› Forums › General Melanoma Community › It’s. been a while. Not good update
- This topic has 33 replies, 4 voices, and was last updated 7 years, 4 months ago by
Calynda.
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- November 25, 2016 at 6:59 am
I was diagnosed with stage 3b while I was pregnant almost 4 years ago.
today I went to the ER and had a MRI done. Tomorrow I head to see a radiation oncologist. They found 3 lesions in my head "consistent with melanoma."
My kid is 3.5, I just finalized my divorce. At least, since I moved in with my parents, I have help.
I'm currently in central Illinois and have to research where I should be going here. I was originally diagnosed out in Southern California while with Kaiser.
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- November 25, 2016 at 7:53 am
I'm so sorry you've had to come back into the world of melanoma. Best thing you can do is find a melanoma specialist. Chicago might not be super close, but it is probably the closest city with the best options for doctors for you. I have heard Dr. Jason Luke speak a few times on webinars and he's one of the top guys in the melanoma world, he's at the University of Chicago I believe. There are other great melanoma specialists in the Chicago area as well I'm sure. There are others on here who have gone through having brain mets and come out the other side with maybe a few holes in the brain but survived and still smart cookies (I am just assuming by head you're speaking brain mets). You should be getting SRS or cyberknife radiation and then be getting an immunotherapy soon after radiation, such as Ipi/Nivo (Yervo/Opdivo) or Keytruda, those are the top FDA approved options that have proven to work on those with brain mets. I am sure others on here will chime in that have actually gone through this process and give their advice and insight. I wanted to respond since I was here, to hopefully give you a little bit of reassurance that it's a bump in the road, and you'll get through this, it's just a crappy road to have to take for a bit.
Sending hugs,
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- November 25, 2016 at 7:53 am
I'm so sorry you've had to come back into the world of melanoma. Best thing you can do is find a melanoma specialist. Chicago might not be super close, but it is probably the closest city with the best options for doctors for you. I have heard Dr. Jason Luke speak a few times on webinars and he's one of the top guys in the melanoma world, he's at the University of Chicago I believe. There are other great melanoma specialists in the Chicago area as well I'm sure. There are others on here who have gone through having brain mets and come out the other side with maybe a few holes in the brain but survived and still smart cookies (I am just assuming by head you're speaking brain mets). You should be getting SRS or cyberknife radiation and then be getting an immunotherapy soon after radiation, such as Ipi/Nivo (Yervo/Opdivo) or Keytruda, those are the top FDA approved options that have proven to work on those with brain mets. I am sure others on here will chime in that have actually gone through this process and give their advice and insight. I wanted to respond since I was here, to hopefully give you a little bit of reassurance that it's a bump in the road, and you'll get through this, it's just a crappy road to have to take for a bit.
Sending hugs,
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- November 25, 2016 at 7:53 am
I'm so sorry you've had to come back into the world of melanoma. Best thing you can do is find a melanoma specialist. Chicago might not be super close, but it is probably the closest city with the best options for doctors for you. I have heard Dr. Jason Luke speak a few times on webinars and he's one of the top guys in the melanoma world, he's at the University of Chicago I believe. There are other great melanoma specialists in the Chicago area as well I'm sure. There are others on here who have gone through having brain mets and come out the other side with maybe a few holes in the brain but survived and still smart cookies (I am just assuming by head you're speaking brain mets). You should be getting SRS or cyberknife radiation and then be getting an immunotherapy soon after radiation, such as Ipi/Nivo (Yervo/Opdivo) or Keytruda, those are the top FDA approved options that have proven to work on those with brain mets. I am sure others on here will chime in that have actually gone through this process and give their advice and insight. I wanted to respond since I was here, to hopefully give you a little bit of reassurance that it's a bump in the road, and you'll get through this, it's just a crappy road to have to take for a bit.
Sending hugs,
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- November 25, 2016 at 10:30 am
Thank you.
They are talking about radiation first. I haven't been able to sleep and I've been trying to catch up on what's been changing in the melanoma world. I should know a bit more once I meet with other doctors today. I definitely want to work with someone that specializes in melanoma. I'll look up in the Chicago area.
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- November 25, 2016 at 10:30 am
Thank you.
They are talking about radiation first. I haven't been able to sleep and I've been trying to catch up on what's been changing in the melanoma world. I should know a bit more once I meet with other doctors today. I definitely want to work with someone that specializes in melanoma. I'll look up in the Chicago area.
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- November 25, 2016 at 10:30 am
Thank you.
They are talking about radiation first. I haven't been able to sleep and I've been trying to catch up on what's been changing in the melanoma world. I should know a bit more once I meet with other doctors today. I definitely want to work with someone that specializes in melanoma. I'll look up in the Chicago area.
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- November 25, 2016 at 1:22 pm
What led you to go to the ER?
