› Forums › General Melanoma Community › Stage IV Melanoma, where do we go from here?
- This topic has 36 replies, 7 voices, and was last updated 7 years, 5 months ago by
Helping Hands.
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- December 1, 2016 at 12:02 am
First off I would like to wish everyone one this board the very best with all the struggles they are going through. I have read so many stories and have cried while reading some. There are no words! My mom was recently diagnosed with stage IV, first diagnosed when her yearly mammogram came back with a mass and the biopsy indicated Melanoma. What a minute, what!! She goes yearly for her mammogram and also goes to a dermatologist for yearly skin checks. How could this be? No primary? Guess it doesn't really matter at this point. Even though she was doing everything right and taking care of herself this happened.
This all started in September of this year. In October she went to the Moffitt Center in Tampa to meet with the specialist and start more testing. CT! MRI and another biopsy on a lump on her back. This showed several spots throughout her entire body including one small tumor on her brain. They treated that with stereotactic radiation and we will go back in a couple of weeks. They want to wait 6 weeks To do a follow up MRI to see how it reacted. In the meantime she started with immune therapy, Keytruda which she is getting closer to her home at a Florida Cancer center. The Moffitt center is 2 hours one way and that is too much for her or my dad to do. I've been flying down when she has to go to Moffitt to take her.
Before they started her on Keytruda this other center did a PET scan which showed more brain tumors. One of many concerns is that if these tumors are spreading so rapidly are we doing all we should be? The follow up at Moffitt isn't until Dec 13th. However they were sent the disc of the PET scan so they would have the results.
She has had only 1 dose of Keytruda, the 2nd one is tomorrow and had some of the side effects from that one. I know everyone is different but is it safe to say that the side effects will continue with each treatment?
FOr all of you that have been through this. What would you suggest is the best kind of support that you've received or what would you recommend that has really helped you through your process?I wanted to start some sort of network with people in her area to help with meals or something it's so hard living in MA
Thank you for your feedback. I loom forward to hearing from you.
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- December 1, 2016 at 12:21 am
PET scans are not good scans for the brain or soft tissue organs. There are false positives with PET scans all the time. If something unusual in the brain is seen on a PET, then a follow up brain MRI should be done to see if there really is something there. I would suggest she get a brain MRI sooner than 6 weeks, just to be sure, because if there are more mets in her brain, then she would probably need more SRS to target those as well.
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- December 1, 2016 at 12:21 am
PET scans are not good scans for the brain or soft tissue organs. There are false positives with PET scans all the time. If something unusual in the brain is seen on a PET, then a follow up brain MRI should be done to see if there really is something there. I would suggest she get a brain MRI sooner than 6 weeks, just to be sure, because if there are more mets in her brain, then she would probably need more SRS to target those as well.
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- December 1, 2016 at 12:21 am
PET scans are not good scans for the brain or soft tissue organs. There are false positives with PET scans all the time. If something unusual in the brain is seen on a PET, then a follow up brain MRI should be done to see if there really is something there. I would suggest she get a brain MRI sooner than 6 weeks, just to be sure, because if there are more mets in her brain, then she would probably need more SRS to target those as well.
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- December 1, 2016 at 3:25 am
I would say if she is going to get side effects they can occur at any time even months after she has started, but if she is starting to get side effects they usually build over time.
My best advice is find a melanoma oncologist who you trust and research here and elsewhere and bring up anything you find with your oncologist
best wishes
anne-Louise
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- December 1, 2016 at 3:25 am
I would say if she is going to get side effects they can occur at any time even months after she has started, but if she is starting to get side effects they usually build over time.
My best advice is find a melanoma oncologist who you trust and research here and elsewhere and bring up anything you find with your oncologist
best wishes
anne-Louise
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- December 1, 2016 at 3:25 am
I would say if she is going to get side effects they can occur at any time even months after she has started, but if she is starting to get side effects they usually build over time.
My best advice is find a melanoma oncologist who you trust and research here and elsewhere and bring up anything you find with your oncologist
best wishes
anne-Louise
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- December 1, 2016 at 2:37 pm
Hold on tight to that oncologist and radiation oncologist at Moffitt. Their expertise will be invaluable. I understand the challenges of getting to a distant center for treatments. As long as her more local treatment doctor is in close communication with the oncology staff at Moffitt, getting Keytruda infusions closer to home should not make a huge difference. What I would suggest, however, is that she leave her brain in the hands of the radiation oncology team at Moffitt, and perhaps coordinate appointments with a melanoma specialist medical oncologist each time she travels over there to follow up with radiation oncology. I drive 180 miles one way to Los Angeles for treatment, because my radiation oncologist is top notch. Everyone's brain tumors will vary in how often they crop up (mine were very frequent), and how they respond to treatments…. but everyone with brain metastasis will tell you that is the utmost important area to effectively treat… whether it's multiple tiny lesions, or one "golf ball" growing in there.
