› Forums › General Melanoma Community › Mom of 24 year old daughter with Stage IV (liver) needs encouragement
- This topic has 63 replies, 6 voices, and was last updated 9 years, 3 months ago by
Jacqueh27.
- Post
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- January 1, 2015 at 3:51 pm
My daughter was diagnosed with a primary tumor in arm (mole) that spread to only one lymphnode in 2011 at age 20. We took her to Moffit Cancer center where they removed all lymph nodes and the rest were all clear. She was staged 3a. In October of 2014, the same year they had graduated her from six month scans to yearly scans, it was found out the melanoma has now metastasized to the right lobe of liver. The tumor is 15cm. She had an immediate embolization done to liver and her last Yervoy treatment is next Wed. Although the Oncologist believes she has a fighting chance, I am of course worried! Can a tumor this size be shrunk by yervoy, the emobilization? We are all still waiting to see if she has the BRAF mutation.
i guess my main reason for this post is that soon she will have the scans to see if the Yervoy has worked and I'd like to just ask anybody if they've had success with the mentioned treatments this far. How soon will they be able to tell if this is working? Do blood levels help determine? Are there other treatments if this doesn't work?
im so glad I found the board. Thanks in advance for any advice or success stories. God Bless.
Jacque
- Replies
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- January 1, 2015 at 7:36 pm
15 cm is a rather large tumor. In the liver is very concerning. My largest is 10 x 9 cm in my left shoulder but I have a few dozen others. The brafs and yervoy did not help me but everyone is different. Keytruda has done a lot of good for me. Like my big tumor seems to keep changing shape like the tcells are taking out some but the disease grows some. They even showed me at the first pd1 scan how it destroyed the center of it. Other tumors are also shrinking.
since she has already had yervoy she may not qualify for a pd1 ipi trial but it is certainly worth asking them at moffit. Otherwise hopefully someone here has a good idea.
also she needs to stay strong. With that size of tumor it is probably absorbing a lot of her protein so she probably needs more than normal. However she gets it is up to you but I imagine from my experience she needs it.
also that tumor is probably affecting the liver. She probably needs things to help the liver like green leafy vegetables and things.
at least they didn't find more tumors so that is good for her.
for me it was two weeks after the last ipi dose they saw it didn't work so went on taf mek right away. Most of the time it is a couple months before they determine if ipi worked. Now that they have pd1 fda approved they might start it much sooner after ipi.
Artie
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- January 1, 2015 at 7:53 pm
Thanks, I know I was shocked at the size of it too but it's luckily only on right lobe and all other organs are clear. She is a vegetarian and the YERVOY has completely taken her appetite away so protein shakes are about all I can get down her. The agony of waiting to see if it works is so nerve wracking and her being so young, she doesn't want to talk about it at all. The pain before the YERVOY from the tumor is way down though so I am hoping that means it's shrinking a little.
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- January 1, 2015 at 9:02 pm
The pain down seems like a good sign. I also drink things like green machine, kale blazer, daily greens and other juices. Even if she can only sip a little every bit helps to try and keep her strength up. I can only imagine what you are going through. My parents moved in to help me through this 18 months ago. Moms homemade soup is very good for me. I remember on the zelboraf I could only eat half a bite at a time and that would take like 10 minutes for me to get down. I'm much better now. Had a whole plate of shritake pasta today. I hope she gets better.
Artie
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- January 1, 2015 at 9:02 pm
The pain down seems like a good sign. I also drink things like green machine, kale blazer, daily greens and other juices. Even if she can only sip a little every bit helps to try and keep her strength up. I can only imagine what you are going through. My parents moved in to help me through this 18 months ago. Moms homemade soup is very good for me. I remember on the zelboraf I could only eat half a bite at a time and that would take like 10 minutes for me to get down. I'm much better now. Had a whole plate of shritake pasta today. I hope she gets better.
Artie
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- January 2, 2015 at 1:01 am
Hi
I just want to say how sorry I am you are going through this. my son was also diagnosed (2009) at age 20 with stage 3. His last scans were good (also on yearly now) so am feeling blessed..I know how things can change.
Like your daughter, he never was one to talk about it.
Also (like your daughter) he was a vegtarian when he was dx..but when he started interferon he started eat some meat if that was the only thing he could stomach. But I always made sure he drank boost with extra protien.
hoping the combo of treatments does the trick for her..positive vibes your way.
