› Forums › General Melanoma Community › New here with stage 4 melanoma, i had my first treatment of Yervoy yesterday,
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- January 31, 2013 at 4:17 pm
Hi, i just found this site today, as stated above, i have stage 4 Melanoma that has spread to my liver and upper GI track. The tumor on my GI track is causing blood to leak into the GI track, So yesterday i had the first dose of Yervoy and a blood transfusion . I see a lot of people on here have lots of bad side effects from the Yervoy, but what about the positive results from the Yervoy, Has anyone had good results ?????? Thanks, JerreHi, i just found this site today, as stated above, i have stage 4 Melanoma that has spread to my liver and upper GI track. The tumor on my GI track is causing blood to leak into the GI track, So yesterday i had the first dose of Yervoy and a blood transfusion . I see a lot of people on here have lots of bad side effects from the Yervoy, but what about the positive results from the Yervoy, Has anyone had good results ?????? Thanks, Jerre
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- January 31, 2013 at 5:11 pm
My husband has also started Yervoy on 18 January 2013, He had a melanoma metastatic tumor in his left lung. 14 years ago he had a melonoma removed behind his right ear and now it has come back. Yervoy is only available on trial in South Africa. He already finished 4 cycles of CVD-chemo.
With the yervoy he is also tired and he has a lot of needles and pins in his feet. I would also like to hear about some positive results with yervoy.
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- January 31, 2013 at 5:11 pm
My husband has also started Yervoy on 18 January 2013, He had a melanoma metastatic tumor in his left lung. 14 years ago he had a melonoma removed behind his right ear and now it has come back. Yervoy is only available on trial in South Africa. He already finished 4 cycles of CVD-chemo.
With the yervoy he is also tired and he has a lot of needles and pins in his feet. I would also like to hear about some positive results with yervoy.
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- January 31, 2013 at 5:11 pm
My husband has also started Yervoy on 18 January 2013, He had a melanoma metastatic tumor in his left lung. 14 years ago he had a melonoma removed behind his right ear and now it has come back. Yervoy is only available on trial in South Africa. He already finished 4 cycles of CVD-chemo.
With the yervoy he is also tired and he has a lot of needles and pins in his feet. I would also like to hear about some positive results with yervoy.
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- January 31, 2013 at 5:13 pm
My husband has also started Yervoy on 18 January 2013, He had a melanoma metastatic tumor in his left lung. 14 years ago he had a melonoma removed behind his right ear and now it has come back. Yervoy is only available on trial in South Africa. He already finished 4 cycles of CVD-chemo.
With the yervoy he is also tired and he has a lot of needles and pins in his feet. I would also like to hear about some positive results with yervoy.
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- January 31, 2013 at 5:13 pm
My husband has also started Yervoy on 18 January 2013, He had a melanoma metastatic tumor in his left lung. 14 years ago he had a melonoma removed behind his right ear and now it has come back. Yervoy is only available on trial in South Africa. He already finished 4 cycles of CVD-chemo.
With the yervoy he is also tired and he has a lot of needles and pins in his feet. I would also like to hear about some positive results with yervoy.
-
- January 31, 2013 at 5:13 pm
My husband has also started Yervoy on 18 January 2013, He had a melanoma metastatic tumor in his left lung. 14 years ago he had a melonoma removed behind his right ear and now it has come back. Yervoy is only available on trial in South Africa. He already finished 4 cycles of CVD-chemo.
With the yervoy he is also tired and he has a lot of needles and pins in his feet. I would also like to hear about some positive results with yervoy.
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- January 31, 2013 at 5:26 pm
My husband started Yervoy (Ipi) in March 2011 in a Clinical Trial and is now NED. Try typing in the search area the drug name to find more results on this drug.
You can read his info page about him for more information.
Judy (loving wife of Gene now NED but was Stage IV in liver, lungs and unresectable on the spine at Cervical spine.)
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- January 31, 2013 at 5:26 pm
My husband started Yervoy (Ipi) in March 2011 in a Clinical Trial and is now NED. Try typing in the search area the drug name to find more results on this drug.
