Hi all,
I am 27 years old and the youngest person at my hospital with multiple myeloma also one of the youngest ever).
All the resources I have found related to multiple myeloma are ill-fitted to me because my disease and experience / feelings / worries are so different to that of a typical aged multiple myeloma sufferer.
My main concern at the moment is fertility. I would like to harvest eggs but have found little to no information on how the treatment and disease can/will affect children and eggs in the future.
Has anyone out there frozen any eggs or know of any information regarding the risks etc?
Forums
Re: Multiple myeloma, treatment, and fertility
Hi Jgeneration,
You might want not want to write off consulting with other multiple myeloma patients.While you may be the youngest with multiple myeloma, there still may be women of child bearing age who have had to address the issue of fertility. Even if they may be not as young as you, their spirits will be in sync with yours.
Many women with breast cancer have faced this issue as well. Those women will have processed and managed some of the emotions you are feeling about fertility.
Egg-freezing is a very recent technology, up until about 6 months ago, you could only preserve fertilized human eggs. So, this is very good news for women who may not have found their partner in life yet, but who due to needing chemotherapy want to have fertility options.
You might want not want to write off consulting with other multiple myeloma patients.While you may be the youngest with multiple myeloma, there still may be women of child bearing age who have had to address the issue of fertility. Even if they may be not as young as you, their spirits will be in sync with yours.
Many women with breast cancer have faced this issue as well. Those women will have processed and managed some of the emotions you are feeling about fertility.
Egg-freezing is a very recent technology, up until about 6 months ago, you could only preserve fertilized human eggs. So, this is very good news for women who may not have found their partner in life yet, but who due to needing chemotherapy want to have fertility options.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Multiple myeloma, treatment, and fertility
Hi Jeneration,
Welcome to the forum. I think you'll find it helpful.
In addition to the information suzierose provided, this thread may be worth checking out:
https://myelomabeacon.org/forum/pregnancy-after-myeloma-treatment-has-anyone-had-a-baby-t752.html
Welcome to the forum. I think you'll find it helpful.
In addition to the information suzierose provided, this thread may be worth checking out:
https://myelomabeacon.org/forum/pregnancy-after-myeloma-treatment-has-anyone-had-a-baby-t752.html
Re: Multiple myeloma, treatment, and fertility
Hi that was my other post!
We have not got pregnant yet, but have not been "actively" trying, decided to wait a little bit longer
I am happy to report an update though.
My multiple myeloma doctor did not have much to say on this topic. She said she had experience pregnancies with younger women with cancer, since before a myeloma specialist she was a transplant doctor and had a lot of leukemia patients,including many younger women. She recommended we see a genetic councilor to discuss issues such as the influence of drugs on cells and to develop a plan of what we could use if I relapsed in pregnancy since Rev / thalidomide etc are strictly out of the question. I contacted a high-risk pregnancy practice and they did not think this was the right person to talk to.
My sister recommended I call motherrisk hotline, (it is a service for pregnant women to call and talk with doctors/ nurses about drugs / medications during pregnancy) The triage nurse suggested my husband and I come in and talk to the doctor in person, and said in rare cases they run a clinic appointment.
So she took down as much info as possible, and then had my doctor provide a written referral letter which included all the treatment I've had, and the meds they would use at relapse.
The doctor who was assigned my case was really great. He is a top highrisk OB/GYN from Israel, in Canada (where I live) for a special residency training for drugs and pregnancy. He did extensive case research and could only find 2 or 3 stories of Myeloma and pregnancy, and nothing recent. So then he looked at other blood cancers, and because of my age etc Lymphoma was the most common. He found quite a few cases of relapse in pregancy. Treatment is possible during pregnancy, but only after the second trimester, as all the major formation of the fetus is complete. The treatments that would be possilbe for me would include prednisone and cyclophosphomide, since there are multiple reports of healthy babies following this!
In terms of the fertility preservation, My doctor referred us to a reproductive endocrinologist before my transplant. He laid out the options for us. He felt with my age the high dose chemo could definitely cause infertility and recommended IVf to harvest the eggs and then free them. In his opinion the best way to freeze them was fertilized, so my husband had to donate sperm for this. He said my periods may come back (they haven't regulated, but I get the odd cycle). I gotta warn you it was not cheap! The meds alone were $5000. ANd then we did an "accelerated cycle" because I only had one month before my transplant. So this had higher levels of meds and I ended up quite sick with something called Ovarian Hyper stimulation syndrome.The doctor did not think Velcade affected fertility our biggest worry was the transplant.