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- November 25, 2016 at 1:22 pm
What led you to go to the ER?
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- November 25, 2016 at 1:44 pm
The headache that kept coming back. I had been to the walk in clinic a few times over the last few weeks, but then I had some double vision stuff going on and knew I needed to get scanned. Since moving here last year, getting my kid set up in school, getting my divorce started and finished and working, I just hadn't done the set up appointments with new doctors here until recently. I already had a PCP appointment scheduled for the 5th of December.
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- November 25, 2016 at 1:44 pm
The headache that kept coming back. I had been to the walk in clinic a few times over the last few weeks, but then I had some double vision stuff going on and knew I needed to get scanned. Since moving here last year, getting my kid set up in school, getting my divorce started and finished and working, I just hadn't done the set up appointments with new doctors here until recently. I already had a PCP appointment scheduled for the 5th of December.
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- November 25, 2016 at 1:44 pm
The headache that kept coming back. I had been to the walk in clinic a few times over the last few weeks, but then I had some double vision stuff going on and knew I needed to get scanned. Since moving here last year, getting my kid set up in school, getting my divorce started and finished and working, I just hadn't done the set up appointments with new doctors here until recently. I already had a PCP appointment scheduled for the 5th of December.
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- November 25, 2016 at 1:22 pm
What led you to go to the ER?
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- November 25, 2016 at 5:37 pm
So sorry to hear you have had to circle back into the active treatment zone. On the good news note… much has been going on in the area of research and new FDA approved therapies, so you've got lots of hope ahead! Definitely find yourself a good melanoma specialist, and preferably a place that has a radiation oncologist available as part of the team. I'm in a regional hospital area, but drive to So Cal for treatments, so I have my medical and radiation oncology teams all under the same roof. If that's not possible… as sometimes with little ones, travel can be difficult… your two oncologists should (at the very least) be really good at communicating with doctors outside of their facility and/or area. The radiation oncologist will very likely suggest targeted radiation, as it has fewer side effects and is more effective on melanoma tumors, than whole brain. Your medical oncologist will most likely toss immunotherapy into your "cancer killing" routine as well.
The National Cancer Institute website has an easy way to determine where the certified comprehensive cancer centers nearest to you are located. You mentioned central Illinois, so I'm not sure if you may be closer to Chicago, or perhaps St. Louis or maybe even Iowa. I guess it depends just how "centered" you are. : ) Here is a link to their search: https://www.cancer.gov/research/nci-role/cancer-centers/find
There are more than a few of us here on the forum who have undergone treatment for brain mets, or have a family member who has done so. We are here for you if you need a shoulder to vent on, or have questions about patient experiences.
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- November 25, 2016 at 5:37 pm
So sorry to hear you have had to circle back into the active treatment zone. On the good news note… much has been going on in the area of research and new FDA approved therapies, so you've got lots of hope ahead! Definitely find yourself a good melanoma specialist, and preferably a place that has a radiation oncologist available as part of the team. I'm in a regional hospital area, but drive to So Cal for treatments, so I have my medical and radiation oncology teams all under the same roof. If that's not possible… as sometimes with little ones, travel can be difficult… your two oncologists should (at the very least) be really good at communicating with doctors outside of their facility and/or area. The radiation oncologist will very likely suggest targeted radiation, as it has fewer side effects and is more effective on melanoma tumors, than whole brain. Your medical oncologist will most likely toss immunotherapy into your "cancer killing" routine as well.
The National Cancer Institute website has an easy way to determine where the certified comprehensive cancer centers nearest to you are located. You mentioned central Illinois, so I'm not sure if you may be closer to Chicago, or perhaps St. Louis or maybe even Iowa. I guess it depends just how "centered" you are. : ) Here is a link to their search: https://www.cancer.gov/research/nci-role/cancer-centers/find
There are more than a few of us here on the forum who have undergone treatment for brain mets, or have a family member who has done so. We are here for you if you need a shoulder to vent on, or have questions about patient experiences.
-
- November 25, 2016 at 5:37 pm
So sorry to hear you have had to circle back into the active treatment zone. On the good news note… much has been going on in the area of research and new FDA approved therapies, so you've got lots of hope ahead! Definitely find yourself a good melanoma specialist, and preferably a place that has a radiation oncologist available as part of the team. I'm in a regional hospital area, but drive to So Cal for treatments, so I have my medical and radiation oncology teams all under the same roof. If that's not possible… as sometimes with little ones, travel can be difficult… your two oncologists should (at the very least) be really good at communicating with doctors outside of their facility and/or area. The radiation oncologist will very likely suggest targeted radiation, as it has fewer side effects and is more effective on melanoma tumors, than whole brain. Your medical oncologist will most likely toss immunotherapy into your "cancer killing" routine as well.