You can read his info page about him for more information.
Judy (loving wife of Gene now NED but was Stage IV in liver, lungs and unresectable on the spine at Cervical spine.)
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- January 31, 2013 at 5:26 pm
My husband started Yervoy (Ipi) in March 2011 in a Clinical Trial and is now NED. Try typing in the search area the drug name to find more results on this drug.
You can read his info page about him for more information.
Judy (loving wife of Gene now NED but was Stage IV in liver, lungs and unresectable on the spine at Cervical spine.)
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- January 31, 2013 at 6:08 pm
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
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- January 31, 2013 at 6:08 pm
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
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- January 31, 2013 at 6:08 pm
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
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- February 1, 2013 at 2:35 pm
Jerre,
I just completed my 3rd dose yesterday, so have not had scans yet to see results. But, I wanted to comment on the side effects. I have had none thus far. Many people do not have side effects until after the 3rd dose, and many times they are very managable form what I have read. I would be very alert to any GI symptoms and call the Dr without delay if those type of symptoms pop up, just because of your tumor location. Also, there is an older post on here with numerous people sharing good results from back in the trials before it became approved. My Dr is very enthused abt it because of the hope of a durable response it holds. He has pts that started on it in the trial stage 5 & 6 yrs ago & they are still going strong.
I am very sorry you have reason to be here on this site… but I will say you will find on here a GREAT support system. Like no other. I consider this board as one of my greatest sources of help and information. Let us know how you are doing! I will look forward to hopefully seeing you add your good reports on to the others!!
Tina
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- February 1, 2013 at 2:35 pm
Jerre,
I just completed my 3rd dose yesterday, so have not had scans yet to see results. But, I wanted to comment on the side effects. I have had none thus far. Many people do not have side effects until after the 3rd dose, and many times they are very managable form what I have read. I would be very alert to any GI symptoms and call the Dr without delay if those type of symptoms pop up, just because of your tumor location. Also, there is an older post on here with numerous people sharing good results from back in the trials before it became approved. My Dr is very enthused abt it because of the hope of a durable response it holds. He has pts that started on it in the trial stage 5 & 6 yrs ago & they are still going strong.
I am very sorry you have reason to be here on this site… but I will say you will find on here a GREAT support system. Like no other. I consider this board as one of my greatest sources of help and information. Let us know how you are doing! I will look forward to hopefully seeing you add your good reports on to the others!!
Tina
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- February 1, 2013 at 2:35 pm
Jerre,
I just completed my 3rd dose yesterday, so have not had scans yet to see results. But, I wanted to comment on the side effects. I have had none thus far. Many people do not have side effects until after the 3rd dose, and many times they are very managable form what I have read. I would be very alert to any GI symptoms and call the Dr without delay if those type of symptoms pop up, just because of your tumor location. Also, there is an older post on here with numerous people sharing good results from back in the trials before it became approved. My Dr is very enthused abt it because of the hope of a durable response it holds. He has pts that started on it in the trial stage 5 & 6 yrs ago & they are still going strong.
I am very sorry you have reason to be here on this site… but I will say you will find on here a GREAT support system. Like no other. I consider this board as one of my greatest sources of help and information. Let us know how you are doing! I will look forward to hopefully seeing you add your good reports on to the others!!
Tina
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- February 1, 2013 at 11:09 pm
Hello,
I just actually posted something in response to someone else's question about Yervoy. I personally had very good success with it. As I said in the earlier posting, at the time I started taking it, I was bedridden and sick as hell. Within a week of starting Yervoy, most of my symptoms had disappeared. It seriously brought me back to life. It continued to work great for all the time I was on it (a year or so). In fact, to this day, the cancer I had in my liver and lungs is no longer there, I think as a result of Yervoy. As for side effects, I had crazily itchy legs, but nothing else. It was a piece of cake.
Best of luck!
