Hi,
I am 38 and was diagnosed with MGUS at 37. We have been trying to conceive for 5 years with no results. My doctor said I have the egg reserves of a 50 year old and that I am most likely experiencing early menopause. We were pursing an egg donation but my MGUS doctor said a pregnancy would most likely activate multiple myeloma and I could be dead in 5 years. I cancelled the egg donation / implantation out of sheer terror and we began to explore adoption.
I just found out I am now 8 weeks pregnant via a spontaneous pregnancy even though 2 different fertility doctors said I could not become pregnant naturally due to my ovaries shutting down. The pregnancy feels like a death sentence and abortion is not an option. I am concerned that this pregnancy if going to shorten my life.
Not sure if anyone else has had experience with MGUS and pregnancy? There isnt much literature out there on this.
Forums
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da_dizzy - Name: Mary
- Who do you know with myeloma?: MGUS (self)
- When were you/they diagnosed?: 37
- Age at diagnosis: 37
Re: MGUS and pregnancy
What studies are they referring too? I would ask for the scientific literature to back that up.
Re: MGUS and pregnancy
This might help you in your quest for info:
"Multiple Myeloma And Pregnancy," The Myeloma Beacon, Sep 27, 2013.
"Multiple Myeloma And Pregnancy," The Myeloma Beacon, Sep 27, 2013.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: MGUS and pregnancy
Hi Mary,
Thanks for introducing yourself.
You've probably already seen the Beacon's recent article on myeloma and pregnancy (which we see Multibilly just pointed out), but just in case, here's the link:
Multiple Myeloma And Pregnancy
The section of the article about pregnancy's potential effect on the progression of myeloma reads as follows:
Note that the article also has a list of references at the end.
Given that your situation is rather unusual – MGUS is not very common among women of childbearing age – it probably would be useful to see a physician who specializes in the diagnosis and treatment of blood diseases such as MGUS and myeloma. They will be better prepared to help you assess whether, for example, there is really much risk associated with your pregnancy, and, if there is, what to do about it.
Thanks for introducing yourself.
You've probably already seen the Beacon's recent article on myeloma and pregnancy (which we see Multibilly just pointed out), but just in case, here's the link:
Multiple Myeloma And Pregnancy
The section of the article about pregnancy's potential effect on the progression of myeloma reads as follows:
Whether pregnancy can contribute to myeloma progression remains controversial.
Certain changes in the mother’s body that occur during pregnancy are also typically believed to affect myeloma progression.
For instance, levels of certain proteins in the body – such as interleukin-6, insulin-like growth factor 1, and vascular endothelial growth factor – are elevated during pregnancy. These proteins are known to promote the growth and survival of myeloma cells in the bone marrow.
In addition, perturbations in immune responses mounted by white blood cells called T helper cells occur during both pregnancy and myeloma.
These findings have led researchers to speculate that pregnancy may create a suitable environment for myeloma progression.
However, a French analysis of 27 cases of myeloma in pregnant women showed that pregnancy did not have an adverse effect on myeloma progression in these women.
Note that the article also has a list of references at the end.
Given that your situation is rather unusual – MGUS is not very common among women of childbearing age – it probably would be useful to see a physician who specializes in the diagnosis and treatment of blood diseases such as MGUS and myeloma. They will be better prepared to help you assess whether, for example, there is really much risk associated with your pregnancy, and, if there is, what to do about it.
Re: MGUS and pregnancy
If you aren't already being seen by an multiple myeloma specialist, be sure to do so. I would also suggest that you look for an obstetrician/fertility specialist who works with women who have high risk pregnancies due to cancer diagnoses. I have treated a few women, I'm a PT, who were diagnosed with cancer while they were pregnant and they came through the pregnancy giving birth to a healthy baby. It wasn't without some complications, but it was successful and both Mom and baby survived and were healthy.
I send you all of the best for a healthy pregnancy, a healthy baby and a long life for you,
Nancy in Phila
I send you all of the best for a healthy pregnancy, a healthy baby and a long life for you,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: MGUS and pregnancy
These articles are related to women diagnosed with multiple myeloma. She has MGUS which is more likely not to progress to multiple myeloma. A low percentage does. I would carry that baby and be happy to be blessed with this pregnancy against all odds.
Re: MGUS and pregnancy
By the way, my great Aunt had MGUS. She had children and died at age 100. You might die in a car accident, you might fall down some stairs and die, you might, you might. You might regret NOT giving birth to this child when you are 98 with MGUS.
Re: MGUS and pregnancy
Hello
I don't normally post in here but after reading your post I thought I should as it seems that we may be in a somewhat similar situation.
