› Forums › General Melanoma Community › advanced stage 4 – can he make it?
- This topic has 24 replies, 6 voices, and was last updated 9 years, 10 months ago by
melfighter.
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- June 21, 2014 at 12:44 pm
Hi all,
My husband has been on the combo for 4 months now. Since Feb, he has had 3 rounds of radiation (WBR, spine & now his hip). Recent scan showed improvement in all soft tissues tumors but increased activities in the bone. We are waiting for the approval for Xvega to strengthen the bones. We were told that he is considered very advanced in stage 4, since he has "innumerable" tumors throughout his body. My question is, has anyone had success with treatments being so far advanced in stage 4?
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- June 21, 2014 at 2:36 pm
so strange…..I have been on combo six months and so far soft or nodes or suspicious uptage has all been decreased…..to almost not there….
but the bone mets or lesions have hung around or increased.
started 1 treatment of xgeva and just did first of radiation on my spine.
I'm wondering whats up with the combo and bones.
MattF in Socal
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- June 21, 2014 at 2:36 pm
so strange…..I have been on combo six months and so far soft or nodes or suspicious uptage has all been decreased…..to almost not there….
but the bone mets or lesions have hung around or increased.
started 1 treatment of xgeva and just did first of radiation on my spine.
I'm wondering whats up with the combo and bones.
MattF in Socal
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- June 21, 2014 at 2:36 pm
so strange…..I have been on combo six months and so far soft or nodes or suspicious uptage has all been decreased…..to almost not there….
but the bone mets or lesions have hung around or increased.
started 1 treatment of xgeva and just did first of radiation on my spine.
I'm wondering whats up with the combo and bones.
MattF in Socal
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- June 21, 2014 at 2:48 pm
I am sorry to hear that the bone Mets are not responding to treatment. How did you both find wbrt? My wife is scheduled to start this shortly.-
- June 24, 2014 at 7:34 am
The WBR worked well for my husband, the scans showed marked improvement and he has no neurological symptoms. Although he had 14 tumors in his brain, he never had any neurological symptoms
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- June 24, 2014 at 7:34 am
The WBR worked well for my husband, the scans showed marked improvement and he has no neurological symptoms. Although he had 14 tumors in his brain, he never had any neurological symptoms
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- June 24, 2014 at 7:34 am
The WBR worked well for my husband, the scans showed marked improvement and he has no neurological symptoms. Although he had 14 tumors in his brain, he never had any neurological symptoms
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- June 22, 2014 at 12:04 pm
I was on the combo recently as well, it stopped working in about 5 months. I just started the Merk PD-1 EAP and am crossing my fingers that it works and works on everything. In the past I have done IL-2, Yervoy, WBR, and Gamma Knife. In addition to the brain and body mets I have had problems with tumors in my spine. The worst was when I was on IL-2, but that one seemed to respond to IL-2, so yes, systemic therapies can work. That one hasn't bothered me in over a year. Currently I may have another one starting to cause some trouble for me in my lower spine (I'll get the MRI results this week). The pain started before my first dose of PD-1, but since that dose really hasn't gotten much worse (though I take 2 Advil every 4 hrs day and night to keep it under control) so I'm noping that is at least slowing things down a little. I'm not sure what to make about increased activity in the bone- that can be hard to interpret: is it tumor growth or the beginnings of tumor destruction? Have they done an MRI of the spine (which is probably mostly helpful if they've done them in teh past so they can compare). Blood flow is different to bone tissue than it is to soft tissues, so it may just take longer to get an effect in bone (just guessing here)? If the soft tissue tumors are shrinking, that's a good thing and I'd keep going with that as long as you can. Hopefully the bone mets will start to fall in line soon. Have you talked with your doctor about doing a targeted radiation on the bone mets? It might help. I don't know if this is his first round of therapy or if he's had others before, but there's a lot of options out there now for people and more people than ever before are beating the disease and getting really good results.
Stay positive, there's always hope. Best of luck
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- June 24, 2014 at 7:44 am
Doctor told him not to be too concern about the scans from the bones, sometimes scars from bone healing can look similar to lesions, he said to watch for his liver, because there is extensive mets on the liver. I doubt that very much, since he has new bone related pain that seem to pop up at different places now. We really don't know what to do at this point, we are told to wait for the combo to work on the bones, however, it seems his bone related pain is getting worse every day.