Josh
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- February 1, 2013 at 11:09 pm
Hello,
I just actually posted something in response to someone else's question about Yervoy. I personally had very good success with it. As I said in the earlier posting, at the time I started taking it, I was bedridden and sick as hell. Within a week of starting Yervoy, most of my symptoms had disappeared. It seriously brought me back to life. It continued to work great for all the time I was on it (a year or so). In fact, to this day, the cancer I had in my liver and lungs is no longer there, I think as a result of Yervoy. As for side effects, I had crazily itchy legs, but nothing else. It was a piece of cake.
Best of luck!
Josh
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- February 1, 2013 at 11:09 pm
Hello,
I just actually posted something in response to someone else's question about Yervoy. I personally had very good success with it. As I said in the earlier posting, at the time I started taking it, I was bedridden and sick as hell. Within a week of starting Yervoy, most of my symptoms had disappeared. It seriously brought me back to life. It continued to work great for all the time I was on it (a year or so). In fact, to this day, the cancer I had in my liver and lungs is no longer there, I think as a result of Yervoy. As for side effects, I had crazily itchy legs, but nothing else. It was a piece of cake.
Best of luck!
Josh
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- February 2, 2013 at 8:06 am
Morning Josh
Does the itchy legs dissapear when the treatment with Yervoy is finished. I must confess, this treatment is not really a piece of cake for us.
My mother died in 2007 from cancer making my past experience with cancer somewhat negative. My husband had a melanoma removed behind his right ear 14 years ago in 1998. The docter was not worried. However, I read about melanoma and was worried. As there is no blood test confirming whether the melanoma return, I sent my husband to a dermatologist every second year.
My mother in law got annoyed withe me and keep telling me she does not believe my husband has cancer but I kept sending him for checkups. In 2010 he was complaining about pain behind his left shoulder. We took some X-rays, but it was clear, and no follow up was suggested.
July 2012 he was getting serious chest pains and was diagnosed with "lung vlies ontsteking" . After two sets of antibiotics another Xray was taken confirming a tumor 10cm x 6 cm in the left lung. We then started with chemo (CVD – Cisplastin – Vinblastine and Dacarbazine in August and finish four cycles of chemo last year. The firt chemo was a piece of cake, but the last one was really terrible. He is farming with peaches in South Africa and all the chemo sessions was in the midst of his harvesting season. He had to get some extra help, but with the last chemo he literally could not move for 3 days. He got 4 hours of chemo on three consecutive days, starting on Wednesday and finishing on Friday and the fatique was the worst from the Saturday until the Monday.
At least, a week down the line his energy levels would pick up. He has not lost any weight yet. Maybe he has not recover enough from the last chemo in November. He started yervoy on 18 January. He is not so tired but his energy levels is not picking up and we must go for the second cycle this coming Friday.
Is the fatigue going to get worse then?
The tumor is next to his main lung vein and it is too dangerous to do an operation. I read that with the Yervoy the tumor sometimes get bigger before it started to decrease in size. But I am worried as there is not much space for this tumor to grow and he is starting to cough up blood again as in the beginning when the disease was diagnosed. About three teaspoons of fresh blood. He told me not to worry but I am worried. Our son is turning 11 and our daughter 13.
He tested positive for the BRAF-mutation but unfortunately the trials of Zelboraf finised in November in South Africa and this is no longer available in South Africa and our medical aid does not cover immunotherapy.
Sorry, but today I am a bit negative about this cancer.
Annemarie
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- February 2, 2013 at 8:06 am
Morning Josh
Does the itchy legs dissapear when the treatment with Yervoy is finished. I must confess, this treatment is not really a piece of cake for us.
My mother died in 2007 from cancer making my past experience with cancer somewhat negative. My husband had a melanoma removed behind his right ear 14 years ago in 1998. The docter was not worried. However, I read about melanoma and was worried. As there is no blood test confirming whether the melanoma return, I sent my husband to a dermatologist every second year.
My mother in law got annoyed withe me and keep telling me she does not believe my husband has cancer but I kept sending him for checkups. In 2010 he was complaining about pain behind his left shoulder. We took some X-rays, but it was clear, and no follow up was suggested.