Becky
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- January 2, 2015 at 2:39 am
So sorry about your daughter. My husband was in a clinical trial of 10 mg ipi. After the induction phase of 4 infusions, a small mets to the liver was discovered. He had microwave ablation. He is NED. His oncologist initially thought he was a ipi failure, but now she is optimistic as it has been n10 months since the metastasis was discovered. He has a good appetite but can't eat whole wheat and uses lactaid milk. He makes a smoothie of yogurt, peanut butter, bananas, turmeric, cinnamon, ginger, nutmeg, crushed pineapple, and applesauce. He swears by it throughout this ordeal.,
As hard as it has been watching and worrying about my husband, it must be more awful watching your child. My sympathies to all you parents of melanoma warriors. Stay positive
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- January 2, 2015 at 2:39 am
So sorry about your daughter. My husband was in a clinical trial of 10 mg ipi. After the induction phase of 4 infusions, a small mets to the liver was discovered. He had microwave ablation. He is NED. His oncologist initially thought he was a ipi failure, but now she is optimistic as it has been n10 months since the metastasis was discovered. He has a good appetite but can't eat whole wheat and uses lactaid milk. He makes a smoothie of yogurt, peanut butter, bananas, turmeric, cinnamon, ginger, nutmeg, crushed pineapple, and applesauce. He swears by it throughout this ordeal.,
As hard as it has been watching and worrying about my husband, it must be more awful watching your child. My sympathies to all you parents of melanoma warriors. Stay positive
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- January 2, 2015 at 2:39 am
So sorry about your daughter. My husband was in a clinical trial of 10 mg ipi. After the induction phase of 4 infusions, a small mets to the liver was discovered. He had microwave ablation. He is NED. His oncologist initially thought he was a ipi failure, but now she is optimistic as it has been n10 months since the metastasis was discovered. He has a good appetite but can't eat whole wheat and uses lactaid milk. He makes a smoothie of yogurt, peanut butter, bananas, turmeric, cinnamon, ginger, nutmeg, crushed pineapple, and applesauce. He swears by it throughout this ordeal.,
As hard as it has been watching and worrying about my husband, it must be more awful watching your child. My sympathies to all you parents of melanoma warriors. Stay positive
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- January 2, 2015 at 1:01 am
Hi
I just want to say how sorry I am you are going through this. my son was also diagnosed (2009) at age 20 with stage 3. His last scans were good (also on yearly now) so am feeling blessed..I know how things can change.
Like your daughter, he never was one to talk about it.
Also (like your daughter) he was a vegtarian when he was dx..but when he started interferon he started eat some meat if that was the only thing he could stomach. But I always made sure he drank boost with extra protien.
hoping the combo of treatments does the trick for her..positive vibes your way.
Becky
-
- January 2, 2015 at 1:01 am
Hi
I just want to say how sorry I am you are going through this. my son was also diagnosed (2009) at age 20 with stage 3. His last scans were good (also on yearly now) so am feeling blessed..I know how things can change.
Like your daughter, he never was one to talk about it.
Also (like your daughter) he was a vegtarian when he was dx..but when he started interferon he started eat some meat if that was the only thing he could stomach. But I always made sure he drank boost with extra protien.
hoping the combo of treatments does the trick for her..positive vibes your way.
Becky
-
- January 4, 2015 at 12:50 pm
Hi Jacque,
Sorry to hear this news.
My wife's 33yrs old and also has Stage IV melanoma. It started with a mole on her back that started bleeding after a massage. Our GP then removed the mole in an incorrect way, so the Breslow thickness could not be assessed. A wide excision (6x10cm) was done and came out "clean". A sentinel node biopsy of both armpits also came back as "clean" – so we thought we had dodged the bullet. A couple of months later, and a couple of days after she have birth of our first daughter on June 2nd, she was diagnosed with Stage IV.
She was BRAF positive so started on the BRAF/MEK combo right away which worked really well for 5 months before progression occured. She has now moved on to Pembro.
A couple of thoughts on her situation:
– Scans will tell if the Yervoy is working after 4 infusions – although some people need long for it to work. Blood analysis has always been a good predictor of tumor regression or progression for my wife. LDH values are the ones to watch.
– If the Yervoy doesn't work, PD1 (Opdivo or Keytruda) would be a logical treatment to start, they have higher success rates and fewer side effects than Yervoy. If your daughter needs something to work quickly and certaintly, the BRAF/MEK combo (pills) could be an in-between step. My wife was pretty weak when diagnosed, so she had that treatment first as the immonutherapy needs more time to kick in (if it works at all). I hope the BRAF result is positive, giving you one additional option.
