› Forums › General Melanoma Community › Treatment optons – Help!
- This topic has 30 replies, 4 voices, and was last updated 9 years, 6 months ago by
MoiraM.
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- May 28, 2016 at 1:31 am
Hi! I am a 29 year old female who was diagnosed with stage 3 melanoma in March. I had a mole on my back 3.3mm. A lymph node biopsy was done under each armpit. Left nodes (2) came back positive 7mm. Right nodes were clear.I then had a complete node dissection on the left. 0/19…all nodes were clear.Now I am faced with treatent options.
1. Nothing
2. Interferon which I refused
3. Clinical trial Pembrolizumab vs placebo – 1 year treatments and 120 days wait for pregnancy
4 clinical trial Mavis . Seviprotimut-l vs placebo – 2 year treatments 90 wait for pregnancyBefore all this happend, we were going to start trying to get pregnant in July. But now with these treatment options everything is pushed back almost 3 years. ..I’m not sure what to do…if I take a trial I could be putting off children and only get a placeBo. ..so it’s like if I choose to do nothing.
I’m looking into naturopathic oncology…and trying to find an option where I can et immunotherapy treatment..but I have not yet found anything. Oncologist suggested I have eggs frozen incase.
I’m just hoping someone out there has some insight or even other option suggestions. ..I really hate the idea of pushing back kids…wondering if I have at least one and then have treatment…do I let nature take its course and hope for the best…will I regret that choice if in a few years it comes back…
Looking forward to seeing what you guys have to say..
- Replies
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- May 28, 2016 at 2:17 am
Hi, I am also 29 and stage 3b and know how stressful all of this is. I have done Yervoy (Ipi) which is FDA approved for stage 3. Not sure why you were not offered that, as it is the best FDA approved option at the moment for stage 3. Hopefully you're seeing a melanoma oncologist.
I can't tell you what to do as far as getting pregnant goes, they say as a rule of thumb it is best to wait 2-3 years after a melanoma diagnosis (especially late stage) before getting pregnant, not having anything to do with treatment just melanoma diagnosis itself. There is the possibility of hormone changes and all of that to cause your body to have a recurrence or spread. Melanoma is one of the only cancers (although it is a rare occurence) that can metastisize to the placenta and/or fetus. I don't want to scare you, but remind you that we are still young enough we could wait a few years to feel safer about getting pregnant, that's been my view on it anyway.
Immunotherapy shouldn't have any effect on your reproductive system, I did not have any eggs frozen and my doctors are fairly certain Ipi will have no effect on my reproductive system. Immunotherapy doesn't work like regular chemo, it doesn't harm healthy cells which is why some women who go through chemo have damage to their reproductive system. So, you should be ok, but you can definitely freeze them and have that as a back up just in case. I kind of wish I did the same, but I wasn't thinking about anything at the time I decided to do Ipi other than to make super sure melanoma stays out of my body.
I know it's super tough having to deal with all this right now, at a really inconvenient point in our lives, trying to start a family and all that (but when is cancer ever convenient?)
You can always message me directly if you want to talk through email too.
All the best,
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- May 28, 2016 at 2:52 am
Just want to clarify that I realize the topic of melanoma and pregnancy is debatable about how dangerous or not it is and whether hormones play a role, but I’m more on the better safe than sorry side of things. -
- May 28, 2016 at 2:52 am
Just want to clarify that I realize the topic of melanoma and pregnancy is debatable about how dangerous or not it is and whether hormones play a role, but I’m more on the better safe than sorry side of things. -
- May 28, 2016 at 2:52 am
Just want to clarify that I realize the topic of melanoma and pregnancy is debatable about how dangerous or not it is and whether hormones play a role, but I’m more on the better safe than sorry side of things. -
- May 28, 2016 at 5:42 pm
There are side effects with any treatment and no one can predict how their bodies will react to any medication. I did fine, fatigue, mildly itchy skin sometimes, acid reflux that was made better by a daily pill, some other minor stuff. Very mild side effects for myself. Others have had both mild and serious side effects. We're all different. I don't know if being young and healthy (besides melanoma) helped me out. All oncologists who deal with immunotherapy drugs daily know very well how to treat the side effects of immunotherapy drugs, so if you do Ipi, or any immunotherapy treatment, you'd keep your oncologist in the loop and any side effect that needs to be treated they will treat and make sure it doesn't get too serious. I know it's a scary decision, my significant other was terrified of me doing Ipi, he wanted me to do watch and wait. I wasn't comfortable with that so I dove into Ipi and I am so glad I did.