July 2012 he was getting serious chest pains and was diagnosed with "lung vlies ontsteking" . After two sets of antibiotics another Xray was taken confirming a tumor 10cm x 6 cm in the left lung. We then started with chemo (CVD – Cisplastin – Vinblastine and Dacarbazine in August and finish four cycles of chemo last year. The firt chemo was a piece of cake, but the last one was really terrible. He is farming with peaches in South Africa and all the chemo sessions was in the midst of his harvesting season. He had to get some extra help, but with the last chemo he literally could not move for 3 days. He got 4 hours of chemo on three consecutive days, starting on Wednesday and finishing on Friday and the fatique was the worst from the Saturday until the Monday.
At least, a week down the line his energy levels would pick up. He has not lost any weight yet. Maybe he has not recover enough from the last chemo in November. He started yervoy on 18 January. He is not so tired but his energy levels is not picking up and we must go for the second cycle this coming Friday.
Is the fatigue going to get worse then?
The tumor is next to his main lung vein and it is too dangerous to do an operation. I read that with the Yervoy the tumor sometimes get bigger before it started to decrease in size. But I am worried as there is not much space for this tumor to grow and he is starting to cough up blood again as in the beginning when the disease was diagnosed. About three teaspoons of fresh blood. He told me not to worry but I am worried. Our son is turning 11 and our daughter 13.
He tested positive for the BRAF-mutation but unfortunately the trials of Zelboraf finised in November in South Africa and this is no longer available in South Africa and our medical aid does not cover immunotherapy.
Sorry, but today I am a bit negative about this cancer.
Annemarie
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- February 2, 2013 at 3:14 pm
Hey Fishhook,
Just want to assure you that even though not many of us have responded to your question about positive experiences with Yervoy (or have, in fact, given you the opposite of what you were asking for by listing negative experiences with Yervoy) , there are a ton of people on this forum who have had very positive experiences with Yervoy. Certainly, there are some side effects, but in my and many other people's experiences, these side effects can be relatively mild, and certainly not (again in my and many others experiences) severe enough to, for instance, stop you from working or leading a regular life.
Best of luck!
Josh
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- February 2, 2013 at 3:14 pm
Hey Fishhook,
Just want to assure you that even though not many of us have responded to your question about positive experiences with Yervoy (or have, in fact, given you the opposite of what you were asking for by listing negative experiences with Yervoy) , there are a ton of people on this forum who have had very positive experiences with Yervoy. Certainly, there are some side effects, but in my and many other people's experiences, these side effects can be relatively mild, and certainly not (again in my and many others experiences) severe enough to, for instance, stop you from working or leading a regular life.
Best of luck!
Josh
-
- February 2, 2013 at 3:14 pm
Hey Fishhook,
Just want to assure you that even though not many of us have responded to your question about positive experiences with Yervoy (or have, in fact, given you the opposite of what you were asking for by listing negative experiences with Yervoy) , there are a ton of people on this forum who have had very positive experiences with Yervoy. Certainly, there are some side effects, but in my and many other people's experiences, these side effects can be relatively mild, and certainly not (again in my and many others experiences) severe enough to, for instance, stop you from working or leading a regular life.
Best of luck!
Josh
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- February 4, 2013 at 3:10 pm
Annemarie, I don't blame you one bit for being frightened, frustrated and negative. This has been a very difficult journey for your family. I have heard that taking yervoy after chemo can make the yervoy work better. Something about the dead/dying melanoma cells providing more targets for the immune system. I certainly hope that will be the case for your husband.
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- February 4, 2013 at 3:10 pm
Annemarie, I don't blame you one bit for being frightened, frustrated and negative. This has been a very difficult journey for your family. I have heard that taking yervoy after chemo can make the yervoy work better. Something about the dead/dying melanoma cells providing more targets for the immune system. I certainly hope that will be the case for your husband.
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- February 4, 2013 at 3:10 pm
Annemarie, I don't blame you one bit for being frightened, frustrated and negative. This has been a very difficult journey for your family. I have heard that taking yervoy after chemo can make the yervoy work better. Something about the dead/dying melanoma cells providing more targets for the immune system. I certainly hope that will be the case for your husband.
