I recently finished four cycles of four-drug treatment as part of a clinical trial for newly diagnosed multiple myeloma patients, and I am scheduled for a stem cell transplant in late January. I'm 29 years old without children, so prior to transplant I planned on freezing my eggs because I didn't get the chance to do so before starting treatment. However, my doctor failed to realize egg freezing is not allowed on study, so now I have to choose between staying in the trial, and getting maintenance therapy as part of it, and dropping out of the trial so I can freeze some of my eggs.
(The trial is testing a regimen that includes Darzalex, Revlimid, Velcade, and dexamethasone; maintenance after transplant would be with Darzalex.)
My thinking now is that adding potentially 2 years to my first remission isn't as important as my chances of having a family. Besides, any remission I get will be compromised anyway when I stop maintenance to attempt to get pregnant.
I would appreciate any perspectives forum members might have on my situation, including advice about what you might do in my position, and why.
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Meshapoo - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: July 21, 2017
- Age at diagnosis: 29
Re: Should I drop out of a trial to preserve my fertility?
This is a complex problem, on so many levels. Perhaps consultation with a fertility expert and.or a bioethics professional might be helpful in exploring all your options. Good luck to you.
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WholeNotherWorld - Who do you know with myeloma?: my husband
- When were you/they diagnosed?: Dec. 2016
- Age at diagnosis: 67
Re: Should I drop out of a trial to preserve my fertility?
Hi Meshapoo,
Wouldn't another option be to continue in the clinical trial for another year or two, so that you could receive the maintenance therapy during that time, and then consider dropping out of the trial? Or do your doctors believe that the maintenance therapy you would get during the trial would reduce your ability to save eggs at a later date?
Wouldn't another option be to continue in the clinical trial for another year or two, so that you could receive the maintenance therapy during that time, and then consider dropping out of the trial? Or do your doctors believe that the maintenance therapy you would get during the trial would reduce your ability to save eggs at a later date?
Re: Should I drop out of a trial to preserve my fertility?
If you want to preserve your eggs, unfortunately I do not see any other option but to drop out of the trial if the terms of the trial don't allow you to do it. I was 30 when I was diagnosed and my husband and I saw fertility experts prior to my transplant. The odds of you going into menopause post transplant are slightly less in your 20s and 30s, but if you want children that are genetically yours, it's better to be safe than sorry, drop out of the trial, and have your eggs preserved. There may be another similar trial you can get into, but you may only have the one shot at preservation. Just my personal observation and opinion.
It's not an easy decision. I'm sorry you are one of the less than 1% of myeloma patients diagnosed this young. I'm guessing not too many have had to make these specific kinds of decisions! Hang in there and fight for what you want and what's most important to you.
It's not an easy decision. I'm sorry you are one of the less than 1% of myeloma patients diagnosed this young. I'm guessing not too many have had to make these specific kinds of decisions! Hang in there and fight for what you want and what's most important to you.
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stefania888 - Name: Stephanie
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: July 2016
- Age at diagnosis: 30
Re: Should I drop out of a trial to preserve my fertility?
Thanks for responding 
I have spoken to a few fertility specialists but not in the context of this decision, so there are more questions to ask. I'm planning on seeing a specialist who specifically works with cancer patients in early January and hope she will lead me in the right direction.
The high dose melphalan I will receive as part of the stem cell transplant process will likely cause permanent ovarian failure and lose of fertility, which is why I must preserve my healthy eggs prior to transplant. So, unfortunately, waiting a few years isn't an option.
My doctor mentioned the study I've listed below as a reference. He pulled from this that my chances of getting pregnant are at least 50/50 and, because of that, sacrificing Darzalex as part of my treatment just isn't worth it.
I'd say that's a bit of a stretch mainly because recovering ovarian function doesn't necessarily translate to having a successful live birth. So the unknown certainly that Darzalex will do anything to improve my overall survival or quality of life isn't worth sacrificing my chances of actually conceiving, in my opinion. Besides, I would undo all of the good getting Darzalex upfront would provide when I stop maintenance after 2 years to try and get pregnant anyways.
I have for sure been thinking about what's important to me and am leaning towards dropping out, but it's just not that simple a decision. You could say why would I want a child to begin with when I wouldn't be around to raise them, but I don't want to make any compromises in my life because I have this disease.