I was fortunate that Keytruda side effects were minimal for a long time. What are her side effects? Is she still on steroids following the SRS? The steroids should help with Keytruda side effects, but they also carry side effects of their own. Steroids left me feeling chronically drunk. I was bleary headed and living in a fog. Initially, we thought it might be the brain lesions, but as I tapered off and finally stopped the steroids, I was completely clear minded once again. Steroids also caused a diabetic response in me. Each of us respond a bit differently to the balance of medications, and getting things to the best quality of life level. On a more positive note, if she is a responder to Keytruda, it has been shown to stop brain lesions as well!
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- December 1, 2016 at 2:37 pm
Hold on tight to that oncologist and radiation oncologist at Moffitt. Their expertise will be invaluable. I understand the challenges of getting to a distant center for treatments. As long as her more local treatment doctor is in close communication with the oncology staff at Moffitt, getting Keytruda infusions closer to home should not make a huge difference. What I would suggest, however, is that she leave her brain in the hands of the radiation oncology team at Moffitt, and perhaps coordinate appointments with a melanoma specialist medical oncologist each time she travels over there to follow up with radiation oncology. I drive 180 miles one way to Los Angeles for treatment, because my radiation oncologist is top notch. Everyone's brain tumors will vary in how often they crop up (mine were very frequent), and how they respond to treatments…. but everyone with brain metastasis will tell you that is the utmost important area to effectively treat… whether it's multiple tiny lesions, or one "golf ball" growing in there.
I was fortunate that Keytruda side effects were minimal for a long time. What are her side effects? Is she still on steroids following the SRS? The steroids should help with Keytruda side effects, but they also carry side effects of their own. Steroids left me feeling chronically drunk. I was bleary headed and living in a fog. Initially, we thought it might be the brain lesions, but as I tapered off and finally stopped the steroids, I was completely clear minded once again. Steroids also caused a diabetic response in me. Each of us respond a bit differently to the balance of medications, and getting things to the best quality of life level. On a more positive note, if she is a responder to Keytruda, it has been shown to stop brain lesions as well!
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- December 1, 2016 at 2:37 pm
Hold on tight to that oncologist and radiation oncologist at Moffitt. Their expertise will be invaluable. I understand the challenges of getting to a distant center for treatments. As long as her more local treatment doctor is in close communication with the oncology staff at Moffitt, getting Keytruda infusions closer to home should not make a huge difference. What I would suggest, however, is that she leave her brain in the hands of the radiation oncology team at Moffitt, and perhaps coordinate appointments with a melanoma specialist medical oncologist each time she travels over there to follow up with radiation oncology. I drive 180 miles one way to Los Angeles for treatment, because my radiation oncologist is top notch. Everyone's brain tumors will vary in how often they crop up (mine were very frequent), and how they respond to treatments…. but everyone with brain metastasis will tell you that is the utmost important area to effectively treat… whether it's multiple tiny lesions, or one "golf ball" growing in there.
I was fortunate that Keytruda side effects were minimal for a long time. What are her side effects? Is she still on steroids following the SRS? The steroids should help with Keytruda side effects, but they also carry side effects of their own. Steroids left me feeling chronically drunk. I was bleary headed and living in a fog. Initially, we thought it might be the brain lesions, but as I tapered off and finally stopped the steroids, I was completely clear minded once again. Steroids also caused a diabetic response in me. Each of us respond a bit differently to the balance of medications, and getting things to the best quality of life level. On a more positive note, if she is a responder to Keytruda, it has been shown to stop brain lesions as well!
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- December 2, 2016 at 9:33 am
No she was only on steroids following radiation. Some of her side effects are leg and back muscles are very painful, loss of appetite, heart palpitation, not sleeping well which is more likely the mind over thinking. We are seem to do this, right!
Do you know at what point you can tell if she is responding to Keytruda? My tought is if she's feeling pain in the tumors it must be doing something, hopefully destroying them.
If she does have multiple brain metastasis, do you know how they treat all of them?
She had Keytruda yesterday and head back to Moffitt in 10 days so I will make another list of questions.
