› Forums › General Melanoma Community › Anybody know about chemo?
- This topic has 27 replies, 9 voices, and was last updated 8 years, 8 months ago by
eturner82.
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- August 17, 2015 at 8:43 pm
Yes I know chemo is not for us. No long term and all that. Doesn't really work very good and all that. I'm not sure what type of chemo but I think it is that same combination that Shane did to knock his tumors down and now I think he's on pd1 but I could be wrong.
I was wondering if anyone knows how often you get it? I imagine the side affects will be way rougher than I've got used to on pd1?
The only reason I'm considering it is my long distance doc wants me off the pd1 although it is still slowing things down. He wants to use this as a bridge until they get an opening for me in one of their potentially good immunotherapy trials.
Im just not sure what affect this will have on me. When I asked my saint Louis doc last May he said it would make me very sick and it might hinder me getting into a trial. Im also not sure of the logic of such a sequence of meds. Like going off pd1 after 15 months of trying to build up my immune system to knock it back down with rough chemo then build it up again with a different immunotherapy. But that doc is smart and experienced in immunotherapy so maybe that would be best. I dunno. They do that logic with til to knock the immune system out before replacing it so I dunno.
Any thoughts?
Artie
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- August 17, 2015 at 9:52 pm
I had one Paclitaxel before surgery and three DTIC chemo after surgery 17 years ago,
Very bad memory, pain all over the body, vomit, no apetite, fatigue and so on. And you can image what I felt when I was just off the chemo and then heading to the surgery.
It might work great for me since after that I was 17 years NED.
My doctors cared about me very much, but they did not treat this kind of cancer before so they discussed with me trying to put very strong medcine on me. I was young, strong and very tough and brave so that I accepted any kinds of challenge onto me.
My experience was, try your best to eat, keep eating, drinking, and struggle for some excise. Have very good rest in between, do not think about anything. Rest.
My schedule was just, three meals, three sleep, three wake up walking. Enough fruit, water.
It will knock down the micro level cells, to prevent it becomes big problem. But your body is knocked too, so, help your body rebuild.
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- August 18, 2015 at 12:05 am
Hi Artie! My doctor considered putting me on Temodar (not sure I spelled that correctly) while I was waiting for a trial to open at Johns Hopkins. I didn't end up doing it because I got into a trial at NIH. It's taken in the form of a pill. He said nausea and fatigue are common side effects. I hope you get into a trial soon!
Best Wishes!
Terrie
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- August 18, 2015 at 12:05 am
Hi Artie! My doctor considered putting me on Temodar (not sure I spelled that correctly) while I was waiting for a trial to open at Johns Hopkins. I didn't end up doing it because I got into a trial at NIH. It's taken in the form of a pill. He said nausea and fatigue are common side effects. I hope you get into a trial soon!
Best Wishes!
Terrie
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- August 18, 2015 at 12:05 am
Hi Artie! My doctor considered putting me on Temodar (not sure I spelled that correctly) while I was waiting for a trial to open at Johns Hopkins. I didn't end up doing it because I got into a trial at NIH. It's taken in the form of a pill. He said nausea and fatigue are common side effects. I hope you get into a trial soon!
Best Wishes!
Terrie
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- August 17, 2015 at 9:52 pm
I had one Paclitaxel before surgery and three DTIC chemo after surgery 17 years ago,
Very bad memory, pain all over the body, vomit, no apetite, fatigue and so on. And you can image what I felt when I was just off the chemo and then heading to the surgery.
It might work great for me since after that I was 17 years NED.
My doctors cared about me very much, but they did not treat this kind of cancer before so they discussed with me trying to put very strong medcine on me. I was young, strong and very tough and brave so that I accepted any kinds of challenge onto me.
My experience was, try your best to eat, keep eating, drinking, and struggle for some excise. Have very good rest in between, do not think about anything. Rest.
My schedule was just, three meals, three sleep, three wake up walking. Enough fruit, water.
It will knock down the micro level cells, to prevent it becomes big problem. But your body is knocked too, so, help your body rebuild.
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- August 17, 2015 at 9:52 pm
I had one Paclitaxel before surgery and three DTIC chemo after surgery 17 years ago,
Very bad memory, pain all over the body, vomit, no apetite, fatigue and so on. And you can image what I felt when I was just off the chemo and then heading to the surgery.
It might work great for me since after that I was 17 years NED.