Reference:
Lasica, M, et al, "Fertility in premenopausal women post autologous stem cell transplant with BEAM conditioning," European Journal of Haematology, Feb 2016 (abstract)
Abstract:
There is currently minimal data on fertility outcomes in premenopausal women undergoing autologous stem cell transplant (ASCT) with carmustine, etoposide, cytarabine and melphalan (BEAM) conditioning. A retrospective analysis of fertility outcomes in premenopausal females aged between 18 and 40 yr who underwent BEAM / ASCT for lymphoma between 1995 and 2011 was performed at four transplant centres. Of 41 premenopausal women who underwent BEAM conditioning, 25 met the inclusion criteria with the main exclusion criterion being inadequate documentation. Eighteen had Hodgkin lymphoma, and seven had non-Hodgkin lymphoma. Median number of chemotherapy regimens pretransplant was 2 (1-3). Seventeen women (68%) with a median age at transplant of 25 yr (range 17-33) recovered their menses. The comparative group without recovery was older with a median age of 34 yr (range 20-40) (P = 0.007). Ten patients, with a median age at transplant of 22 yr (range 17-30), had 15 naturally conceived pregnancies. Chemotherapy regimens and lymphoma type did not obviously influence the incidence of menses recovery or conception. The incidence of recovery of menses and fertility in premenopausal women undergoing BEAM / ASCT for lymphoma is substantial. Younger age at transplant correlates with superior fertility outcomes.
I have spoken to a few fertility specialists but not in the context of this decision, so there are more questions to ask. I'm planning on seeing a specialist who specifically works with cancer patients in early January and hope she will lead me in the right direction.
The high dose melphalan I will receive as part of the stem cell transplant process will likely cause permanent ovarian failure and lose of fertility, which is why I must preserve my healthy eggs prior to transplant. So, unfortunately, waiting a few years isn't an option.
My doctor mentioned the study I've listed below as a reference. He pulled from this that my chances of getting pregnant are at least 50/50 and, because of that, sacrificing Darzalex as part of my treatment just isn't worth it.
I'd say that's a bit of a stretch mainly because recovering ovarian function doesn't necessarily translate to having a successful live birth. So the unknown certainly that Darzalex will do anything to improve my overall survival or quality of life isn't worth sacrificing my chances of actually conceiving, in my opinion. Besides, I would undo all of the good getting Darzalex upfront would provide when I stop maintenance after 2 years to try and get pregnant anyways.
I have for sure been thinking about what's important to me and am leaning towards dropping out, but it's just not that simple a decision. You could say why would I want a child to begin with when I wouldn't be around to raise them, but I don't want to make any compromises in my life because I have this disease.
Reference:
Lasica, M, et al, "Fertility in premenopausal women post autologous stem cell transplant with BEAM conditioning," European Journal of Haematology, Feb 2016 (abstract)
Abstract:
There is currently minimal data on fertility outcomes in premenopausal women undergoing autologous stem cell transplant (ASCT) with carmustine, etoposide, cytarabine and melphalan (BEAM) conditioning. A retrospective analysis of fertility outcomes in premenopausal females aged between 18 and 40 yr who underwent BEAM / ASCT for lymphoma between 1995 and 2011 was performed at four transplant centres. Of 41 premenopausal women who underwent BEAM conditioning, 25 met the inclusion criteria with the main exclusion criterion being inadequate documentation. Eighteen had Hodgkin lymphoma, and seven had non-Hodgkin lymphoma. Median number of chemotherapy regimens pretransplant was 2 (1-3). Seventeen women (68%) with a median age at transplant of 25 yr (range 17-33) recovered their menses. The comparative group without recovery was older with a median age of 34 yr (range 20-40) (P = 0.007). Ten patients, with a median age at transplant of 22 yr (range 17-30), had 15 naturally conceived pregnancies. Chemotherapy regimens and lymphoma type did not obviously influence the incidence of menses recovery or conception. The incidence of recovery of menses and fertility in premenopausal women undergoing BEAM / ASCT for lymphoma is substantial. Younger age at transplant correlates with superior fertility outcomes.
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Meshapoo - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: July 21, 2017
- Age at diagnosis: 29
Re: Should I drop out of a trial to preserve my fertility?
A third option; focus on your health and use adoption.
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Should I drop out of a trial to preserve my fertility?
It is also worth noting that adoption can be a lengthy, difficult process for healthy people, but can be especially so if you have cancer or recent history of cancer. However, there are agencies that will still work with you. The point is, you have options, Meshapoo; just try learn as much as you can in this narrow time window so you can make the best decision possible!
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stefania888 - Name: Stephanie
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: July 2016
- Age at diagnosis: 30
Re: Should I drop out of a trial to preserve my fertility?