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- December 2, 2016 at 9:33 am
No she was only on steroids following radiation. Some of her side effects are leg and back muscles are very painful, loss of appetite, heart palpitation, not sleeping well which is more likely the mind over thinking. We are seem to do this, right!
Do you know at what point you can tell if she is responding to Keytruda? My tought is if she's feeling pain in the tumors it must be doing something, hopefully destroying them.
If she does have multiple brain metastasis, do you know how they treat all of them?
She had Keytruda yesterday and head back to Moffitt in 10 days so I will make another list of questions.
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- December 2, 2016 at 9:33 am
No she was only on steroids following radiation. Some of her side effects are leg and back muscles are very painful, loss of appetite, heart palpitation, not sleeping well which is more likely the mind over thinking. We are seem to do this, right!
Do you know at what point you can tell if she is responding to Keytruda? My tought is if she's feeling pain in the tumors it must be doing something, hopefully destroying them.
If she does have multiple brain metastasis, do you know how they treat all of them?
She had Keytruda yesterday and head back to Moffitt in 10 days so I will make another list of questions.
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- December 2, 2016 at 3:20 pm
I never had tumor pain, but have read other posts where people have discussed it in a positive sense. Doctors should be able to check blood labs for any of the more common causes for her side effects. Muscle pains and mind games will definitely make sleeping difficult. The muscle pains are possibly an autoimmune reaction to the Keytruda, which is something the docs can find in blood work and by description of her symptoms.
As for brain metastasis, if she ends up with more, and they are multiple, they can all be treated at the same time. The most I ever had "zapped" with gamma at one time was 9….. but there are others here who have themselves, or family with more than that treated. In sum total, I've had 39 treated over a span of 10 rounds of gamma knife. Her radiation oncologist can discuss the different options for treatment, depending on the number of lesions and their sizes. Most docs will lean toward targeted radiation versus whole brain, as there is a lot of new evidence showing targeted is more effective. HOWEVER… if the tumor number is "out of control", sometimes that may not be an option. This is why Moffitt is a great place to have the top doctors helping make these decisions. It's entirely possible that she will have no new lesions, and can simply follow up every month or two under the watchful eyes of her rad onc team.
Best wishes for clean upcoming scans! Let's hope this turns into a long road with brand new smooooooth pavement!
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- December 2, 2016 at 3:20 pm
I never had tumor pain, but have read other posts where people have discussed it in a positive sense. Doctors should be able to check blood labs for any of the more common causes for her side effects. Muscle pains and mind games will definitely make sleeping difficult. The muscle pains are possibly an autoimmune reaction to the Keytruda, which is something the docs can find in blood work and by description of her symptoms.
As for brain metastasis, if she ends up with more, and they are multiple, they can all be treated at the same time. The most I ever had "zapped" with gamma at one time was 9….. but there are others here who have themselves, or family with more than that treated. In sum total, I've had 39 treated over a span of 10 rounds of gamma knife. Her radiation oncologist can discuss the different options for treatment, depending on the number of lesions and their sizes. Most docs will lean toward targeted radiation versus whole brain, as there is a lot of new evidence showing targeted is more effective. HOWEVER… if the tumor number is "out of control", sometimes that may not be an option. This is why Moffitt is a great place to have the top doctors helping make these decisions. It's entirely possible that she will have no new lesions, and can simply follow up every month or two under the watchful eyes of her rad onc team.
Best wishes for clean upcoming scans! Let's hope this turns into a long road with brand new smooooooth pavement!
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- December 2, 2016 at 3:20 pm
I never had tumor pain, but have read other posts where people have discussed it in a positive sense. Doctors should be able to check blood labs for any of the more common causes for her side effects. Muscle pains and mind games will definitely make sleeping difficult. The muscle pains are possibly an autoimmune reaction to the Keytruda, which is something the docs can find in blood work and by description of her symptoms.
As for brain metastasis, if she ends up with more, and they are multiple, they can all be treated at the same time. The most I ever had "zapped" with gamma at one time was 9….. but there are others here who have themselves, or family with more than that treated. In sum total, I've had 39 treated over a span of 10 rounds of gamma knife. Her radiation oncologist can discuss the different options for treatment, depending on the number of lesions and their sizes. Most docs will lean toward targeted radiation versus whole brain, as there is a lot of new evidence showing targeted is more effective. HOWEVER… if the tumor number is "out of control", sometimes that may not be an option. This is why Moffitt is a great place to have the top doctors helping make these decisions. It's entirely possible that she will have no new lesions, and can simply follow up every month or two under the watchful eyes of her rad onc team.