So when my husband I are ready we will be doing the Frozen IVF implantation procedure, and going back to the fertility doctor. takes some of the fun out, but I am happy we have this option now.
Ok very long winded but hope it helped
We have not got pregnant yet, but have not been "actively" trying, decided to wait a little bit longer
I am happy to report an update though.
My multiple myeloma doctor did not have much to say on this topic. She said she had experience pregnancies with younger women with cancer, since before a myeloma specialist she was a transplant doctor and had a lot of leukemia patients,including many younger women. She recommended we see a genetic councilor to discuss issues such as the influence of drugs on cells and to develop a plan of what we could use if I relapsed in pregnancy since Rev / thalidomide etc are strictly out of the question. I contacted a high-risk pregnancy practice and they did not think this was the right person to talk to.
My sister recommended I call motherrisk hotline, (it is a service for pregnant women to call and talk with doctors/ nurses about drugs / medications during pregnancy) The triage nurse suggested my husband and I come in and talk to the doctor in person, and said in rare cases they run a clinic appointment.
So she took down as much info as possible, and then had my doctor provide a written referral letter which included all the treatment I've had, and the meds they would use at relapse.
The doctor who was assigned my case was really great. He is a top highrisk OB/GYN from Israel, in Canada (where I live) for a special residency training for drugs and pregnancy. He did extensive case research and could only find 2 or 3 stories of Myeloma and pregnancy, and nothing recent. So then he looked at other blood cancers, and because of my age etc Lymphoma was the most common. He found quite a few cases of relapse in pregancy. Treatment is possible during pregnancy, but only after the second trimester, as all the major formation of the fetus is complete. The treatments that would be possilbe for me would include prednisone and cyclophosphomide, since there are multiple reports of healthy babies following this!
In terms of the fertility preservation, My doctor referred us to a reproductive endocrinologist before my transplant. He laid out the options for us. He felt with my age the high dose chemo could definitely cause infertility and recommended IVf to harvest the eggs and then free them. In his opinion the best way to freeze them was fertilized, so my husband had to donate sperm for this. He said my periods may come back (they haven't regulated, but I get the odd cycle). I gotta warn you it was not cheap! The meds alone were $5000. ANd then we did an "accelerated cycle" because I only had one month before my transplant. So this had higher levels of meds and I ended up quite sick with something called Ovarian Hyper stimulation syndrome.The doctor did not think Velcade affected fertility our biggest worry was the transplant.
So when my husband I are ready we will be doing the Frozen IVF implantation procedure, and going back to the fertility doctor. takes some of the fun out, but I am happy we have this option now.
Ok very long winded but hope it helped
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Multiple myeloma, treatment, and fertility
Hi Alyssa!
It is wonderful that you have found reproductive options if/when chemotherapy is need during pregnancy. There was one thing that made me pause.. you wrote:
"Treatment is possible during pregnancy, but only after the second trimester, as all the major formation of the fetus is complete. The treatments that would be possilbe for me would include prednisone and cyclophosphomide, since there are multiple reports of healthy babies following this!"
I wondered if this was accurate since brain development critical to cognitive function occurs during the third trimester. Certainly the baby could be healthy in terms of many major organs and limbs but I would be very cautious and ask about how those babies developed long term. During the last trimester is when the brain circuitry for neurotransmitters is routed and receptors for very important transmitters are signalled like glutamine, 5HT,GABA etc. We know that cyclophosaphamide crosses the BBB as it is used to treat brain cancers...all of which made me wonder about the accuracy of what was written.
In all likelihood, these are just my nagging concers as the clinicians and experts you spoke with have far more experience with cyclophosamide and were able to share more detail with you when to weigh the risks and benefits more precisely.
Wishing you all the best when you decide to implant!!
It is wonderful that you have found reproductive options if/when chemotherapy is need during pregnancy. There was one thing that made me pause.. you wrote:
"Treatment is possible during pregnancy, but only after the second trimester, as all the major formation of the fetus is complete. The treatments that would be possilbe for me would include prednisone and cyclophosphomide, since there are multiple reports of healthy babies following this!"