– I read your daughter is a vegetarian. Indeed make sure you do get your proteins, my wife is vegan now and drinks shakes to stay strong. Getting loads of sleep also helps.
I also have a question for you: what other treatment options for her liver did you discuss? It's the first time now I read about embolization. How does it work? Does it come with side effects?
Also for others, I have never heard about radiation, liver perfusion or ablation before, can you please tell me a bit more about these? (JoelCairo)? THANKS!
Jacque, feel free to reach our for any support & questions!
Rick
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- January 4, 2015 at 12:50 pm
Hi Jacque,
Sorry to hear this news.
My wife's 33yrs old and also has Stage IV melanoma. It started with a mole on her back that started bleeding after a massage. Our GP then removed the mole in an incorrect way, so the Breslow thickness could not be assessed. A wide excision (6x10cm) was done and came out "clean". A sentinel node biopsy of both armpits also came back as "clean" – so we thought we had dodged the bullet. A couple of months later, and a couple of days after she have birth of our first daughter on June 2nd, she was diagnosed with Stage IV.
She was BRAF positive so started on the BRAF/MEK combo right away which worked really well for 5 months before progression occured. She has now moved on to Pembro.
A couple of thoughts on her situation:
– Scans will tell if the Yervoy is working after 4 infusions – although some people need long for it to work. Blood analysis has always been a good predictor of tumor regression or progression for my wife. LDH values are the ones to watch.
– If the Yervoy doesn't work, PD1 (Opdivo or Keytruda) would be a logical treatment to start, they have higher success rates and fewer side effects than Yervoy. If your daughter needs something to work quickly and certaintly, the BRAF/MEK combo (pills) could be an in-between step. My wife was pretty weak when diagnosed, so she had that treatment first as the immonutherapy needs more time to kick in (if it works at all). I hope the BRAF result is positive, giving you one additional option.
– I read your daughter is a vegetarian. Indeed make sure you do get your proteins, my wife is vegan now and drinks shakes to stay strong. Getting loads of sleep also helps.
I also have a question for you: what other treatment options for her liver did you discuss? It's the first time now I read about embolization. How does it work? Does it come with side effects?
Also for others, I have never heard about radiation, liver perfusion or ablation before, can you please tell me a bit more about these? (JoelCairo)? THANKS!
Jacque, feel free to reach our for any support & questions!
Rick
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- January 4, 2015 at 3:31 pm
Hello Rick, thanks for the note. I am sorry your wife is also battling this complex melanoma! Does she have any tumors in any organs?
you mentioned the LDH values. Should they be higher or lower when there is regression? I will check her chart that Mt Sinai gives us access to. It's torture having to wait. :/
the embolizations are done to liver to basically try to shrink the tumor. They cut off the blood supply to the artery that feeds the tumor. Her pain has reduced a lot making me think that is what's helped. I just wish they could get it small enough to remove it but only time will tell. There is information on the site about the different procedures they do. I'll try to get you a link.
I will feel more optimistic I think if we find she is Braf. They didn't get enough tissue so we are now waiting for another sample. Very frustrating. Her liver biopsy was done in Tallahassee and they did not send enough liver tissue. We are hoping Moffit will have enough or she will have to get another biopsy.
My daughter lives in Tallahassee, fl but I fly her down to Miami every three weeks to be treated by Dr Jose Lutzky who is one of the best. Dr Sondak who removed her lymph nodes at Moffit referred us to him and for that I'm so grateful. Both Drs seem to be relentless about their research and have pioneered several trials. I'm not giving up hope because I believe she's getting the best care possible.
Thanks for the advice about protein. She is trying her best to drink protein shakes but the Yervoy just zaps her appetite. She is def sleeping too.
Positive vibes to you and your wife!
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- January 4, 2015 at 3:31 pm
Hello Rick, thanks for the note. I am sorry your wife is also battling this complex melanoma! Does she have any tumors in any organs?
you mentioned the LDH values. Should they be higher or lower when there is regression? I will check her chart that Mt Sinai gives us access to. It's torture having to wait. :/
the embolizations are done to liver to basically try to shrink the tumor. They cut off the blood supply to the artery that feeds the tumor. Her pain has reduced a lot making me think that is what's helped. I just wish they could get it small enough to remove it but only time will tell. There is information on the site about the different procedures they do. I'll try to get you a link.