Best wishes for clean upcoming scans! Let's hope this turns into a long road with brand new smooooooth pavement!
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- December 4, 2016 at 5:32 pm
You were forturnate then with the side effects from Keytruda. My mom just had her 2nd treatment however they added Zometa and she's not good at all. I don't know if it's this new drug or what's going on. She's only comfortable in bed. I have a feeling it's the Zometa but she hasn't been feeling good even before the 2nd treatment of Keytruda. Has anyone else ever had these two combinations? She has another week before returning to the Moffit for the MRI follow up.
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- December 4, 2016 at 5:32 pm
You were forturnate then with the side effects from Keytruda. My mom just had her 2nd treatment however they added Zometa and she's not good at all. I don't know if it's this new drug or what's going on. She's only comfortable in bed. I have a feeling it's the Zometa but she hasn't been feeling good even before the 2nd treatment of Keytruda. Has anyone else ever had these two combinations? She has another week before returning to the Moffit for the MRI follow up.
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- December 4, 2016 at 5:32 pm
You were forturnate then with the side effects from Keytruda. My mom just had her 2nd treatment however they added Zometa and she's not good at all. I don't know if it's this new drug or what's going on. She's only comfortable in bed. I have a feeling it's the Zometa but she hasn't been feeling good even before the 2nd treatment of Keytruda. Has anyone else ever had these two combinations? She has another week before returning to the Moffit for the MRI follow up.
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- December 1, 2016 at 5:17 pm
I was very happy when I started getting side effects from nivo/ipi combo. It meant my body was reacting to the drugs and therefore working. It has worked great for me so far. I started in July and get my 4th dose of just nivo tomorrow, then back to both drugs for the maintanance part. Side effects come and go and can be different after each dose. Since the second week after my first dose I have had at least 1 side effect since.
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- December 1, 2016 at 5:17 pm
I was very happy when I started getting side effects from nivo/ipi combo. It meant my body was reacting to the drugs and therefore working. It has worked great for me so far. I started in July and get my 4th dose of just nivo tomorrow, then back to both drugs for the maintanance part. Side effects come and go and can be different after each dose. Since the second week after my first dose I have had at least 1 side effect since.
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- December 1, 2016 at 5:17 pm
I was very happy when I started getting side effects from nivo/ipi combo. It meant my body was reacting to the drugs and therefore working. It has worked great for me so far. I started in July and get my 4th dose of just nivo tomorrow, then back to both drugs for the maintanance part. Side effects come and go and can be different after each dose. Since the second week after my first dose I have had at least 1 side effect since.
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- December 1, 2016 at 9:08 pm
Sorry your mom and by extension your family is dealing with this. However, your mom is getting one of the best treatment options….radiation and immunotherapy…that there is for melanoma. Here's some data to back that up if you are interested (Note – there is link within the first post that takes you to a zillion more articles!):
On a personal note – I was treated at Moffit for more than three years after advancing to Stage IV melanoma with brain (treated with SRS) and a lung met (surgical removal of my upper lobe) followed by nivo (Opdivo) and remain NED.
Additionally, I'm not sure how much this will help you…but it is something I wrote about what helps a cancer patient a bit ago: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/what-to-say-and-doand-notfor-cancer.html
Hang in there…I wish you and your well. Celeste
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- December 1, 2016 at 9:08 pm
Sorry your mom and by extension your family is dealing with this. However, your mom is getting one of the best treatment options….radiation and immunotherapy…that there is for melanoma. Here's some data to back that up if you are interested (Note – there is link within the first post that takes you to a zillion more articles!):
On a personal note – I was treated at Moffit for more than three years after advancing to Stage IV melanoma with brain (treated with SRS) and a lung met (surgical removal of my upper lobe) followed by nivo (Opdivo) and remain NED.
Additionally, I'm not sure how much this will help you…but it is something I wrote about what helps a cancer patient a bit ago: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/what-to-say-and-doand-notfor-cancer.html
Hang in there…I wish you and your well. Celeste
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- December 2, 2016 at 9:42 am
Thanks for the links, I appreciate your words of what NOT to ask.
Being so far away it is really difficult but I am looking into getting her some help, cleaning, cooking etc. I fly down next week to take her to Moffitt and the follow up MRI.
This may sound crazy but I hope this is a long road we have to travel down, of course one day at a time, with minimal pain. Everyone on here is on a constant roller coaster ride, emotionally and physically. I appreciate all the feed back and positive words.