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- May 28, 2016 at 5:42 pm
There are side effects with any treatment and no one can predict how their bodies will react to any medication. I did fine, fatigue, mildly itchy skin sometimes, acid reflux that was made better by a daily pill, some other minor stuff. Very mild side effects for myself. Others have had both mild and serious side effects. We're all different. I don't know if being young and healthy (besides melanoma) helped me out. All oncologists who deal with immunotherapy drugs daily know very well how to treat the side effects of immunotherapy drugs, so if you do Ipi, or any immunotherapy treatment, you'd keep your oncologist in the loop and any side effect that needs to be treated they will treat and make sure it doesn't get too serious. I know it's a scary decision, my significant other was terrified of me doing Ipi, he wanted me to do watch and wait. I wasn't comfortable with that so I dove into Ipi and I am so glad I did.
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- May 28, 2016 at 5:42 pm
There are side effects with any treatment and no one can predict how their bodies will react to any medication. I did fine, fatigue, mildly itchy skin sometimes, acid reflux that was made better by a daily pill, some other minor stuff. Very mild side effects for myself. Others have had both mild and serious side effects. We're all different. I don't know if being young and healthy (besides melanoma) helped me out. All oncologists who deal with immunotherapy drugs daily know very well how to treat the side effects of immunotherapy drugs, so if you do Ipi, or any immunotherapy treatment, you'd keep your oncologist in the loop and any side effect that needs to be treated they will treat and make sure it doesn't get too serious. I know it's a scary decision, my significant other was terrified of me doing Ipi, he wanted me to do watch and wait. I wasn't comfortable with that so I dove into Ipi and I am so glad I did.
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- May 28, 2016 at 2:17 am
Hi, I am also 29 and stage 3b and know how stressful all of this is. I have done Yervoy (Ipi) which is FDA approved for stage 3. Not sure why you were not offered that, as it is the best FDA approved option at the moment for stage 3. Hopefully you're seeing a melanoma oncologist.
I can't tell you what to do as far as getting pregnant goes, they say as a rule of thumb it is best to wait 2-3 years after a melanoma diagnosis (especially late stage) before getting pregnant, not having anything to do with treatment just melanoma diagnosis itself. There is the possibility of hormone changes and all of that to cause your body to have a recurrence or spread. Melanoma is one of the only cancers (although it is a rare occurence) that can metastisize to the placenta and/or fetus. I don't want to scare you, but remind you that we are still young enough we could wait a few years to feel safer about getting pregnant, that's been my view on it anyway.
Immunotherapy shouldn't have any effect on your reproductive system, I did not have any eggs frozen and my doctors are fairly certain Ipi will have no effect on my reproductive system. Immunotherapy doesn't work like regular chemo, it doesn't harm healthy cells which is why some women who go through chemo have damage to their reproductive system. So, you should be ok, but you can definitely freeze them and have that as a back up just in case. I kind of wish I did the same, but I wasn't thinking about anything at the time I decided to do Ipi other than to make super sure melanoma stays out of my body.
I know it's super tough having to deal with all this right now, at a really inconvenient point in our lives, trying to start a family and all that (but when is cancer ever convenient?)
You can always message me directly if you want to talk through email too.
All the best,
-
- May 28, 2016 at 2:17 am
Hi, I am also 29 and stage 3b and know how stressful all of this is. I have done Yervoy (Ipi) which is FDA approved for stage 3. Not sure why you were not offered that, as it is the best FDA approved option at the moment for stage 3. Hopefully you're seeing a melanoma oncologist.
I can't tell you what to do as far as getting pregnant goes, they say as a rule of thumb it is best to wait 2-3 years after a melanoma diagnosis (especially late stage) before getting pregnant, not having anything to do with treatment just melanoma diagnosis itself. There is the possibility of hormone changes and all of that to cause your body to have a recurrence or spread. Melanoma is one of the only cancers (although it is a rare occurence) that can metastisize to the placenta and/or fetus. I don't want to scare you, but remind you that we are still young enough we could wait a few years to feel safer about getting pregnant, that's been my view on it anyway.
Immunotherapy shouldn't have any effect on your reproductive system, I did not have any eggs frozen and my doctors are fairly certain Ipi will have no effect on my reproductive system. Immunotherapy doesn't work like regular chemo, it doesn't harm healthy cells which is why some women who go through chemo have damage to their reproductive system. So, you should be ok, but you can definitely freeze them and have that as a back up just in case. I kind of wish I did the same, but I wasn't thinking about anything at the time I decided to do Ipi other than to make super sure melanoma stays out of my body.
I know it's super tough having to deal with all this right now, at a really inconvenient point in our lives, trying to start a family and all that (but when is cancer ever convenient?)
You can always message me directly if you want to talk through email too.