I will feel more optimistic I think if we find she is Braf. They didn't get enough tissue so we are now waiting for another sample. Very frustrating. Her liver biopsy was done in Tallahassee and they did not send enough liver tissue. We are hoping Moffit will have enough or she will have to get another biopsy.
My daughter lives in Tallahassee, fl but I fly her down to Miami every three weeks to be treated by Dr Jose Lutzky who is one of the best. Dr Sondak who removed her lymph nodes at Moffit referred us to him and for that I'm so grateful. Both Drs seem to be relentless about their research and have pioneered several trials. I'm not giving up hope because I believe she's getting the best care possible.
Thanks for the advice about protein. She is trying her best to drink protein shakes but the Yervoy just zaps her appetite. She is def sleeping too.
Positive vibes to you and your wife!
-
- January 4, 2015 at 3:31 pm
Hello Rick, thanks for the note. I am sorry your wife is also battling this complex melanoma! Does she have any tumors in any organs?
you mentioned the LDH values. Should they be higher or lower when there is regression? I will check her chart that Mt Sinai gives us access to. It's torture having to wait. :/
the embolizations are done to liver to basically try to shrink the tumor. They cut off the blood supply to the artery that feeds the tumor. Her pain has reduced a lot making me think that is what's helped. I just wish they could get it small enough to remove it but only time will tell. There is information on the site about the different procedures they do. I'll try to get you a link.
I will feel more optimistic I think if we find she is Braf. They didn't get enough tissue so we are now waiting for another sample. Very frustrating. Her liver biopsy was done in Tallahassee and they did not send enough liver tissue. We are hoping Moffit will have enough or she will have to get another biopsy.
My daughter lives in Tallahassee, fl but I fly her down to Miami every three weeks to be treated by Dr Jose Lutzky who is one of the best. Dr Sondak who removed her lymph nodes at Moffit referred us to him and for that I'm so grateful. Both Drs seem to be relentless about their research and have pioneered several trials. I'm not giving up hope because I believe she's getting the best care possible.
Thanks for the advice about protein. She is trying her best to drink protein shakes but the Yervoy just zaps her appetite. She is def sleeping too.
Positive vibes to you and your wife!
-
- January 4, 2015 at 6:00 pm
Thanks for the vibes 🙂
Yes did I forgot to mention that? My wife's tumors are mostly in her livers and spleen, most recently also on her bones (hip area and knee).
LDH values should ideally be in the normal bandwidth (differs per label) – but yes lower is better. My wife has 2000 in June when diagnosed, then dropped to 400-ish thanks to the BRAF combo and they scan shot back op to 1300 when she became resistent. After one treatment of PD1 they got back to 600 so that was an early indication things may be getting better!
On BRAF – back in June that's what we hoped for – and in her case it was helpful to get on the combo and see a quick effect given the state she was in. However, now I think not having the BRAF gene may actually be positive as you'll have a shorter road to PD1!
Good luck – both for you and your daughter!
-
- January 4, 2015 at 6:22 pm
Thanks I just checked her records and before YERVOY on November 5 Her LDH was 5895. On 12/17 before her third infusion was done it says it was 592, normal range. Is this good!!!!???? Does this mean the YERVOY could be working? Wow thanks for telling me about this!
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- January 5, 2015 at 12:32 pm
Hi Jacque,
I'm not a doctor and don't want to make any promises I can't keep… all I know is that a decreasing LDH value is likely to be a good thing. In my wife's case it has always been a good predictor of impact of the treatment.
It went down from 2000 to 600 then 400 thanks to the combo.
Then shot up to 1300 when the combo stopped working.
After 1 infusion of PD1 it went down to 600.
So I'm hoping that in both of our cases this means the immunotheraphy is working!!
-
- January 6, 2015 at 8:23 pm
Thanks Rick, I really hope so too! Man, I hate the waiting. We go for her last infusion tomorrow so I will ask the Oncologist. Also, since they didn't get enough tissue to find out her mutation, apparently there is a new blood test for it, so she will be doing that tomorrow as well. What is PD1 again? Is your wife ok right now?
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- January 6, 2015 at 8:23 pm
Thanks Rick, I really hope so too! Man, I hate the waiting. We go for her last infusion tomorrow so I will ask the Oncologist. Also, since they didn't get enough tissue to find out her mutation, apparently there is a new blood test for it, so she will be doing that tomorrow as well. What is PD1 again? Is your wife ok right now?