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- December 2, 2016 at 9:42 am
Thanks for the links, I appreciate your words of what NOT to ask.
Being so far away it is really difficult but I am looking into getting her some help, cleaning, cooking etc. I fly down next week to take her to Moffitt and the follow up MRI.
This may sound crazy but I hope this is a long road we have to travel down, of course one day at a time, with minimal pain. Everyone on here is on a constant roller coaster ride, emotionally and physically. I appreciate all the feed back and positive words.
-
- December 2, 2016 at 9:42 am
Thanks for the links, I appreciate your words of what NOT to ask.
Being so far away it is really difficult but I am looking into getting her some help, cleaning, cooking etc. I fly down next week to take her to Moffitt and the follow up MRI.
This may sound crazy but I hope this is a long road we have to travel down, of course one day at a time, with minimal pain. Everyone on here is on a constant roller coaster ride, emotionally and physically. I appreciate all the feed back and positive words.
-
- December 2, 2016 at 9:46 am
Thanks for the links, I appreciate your words of what NOT to ask.
Being so far away it is really difficult but I am looking into getting her some help, cleaning, cooking etc. I fly down next week to take her to Moffitt and the follow up MRI.
This may sound crazy but I hope this is a long road we have to travel down, of course one day at a time, with minimal pain. Everyone on here is on a constant roller coaster ride, emotionally and physically. I appreciate all the feed back and positive words.
-
- December 2, 2016 at 9:46 am
Thanks for the links, I appreciate your words of what NOT to ask.
Being so far away it is really difficult but I am looking into getting her some help, cleaning, cooking etc. I fly down next week to take her to Moffitt and the follow up MRI.
This may sound crazy but I hope this is a long road we have to travel down, of course one day at a time, with minimal pain. Everyone on here is on a constant roller coaster ride, emotionally and physically. I appreciate all the feed back and positive words.
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- December 2, 2016 at 1:20 pm
I hope your road is long as well. Just realized i didn't note that I advanced to stage IV in 2010…and remain NED. That's pretty long in melanoma world and I'm still traveling. Also remembered that there are some maid services that will clean a cancer patient's house for free or at a decreased charge. That might be something you could look into. I would also speak to the social service folks at Moffitt about any resources they know of in the area. I live in Tn and traveled to Moffitt for treatment so I don't know the local assistance options but I bet there are some. C
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- December 2, 2016 at 1:20 pm
I hope your road is long as well. Just realized i didn't note that I advanced to stage IV in 2010…and remain NED. That's pretty long in melanoma world and I'm still traveling. Also remembered that there are some maid services that will clean a cancer patient's house for free or at a decreased charge. That might be something you could look into. I would also speak to the social service folks at Moffitt about any resources they know of in the area. I live in Tn and traveled to Moffitt for treatment so I don't know the local assistance options but I bet there are some. C
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- December 2, 2016 at 1:20 pm
I hope your road is long as well. Just realized i didn't note that I advanced to stage IV in 2010…and remain NED. That's pretty long in melanoma world and I'm still traveling. Also remembered that there are some maid services that will clean a cancer patient's house for free or at a decreased charge. That might be something you could look into. I would also speak to the social service folks at Moffitt about any resources they know of in the area. I live in Tn and traveled to Moffitt for treatment so I don't know the local assistance options but I bet there are some. C
-
- December 2, 2016 at 9:46 am
Thanks for the links, I appreciate your words of what NOT to ask.
Being so far away it is really difficult but I am looking into getting her some help, cleaning, cooking etc. I fly down next week to take her to Moffitt and the follow up MRI.
This may sound crazy but I hope this is a long road we have to travel down, of course one day at a time, with minimal pain. Everyone on here is on a constant roller coaster ride, emotionally and physically. I appreciate all the feed back and positive words.
-
- December 1, 2016 at 9:08 pm
Sorry your mom and by extension your family is dealing with this. However, your mom is getting one of the best treatment options….radiation and immunotherapy…that there is for melanoma. Here's some data to back that up if you are interested (Note – there is link within the first post that takes you to a zillion more articles!):
On a personal note – I was treated at Moffit for more than three years after advancing to Stage IV melanoma with brain (treated with SRS) and a lung met (surgical removal of my upper lobe) followed by nivo (Opdivo) and remain NED.
Additionally, I'm not sure how much this will help you…but it is something I wrote about what helps a cancer patient a bit ago: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/what-to-say-and-doand-notfor-cancer.html
Hang in there…I wish you and your well. Celeste
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Tagged: cutaneous melanoma
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