The National Cancer Institute website has an easy way to determine where the certified comprehensive cancer centers nearest to you are located. You mentioned central Illinois, so I'm not sure if you may be closer to Chicago, or perhaps St. Louis or maybe even Iowa. I guess it depends just how "centered" you are. : ) Here is a link to their search: https://www.cancer.gov/research/nci-role/cancer-centers/find
There are more than a few of us here on the forum who have undergone treatment for brain mets, or have a family member who has done so. We are here for you if you need a shoulder to vent on, or have questions about patient experiences.
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- November 26, 2016 at 2:01 am
I am pretty much right in the middle in Decatur. I'm starting radiation later this week. They're going to do targeted and a trial. There were a few smaller spots that may be other starting areas.
I didn't sleep at all. I asked for something to help me get some sleep, so I should do okay with that tonight and can dig a little more into the upcoming procedures. I was supposed to get my hair cut on Monday. I'm thinking about just cutting it really short to minimize clean up when the time comes. I don't know yet.
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- November 26, 2016 at 2:01 am
I am pretty much right in the middle in Decatur. I'm starting radiation later this week. They're going to do targeted and a trial. There were a few smaller spots that may be other starting areas.
I didn't sleep at all. I asked for something to help me get some sleep, so I should do okay with that tonight and can dig a little more into the upcoming procedures. I was supposed to get my hair cut on Monday. I'm thinking about just cutting it really short to minimize clean up when the time comes. I don't know yet.
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- November 26, 2016 at 2:01 am
I am pretty much right in the middle in Decatur. I'm starting radiation later this week. They're going to do targeted and a trial. There were a few smaller spots that may be other starting areas.
I didn't sleep at all. I asked for something to help me get some sleep, so I should do okay with that tonight and can dig a little more into the upcoming procedures. I was supposed to get my hair cut on Monday. I'm thinking about just cutting it really short to minimize clean up when the time comes. I don't know yet.
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- November 26, 2016 at 2:05 am
Also, my intro appointment today was with a radiation oncologist. Dr Yoon at the cancer care center here in Decatur. My medical oncologist is in the same building. I talked a bit about how I'd like to have a melanoma specialist at least for consult and advising. Potentially the one up in Chicago that the other member posted about last night. That part of Chicago is only about 3 hours away and I have some friends up there I could stay with if necessary
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- November 26, 2016 at 2:05 am
Also, my intro appointment today was with a radiation oncologist. Dr Yoon at the cancer care center here in Decatur. My medical oncologist is in the same building. I talked a bit about how I'd like to have a melanoma specialist at least for consult and advising. Potentially the one up in Chicago that the other member posted about last night. That part of Chicago is only about 3 hours away and I have some friends up there I could stay with if necessary
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- November 26, 2016 at 3:46 pm
If you have friends in the Chicago area that you could stay with, a second opinion with a melanoma specialist would be a fantastic idea. It's a good way to make contact with them and get the latest and greatest info on what your options are. No offense to general oncologists, but they have to be informed about such a large variety of cancers, that they can't possibly be expected to keep up with the latest landscape for one specific cancer, let alone it's varied mutations and treatment research that is being talked about in the hallways at conferences.
As for your hair… unless you're ready to go short for a sassy new look, you'll likely find that it's all going to stay just as it is. : ) I've got a thick long mop of hair, and even with all of the gamma knife brain radiation and various immuno drugs, I've not shed! I will admit, there are those days when it is up in a bun, or tied back in a pony tail, because I just don't feel like dealing with it. But as far as loss or thinning from treatments… nope. It's all still here! Plus, it has come in handy to cover the craniotomy scars! ha ha ha! ; )
Hang tough! You're going to be blasted with a whirlwind of information in the coming weeks. If you've got someone you can bring along to appointments, it'll help with the "What did they say?" once you've left the doc's office. : )
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- November 26, 2016 at 3:46 pm
If you have friends in the Chicago area that you could stay with, a second opinion with a melanoma specialist would be a fantastic idea. It's a good way to make contact with them and get the latest and greatest info on what your options are. No offense to general oncologists, but they have to be informed about such a large variety of cancers, that they can't possibly be expected to keep up with the latest landscape for one specific cancer, let alone it's varied mutations and treatment research that is being talked about in the hallways at conferences.