I am a 30 year old female from the UK and was recently diagnosed with MGUS (small/weak IgG paraprotein) as the result of an autoimmune screen that I requested. I only asked for these blood tests because I had recently experienced an early miscarriage (after over a year of trying to conceive - my husband has a low sperm count / low motility). I have had very mild psoriasis since I was in my teens and had heard that autoimmune conditions can sometimes contribute to miscarriage, so wanted to rule this out before starting IVF (turns out that I do have a positive ANA test - only 1:80, which is low).
Anyway, this paraprotein showed up as well, so I booked myself in to see a haematologist. I googled myself into a frenzy and was very upset at first (lots of stress!), but I have since been reassured by the haematologist - everything looks fine in terms of full blood count, skeletal survey, normal SFLC ratio etc. I'm still not completely comfortable with the situation (especially since I'm only 30), but I am trying to get on with my life as normal. My haematologist also said that he has a few other young patients like me with MGUS, it's rare but it's certainly not unheard of (and think of how many people there are out there who don't even know they have it!). Really wish I never did the blood test to be completely honest - it caused me so much stress.
I asked my haematologist about fertility/pregnancy and IVF. He did not express any concerns and said it should be OK to proceed. He did not feel that my MGUS was having an impact on my fertility or that pregnancy would advance my MGUS. I asked if it was possible that the paraprotein may rise during pregnancy and he said that he did not know, but that it was a possibility as many proteins go up in pregnancy generally. I got the impression that he thought that if it did go up during pregnancy (along with the other proteins) then it would likely go back down again after pregnancy.
The IVF clinic queried the paraprotein before they would treat me and the haematologist wrote to them to confirm that in his opinion, from a haematological point of view there is no contradiction to IVF/ICSI treatment in my case. He has also given the go ahead for use of clexane/prednisone (sp?) for my positive ANA (which may or may not have played a part in my miscarriage - better safe than sorry from the clinics point of view!).
I started IVF yesterday, and whilst I do feel slightly apprehensive (about both IVF and the MGUS situation) I have taken the view that had I have not done the blood test in the first place I would not have known any different. There are not many studies on this in the literature and I've not found many discussions on this topic online either. Here are a couple of articles that may be of some interest to you (although the first article related to myeloma, not MGUS)
"Multiple Myeloma And Pregnancy," The Myeloma Beacon, Sep 27, 2013
and here is a discussion that I read through from this site:
"28 Female - Borderline MGUS / smoldering myeloma," Beacon forum discussion started Aug 30, 2012
I wish you the best of luck and I really hope that a second opinion will leave you feeling more positive!
I don't normally post in here but after reading your post I thought I should as it seems that we may be in a somewhat similar situation.
I am a 30 year old female from the UK and was recently diagnosed with MGUS (small/weak IgG paraprotein) as the result of an autoimmune screen that I requested. I only asked for these blood tests because I had recently experienced an early miscarriage (after over a year of trying to conceive - my husband has a low sperm count / low motility). I have had very mild psoriasis since I was in my teens and had heard that autoimmune conditions can sometimes contribute to miscarriage, so wanted to rule this out before starting IVF (turns out that I do have a positive ANA test - only 1:80, which is low).
Anyway, this paraprotein showed up as well, so I booked myself in to see a haematologist. I googled myself into a frenzy and was very upset at first (lots of stress!), but I have since been reassured by the haematologist - everything looks fine in terms of full blood count, skeletal survey, normal SFLC ratio etc. I'm still not completely comfortable with the situation (especially since I'm only 30), but I am trying to get on with my life as normal. My haematologist also said that he has a few other young patients like me with MGUS, it's rare but it's certainly not unheard of (and think of how many people there are out there who don't even know they have it!). Really wish I never did the blood test to be completely honest - it caused me so much stress.
I asked my haematologist about fertility/pregnancy and IVF. He did not express any concerns and said it should be OK to proceed. He did not feel that my MGUS was having an impact on my fertility or that pregnancy would advance my MGUS. I asked if it was possible that the paraprotein may rise during pregnancy and he said that he did not know, but that it was a possibility as many proteins go up in pregnancy generally. I got the impression that he thought that if it did go up during pregnancy (along with the other proteins) then it would likely go back down again after pregnancy.
The IVF clinic queried the paraprotein before they would treat me and the haematologist wrote to them to confirm that in his opinion, from a haematological point of view there is no contradiction to IVF/ICSI treatment in my case. He has also given the go ahead for use of clexane/prednisone (sp?) for my positive ANA (which may or may not have played a part in my miscarriage - better safe than sorry from the clinics point of view!).
