madeclaire

Hi Mark,  So sorry you have to deal with this.  I have lived with a rare form of melanoma which presented in the mucosa of my nose ten years ago.  After surgery I was 5 years ned but t came back, several surgeries, radiation to my face and as of last August mets to the liver stage 4.  You can check my profile for more detail. I am now trying to beat it back from my liver first with IPI and now Dacarbazine.  with good results.  Had to suspend chemo to treat a problem spot with radiation on my spine.  There are a lot of new treatments being rushed to trial and I hope to try an anti PD 1 trial post chemo.  My advice is to keep several lines of research going at all times to stay on top of the latest treatments.  I've heard good things about the NIH in Bethesda and of course MD Anderson.  My instinct is that the more you are willing and able to travel the better your options.  A good team of advocates can't hurt and this site is a great resource.  Best of luck

Hi Mark,  So sorry you have to deal with this.  I have lived with a rare form of melanoma which presented in the mucosa of my nose ten years ago.  After surgery I was 5 years ned but t came back, several surgeries, radiation to my face and as of last August mets to the liver stage 4.  You can check my profile for more detail. I am now trying to beat it back from my liver first with IPI and now Dacarbazine.  with good results.  Had to suspend chemo to treat a problem spot with radiation on my spine.  There are a lot of new treatments being rushed to trial and I hope to try an anti PD 1 trial post chemo.  My advice is to keep several lines of research going at all times to stay on top of the latest treatments.  I've heard good things about the NIH in Bethesda and of course MD Anderson.  My instinct is that the more you are willing and able to travel the better your options.  A good team of advocates can't hurt and this site is a great resource.  Best of luck

Hi Mark,  So sorry you have to deal with this.  I have lived with a rare form of melanoma which presented in the mucosa of my nose ten years ago.  After surgery I was 5 years ned but t came back, several surgeries, radiation to my face and as of last August mets to the liver stage 4.  You can check my profile for more detail. I am now trying to beat it back from my liver first with IPI and now Dacarbazine.  with good results.  Had to suspend chemo to treat a problem spot with radiation on my spine.  There are a lot of new treatments being rushed to trial and I hope to try an anti PD 1 trial post chemo.  My advice is to keep several lines of research going at all times to stay on top of the latest treatments.  I've heard good things about the NIH in Bethesda and of course MD Anderson.  My instinct is that the more you are willing and able to travel the better your options.  A good team of advocates can't hurt and this site is a great resource.  Best of luck

Hi.

I opted for IPI when presented with the choice.  Iknow there's an onoging trial at NIH for a new IL 15 that seems promising.  You may want to look into that while waiting for the results of tumor testing.  The ipi was more or less tolerable giving me some intense intestinal bloating after the first round.  Many folks have posted that they have experienced very little side effects, so it's very individual. I was scanned after round three and showed disease progression.  We switched to chemo (dacarbazine) and after 2 treatments the scans showed significant tumor shrinkage (40%)  It is my opinion that the ipi worked in tandem with the chemo somehow.  I;m looking for other options if the chemo stops working such as an Anti Pd1 trial, but in the meantime, I'm tolerating the chemo very well.  Just a little nausea, loss of appitite and negligible hair loss.  I hope this helps and wish you both the best.   Madeline

Hi.

I opted for IPI when presented with the choice.  Iknow there's an onoging trial at NIH for a new IL 15 that seems promising.  You may want to look into that while waiting for the results of tumor testing.  The ipi was more or less tolerable giving me some intense intestinal bloating after the first round.  Many folks have posted that they have experienced very little side effects, so it's very individual. I was scanned after round three and showed disease progression.  We switched to chemo (dacarbazine) and after 2 treatments the scans showed significant tumor shrinkage (40%)  It is my opinion that the ipi worked in tandem with the chemo somehow.  I;m looking for other options if the chemo stops working such as an Anti Pd1 trial, but in the meantime, I'm tolerating the chemo very well.  Just a little nausea, loss of appitite and negligible hair loss.  I hope this helps and wish you both the best.   Madeline

Hi.