-
- January 6, 2015 at 8:23 pm
Thanks Rick, I really hope so too! Man, I hate the waiting. We go for her last infusion tomorrow so I will ask the Oncologist. Also, since they didn't get enough tissue to find out her mutation, apparently there is a new blood test for it, so she will be doing that tomorrow as well. What is PD1 again? Is your wife ok right now?
-
- January 5, 2015 at 12:32 pm
Hi Jacque,
I'm not a doctor and don't want to make any promises I can't keep… all I know is that a decreasing LDH value is likely to be a good thing. In my wife's case it has always been a good predictor of impact of the treatment.
It went down from 2000 to 600 then 400 thanks to the combo.
Then shot up to 1300 when the combo stopped working.
After 1 infusion of PD1 it went down to 600.
So I'm hoping that in both of our cases this means the immunotheraphy is working!!
-
- January 5, 2015 at 12:32 pm
Hi Jacque,
I'm not a doctor and don't want to make any promises I can't keep… all I know is that a decreasing LDH value is likely to be a good thing. In my wife's case it has always been a good predictor of impact of the treatment.
It went down from 2000 to 600 then 400 thanks to the combo.
Then shot up to 1300 when the combo stopped working.
After 1 infusion of PD1 it went down to 600.
So I'm hoping that in both of our cases this means the immunotheraphy is working!!
-
- January 4, 2015 at 6:22 pm
Thanks I just checked her records and before YERVOY on November 5 Her LDH was 5895. On 12/17 before her third infusion was done it says it was 592, normal range. Is this good!!!!???? Does this mean the YERVOY could be working? Wow thanks for telling me about this!
-
- January 4, 2015 at 6:22 pm
Thanks I just checked her records and before YERVOY on November 5 Her LDH was 5895. On 12/17 before her third infusion was done it says it was 592, normal range. Is this good!!!!???? Does this mean the YERVOY could be working? Wow thanks for telling me about this!
-
- January 4, 2015 at 6:00 pm
Thanks for the vibes 🙂
Yes did I forgot to mention that? My wife's tumors are mostly in her livers and spleen, most recently also on her bones (hip area and knee).
LDH values should ideally be in the normal bandwidth (differs per label) – but yes lower is better. My wife has 2000 in June when diagnosed, then dropped to 400-ish thanks to the BRAF combo and they scan shot back op to 1300 when she became resistent. After one treatment of PD1 they got back to 600 so that was an early indication things may be getting better!
On BRAF – back in June that's what we hoped for – and in her case it was helpful to get on the combo and see a quick effect given the state she was in. However, now I think not having the BRAF gene may actually be positive as you'll have a shorter road to PD1!
Good luck – both for you and your daughter!
-
- January 4, 2015 at 6:00 pm
Thanks for the vibes 🙂
Yes did I forgot to mention that? My wife's tumors are mostly in her livers and spleen, most recently also on her bones (hip area and knee).
LDH values should ideally be in the normal bandwidth (differs per label) – but yes lower is better. My wife has 2000 in June when diagnosed, then dropped to 400-ish thanks to the BRAF combo and they scan shot back op to 1300 when she became resistent. After one treatment of PD1 they got back to 600 so that was an early indication things may be getting better!
On BRAF – back in June that's what we hoped for – and in her case it was helpful to get on the combo and see a quick effect given the state she was in. However, now I think not having the BRAF gene may actually be positive as you'll have a shorter road to PD1!
Good luck – both for you and your daughter!
-
- January 4, 2015 at 8:18 pm
Hi, Rick. Sorry about your wife's situation.
I was diagnosed with ocular melanoma, which usually (90%+) spreads to the liver first rather than to the lymph nodes. Therefore I have encountered many people who have had liver mets. The first principle that has been generally recognized by patients if not by doctors is that the local (liver) mets must be treated and gotten under control first. That's where you can get the fastest impact and have the greatest effect on overall prognosis.
Only once this is underway or complete would you attempt systemic therapies. BTW, ocular melanoma never comes with the BRAF mutation. For BRAF-positive melanomas, those drugs would probably be a good thing to go to first.
Embolization, chemo-embolization, immuno–embolization and radio-embolization are probably the most popular and effective liver treatments. As I said, some of these can be done multiple times as long as there is continued benefit, even 10 times or more.
Isolated liver perfusion and percutaneous liver perfusion are other options. These isolate the blood supply to the liver so that much higher levels of chemo drugs can be applied. Afterwards the liver is re-attached. From what I hear, the recovery period is much longer than with embolizations.
Resection (physically cutting out any tumors) is another possibility, but it is usually not a practical option.