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- June 24, 2014 at 7:44 am
Doctor told him not to be too concern about the scans from the bones, sometimes scars from bone healing can look similar to lesions, he said to watch for his liver, because there is extensive mets on the liver. I doubt that very much, since he has new bone related pain that seem to pop up at different places now. We really don't know what to do at this point, we are told to wait for the combo to work on the bones, however, it seems his bone related pain is getting worse every day.
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- June 24, 2014 at 7:44 am
Doctor told him not to be too concern about the scans from the bones, sometimes scars from bone healing can look similar to lesions, he said to watch for his liver, because there is extensive mets on the liver. I doubt that very much, since he has new bone related pain that seem to pop up at different places now. We really don't know what to do at this point, we are told to wait for the combo to work on the bones, however, it seems his bone related pain is getting worse every day.
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- June 22, 2014 at 12:04 pm
I was on the combo recently as well, it stopped working in about 5 months. I just started the Merk PD-1 EAP and am crossing my fingers that it works and works on everything. In the past I have done IL-2, Yervoy, WBR, and Gamma Knife. In addition to the brain and body mets I have had problems with tumors in my spine. The worst was when I was on IL-2, but that one seemed to respond to IL-2, so yes, systemic therapies can work. That one hasn't bothered me in over a year. Currently I may have another one starting to cause some trouble for me in my lower spine (I'll get the MRI results this week). The pain started before my first dose of PD-1, but since that dose really hasn't gotten much worse (though I take 2 Advil every 4 hrs day and night to keep it under control) so I'm noping that is at least slowing things down a little. I'm not sure what to make about increased activity in the bone- that can be hard to interpret: is it tumor growth or the beginnings of tumor destruction? Have they done an MRI of the spine (which is probably mostly helpful if they've done them in teh past so they can compare). Blood flow is different to bone tissue than it is to soft tissues, so it may just take longer to get an effect in bone (just guessing here)? If the soft tissue tumors are shrinking, that's a good thing and I'd keep going with that as long as you can. Hopefully the bone mets will start to fall in line soon. Have you talked with your doctor about doing a targeted radiation on the bone mets? It might help. I don't know if this is his first round of therapy or if he's had others before, but there's a lot of options out there now for people and more people than ever before are beating the disease and getting really good results.
Stay positive, there's always hope. Best of luck
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- June 22, 2014 at 12:04 pm
I was on the combo recently as well, it stopped working in about 5 months. I just started the Merk PD-1 EAP and am crossing my fingers that it works and works on everything. In the past I have done IL-2, Yervoy, WBR, and Gamma Knife. In addition to the brain and body mets I have had problems with tumors in my spine. The worst was when I was on IL-2, but that one seemed to respond to IL-2, so yes, systemic therapies can work. That one hasn't bothered me in over a year. Currently I may have another one starting to cause some trouble for me in my lower spine (I'll get the MRI results this week). The pain started before my first dose of PD-1, but since that dose really hasn't gotten much worse (though I take 2 Advil every 4 hrs day and night to keep it under control) so I'm noping that is at least slowing things down a little. I'm not sure what to make about increased activity in the bone- that can be hard to interpret: is it tumor growth or the beginnings of tumor destruction? Have they done an MRI of the spine (which is probably mostly helpful if they've done them in teh past so they can compare). Blood flow is different to bone tissue than it is to soft tissues, so it may just take longer to get an effect in bone (just guessing here)? If the soft tissue tumors are shrinking, that's a good thing and I'd keep going with that as long as you can. Hopefully the bone mets will start to fall in line soon. Have you talked with your doctor about doing a targeted radiation on the bone mets? It might help. I don't know if this is his first round of therapy or if he's had others before, but there's a lot of options out there now for people and more people than ever before are beating the disease and getting really good results.
Stay positive, there's always hope. Best of luck
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- June 23, 2014 at 12:34 pm
I was wondering what you mean by asking "can he make it" but of course the question is not strange to me.
I would put it like this: Of course he can make it but only god knows if he will!
i have recently been diagnosed with stage 4 out of the blue, no mets in the brain but on several organs and bones, also spine. am thus considered advanced. I am 35 years old and my intention is not to give up.
I have been on the combo for 4 momths with all mets on organs shrinking, stable desease in the bone. They said the combo might tackle the bone mets later.
what I have learnt so far by folowing this forum is that everybody is different and there are people with horrific stories who are still alive.
I am trying to not look too far ahead but take it step by step. I am trying to contribute the most I can by myeself to my healing but i am aware that only god knows if I will make it!
Hang in there and never give up hope!