-
- February 2, 2013 at 8:06 am
Morning Josh
Does the itchy legs dissapear when the treatment with Yervoy is finished. I must confess, this treatment is not really a piece of cake for us.
My mother died in 2007 from cancer making my past experience with cancer somewhat negative. My husband had a melanoma removed behind his right ear 14 years ago in 1998. The docter was not worried. However, I read about melanoma and was worried. As there is no blood test confirming whether the melanoma return, I sent my husband to a dermatologist every second year.
My mother in law got annoyed withe me and keep telling me she does not believe my husband has cancer but I kept sending him for checkups. In 2010 he was complaining about pain behind his left shoulder. We took some X-rays, but it was clear, and no follow up was suggested.
July 2012 he was getting serious chest pains and was diagnosed with "lung vlies ontsteking" . After two sets of antibiotics another Xray was taken confirming a tumor 10cm x 6 cm in the left lung. We then started with chemo (CVD – Cisplastin – Vinblastine and Dacarbazine in August and finish four cycles of chemo last year. The firt chemo was a piece of cake, but the last one was really terrible. He is farming with peaches in South Africa and all the chemo sessions was in the midst of his harvesting season. He had to get some extra help, but with the last chemo he literally could not move for 3 days. He got 4 hours of chemo on three consecutive days, starting on Wednesday and finishing on Friday and the fatique was the worst from the Saturday until the Monday.
At least, a week down the line his energy levels would pick up. He has not lost any weight yet. Maybe he has not recover enough from the last chemo in November. He started yervoy on 18 January. He is not so tired but his energy levels is not picking up and we must go for the second cycle this coming Friday.
Is the fatigue going to get worse then?
The tumor is next to his main lung vein and it is too dangerous to do an operation. I read that with the Yervoy the tumor sometimes get bigger before it started to decrease in size. But I am worried as there is not much space for this tumor to grow and he is starting to cough up blood again as in the beginning when the disease was diagnosed. About three teaspoons of fresh blood. He told me not to worry but I am worried. Our son is turning 11 and our daughter 13.
He tested positive for the BRAF-mutation but unfortunately the trials of Zelboraf finised in November in South Africa and this is no longer available in South Africa and our medical aid does not cover immunotherapy.
Sorry, but today I am a bit negative about this cancer.
Annemarie
-
- August 15, 2013 at 10:05 pm
Hi my sister has stage 4 melonoma. Her primary was Back of knee and has now spread to liver,she has 3 small tumours in her liver but doctors at James cook (Middlesbrough) say they can give her zelboraf (vemurafenib) but she will only last 6 months. What where you given and where treated as read so many stories of people being cured who seem in worse situation. I’m trying to find any information I can to help her x -
- August 15, 2013 at 10:05 pm
Hi my sister has stage 4 melonoma. Her primary was Back of knee and has now spread to liver,she has 3 small tumours in her liver but doctors at James cook (Middlesbrough) say they can give her zelboraf (vemurafenib) but she will only last 6 months. What where you given and where treated as read so many stories of people being cured who seem in worse situation. I’m trying to find any information I can to help her x -
- August 15, 2013 at 10:05 pm
Hi my sister has stage 4 melonoma. Her primary was Back of knee and has now spread to liver,she has 3 small tumours in her liver but doctors at James cook (Middlesbrough) say they can give her zelboraf (vemurafenib) but she will only last 6 months. What where you given and where treated as read so many stories of people being cured who seem in worse situation. I’m trying to find any information I can to help her x -
- August 15, 2013 at 10:06 pm
Hi my sister has stage 4 melonoma. Her primary was Back of knee and has now spread to liver,she has 3 small tumours in her liver but doctors at James cook (Middlesbrough) say they can give her zelboraf (vemurafenib) but she will only last 6 months. What where you given and where treated as read so many stories of people being cured who seem in worse situation. I’m trying to find any information I can to help her x -
- August 15, 2013 at 10:06 pm
Hi my sister has stage 4 melonoma. Her primary was Back of knee and has now spread to liver,she has 3 small tumours in her liver but doctors at James cook (Middlesbrough) say they can give her zelboraf (vemurafenib) but she will only last 6 months. What where you given and where treated as read so many stories of people being cured who seem in worse situation. I’m trying to find any information I can to help her x -