As for your hair… unless you're ready to go short for a sassy new look, you'll likely find that it's all going to stay just as it is. : ) I've got a thick long mop of hair, and even with all of the gamma knife brain radiation and various immuno drugs, I've not shed! I will admit, there are those days when it is up in a bun, or tied back in a pony tail, because I just don't feel like dealing with it. But as far as loss or thinning from treatments… nope. It's all still here! Plus, it has come in handy to cover the craniotomy scars! ha ha ha! ; )
Hang tough! You're going to be blasted with a whirlwind of information in the coming weeks. If you've got someone you can bring along to appointments, it'll help with the "What did they say?" once you've left the doc's office. : )
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- November 27, 2016 at 1:13 am
My mom has been coming with me to everything. For now, I can't drive so someone has to at least take me. It also helps that she has medical background and I gat my calmness from her when it comes to dealing with emotionally scary things. We can both compartmentalize really well and process and act. It's nice and helps keep things under control. My dad takes a bit more handling. It makes it harder.
l did cut my hair off today. I kinda like it, but I'm always changing my hair anyway.
I did start the talk about how I want a melanoma specialist to at least be involved and consulted through my treatment. The doctors I'm working with now are open to second opinions (he actually brought it up to make sure I wasn't going to feel uncomfortable if it was something I wanted to do… that he wouldn't be offended.) I feel like I've got the start of a good team and the more the merrier.
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- November 27, 2016 at 1:13 am
My mom has been coming with me to everything. For now, I can't drive so someone has to at least take me. It also helps that she has medical background and I gat my calmness from her when it comes to dealing with emotionally scary things. We can both compartmentalize really well and process and act. It's nice and helps keep things under control. My dad takes a bit more handling. It makes it harder.
l did cut my hair off today. I kinda like it, but I'm always changing my hair anyway.
I did start the talk about how I want a melanoma specialist to at least be involved and consulted through my treatment. The doctors I'm working with now are open to second opinions (he actually brought it up to make sure I wasn't going to feel uncomfortable if it was something I wanted to do… that he wouldn't be offended.) I feel like I've got the start of a good team and the more the merrier.
-
- November 27, 2016 at 1:13 am
My mom has been coming with me to everything. For now, I can't drive so someone has to at least take me. It also helps that she has medical background and I gat my calmness from her when it comes to dealing with emotionally scary things. We can both compartmentalize really well and process and act. It's nice and helps keep things under control. My dad takes a bit more handling. It makes it harder.
l did cut my hair off today. I kinda like it, but I'm always changing my hair anyway.
I did start the talk about how I want a melanoma specialist to at least be involved and consulted through my treatment. The doctors I'm working with now are open to second opinions (he actually brought it up to make sure I wasn't going to feel uncomfortable if it was something I wanted to do… that he wouldn't be offended.) I feel like I've got the start of a good team and the more the merrier.
-
- November 26, 2016 at 3:46 pm
If you have friends in the Chicago area that you could stay with, a second opinion with a melanoma specialist would be a fantastic idea. It's a good way to make contact with them and get the latest and greatest info on what your options are. No offense to general oncologists, but they have to be informed about such a large variety of cancers, that they can't possibly be expected to keep up with the latest landscape for one specific cancer, let alone it's varied mutations and treatment research that is being talked about in the hallways at conferences.
As for your hair… unless you're ready to go short for a sassy new look, you'll likely find that it's all going to stay just as it is. : ) I've got a thick long mop of hair, and even with all of the gamma knife brain radiation and various immuno drugs, I've not shed! I will admit, there are those days when it is up in a bun, or tied back in a pony tail, because I just don't feel like dealing with it. But as far as loss or thinning from treatments… nope. It's all still here! Plus, it has come in handy to cover the craniotomy scars! ha ha ha! ; )
Hang tough! You're going to be blasted with a whirlwind of information in the coming weeks. If you've got someone you can bring along to appointments, it'll help with the "What did they say?" once you've left the doc's office. : )
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- November 26, 2016 at 2:05 am
Also, my intro appointment today was with a radiation oncologist. Dr Yoon at the cancer care center here in Decatur. My medical oncologist is in the same building. I talked a bit about how I'd like to have a melanoma specialist at least for consult and advising. Potentially the one up in Chicago that the other member posted about last night. That part of Chicago is only about 3 hours away and I have some friends up there I could stay with if necessary
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- November 30, 2016 at 10:15 pm
Just an update. I had my CT simulation and radiation prep appointment on Monday. I have my PET scan on Friday morning at 8am.
I just got a call to schedule my targeted radiation appointment. That is also scheduled for Friday. It's at 3:15. Friday will be a busy day. I'm glad to be getting started.
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- November 30, 2016 at 10:15 pm
Just an update. I had my CT simulation and radiation prep appointment on Monday. I have my PET scan on Friday morning at 8am.
I just got a call to schedule my targeted radiation appointment. That is also scheduled for Friday. It's at 3:15. Friday will be a busy day. I'm glad to be getting started.
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- November 30, 2016 at 10:15 pm
Just an update. I had my CT simulation and radiation prep appointment on Monday. I have my PET scan on Friday morning at 8am.
I just got a call to schedule my targeted radiation appointment. That is also scheduled for Friday. It's at 3:15. Friday will be a busy day. I'm glad to be getting started.
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