I wondered if this was accurate since brain development critical to cognitive function occurs during the third trimester. Certainly the baby could be healthy in terms of many major organs and limbs but I would be very cautious and ask about how those babies developed long term. During the last trimester is when the brain circuitry for neurotransmitters is routed and receptors for very important transmitters are signalled like glutamine, 5HT,GABA etc. We know that cyclophosaphamide crosses the BBB as it is used to treat brain cancers...all of which made me wonder about the accuracy of what was written.
In all likelihood, these are just my nagging concers as the clinicians and experts you spoke with have far more experience with cyclophosamide and were able to share more detail with you when to weigh the risks and benefits more precisely.
Wishing you all the best when you decide to implant!!
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Multiple myeloma, treatment, and fertility
Hi Suzie ,
just wnadering, are you a doctor? you know a lot technical stuff?
The doctor I saw is a top OB/GYN specialist, and doing a specialty residency in drugs/ pregnancy. I trust his analysis and he did a lot of background research and had medical cases to base his opinion around.
What I wrote is my understanding of what the specialist told us. The critical time for development is the first trimester, and since chemo affects quick growing cells, it is not feasible during the first trimester. He found many case reports of mothers receiving treatment during the second and third trimesters for other blood malignancies (mostly Lymphoma since that usually affects younger women) and the babies are fine on Long Term follow up.
Obviously it is not ideal to need chemo in pregnancy, but if the need arose there are treatment options, at least to stabilize any myeloma until after delivery when high dose therapy could be initiated. Since the mother's health comes "first". And yes Cyclophosphomide was the specific chemo we talked about.
Prednisone has a long history of use in pregnancy by women with many other diseases then cancer, and it is does not affect the fetal development, and that is the other drug.
He told us he did not find a real increase in the number of birth defects to mothers who have had cancer treatment late in the pregnancy. In the normal population a certain percent (maybe 3 or maybe 6?) of babies are born with defects and we would still face that risk, maybe slightly higher, and certain tests can add some risks, (Amnio tests etc) but since it would be high risk pregnancy they would recommend very in deph monitoring and testing etc.
He did say I would have a slightly increased risk of defect like cleft lift, and they are not entirely sure why, maybe because of the chemo I've had affects folic acid. So he recommended I start folic acid supplements, but much higher doses then the average women to be prepared. Also there is a risk my blood counts won’t be able to make enough blood cells if my Marrow is “scarred” from the transplant. But that would be closely monitored.
Like the Original Poster wrote, Most Myeloma Patients (men or women) do not understand these unique issues affecting young women with myeloma. Even most doctors don’t, so it is hard to find any resources. It is ok for you (or other others) to be sceptic about treatment in pregnancy, but if I (or other younger Myeloma patients) want to be a mom it is a risk we must take. My husband would love to carry the baby instead, but science is not ready for that
I've met other yong women with Breast cancer, and it is true they can related to the infertility stuff, but they have potential to be "cured" so this ongoing issue of being prepared for your myeloma to relapse if quite unique to well, Myeloma.
just wnadering, are you a doctor? you know a lot technical stuff?
The doctor I saw is a top OB/GYN specialist, and doing a specialty residency in drugs/ pregnancy. I trust his analysis and he did a lot of background research and had medical cases to base his opinion around.
What I wrote is my understanding of what the specialist told us. The critical time for development is the first trimester, and since chemo affects quick growing cells, it is not feasible during the first trimester. He found many case reports of mothers receiving treatment during the second and third trimesters for other blood malignancies (mostly Lymphoma since that usually affects younger women) and the babies are fine on Long Term follow up.
Obviously it is not ideal to need chemo in pregnancy, but if the need arose there are treatment options, at least to stabilize any myeloma until after delivery when high dose therapy could be initiated. Since the mother's health comes "first". And yes Cyclophosphomide was the specific chemo we talked about.
Prednisone has a long history of use in pregnancy by women with many other diseases then cancer, and it is does not affect the fetal development, and that is the other drug.
He told us he did not find a real increase in the number of birth defects to mothers who have had cancer treatment late in the pregnancy. In the normal population a certain percent (maybe 3 or maybe 6?) of babies are born with defects and we would still face that risk, maybe slightly higher, and certain tests can add some risks, (Amnio tests etc) but since it would be high risk pregnancy they would recommend very in deph monitoring and testing etc.