There are various direct radiation options. I'm going to say gamma knife to start, but without doing any research I don't know if that particular technology is an option or not.
Then there are high-intensity focused ultrasound ablation and radiofrequency ablation. These are non-invasive or minimally invasive options for destroying tumors. These are attractive because they are nonsurgical, however I have read that there is ahigher rate of regrowth. In other words, they don't succeed in killing all of the existing tumor cells. I don't know how widely available either technology is.
The main point I am making is that there are a lot of different options, and any given doctor probably only has expertise in, or access to, a small number of them. Yervoy by itself only has a response rate in the 15-30% range, which I consider to be pretty low. Therefore patients should be aware of every alternative or complement to Yervoy, in order to maximize their outcome.
-
- January 4, 2015 at 8:18 pm
Hi, Rick. Sorry about your wife's situation.
I was diagnosed with ocular melanoma, which usually (90%+) spreads to the liver first rather than to the lymph nodes. Therefore I have encountered many people who have had liver mets. The first principle that has been generally recognized by patients if not by doctors is that the local (liver) mets must be treated and gotten under control first. That's where you can get the fastest impact and have the greatest effect on overall prognosis.
Only once this is underway or complete would you attempt systemic therapies. BTW, ocular melanoma never comes with the BRAF mutation. For BRAF-positive melanomas, those drugs would probably be a good thing to go to first.
Embolization, chemo-embolization, immuno–embolization and radio-embolization are probably the most popular and effective liver treatments. As I said, some of these can be done multiple times as long as there is continued benefit, even 10 times or more.
Isolated liver perfusion and percutaneous liver perfusion are other options. These isolate the blood supply to the liver so that much higher levels of chemo drugs can be applied. Afterwards the liver is re-attached. From what I hear, the recovery period is much longer than with embolizations.
Resection (physically cutting out any tumors) is another possibility, but it is usually not a practical option.
There are various direct radiation options. I'm going to say gamma knife to start, but without doing any research I don't know if that particular technology is an option or not.
Then there are high-intensity focused ultrasound ablation and radiofrequency ablation. These are non-invasive or minimally invasive options for destroying tumors. These are attractive because they are nonsurgical, however I have read that there is ahigher rate of regrowth. In other words, they don't succeed in killing all of the existing tumor cells. I don't know how widely available either technology is.
The main point I am making is that there are a lot of different options, and any given doctor probably only has expertise in, or access to, a small number of them. Yervoy by itself only has a response rate in the 15-30% range, which I consider to be pretty low. Therefore patients should be aware of every alternative or complement to Yervoy, in order to maximize their outcome.
-
- January 4, 2015 at 8:18 pm
Hi, Rick. Sorry about your wife's situation.
I was diagnosed with ocular melanoma, which usually (90%+) spreads to the liver first rather than to the lymph nodes. Therefore I have encountered many people who have had liver mets. The first principle that has been generally recognized by patients if not by doctors is that the local (liver) mets must be treated and gotten under control first. That's where you can get the fastest impact and have the greatest effect on overall prognosis.
Only once this is underway or complete would you attempt systemic therapies. BTW, ocular melanoma never comes with the BRAF mutation. For BRAF-positive melanomas, those drugs would probably be a good thing to go to first.
Embolization, chemo-embolization, immuno–embolization and radio-embolization are probably the most popular and effective liver treatments. As I said, some of these can be done multiple times as long as there is continued benefit, even 10 times or more.
Isolated liver perfusion and percutaneous liver perfusion are other options. These isolate the blood supply to the liver so that much higher levels of chemo drugs can be applied. Afterwards the liver is re-attached. From what I hear, the recovery period is much longer than with embolizations.
Resection (physically cutting out any tumors) is another possibility, but it is usually not a practical option.
There are various direct radiation options. I'm going to say gamma knife to start, but without doing any research I don't know if that particular technology is an option or not.
Then there are high-intensity focused ultrasound ablation and radiofrequency ablation. These are non-invasive or minimally invasive options for destroying tumors. These are attractive because they are nonsurgical, however I have read that there is ahigher rate of regrowth. In other words, they don't succeed in killing all of the existing tumor cells. I don't know how widely available either technology is.
The main point I am making is that there are a lot of different options, and any given doctor probably only has expertise in, or access to, a small number of them. Yervoy by itself only has a response rate in the 15-30% range, which I consider to be pretty low. Therefore patients should be aware of every alternative or complement to Yervoy, in order to maximize their outcome.
