloma & Leukemia, epub Nov 29 2015 (abstract)

And here is the abstract:

Multiple myeloma typically affects older patients with a median age at diagnosis of 67 to 70 years and only 3% of cases are diagnosed before the age of 40. Moreover, multiple myeloma is more common in men. Therefore, pregnancy rarely occurs in patients with multiple myeloma and only 37 cases of multiple myeloma in pregnancy have been reported in the literature. Herein we report an additional 5 cases. The diagnosis of multiple myeloma might be problematic in this context because some of the symptoms and signs, such as back pain and anemia, can be attributed to pregnancy. Furthermore, if the patient wishes to continue her pregnancy, therapeutic options are currently limited. The list of agents that can be safely administered in pregnant women includes gluco­corticoids. Moreover, any continuation of pregnancy has obvious long-term psycho­social repercussions for the patient and her family because of the currently incur­able nature of multiple myeloma. The reported cases of multiple myeloma in pregnancy represent a spectrum of clinical manifestations. The selection of efficacious and safe treatments is challenging, especially if continuation of pregnancy is desired. Although some authors postulate that pregnancy might lead to progression of multiple myeloma, data are limited and no consensus on this point has been reached.

[JPC]

Re: Pregnancy and multiple myeloma

by JPC on Wed Feb 10, 2016 10:08 am

Cheryl, thank you for the very interesting article. Rgds,

[lys2012]

Re: Pregnancy and multiple myeloma

by lys2012 on Wed Feb 10, 2016 11:17 pm

I had my baby last June, 5 years after my myeloma diagnosis. I have been off all myeloma meds since my transplant in 2010.

My health is stable, I do have detectable myeloma (since just before my pregnancy), but it was stable in the pregnancy, very slowly increasing. I might have to do something about it soon but having a baby did not really cause any issues for me (though it was classified high risk and followed very closely by a specialist OB). I was 30 when I got sick, diagnosed at 32.

[JPC]

Re: Pregnancy and multiple myeloma

by JPC on Thu Feb 11, 2016 1:31 pm

Good day Lys:

What an amazing, astounding story, what you went through. On the medical side, I had understood that the ASCT process potentially shut down the ovaries. I am wondering is that an issue, and if your medical team did anything to protect/preserve your ovaries.

On the human side, what faith and courage you have in that you have looked to grow your family in the face of active multiple myeloma. I wish you and your child many many years of good health and success. Good luck and thank you for sharing your story. Regards, JPC

[lys2012]

Re: Pregnancy and multiple myeloma

by lys2012 on Thu Feb 11, 2016 4:52 pm

Thanks yes there is a leap of faith, but also a real understanding that my time here is finite. Trying to make sure our "village" is around for our son if I can't be.

To answer your question, I have ovarian failure since my transplant. We froze my eggs before hand. We did a year of fertility treatments and the last cycle I got pregnant with my son. It was not easy, a bit more difficult case then the average I think. Our doctor / clinic is a leader in IVF in our country. I was on a lot of meds, and max doses of hormones, etc.

[JPC]

Re: Pregnancy and multiple myeloma

by JPC on Thu Feb 11, 2016 5:20 pm

Again Lys, repeating myself, amazing story. Your son is a miracle child, and you are a miracle mom. God bless you both!

[NStewart]

Re: Pregnancy and multiple myeloma

by NStewart on Thu Feb 11, 2016 6:28 pm

What wonderful news to hear about the birth of your son even after being treated for myeloma. Kudos to your OB for agreeing to and attempting to help you get pregnant. Sending your family love and hope that you will be able to see your son grow to adulthood.

Nancy in Phila

[stefania888]

Re: Pregnancy and multiple myeloma

by stefania888 on Sun Oct 09, 2016 7:22 pm

Hello Lys2012,

I was diagnosed at age 30 in July of this year. Currently in my 3rd cycle of treatment with Kyprolis, Revlimid, and dexamethasone. I am responding very well and very quickly to this treatment, even with a chromosomal abnormality.