My doctors cared about me very much, but they did not treat this kind of cancer before so they discussed with me trying to put very strong medcine on me. I was young, strong and very tough and brave so that I accepted any kinds of challenge onto me.
My experience was, try your best to eat, keep eating, drinking, and struggle for some excise. Have very good rest in between, do not think about anything. Rest.
My schedule was just, three meals, three sleep, three wake up walking. Enough fruit, water.
It will knock down the micro level cells, to prevent it becomes big problem. But your body is knocked too, so, help your body rebuild.
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- August 18, 2015 at 1:36 am
Artie, I was initially diagnosed with Scarcoma although ultimately had a surgical biosipy after node dissection that confirmed melenoma. However in the duration I had lots of chemo and was actually found NED for several months. The chemo was rough not at all like the yerovy and nivo that I'm now receiving so it can reduce and clear up mets in the short term The treatment is not at all pleasant, however I also recieved radiation locally in the lymph area so I'm not sure what just the chemo alone will do to you. Overall I would expect that it can help slow down progress of the Mets while you are waiting for other treatment
Side effects included fatigue, no appetite nausea and a general overall difficult time I was week and suffered low blood pressure and all the rest Go for it if you can I don't recal the various drugs that I recieved but I can check if you need more info
Chris
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- August 18, 2015 at 1:36 am
Artie, I was initially diagnosed with Scarcoma although ultimately had a surgical biosipy after node dissection that confirmed melenoma. However in the duration I had lots of chemo and was actually found NED for several months. The chemo was rough not at all like the yerovy and nivo that I'm now receiving so it can reduce and clear up mets in the short term The treatment is not at all pleasant, however I also recieved radiation locally in the lymph area so I'm not sure what just the chemo alone will do to you. Overall I would expect that it can help slow down progress of the Mets while you are waiting for other treatment
Side effects included fatigue, no appetite nausea and a general overall difficult time I was week and suffered low blood pressure and all the rest Go for it if you can I don't recal the various drugs that I recieved but I can check if you need more info
Chris
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- August 18, 2015 at 1:36 am
Artie, I was initially diagnosed with Scarcoma although ultimately had a surgical biosipy after node dissection that confirmed melenoma. However in the duration I had lots of chemo and was actually found NED for several months. The chemo was rough not at all like the yerovy and nivo that I'm now receiving so it can reduce and clear up mets in the short term The treatment is not at all pleasant, however I also recieved radiation locally in the lymph area so I'm not sure what just the chemo alone will do to you. Overall I would expect that it can help slow down progress of the Mets while you are waiting for other treatment
Side effects included fatigue, no appetite nausea and a general overall difficult time I was week and suffered low blood pressure and all the rest Go for it if you can I don't recal the various drugs that I recieved but I can check if you need more info
Chris
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- August 18, 2015 at 3:09 am
I can't really tell what it is that your doc is offering you regarding chemo, Artie. You are right that old time chemo is not something that melanoma responds very well to. However, sometimes it is used as a stop-gap measure. Side effects are often fatigue, nausea, vomiting, hair loss, decreased white cell counts leading to immune suppression. Although all of these vary in degree depending on dosage and the drug administered. But….I was thinking about your position and question earlier…and put this together. Not sure it will be of any help…. but here it is: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/this-ones-for-you-artie-electrochemo-to.html
May be a bit far fetched. But, thought it may be something to ask about. Yours, Celeste
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- August 18, 2015 at 3:09 am
I can't really tell what it is that your doc is offering you regarding chemo, Artie. You are right that old time chemo is not something that melanoma responds very well to. However, sometimes it is used as a stop-gap measure. Side effects are often fatigue, nausea, vomiting, hair loss, decreased white cell counts leading to immune suppression. Although all of these vary in degree depending on dosage and the drug administered. But….I was thinking about your position and question earlier…and put this together. Not sure it will be of any help…. but here it is: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/this-ones-for-you-artie-electrochemo-to.html
May be a bit far fetched. But, thought it may be something to ask about. Yours, Celeste
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- August 18, 2015 at 3:09 am
I can't really tell what it is that your doc is offering you regarding chemo, Artie. You are right that old time chemo is not something that melanoma responds very well to. However, sometimes it is used as a stop-gap measure. Side effects are often fatigue, nausea, vomiting, hair loss, decreased white cell counts leading to immune suppression. Although all of these vary in degree depending on dosage and the drug administered. But….I was thinking about your position and question earlier…and put this together. Not sure it will be of any help…. but here it is: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/this-ones-for-you-artie-electrochemo-to.html
May be a bit far fetched. But, thought it may be something to ask about. Yours, Celeste
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- August 18, 2015 at 6:09 pm
Thank you everyone. Chemo sounds like it might be too rough for me. I'm kind of fragile after over two years of radiation and meds and disease. Granted I guess most of us are. But I'm pretty sure it would knock my Ecog down to 2 and I would spiral down from there. But maybe that's just my fear talking. Also with hat Ecog I couldn't get in the trial we would be waiting for.