-
- January 4, 2015 at 12:50 pm
Hi Jacque,
Sorry to hear this news.
My wife's 33yrs old and also has Stage IV melanoma. It started with a mole on her back that started bleeding after a massage. Our GP then removed the mole in an incorrect way, so the Breslow thickness could not be assessed. A wide excision (6x10cm) was done and came out "clean". A sentinel node biopsy of both armpits also came back as "clean" – so we thought we had dodged the bullet. A couple of months later, and a couple of days after she have birth of our first daughter on June 2nd, she was diagnosed with Stage IV.
She was BRAF positive so started on the BRAF/MEK combo right away which worked really well for 5 months before progression occured. She has now moved on to Pembro.
A couple of thoughts on her situation:
– Scans will tell if the Yervoy is working after 4 infusions – although some people need long for it to work. Blood analysis has always been a good predictor of tumor regression or progression for my wife. LDH values are the ones to watch.
– If the Yervoy doesn't work, PD1 (Opdivo or Keytruda) would be a logical treatment to start, they have higher success rates and fewer side effects than Yervoy. If your daughter needs something to work quickly and certaintly, the BRAF/MEK combo (pills) could be an in-between step. My wife was pretty weak when diagnosed, so she had that treatment first as the immonutherapy needs more time to kick in (if it works at all). I hope the BRAF result is positive, giving you one additional option.
– I read your daughter is a vegetarian. Indeed make sure you do get your proteins, my wife is vegan now and drinks shakes to stay strong. Getting loads of sleep also helps.
I also have a question for you: what other treatment options for her liver did you discuss? It's the first time now I read about embolization. How does it work? Does it come with side effects?
Also for others, I have never heard about radiation, liver perfusion or ablation before, can you please tell me a bit more about these? (JoelCairo)? THANKS!
Jacque, feel free to reach our for any support & questions!
Rick
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- January 1, 2015 at 9:02 pm
The pain down seems like a good sign. I also drink things like green machine, kale blazer, daily greens and other juices. Even if she can only sip a little every bit helps to try and keep her strength up. I can only imagine what you are going through. My parents moved in to help me through this 18 months ago. Moms homemade soup is very good for me. I remember on the zelboraf I could only eat half a bite at a time and that would take like 10 minutes for me to get down. I'm much better now. Had a whole plate of shritake pasta today. I hope she gets better.
Artie
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- January 1, 2015 at 7:53 pm
Thanks, I know I was shocked at the size of it too but it's luckily only on right lobe and all other organs are clear. She is a vegetarian and the YERVOY has completely taken her appetite away so protein shakes are about all I can get down her. The agony of waiting to see if it works is so nerve wracking and her being so young, she doesn't want to talk about it at all. The pain before the YERVOY from the tumor is way down though so I am hoping that means it's shrinking a little.
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- January 1, 2015 at 7:53 pm
Thanks, I know I was shocked at the size of it too but it's luckily only on right lobe and all other organs are clear. She is a vegetarian and the YERVOY has completely taken her appetite away so protein shakes are about all I can get down her. The agony of waiting to see if it works is so nerve wracking and her being so young, she doesn't want to talk about it at all. The pain before the YERVOY from the tumor is way down though so I am hoping that means it's shrinking a little.
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- January 1, 2015 at 7:36 pm
15 cm is a rather large tumor. In the liver is very concerning. My largest is 10 x 9 cm in my left shoulder but I have a few dozen others. The brafs and yervoy did not help me but everyone is different. Keytruda has done a lot of good for me. Like my big tumor seems to keep changing shape like the tcells are taking out some but the disease grows some. They even showed me at the first pd1 scan how it destroyed the center of it. Other tumors are also shrinking.
since she has already had yervoy she may not qualify for a pd1 ipi trial but it is certainly worth asking them at moffit. Otherwise hopefully someone here has a good idea.
also she needs to stay strong. With that size of tumor it is probably absorbing a lot of her protein so she probably needs more than normal. However she gets it is up to you but I imagine from my experience she needs it.
also that tumor is probably affecting the liver. She probably needs things to help the liver like green leafy vegetables and things.
at least they didn't find more tumors so that is good for her.
for me it was two weeks after the last ipi dose they saw it didn't work so went on taf mek right away. Most of the time it is a couple months before they determine if ipi worked. Now that they have pd1 fda approved they might start it much sooner after ipi.