Wishing you and your husband all the best,
Chris
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- June 23, 2014 at 12:34 pm
I was wondering what you mean by asking "can he make it" but of course the question is not strange to me.
I would put it like this: Of course he can make it but only god knows if he will!
i have recently been diagnosed with stage 4 out of the blue, no mets in the brain but on several organs and bones, also spine. am thus considered advanced. I am 35 years old and my intention is not to give up.
I have been on the combo for 4 momths with all mets on organs shrinking, stable desease in the bone. They said the combo might tackle the bone mets later.
what I have learnt so far by folowing this forum is that everybody is different and there are people with horrific stories who are still alive.
I am trying to not look too far ahead but take it step by step. I am trying to contribute the most I can by myeself to my healing but i am aware that only god knows if I will make it!
Hang in there and never give up hope!
Wishing you and your husband all the best,
Chris
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- June 23, 2014 at 12:34 pm
I was wondering what you mean by asking "can he make it" but of course the question is not strange to me.
I would put it like this: Of course he can make it but only god knows if he will!
i have recently been diagnosed with stage 4 out of the blue, no mets in the brain but on several organs and bones, also spine. am thus considered advanced. I am 35 years old and my intention is not to give up.
I have been on the combo for 4 momths with all mets on organs shrinking, stable desease in the bone. They said the combo might tackle the bone mets later.
what I have learnt so far by folowing this forum is that everybody is different and there are people with horrific stories who are still alive.
I am trying to not look too far ahead but take it step by step. I am trying to contribute the most I can by myeself to my healing but i am aware that only god knows if I will make it!
Hang in there and never give up hope!
Wishing you and your husband all the best,
Chris
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- June 23, 2014 at 1:57 pm
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- June 23, 2014 at 1:57 pm
I had a later response to pd1's MK-3475. And I am doing great now.
When I started pd1 I had metastisis in the lymph nodes in both arm pits, behind my chestwall, wrapped around my heart, and a mass on my liver. The biopsied node in my right arm pit that got me into the trial was a little bigger than a grape in size.
I scanned again 3 months later and all the disease disappeared everywhere (and has not returned,) except that one bad node in my right arm pit had doubled in size and now was the size of a ping-pong ball. Then again 3 months after that (so 6 months into the pd1 trial) the bad node had now doubled in size again and was more like a peach. So the doctors started to really think that the pd1 wasn't working and the they almost took me off of treatment.
I was one week from meeting with the surgeon to talk about surgery when I started experiencing stabbing pains to my bad node. Those pains continued for 24 hours every 5-8 seconds. It was scary and I didn't understand, but my doctors said that it sounded like it was finally responding to treatment. I woke up the next day and that node was the size of a baseball and hanging out of my arm pit. But two days after that, it was back to a smaller size and it was no longer hanging out of me. I scanned and it showed that the node had liquified and the doctors said that meant it was dying. That the treatment had worked. And it has been going back down in size, about 15% smaller every 5 weeks, ever since.
I am now doing great. Still no reoccurances anywhere else and that node is back down to the size of a thumb nail.
I know it is a different treatment than your husband is on, and that I don't have mets in my bones, but I just wanted to let you know that I appeared to be very far gone and had a wall to climb that looked impossible, because some of the mets were responding, but that bad node was still aggressively growing. And yet it finally was reversed by the MK-3475 pd1 treatment and I believe by the healthy changes I have made with my diet and products I use.
Pd1 was also not so rough on my immue system. I've been pretty healthy the whole time and able to work full time, no problem. So hang in there! Your husband too could just need a little more time for the bones to respond. 🙂 All the best to you and your husband.
Laurie
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- June 23, 2014 at 1:57 pm
I had a later response to pd1's MK-3475. And I am doing great now.
When I started pd1 I had metastisis in the lymph nodes in both arm pits, behind my chestwall, wrapped around my heart, and a mass on my liver. The biopsied node in my right arm pit that got me into the trial was a little bigger than a grape in size.
I scanned again 3 months later and all the disease disappeared everywhere (and has not returned,) except that one bad node in my right arm pit had doubled in size and now was the size of a ping-pong ball. Then again 3 months after that (so 6 months into the pd1 trial) the bad node had now doubled in size again and was more like a peach. So the doctors started to really think that the pd1 wasn't working and the they almost took me off of treatment.