All the best,
-
- May 28, 2016 at 7:18 pm
Hey Deborah,
i'm sorry you have to deal with this awful disease and i hope you remain that stage forever…
my fathers first diagnose 3,5 years ago was stage IIIA, positive sentinel node, all other nodes negative… He did a year of interferon and was cancer free till november last year, now he moved to stage IV, he is on pembro from January 2016 and he is doing great on it…
From what my father experienced, if anyone asks me directly, i would never suggest watch and wait, cause his cancer returned with a vengance between regular 3 month checkups…
So, i would suggest you go ahead with some kind of immunotherapy, just to be sure no microscopic melanoma is lurking somewhere in your body… If i was faced with a decision having a baby or do something more about mel, i would deffinitely put having a baby on hold… Who knows what pregnancy can do to the body, maybe it can activate a negative process in the body regarding mel (or it may not), but i would not want to take that chance… cause reality is, many people progress from stage III if they choose to do nothing…
you have plenty of time to have babies….
but hey, thats just me, you have to be smart and decide if living with 'watch and wait' is something you can do and have a happy carefree life… I just know for myself i couldnt…
all best to you!!!
-
- May 28, 2016 at 7:18 pm
Hey Deborah,
i'm sorry you have to deal with this awful disease and i hope you remain that stage forever…
my fathers first diagnose 3,5 years ago was stage IIIA, positive sentinel node, all other nodes negative… He did a year of interferon and was cancer free till november last year, now he moved to stage IV, he is on pembro from January 2016 and he is doing great on it…
From what my father experienced, if anyone asks me directly, i would never suggest watch and wait, cause his cancer returned with a vengance between regular 3 month checkups…
So, i would suggest you go ahead with some kind of immunotherapy, just to be sure no microscopic melanoma is lurking somewhere in your body… If i was faced with a decision having a baby or do something more about mel, i would deffinitely put having a baby on hold… Who knows what pregnancy can do to the body, maybe it can activate a negative process in the body regarding mel (or it may not), but i would not want to take that chance… cause reality is, many people progress from stage III if they choose to do nothing…
you have plenty of time to have babies….
but hey, thats just me, you have to be smart and decide if living with 'watch and wait' is something you can do and have a happy carefree life… I just know for myself i couldnt…
all best to you!!!
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- May 30, 2016 at 3:01 am
It is definitely approved for stage 3, so there shouldn't be any reason why you couldn't get it.
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- May 31, 2016 at 1:47 am
Found ot today that it is not available to.me…I’m in Canada and it is only available to stage IV..maybe IIIc in some cases. I am stage IIIa so not available to me. I am now looking into naturopathic options as I do not want to be part of a trial…I don’t want to put my life on hold when there is a 50/50 chance that I get a placeBo treatment…might as well do something natural that would allow me to have a baby and try to avoid metastasis. -
- May 31, 2016 at 2:10 am
Oh darn, why is it not approved in Canada yet?! Makes me frustrated for you!
Sounds like you're going to do the watch and wait approach.. that's kind of how I view naturopathic treatment, as there is no natural treatment out in the world that can cure cancer (I wish!), but certainly getting healthy and doing what you can do get your immune system in great shape is always good.
Just an idea, if you wanted to do a trial and placebo is on one arm, it's another way of doing watch and wait really. Only, you'd be monitered a lot more closely because you would be in a trial. Placebo isn't bad in a stage 3 trial, sounds bad, but it's the same as doing no treatment which is a real option anyway.
I wish all the best for you and hope melanoma stays away so you can live a long healthy life!
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- May 31, 2016 at 2:10 am
Oh darn, why is it not approved in Canada yet?! Makes me frustrated for you!
Sounds like you're going to do the watch and wait approach.. that's kind of how I view naturopathic treatment, as there is no natural treatment out in the world that can cure cancer (I wish!), but certainly getting healthy and doing what you can do get your immune system in great shape is always good.
Just an idea, if you wanted to do a trial and placebo is on one arm, it's another way of doing watch and wait really. Only, you'd be monitered a lot more closely because you would be in a trial. Placebo isn't bad in a stage 3 trial, sounds bad, but it's the same as doing no treatment which is a real option anyway.
I wish all the best for you and hope melanoma stays away so you can live a long healthy life!
-
- May 31, 2016 at 2:10 am
Oh darn, why is it not approved in Canada yet?! Makes me frustrated for you!
Sounds like you're going to do the watch and wait approach.. that's kind of how I view naturopathic treatment, as there is no natural treatment out in the world that can cure cancer (I wish!), but certainly getting healthy and doing what you can do get your immune system in great shape is always good.
Just an idea, if you wanted to do a trial and placebo is on one arm, it's another way of doing watch and wait really. Only, you'd be monitered a lot more closely because you would be in a trial. Placebo isn't bad in a stage 3 trial, sounds bad, but it's the same as doing no treatment which is a real option anyway.