Artie
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- January 1, 2015 at 7:36 pm
15 cm is a rather large tumor. In the liver is very concerning. My largest is 10 x 9 cm in my left shoulder but I have a few dozen others. The brafs and yervoy did not help me but everyone is different. Keytruda has done a lot of good for me. Like my big tumor seems to keep changing shape like the tcells are taking out some but the disease grows some. They even showed me at the first pd1 scan how it destroyed the center of it. Other tumors are also shrinking.
since she has already had yervoy she may not qualify for a pd1 ipi trial but it is certainly worth asking them at moffit. Otherwise hopefully someone here has a good idea.
also she needs to stay strong. With that size of tumor it is probably absorbing a lot of her protein so she probably needs more than normal. However she gets it is up to you but I imagine from my experience she needs it.
also that tumor is probably affecting the liver. She probably needs things to help the liver like green leafy vegetables and things.
at least they didn't find more tumors so that is good for her.
for me it was two weeks after the last ipi dose they saw it didn't work so went on taf mek right away. Most of the time it is a couple months before they determine if ipi worked. Now that they have pd1 fda approved they might start it much sooner after ipi.
Artie
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- January 2, 2015 at 9:55 pm
Honestly the embolization is more likely to be doing the heavy lifting. I'm not an expert in this area, but I'd be surprised if Yervoy could have a significant effect in a tumor that size. However it may synergize with liver-directed therapies, and it may contribute to longterm freedom from recurrence.
Embolizations can be performed multiple times, depending on what type they are (for example, they may be combined with immunotherapy, chemotherapy or radiation). Liver mets can also be attacked directly via radiation, liver perfusion and ablation. There are theoretically a lot of options, so your daughter might want to get multiple opinions.
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- January 2, 2015 at 9:55 pm
Honestly the embolization is more likely to be doing the heavy lifting. I'm not an expert in this area, but I'd be surprised if Yervoy could have a significant effect in a tumor that size. However it may synergize with liver-directed therapies, and it may contribute to longterm freedom from recurrence.
Embolizations can be performed multiple times, depending on what type they are (for example, they may be combined with immunotherapy, chemotherapy or radiation). Liver mets can also be attacked directly via radiation, liver perfusion and ablation. There are theoretically a lot of options, so your daughter might want to get multiple opinions.
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- January 2, 2015 at 9:55 pm
Honestly the embolization is more likely to be doing the heavy lifting. I'm not an expert in this area, but I'd be surprised if Yervoy could have a significant effect in a tumor that size. However it may synergize with liver-directed therapies, and it may contribute to longterm freedom from recurrence.
Embolizations can be performed multiple times, depending on what type they are (for example, they may be combined with immunotherapy, chemotherapy or radiation). Liver mets can also be attacked directly via radiation, liver perfusion and ablation. There are theoretically a lot of options, so your daughter might want to get multiple opinions.
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- January 3, 2015 at 6:01 pm
Thank you and that is my thought. Seemed the pain started reducing once they did the embolisation. I am going to bring that up to Oncologist this week. I am so scared the YERVOY won't work and we are waiting forever to see if she has the BRAF mutation which I think she might being she is a red head with very pale skin. She has rarely been in the sun. Just praying that something will work because she is just too young. 🙁
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- January 4, 2015 at 3:46 pm
My braf test only took less than a week. So yeah 2 months seems odd. But it sounds like a lack of tissue issue might be the cause.
Artie
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- January 4, 2015 at 3:46 pm
My braf test only took less than a week. So yeah 2 months seems odd. But it sounds like a lack of tissue issue might be the cause.
Artie
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- January 4, 2015 at 3:46 pm
My braf test only took less than a week. So yeah 2 months seems odd. But it sounds like a lack of tissue issue might be the cause.
Artie
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- January 3, 2015 at 6:01 pm
Thank you and that is my thought. Seemed the pain started reducing once they did the embolisation. I am going to bring that up to Oncologist this week. I am so scared the YERVOY won't work and we are waiting forever to see if she has the BRAF mutation which I think she might being she is a red head with very pale skin. She has rarely been in the sun. Just praying that something will work because she is just too young. 🙁
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- January 3, 2015 at 6:01 pm
Thank you and that is my thought. Seemed the pain started reducing once they did the embolisation. I am going to bring that up to Oncologist this week. I am so scared the YERVOY won't work and we are waiting forever to see if she has the BRAF mutation which I think she might being she is a red head with very pale skin. She has rarely been in the sun. Just praying that something will work because she is just too young. 🙁
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Tagged: cutaneous melanoma
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