I have been with my fiance for 7 1/2 years, and we got engaged last July, so obviously my diagnosis a year after getting engaged has cast a lot of uncertainty about the things most couples our age would be planning and dreaming about. My oncologist has been very persistent about treating me in a way that will protect my fertility. He was very optimistic with my results at our last follow up appointment, and though he initially recommended an autologous stem cell transplant following my 4th cycle of treatment, he really thought we could hold off several years at this point. However, he also recommended that I see other doctors for multiple opinions.

So I went to the Mayo Clinic and the doctor I saw still recommended the transplant after my 4th cycle completes. This gives me a narrow time window to make up my mind about egg retrieval and IVF. Since I'm on Revlimid, I think I have to be off of it at least 4 weeks since it's known to cause birth defects, then I have to wait 2 more weeks to do the hormone therapy and egg retrieval. It's just a lot to have happen in such a small time. I'm not even sure I'll end up using them to get pregnant; I'm really holding out for a cure in the next few years.

If I end up going through with the stem cell transplant right away, that's reasonable considering the fertility doctors at Mayo suggested waiting 2 years post-transplant to try getting pregnant with preserved eggs / embryos. Otherwise, I feel so conflicted getting pregnant knowing the disease could take me whenever. I'm sure these thought are nothing new to you in your decision to have your son. (Congratulations, by the way. I am in awe of you!)

I am going to Northwestern in Chicago soon to see another doctor and get their advice on early versus delayed transplant. Hopefully the tiebreaking piece of advice will give me greater peace of mind.

I would love to hear more about your thoughts, considerations, experiences, etc. in deciding to have a baby. Were there any facts or studies that affected your decision, or was it more of a heart-versus-head decision? I realize these may be very personal questions, but I'm also sure you know just how rare it is to be in our situation! I hope our conversations can help others in similar places in their lives.

Stephanie

[JPC]

Re: Pregnancy and multiple myeloma

by JPC on Mon Oct 10, 2016 10:05 am

Hello, Stephania,

As you said, yours is a very, very rare situation. I cannot offer you any direct experience in terms of deciding, but I can offer you my thoughts and prayers for making the best decision and getting the best outcome. If they started treatment before any bad side effects kicked in, that is a positive factor. I was wondering, would you mind sharing what is your chromosomal abnormality? Good luck to you and your future family.

[lys2012]

Re: Pregnancy and multiple myeloma

by lys2012 on Wed Oct 12, 2016 1:06 pm

Caught this scanning The Beacon on my lunch break.

There are for sure moral and practical questions you and your husband need to discuss!

From our investigations, we did not really find doctors able to say strongly yes, or strongly no. It was kind of left up to us to decide! We had a work up with a special pregnancy clinic (experts on high risk pregnancies, effects of drugs in pregnancy) and they could not find much in terms of research. We were worried if pregnancy would trigger relapse and we were told no hormonal connection. Also ditto about heredity.

I can see a red flag for you because of Revlimid. In my case, I declined Thalomid (thalidomide) as a treatment option due to my wishes of having a baby. My doctor agreed. I still have not taken it for maintenance, and will continue to avoid it during treatment of relapse due to my age (doctor suggested this).

If you were to freeze eggs, how long is Revlimid in your body? Eggs collected have now been exposed to Revlimid, what is the long term risks from this drug? How long should you wait? This might influence your decision to go with the transplant or not, if you are not able to freeze eggs.

An autologous transplant (high-dose melphalan) is what causes infertility. Velcade does not impair fertility. Your oncologist's advice of delaying transplant makes a lot of sense from a fertility angle.

I had advanced myeloma, so transplant was planned from the beginning. I did not reach a complete resopnse (CR) before my transplant, but the transplant got me there. So it was the right option for me. No two myeloma patients are exactly alike!

The moral questions, and what ifs are hard to think about. You gotta go with your heart. We try and live a "normal" life for our age. I work full time, we travel, bought a house, and other things people do in their 30s. Having cancer in your 30s is a much different experience than in your 50s +

It's been almost 7 years since diagnosis. I plan on being here for a long time yet! I am con­sidered a good responder to treatment, so we just plan to treat when needed and take breaks in between to keep living life. We are also believers and give these worries to God. If He did not want us to be a family, he would not have blessed us with our miracle. I do know my life will be shortened because of myeloma, but hope I will be here for all the milestones and will watch my baby become a man.