I wish all the best for you and hope melanoma stays away so you can live a long healthy life!
-
- May 31, 2016 at 10:14 pm
It sounds like a positive decision to me. I am not into nauropathic treatments but keeping your immue system as healthy as possible seems like an excellent idea.
Have you talked to someone about how you 'watch and wait' and manage a pregnancy at the same time? I don't know much about this but I am sure melanoma specialists do. You won't be able to have CT scans but some German teams monitor lymph nodes using ultrasound. Just a thought.
Maybe it isn't such a bad idea not to rush into anything that includes Ipi. My side effects from Ipi caused my anterior pituitary to pack up. It's permanent and as the anterior pituitary is a master control gland, that means my body no longer produces lots of hormones, including many reproductive hormones. As I am 56 this does not matter, it just finished off my rather protracted menopuase, but it would be a consideration for a younger woman who wanted to get pregnant.
-
- May 31, 2016 at 10:14 pm
It sounds like a positive decision to me. I am not into nauropathic treatments but keeping your immue system as healthy as possible seems like an excellent idea.
Have you talked to someone about how you 'watch and wait' and manage a pregnancy at the same time? I don't know much about this but I am sure melanoma specialists do. You won't be able to have CT scans but some German teams monitor lymph nodes using ultrasound. Just a thought.
Maybe it isn't such a bad idea not to rush into anything that includes Ipi. My side effects from Ipi caused my anterior pituitary to pack up. It's permanent and as the anterior pituitary is a master control gland, that means my body no longer produces lots of hormones, including many reproductive hormones. As I am 56 this does not matter, it just finished off my rather protracted menopuase, but it would be a consideration for a younger woman who wanted to get pregnant.
-
- May 31, 2016 at 10:14 pm
It sounds like a positive decision to me. I am not into nauropathic treatments but keeping your immue system as healthy as possible seems like an excellent idea.
Have you talked to someone about how you 'watch and wait' and manage a pregnancy at the same time? I don't know much about this but I am sure melanoma specialists do. You won't be able to have CT scans but some German teams monitor lymph nodes using ultrasound. Just a thought.
Maybe it isn't such a bad idea not to rush into anything that includes Ipi. My side effects from Ipi caused my anterior pituitary to pack up. It's permanent and as the anterior pituitary is a master control gland, that means my body no longer produces lots of hormones, including many reproductive hormones. As I am 56 this does not matter, it just finished off my rather protracted menopuase, but it would be a consideration for a younger woman who wanted to get pregnant.
-
- May 31, 2016 at 1:47 am
Found ot today that it is not available to.me…I’m in Canada and it is only available to stage IV..maybe IIIc in some cases. I am stage IIIa so not available to me. I am now looking into naturopathic options as I do not want to be part of a trial…I don’t want to put my life on hold when there is a 50/50 chance that I get a placeBo treatment…might as well do something natural that would allow me to have a baby and try to avoid metastasis. -
- May 31, 2016 at 1:47 am
Found ot today that it is not available to.me…I’m in Canada and it is only available to stage IV..maybe IIIc in some cases. I am stage IIIa so not available to me. I am now looking into naturopathic options as I do not want to be part of a trial…I don’t want to put my life on hold when there is a 50/50 chance that I get a placeBo treatment…might as well do something natural that would allow me to have a baby and try to avoid metastasis. -
- May 30, 2016 at 3:01 am
It is definitely approved for stage 3, so there shouldn't be any reason why you couldn't get it.
-
- May 30, 2016 at 3:01 am
It is definitely approved for stage 3, so there shouldn't be any reason why you couldn't get it.
-
- May 28, 2016 at 7:18 pm
Hey Deborah,
i'm sorry you have to deal with this awful disease and i hope you remain that stage forever…
my fathers first diagnose 3,5 years ago was stage IIIA, positive sentinel node, all other nodes negative… He did a year of interferon and was cancer free till november last year, now he moved to stage IV, he is on pembro from January 2016 and he is doing great on it…
From what my father experienced, if anyone asks me directly, i would never suggest watch and wait, cause his cancer returned with a vengance between regular 3 month checkups…
So, i would suggest you go ahead with some kind of immunotherapy, just to be sure no microscopic melanoma is lurking somewhere in your body… If i was faced with a decision having a baby or do something more about mel, i would deffinitely put having a baby on hold… Who knows what pregnancy can do to the body, maybe it can activate a negative process in the body regarding mel (or it may not), but i would not want to take that chance… cause reality is, many people progress from stage III if they choose to do nothing…
you have plenty of time to have babies….
but hey, thats just me, you have to be smart and decide if living with 'watch and wait' is something you can do and have a happy carefree life… I just know for myself i couldnt…
all best to you!!!
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Tagged: cutaneous melanoma
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