I opted for IPI when presented with the choice.  Iknow there's an onoging trial at NIH for a new IL 15 that seems promising.  You may want to look into that while waiting for the results of tumor testing.  The ipi was more or less tolerable giving me some intense intestinal bloating after the first round.  Many folks have posted that they have experienced very little side effects, so it's very individual. I was scanned after round three and showed disease progression.  We switched to chemo (dacarbazine) and after 2 treatments the scans showed significant tumor shrinkage (40%)  It is my opinion that the ipi worked in tandem with the chemo somehow.  I;m looking for other options if the chemo stops working such as an Anti Pd1 trial, but in the meantime, I'm tolerating the chemo very well.  Just a little nausea, loss of appitite and negligible hair loss.  I hope this helps and wish you both the best.   Madeline

I know that this disease is different for everyone, but after 3 courses of IPI with no improvement and with significant tumor growth, I began chemo (dacarbazine).  Scans after two treatments showed a 40% reduction in large liver tumors and the disappearance of lesions in the lungs.  I continue with the chemo which has minimal side effects.  I believe the IPI has helped the chemo to work and this is what I hope for you.  Best of luck!  M

I know that this disease is different for everyone, but after 3 courses of IPI with no improvement and with significant tumor growth, I began chemo (dacarbazine).  Scans after two treatments showed a 40% reduction in large liver tumors and the disappearance of lesions in the lungs.  I continue with the chemo which has minimal side effects.  I believe the IPI has helped the chemo to work and this is what I hope for you.  Best of luck!  M

I know that this disease is different for everyone, but after 3 courses of IPI with no improvement and with significant tumor growth, I began chemo (dacarbazine).  Scans after two treatments showed a 40% reduction in large liver tumors and the disappearance of lesions in the lungs.  I continue with the chemo which has minimal side effects.  I believe the IPI has helped the chemo to work and this is what I hope for you.  Best of luck!  M

Hi,  take heart, about 3 months ago I was in your position, stage IV with mets to lung and liver.  After 3 treatments of Yervoy spaced 3 weeks apart  scans showed that the largest tumor in the liver had grown asignificantly as well as other smaller ones.  Since my liver enzymes were also quite elevated I decided to come off Yervoy and start chemo (Dacarbazine)  After only two treatments scans showed a 45% reduction in tumor size.  It is my belief that the yervoy took longer to work and in conjuntion with the chemo really beat back the cancer,  I'm continuing with the chemo for as long as it works with my eye to an anti pd1 trial down the road.

Yervoy caused some intestinal bloating and pain which we watched closely and which lasted only after the initial treatment.  I also experienced mild fever at night and some fatigue.  Everyone is different.  I would characterize myself as an otherwise healthy 60 yr old female who has gone through multiple surgeries and head and neck radiation (no fun) fighting this disease over the last decade.  Best of luck to you

Hi,  take heart, about 3 months ago I was in your position, stage IV with mets to lung and liver.  After 3 treatments of Yervoy spaced 3 weeks apart  scans showed that the largest tumor in the liver had grown asignificantly as well as other smaller ones.  Since my liver enzymes were also quite elevated I decided to come off Yervoy and start chemo (Dacarbazine)  After only two treatments scans showed a 45% reduction in tumor size.  It is my belief that the yervoy took longer to work and in conjuntion with the chemo really beat back the cancer,  I'm continuing with the chemo for as long as it works with my eye to an anti pd1 trial down the road.

Yervoy caused some intestinal bloating and pain which we watched closely and which lasted only after the initial treatment.  I also experienced mild fever at night and some fatigue.  Everyone is different.  I would characterize myself as an otherwise healthy 60 yr old female who has gone through multiple surgeries and head and neck radiation (no fun) fighting this disease over the last decade.  Best of luck to you

Hi,  take heart, about 3 months ago I was in your position, stage IV with mets to lung and liver.  After 3 treatments of Yervoy spaced 3 weeks apart  scans showed that the largest tumor in the liver had grown asignificantly as well as other smaller ones.  Since my liver enzymes were also quite elevated I decided to come off Yervoy and start chemo (Dacarbazine)  After only two treatments scans showed a 45% reduction in tumor size.  It is my belief that the yervoy took longer to work and in conjuntion with the chemo really beat back the cancer,  I'm continuing with the chemo for as long as it works with my eye to an anti pd1 trial down the road.

Yervoy caused some intestinal bloating and pain which we watched closely and which lasted only after the initial treatment.  I also experienced mild fever at night and some fatigue.  Everyone is different.  I would characterize myself as an otherwise healthy 60 yr old female who has gone through multiple surgeries and head and neck radiation (no fun) fighting this disease over the last decade.  Best of luck to you

Try a product called scandishake.  You can find it online.  Mixed with milk or soy milk it will add 600 calories to his diet and it's tasty.  Not really sure how nutritional it is though.  Good luck

Try a product called scandishake.  You can find it online.  Mixed with milk or soy milk it will add 600 calories to his diet and it's tasty.  Not really sure how nutritional it is though.  Good luck

Try a product called scandishake.  You can find it online.  Mixed with milk or soy milk it will add 600 calories to his diet and it's tasty.  Not really sure how nutritional it is though.  Good luck