Thanks Celeste that electricity sounds interesting. I haven't found anyplace doing it at this time yet. I think there is a link between electricity and the immune system. That is based on the success dr Omar um the one in Los Angeles who applied a massive dose of electricity to solid tumors and injected il2 directly in the tumor. Like 8 out of 9 saw massive tumor shrinkage in days. But the amount of electricity he used was too much to be near anything vital so mostly arms and legs. The one you have seems more like would be needed for me. More delicate amount to the spine and probably should have done direct injections or at least nearby since not sure if you can inject into bone.
Im seriously considering the keytruda with daily self given injections of il10 trial. I'll talk to my doc again Tuesday but I'm pretty sure that might help. After all keytruda is my favorite med and the doc said it needs something to get me to remission. So maybe just maybe if I'm lucky that will be it.
Artie
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- August 18, 2015 at 6:09 pm
Thank you everyone. Chemo sounds like it might be too rough for me. I'm kind of fragile after over two years of radiation and meds and disease. Granted I guess most of us are. But I'm pretty sure it would knock my Ecog down to 2 and I would spiral down from there. But maybe that's just my fear talking. Also with hat Ecog I couldn't get in the trial we would be waiting for.
Thanks Celeste that electricity sounds interesting. I haven't found anyplace doing it at this time yet. I think there is a link between electricity and the immune system. That is based on the success dr Omar um the one in Los Angeles who applied a massive dose of electricity to solid tumors and injected il2 directly in the tumor. Like 8 out of 9 saw massive tumor shrinkage in days. But the amount of electricity he used was too much to be near anything vital so mostly arms and legs. The one you have seems more like would be needed for me. More delicate amount to the spine and probably should have done direct injections or at least nearby since not sure if you can inject into bone.
Im seriously considering the keytruda with daily self given injections of il10 trial. I'll talk to my doc again Tuesday but I'm pretty sure that might help. After all keytruda is my favorite med and the doc said it needs something to get me to remission. So maybe just maybe if I'm lucky that will be it.
Artie
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- August 18, 2015 at 9:42 pm
Hi Artie! I have had dacarbazine for one year. During that time my tumor was held back, the MRI showed no change. But a tiny tumor in my lung disappered. 5 weeks ago I started Keytruda (EAP), haven't been scanned yet, but I feel better than I have done for years. So first I had nivo for 12 weeks, scan showed little growth so I had to quit. Then I had just one dose of IPI and got very ill. Then I had chemo, infusions every second week for abut a year and now keytruda.
I wish you the very best!
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- August 18, 2015 at 9:42 pm
Hi Artie! I have had dacarbazine for one year. During that time my tumor was held back, the MRI showed no change. But a tiny tumor in my lung disappered. 5 weeks ago I started Keytruda (EAP), haven't been scanned yet, but I feel better than I have done for years. So first I had nivo for 12 weeks, scan showed little growth so I had to quit. Then I had just one dose of IPI and got very ill. Then I had chemo, infusions every second week for abut a year and now keytruda.
I wish you the very best!
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- August 18, 2015 at 9:42 pm
Hi Artie! I have had dacarbazine for one year. During that time my tumor was held back, the MRI showed no change. But a tiny tumor in my lung disappered. 5 weeks ago I started Keytruda (EAP), haven't been scanned yet, but I feel better than I have done for years. So first I had nivo for 12 weeks, scan showed little growth so I had to quit. Then I had just one dose of IPI and got very ill. Then I had chemo, infusions every second week for abut a year and now keytruda.
I wish you the very best!
-
- August 18, 2015 at 6:09 pm
Thank you everyone. Chemo sounds like it might be too rough for me. I'm kind of fragile after over two years of radiation and meds and disease. Granted I guess most of us are. But I'm pretty sure it would knock my Ecog down to 2 and I would spiral down from there. But maybe that's just my fear talking. Also with hat Ecog I couldn't get in the trial we would be waiting for.