I was one week from meeting with the surgeon to talk about surgery when I started experiencing stabbing pains to my bad node. Those pains continued for 24 hours every 5-8 seconds. It was scary and I didn't understand, but my doctors said that it sounded like it was finally responding to treatment. I woke up the next day and that node was the size of a baseball and hanging out of my arm pit. But two days after that, it was back to a smaller size and it was no longer hanging out of me. I scanned and it showed that the node had liquified and the doctors said that meant it was dying. That the treatment had worked. And it has been going back down in size, about 15% smaller every 5 weeks, ever since.
I am now doing great. Still no reoccurances anywhere else and that node is back down to the size of a thumb nail.
I know it is a different treatment than your husband is on, and that I don't have mets in my bones, but I just wanted to let you know that I appeared to be very far gone and had a wall to climb that looked impossible, because some of the mets were responding, but that bad node was still aggressively growing. And yet it finally was reversed by the MK-3475 pd1 treatment and I believe by the healthy changes I have made with my diet and products I use.
Pd1 was also not so rough on my immue system. I've been pretty healthy the whole time and able to work full time, no problem. So hang in there! Your husband too could just need a little more time for the bones to respond. 🙂 All the best to you and your husband.
Laurie
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- June 24, 2014 at 7:30 am
Thank you all for your responses. My husband told me he feels that he is unable to beat the cancer anymore because after the 12 weeks scans (also MRI) they started radiation on his back and now his sacrum. He now feels his back pain is back after only 1 month after radiation and he feels pain in his chest area. Doctors now are trying to find out about the chest area. He is on heavy pain killers (fentanyl, percocet) , alleve and still he can feel the pain. Our doctor said to stay on the combo, but I worry his bone mets will progress too much before the medicine starts to work.
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- June 24, 2014 at 7:30 am
Thank you all for your responses. My husband told me he feels that he is unable to beat the cancer anymore because after the 12 weeks scans (also MRI) they started radiation on his back and now his sacrum. He now feels his back pain is back after only 1 month after radiation and he feels pain in his chest area. Doctors now are trying to find out about the chest area. He is on heavy pain killers (fentanyl, percocet) , alleve and still he can feel the pain. Our doctor said to stay on the combo, but I worry his bone mets will progress too much before the medicine starts to work.
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- June 24, 2014 at 7:30 am
Thank you all for your responses. My husband told me he feels that he is unable to beat the cancer anymore because after the 12 weeks scans (also MRI) they started radiation on his back and now his sacrum. He now feels his back pain is back after only 1 month after radiation and he feels pain in his chest area. Doctors now are trying to find out about the chest area. He is on heavy pain killers (fentanyl, percocet) , alleve and still he can feel the pain. Our doctor said to stay on the combo, but I worry his bone mets will progress too much before the medicine starts to work.
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I had a later response to pd1's MK-3475. And I am doing great now.
When I started pd1 I had metastisis in the lymph nodes in both arm pits, behind my chestwall, wrapped around my heart, and a mass on my liver. The biopsied node in my right arm pit that got me into the trial was a little bigger than a grape in size.
I scanned again 3 months later and all the disease disappeared everywhere (and has not returned,) except that one bad node in my right arm pit had doubled in size and now was the size of a ping-pong ball. Then again 3 months after that (so 6 months into the pd1 trial) the bad node had now doubled in size again and was more like a peach. So the doctors started to really think that the pd1 wasn't working and the they almost took me off of treatment.
I was one week from meeting with the surgeon to talk about surgery when I started experiencing stabbing pains to my bad node. Those pains continued for 24 hours every 5-8 seconds. It was scary and I didn't understand, but my doctors said that it sounded like it was finally responding to treatment. I woke up the next day and that node was the size of a baseball and hanging out of my arm pit. But two days after that, it was back to a smaller size and it was no longer hanging out of me. I scanned and it showed that the node had liquified and the doctors said that meant it was dying. That the treatment had worked. And it has been going back down in size, about 15% smaller every 5 weeks, ever since.
I am now doing great. Still no reoccurances anywhere else and that node is back down to the size of a thumb nail.
I know it is a different treatment than your husband is on, and that I don't have mets in my bones, but I just wanted to let you know that I appeared to be very far gone and had a wall to climb that looked impossible, because some of the mets were responding, but that bad node was still aggressively growing. And yet it finally was reversed by the MK-3475 pd1 treatment and I believe by the healthy changes I have made with my diet and products I use.
Pd1 was also not so rough on my immue system. I've been pretty healthy the whole time and able to work full time, no problem. So hang in there! Your husband too could just need a little more time for the bones to respond. 🙂 All the best to you and your husband.
Laurie