I started IVF yesterday, and whilst I do feel slightly apprehensive (about both IVF and the MGUS situation) I have taken the view that had I have not done the blood test in the first place I would not have known any different. There are not many studies on this in the literature and I've not found many discussions on this topic online either. Here are a couple of articles that may be of some interest to you (although the first article related to myeloma, not MGUS)
"Multiple Myeloma And Pregnancy," The Myeloma Beacon, Sep 27, 2013
and here is a discussion that I read through from this site:
"28 Female - Borderline MGUS / smoldering myeloma," Beacon forum discussion started Aug 30, 2012
I wish you the best of luck and I really hope that a second opinion will leave you feeling more positive!
Re: MGUS and pregnancy
To AD83, I too have psoriasis! It's funny how much we have in common. I also had papillary thyroid cancer. I wonder if all of these things are related?
Anyway, thanks for all of your responses. I am actually seeing a myeloma specialists who works for MD Anderson. He is the one that spent 30 minutes convincing me to cancel my egg donation plans because he felt this kinda of stress on the body can only make things worse. He pretty much told me I would probably die by 55 but if I got pregnant I can live about 5 to 8 additional years. My former hematologist (changed docs cuz I moved) said I would live so long and have so many children that they would make me wish I were dead (it was funny when he said it). It is just crazy how 2 different blood cancer specialists can have such different opinions.
My M-spike was 1.0 and my IgG was elevated but really none of my labs have changed over the past 2 years and both my bone biopsies were less than 10%. I am getting new labs and going to see the harbinger of death on Feb 18th. I can't wait to tell him I'm pregnant. I wonder how he will react? I will check out the links all of you have posted tonight.
Thanks, I can stop crying now.
Anyway, thanks for all of your responses. I am actually seeing a myeloma specialists who works for MD Anderson. He is the one that spent 30 minutes convincing me to cancel my egg donation plans because he felt this kinda of stress on the body can only make things worse. He pretty much told me I would probably die by 55 but if I got pregnant I can live about 5 to 8 additional years. My former hematologist (changed docs cuz I moved) said I would live so long and have so many children that they would make me wish I were dead (it was funny when he said it). It is just crazy how 2 different blood cancer specialists can have such different opinions.
My M-spike was 1.0 and my IgG was elevated but really none of my labs have changed over the past 2 years and both my bone biopsies were less than 10%. I am getting new labs and going to see the harbinger of death on Feb 18th. I can't wait to tell him I'm pregnant. I wonder how he will react? I will check out the links all of you have posted tonight.
Thanks, I can stop crying now.
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da_dizzy - Name: Mary
- Who do you know with myeloma?: MGUS (self)
- When were you/they diagnosed?: 37
- Age at diagnosis: 37
Re: MGUS and pregnancy
Hi I don't have MGUS, but I instead full blown myeloma, diagnosed at 32. I am 36 now, and have been in remission for several years. My husband and I want to have a family and met with a bunch of doctors to get the full picture.
The high risk OB/GYN clinic where we live (very specialized world famous) did a complete case work up on multiple myeloma in pregnancy and discussed the results about pregnancy, progression, treatment etc. We asked if there was any indication it would gravely affect my health could they tell us straight up, but they could not find clear evidence to support that claim. They told us there is a chance the M protein can rise during pregnancy, but no evidence it harms a baby. I was told to take high levels of folic acid as there is slightly greater risk for neural tube issues because of the chemo I've done (it depletes folate or something). Also, multiple births may be more risky for me due to the blood count issues (again related to the transplant and chemo, not really the myeloma)
We met with genetic councilor, they said multiple myeloma is not genetic so need for them to be involved.
We discussed it with my oncologist at length and she did not feel strongly against us trying and encouraged us to try sooner then later, while I'm not on any drugs. She did give us the reality check about myeloma stats, but I'm doing quite well in a long deep remission, and we sort of expect me to stay this way for a long time.
The big issue is my stem cell transplant has caused ovarian failure, so we are with a fertility specialist, and are actively trying to have a baby right now!
The high risk OB/GYN clinic where we live (very specialized world famous) did a complete case work up on multiple myeloma in pregnancy and discussed the results about pregnancy, progression, treatment etc. We asked if there was any indication it would gravely affect my health could they tell us straight up, but they could not find clear evidence to support that claim. They told us there is a chance the M protein can rise during pregnancy, but no evidence it harms a baby. I was told to take high levels of folic acid as there is slightly greater risk for neural tube issues because of the chemo I've done (it depletes folate or something). Also, multiple births may be more risky for me due to the blood count issues (again related to the transplant and chemo, not really the myeloma)
We met with genetic councilor, they said multiple myeloma is not genetic so need for them to be involved.
We discussed it with my oncologist at length and she did not feel strongly against us trying and encouraged us to try sooner then later, while I'm not on any drugs. She did give us the reality check about myeloma stats, but I'm doing quite well in a long deep remission, and we sort of expect me to stay this way for a long time.
The big issue is my stem cell transplant has caused ovarian failure, so we are with a fertility specialist, and are actively trying to have a baby right now!
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
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