- August 15, 2013 at 10:06 pm
Hi my sister has stage 4 melonoma. Her primary was Back of knee and has now spread to liver,she has 3 small tumours in her liver but doctors at James cook (Middlesbrough) say they can give her zelboraf (vemurafenib) but she will only last 6 months. What where you given and where treated as read so many stories of people being cured who seem in worse situation. I’m trying to find any information I can to help her x
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- February 4, 2013 at 2:34 pm
Hi All, I want to think each of you who replied and sent information about your experience with the Yervoy. It has helped me make up my mine to continue with the treatments.Today is day 6 since my first treatment and I get tired faster, and I have some hip pain that I have never had, BUT if the side effects are no worse than this I can make it okay.I understand that the more treatments I receive the more side effect I may get .Your help has encouraged me to stay the course.Annemarie, I am sorry to hear about all the problems that you and your family have had, and I hope things get better for you.Again thanks to everyone that replied to my first question. Jerre -
- February 4, 2013 at 2:34 pm
Hi All, I want to think each of you who replied and sent information about your experience with the Yervoy. It has helped me make up my mine to continue with the treatments.Today is day 6 since my first treatment and I get tired faster, and I have some hip pain that I have never had, BUT if the side effects are no worse than this I can make it okay.I understand that the more treatments I receive the more side effect I may get .Your help has encouraged me to stay the course.Annemarie, I am sorry to hear about all the problems that you and your family have had, and I hope things get better for you.Again thanks to everyone that replied to my first question. Jerre -
- February 4, 2013 at 2:34 pm
Hi All, I want to think each of you who replied and sent information about your experience with the Yervoy. It has helped me make up my mine to continue with the treatments.Today is day 6 since my first treatment and I get tired faster, and I have some hip pain that I have never had, BUT if the side effects are no worse than this I can make it okay.I understand that the more treatments I receive the more side effect I may get .Your help has encouraged me to stay the course.Annemarie, I am sorry to hear about all the problems that you and your family have had, and I hope things get better for you.Again thanks to everyone that replied to my first question. Jerre -
- August 15, 2013 at 11:51 pm
Sarah, I am sorry to learn about your sister and I am glad that you are there to help her. It appears from your profile that your sister lives in England. The British medical system is very different from ours– some drugs are approved there that are not approved here and vice versa. Different clinical trials are available and so on. If you have not yet done so, I suggest that your post your question on the Melanoma Internation Foundation forum because they have a lot of international members, especially from the EU. They will probably know and understand your options better than we do.
Melanoma specialists in the States are moving away from predicting that stage IV paitents will be dead in 3 months or 6 months or whatever. With better imaging techniques and the newer treatments available more patients are living much longer and with a better quality of life than anyone expected. And although we tend not to use the term "cured" (because melanoma could pop up again years later), you are correct that many Stage IV patients here are NED ("no evidence of disease") for many years after their original diagnosis. So the picture is not nearly as bleak as it was 4 or years ago.
Zelboraf works in about 50% of the people who take it. When it works, it works quickly; you can see tumors start to shrink in 2 or 3 weeks. But the melanoma tends to become resistant to Zelboraf in an average of 6-9 months. That means that some people become resistant in 2 or 3 months and others continue to benefit from it for years. Nobody can predict how any particular patient will respond. Another new treatment is a combination of dabrafenib (which is like Zelboraf) and a MEK inhibitor. When taken together, these seem to work better and have fewer side effects than Zelboraf.
The immune-based therapies like ipi (trade name Yervoy) and anti-PD1 (still in clinical trials) take a couple of months to work but when they do, the effect lasts many months or years. When you go to the MIF web site, you can view some very informative webinars about various melanoma treatments, including several webinars about immune based treatments.