Thanks Celeste that electricity sounds interesting. I haven't found anyplace doing it at this time yet. I think there is a link between electricity and the immune system. That is based on the success dr Omar um the one in Los Angeles who applied a massive dose of electricity to solid tumors and injected il2 directly in the tumor. Like 8 out of 9 saw massive tumor shrinkage in days. But the amount of electricity he used was too much to be near anything vital so mostly arms and legs. The one you have seems more like would be needed for me. More delicate amount to the spine and probably should have done direct injections or at least nearby since not sure if you can inject into bone.
Im seriously considering the keytruda with daily self given injections of il10 trial. I'll talk to my doc again Tuesday but I'm pretty sure that might help. After all keytruda is my favorite med and the doc said it needs something to get me to remission. So maybe just maybe if I'm lucky that will be it.
Artie
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- August 22, 2015 at 7:13 pm
Hi Artie,
i have not been on this lovely supporting site for long, but I have done ippi and awaiting another scan . I got 50% reduction in liver lungs and else were. Me and my husband talked about what if did not response with my consultant and he said trial but it was chemo . I was a little set back due to having treatment to build my immune system to fight it then chemo which kills all cells leaving you weak . I am no expert or am sure there is plenty support and advice from other members who know a lot more than me. I would only do chemo if it was my only choice . I search myself for other treatments near by which I could probably go on to rather than chemo.
Always here , hope you get on a trial , take care
scooby123
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- August 22, 2015 at 7:13 pm
Hi Artie,
i have not been on this lovely supporting site for long, but I have done ippi and awaiting another scan . I got 50% reduction in liver lungs and else were. Me and my husband talked about what if did not response with my consultant and he said trial but it was chemo . I was a little set back due to having treatment to build my immune system to fight it then chemo which kills all cells leaving you weak . I am no expert or am sure there is plenty support and advice from other members who know a lot more than me. I would only do chemo if it was my only choice . I search myself for other treatments near by which I could probably go on to rather than chemo.
Always here , hope you get on a trial , take care
scooby123
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- August 22, 2015 at 7:13 pm
Hi Artie,
i have not been on this lovely supporting site for long, but I have done ippi and awaiting another scan . I got 50% reduction in liver lungs and else were. Me and my husband talked about what if did not response with my consultant and he said trial but it was chemo . I was a little set back due to having treatment to build my immune system to fight it then chemo which kills all cells leaving you weak . I am no expert or am sure there is plenty support and advice from other members who know a lot more than me. I would only do chemo if it was my only choice . I search myself for other treatments near by which I could probably go on to rather than chemo.
Always here , hope you get on a trial , take care
scooby123
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- August 23, 2015 at 9:52 pm
Hey Artie
My hubby is taking chemo now.. He's on Carboplatin and taxol and has been in it since May ( every 3 weeks ). His scans 2 weeks ago have everything stable. For us that is awesome and we are thankful that we have this( being that his cancer is so advanced ). He's tired ( hematocrit and hemoglobin are low), he has some swelling in his feet and legs ( really that could be from the chemo, steroids, IVC screen or something else ) …. I know chemo is not our cure but it's given us a summer together :). I've been thinking of you and praying Artie.
Emily
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- August 23, 2015 at 9:52 pm
Hey Artie
My hubby is taking chemo now.. He's on Carboplatin and taxol and has been in it since May ( every 3 weeks ). His scans 2 weeks ago have everything stable. For us that is awesome and we are thankful that we have this( being that his cancer is so advanced ). He's tired ( hematocrit and hemoglobin are low), he has some swelling in his feet and legs ( really that could be from the chemo, steroids, IVC screen or something else ) …. I know chemo is not our cure but it's given us a summer together :). I've been thinking of you and praying Artie.
Emily
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- August 23, 2015 at 9:52 pm
Hey Artie
My hubby is taking chemo now.. He's on Carboplatin and taxol and has been in it since May ( every 3 weeks ). His scans 2 weeks ago have everything stable. For us that is awesome and we are thankful that we have this( being that his cancer is so advanced ). He's tired ( hematocrit and hemoglobin are low), he has some swelling in his feet and legs ( really that could be from the chemo, steroids, IVC screen or something else ) …. I know chemo is not our cure but it's given us a summer together :). I've been thinking of you and praying Artie.
Emily
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