He did say I would have a slightly increased risk of defect like cleft lift, and they are not entirely sure why, maybe because of the chemo I've had affects folic acid. So he recommended I start folic acid supplements, but much higher doses then the average women to be prepared. Also there is a risk my blood counts won’t be able to make enough blood cells if my Marrow is “scarred” from the transplant. But that would be closely monitored.
Like the Original Poster wrote, Most Myeloma Patients (men or women) do not understand these unique issues affecting young women with myeloma. Even most doctors don’t, so it is hard to find any resources. It is ok for you (or other others) to be sceptic about treatment in pregnancy, but if I (or other younger Myeloma patients) want to be a mom it is a risk we must take. My husband would love to carry the baby instead, but science is not ready for that
I've met other yong women with Breast cancer, and it is true they can related to the infertility stuff, but they have potential to be "cured" so this ongoing issue of being prepared for your myeloma to relapse if quite unique to well, Myeloma.
-
lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Multiple myeloma, treatment, and fertility
Hi Alyssa, this is all very interesting and mostly new to me, and I feel for you having to make such treatment decisions at a young age. There are differing types of myeloma, and those seem to be differentiated by such tests as chromosomal testing...some of those types are quite 'high risk' in the sense of relapses too! I suppose what I am wondering is how 'deep' your remission would be and for how long you could expect to be in a remission after your treatments. You will probably have a better idea of that in a few months. I know that even though I am not in a 'high risk' category of myeloma, i still had 21 months of treatment. I wouldn't have wanted to be pregnant at that time...of course i am way too old now for that..but I did have my children in my early thirties. I am not a doctor, and don't know all the treatments available to pregnant women with cancer, but if you could possibly not be taking drugs at that time, that would be easier for you, I am sure! Best wishes to you both!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Multiple myeloma, treatment, and fertility
Hi Alyssa,
Sorry but I do not give out credentials online, and yes, I know a lot of technical/science/medical stuff. It is surprising that the reproductive"top ob-gyn" expert you spoke to had 'long-term' data to assure you with. There is skant long-term follow-up information in the literature.
Please note that Dr. Libby's reply to your original post also made this distinction, he stated there was little to no long term writeups about the children exposed to aklylators in-utero.
My initial reply to you was only a query which you may find useful, if you do not need nor desire this level of specificity and/or distinction ...please disregard it and accept my apologies if these were not concerns for you.
Wishing you all the best!
Sorry but I do not give out credentials online, and yes, I know a lot of technical/science/medical stuff. It is surprising that the reproductive"top ob-gyn" expert you spoke to had 'long-term' data to assure you with. There is skant long-term follow-up information in the literature.
Please note that Dr. Libby's reply to your original post also made this distinction, he stated there was little to no long term writeups about the children exposed to aklylators in-utero.
My initial reply to you was only a query which you may find useful, if you do not need nor desire this level of specificity and/or distinction ...please disregard it and accept my apologies if these were not concerns for you.
Wishing you all the best!
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Multiple myeloma, treatment, and fertility
Yes,, thanks for making me feel even worse about having this stupid disease, You are talking a lot about something that you do not personally have experience with so please stop disreditting information I received from a very credible source with your theoretical ideas.
The fact is the case studies do not show the birth defects with neuro transmitters etc that you are convinced they should. yes you know what I had chemo brain, and you know what I'm over it.,back to functioning on all cylinders, working full time again (at a demanding job) and trying to resume my life as a 30 something which involves having a family.
If you want more information about chemo and the long term affect of pregnancy please contact Motherisk, at the Hospital for Sick Children in Toronto, Canada, which is where I got my information, pretty much world leaders in a lot of things. I will not be posting anything more about my experiences again here.
http://www.motherisk.org/women/index.jsp
The fact is the case studies do not show the birth defects with neuro transmitters etc that you are convinced they should. yes you know what I had chemo brain, and you know what I'm over it.,back to functioning on all cylinders, working full time again (at a demanding job) and trying to resume my life as a 30 something which involves having a family.
If you want more information about chemo and the long term affect of pregnancy please contact Motherisk, at the Hospital for Sick Children in Toronto, Canada, which is where I got my information, pretty much world leaders in a lot of things. I will not be posting anything more about my experiences again here.
http://www.motherisk.org/women/index.jsp
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Multiple myeloma, treatment, and fertility
There are none so blind as those who will not see.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
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