Hi
I was diagnosed at 32 in 2010. I preserved my fertility but froze embryos between my induction and transplant! I did not do maintenance treatment, so after my transplant I was off all medications until this year when I had to start treatment for my relapse.
in 2014 we did fertility treatment to try and have a baby using my popsicle babies! It took 5 tries, but the last embryo turned into a baby! My son was born in 2015 and is now 2.5 and a blessing and a miracle.
I went into premature ovarian failure after my transplant. My cycle sort of came back irregular but I did not ovulate anymore. After my baby I go to a specialty early menopause clinic and was placed on hormone replacement therapy, not just for menopause symptoms but to try and preserve my bone health! I have diffuse osteopenia and other multiple myeloma bone damage. I'm having a second transplant in January and my gynecologist told me frankly that it would make me menopausal (finish off what the last one started).
It is not an easy decision to leave the trial, but if you want a family it sounds like this is the only option. Even then, I have friends in the young adult cancer community who did the preservation but the frozen embryos / eggs never resulted in a baby. Fertility treatments are financially and emotionally draining. We had given up hope and then had a miracle, but it does not always work out. We started off really hopeful, expecting it would work first try, and when it didn't it is quite devastating. Then you do cycle after cycle and it's tough.
I was diagnosed at 32 in 2010. I preserved my fertility but froze embryos between my induction and transplant! I did not do maintenance treatment, so after my transplant I was off all medications until this year when I had to start treatment for my relapse.
in 2014 we did fertility treatment to try and have a baby using my popsicle babies! It took 5 tries, but the last embryo turned into a baby! My son was born in 2015 and is now 2.5 and a blessing and a miracle.
I went into premature ovarian failure after my transplant. My cycle sort of came back irregular but I did not ovulate anymore. After my baby I go to a specialty early menopause clinic and was placed on hormone replacement therapy, not just for menopause symptoms but to try and preserve my bone health! I have diffuse osteopenia and other multiple myeloma bone damage. I'm having a second transplant in January and my gynecologist told me frankly that it would make me menopausal (finish off what the last one started).
It is not an easy decision to leave the trial, but if you want a family it sounds like this is the only option. Even then, I have friends in the young adult cancer community who did the preservation but the frozen embryos / eggs never resulted in a baby. Fertility treatments are financially and emotionally draining. We had given up hope and then had a miracle, but it does not always work out. We started off really hopeful, expecting it would work first try, and when it didn't it is quite devastating. Then you do cycle after cycle and it's tough.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Should I drop out of a trial to preserve my fertility?
So as it turns out, my doctor worked some magic, and I won't have to drop out of the study after all! All of that added stress for no reason.
In the meantime, I'll begin taking shots for egg preservation this Monday and have an egg retrieval scheduled for the 25th. I have no idea what to expect from this process, and I've been pretty unhappy with my fertility clinic up until this point. Their success rates are high and they're relatively affordable, but they make me feel like a number. The goal is 8-10 eggs, and that would give me about a 75% chance of having a baby I was told. I'm worried I won't get enough eggs post treatment, and I'm also worried that any lingering Darzalex in my system will have an effect on my egg quality.
As far as the future, I have thought about adoption, but like stefania888 mentioned, I don't think agencies are going out of there way to give children to cancer patients. Other options might be to adopt an older child or become an adoptive parent through the foster care system. I'm realistic about all of this, including the likelihood I will have biological children, but at least I don't have to make these decision right now.
Thanks for sharing your story Iys2012 and congrats on the little one!
In the meantime, I'll begin taking shots for egg preservation this Monday and have an egg retrieval scheduled for the 25th. I have no idea what to expect from this process, and I've been pretty unhappy with my fertility clinic up until this point. Their success rates are high and they're relatively affordable, but they make me feel like a number. The goal is 8-10 eggs, and that would give me about a 75% chance of having a baby I was told. I'm worried I won't get enough eggs post treatment, and I'm also worried that any lingering Darzalex in my system will have an effect on my egg quality.
As far as the future, I have thought about adoption, but like stefania888 mentioned, I don't think agencies are going out of there way to give children to cancer patients. Other options might be to adopt an older child or become an adoptive parent through the foster care system. I'm realistic about all of this, including the likelihood I will have biological children, but at least I don't have to make these decision right now.
Thanks for sharing your story Iys2012 and congrats on the little one!
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Meshapoo - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: July 21, 2017
- Age at diagnosis: 29
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