I'm sorry that I don't know what treatments are approved by your healthcare system or what clinical trials are being conducted in Europe. I hope you can find that information. But melanoma does not have to be a death sentence any more. More and more people are living longer and longer with the disease. I pray that your sister is one of them.
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- August 15, 2013 at 11:51 pm
Sarah, I am sorry to learn about your sister and I am glad that you are there to help her. It appears from your profile that your sister lives in England. The British medical system is very different from ours– some drugs are approved there that are not approved here and vice versa. Different clinical trials are available and so on. If you have not yet done so, I suggest that your post your question on the Melanoma Internation Foundation forum because they have a lot of international members, especially from the EU. They will probably know and understand your options better than we do.
Melanoma specialists in the States are moving away from predicting that stage IV paitents will be dead in 3 months or 6 months or whatever. With better imaging techniques and the newer treatments available more patients are living much longer and with a better quality of life than anyone expected. And although we tend not to use the term "cured" (because melanoma could pop up again years later), you are correct that many Stage IV patients here are NED ("no evidence of disease") for many years after their original diagnosis. So the picture is not nearly as bleak as it was 4 or years ago.
Zelboraf works in about 50% of the people who take it. When it works, it works quickly; you can see tumors start to shrink in 2 or 3 weeks. But the melanoma tends to become resistant to Zelboraf in an average of 6-9 months. That means that some people become resistant in 2 or 3 months and others continue to benefit from it for years. Nobody can predict how any particular patient will respond. Another new treatment is a combination of dabrafenib (which is like Zelboraf) and a MEK inhibitor. When taken together, these seem to work better and have fewer side effects than Zelboraf.
The immune-based therapies like ipi (trade name Yervoy) and anti-PD1 (still in clinical trials) take a couple of months to work but when they do, the effect lasts many months or years. When you go to the MIF web site, you can view some very informative webinars about various melanoma treatments, including several webinars about immune based treatments.
I'm sorry that I don't know what treatments are approved by your healthcare system or what clinical trials are being conducted in Europe. I hope you can find that information. But melanoma does not have to be a death sentence any more. More and more people are living longer and longer with the disease. I pray that your sister is one of them.
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- August 15, 2013 at 11:51 pm
Sarah, I am sorry to learn about your sister and I am glad that you are there to help her. It appears from your profile that your sister lives in England. The British medical system is very different from ours– some drugs are approved there that are not approved here and vice versa. Different clinical trials are available and so on. If you have not yet done so, I suggest that your post your question on the Melanoma Internation Foundation forum because they have a lot of international members, especially from the EU. They will probably know and understand your options better than we do.
Melanoma specialists in the States are moving away from predicting that stage IV paitents will be dead in 3 months or 6 months or whatever. With better imaging techniques and the newer treatments available more patients are living much longer and with a better quality of life than anyone expected. And although we tend not to use the term "cured" (because melanoma could pop up again years later), you are correct that many Stage IV patients here are NED ("no evidence of disease") for many years after their original diagnosis. So the picture is not nearly as bleak as it was 4 or years ago.
Zelboraf works in about 50% of the people who take it. When it works, it works quickly; you can see tumors start to shrink in 2 or 3 weeks. But the melanoma tends to become resistant to Zelboraf in an average of 6-9 months. That means that some people become resistant in 2 or 3 months and others continue to benefit from it for years. Nobody can predict how any particular patient will respond. Another new treatment is a combination of dabrafenib (which is like Zelboraf) and a MEK inhibitor. When taken together, these seem to work better and have fewer side effects than Zelboraf.
The immune-based therapies like ipi (trade name Yervoy) and anti-PD1 (still in clinical trials) take a couple of months to work but when they do, the effect lasts many months or years. When you go to the MIF web site, you can view some very informative webinars about various melanoma treatments, including several webinars about immune based treatments.
I'm sorry that I don't know what treatments are approved by your healthcare system or what clinical trials are being conducted in Europe. I hope you can find that information. But melanoma does not have to be a death sentence any more. More and more people are living longer and longer with the disease. I pray that your sister is one of them.
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