angry about therapy options

I total agree with how you feel. The oncologists are the same. They push to get you to sign up for "THEIR" clinical trials so that they get the revenue from the pharmaceutical companies. Plus they get their "gold star" for signing people up like guinea pigs.Then they get to go on to report to ASCO which gives the oncologist another gold star.

And when the trial does not work….oh well, we tried!

Depressed & Disgusted…..YERVOY is not doing much for the majority of those on MPIP, except for a few like Jerry  & Donna. What about Val & Sharyn….it is so sad. Such wonderful people.

Everyone was so excited FDA approved Yervoy, well has any medical insurance companies approve the drug  & paying for the drug. So far, everyone who is taking Yervoy is on a trial..

Please tellme I am wrong….anyone have a insurance company paying for them to take YERVOY??? Give me hope

Mad as  Hell along with Boots

I total agree with how you feel. The oncologists are the same. They push to get you to sign up for "THEIR" clinical trials so that they get the revenue from the pharmaceutical companies. Plus they get their "gold star" for signing people up like guinea pigs.Then they get to go on to report to ASCO which gives the oncologist another gold star.

And when the trial does not work….oh well, we tried!

Depressed & Disgusted…..YERVOY is not doing much for the majority of those on MPIP, except for a few like Jerry  & Donna. What about Val & Sharyn….it is so sad. Such wonderful people.

Everyone was so excited FDA approved Yervoy, well has any medical insurance companies approve the drug  & paying for the drug. So far, everyone who is taking Yervoy is on a trial..

Please tellme I am wrong….anyone have a insurance company paying for them to take YERVOY??? Give me hope

Mad as  Hell along with Boots

I hear you, sister.I am starting a radiation tratment  this  June 06 for 5 weeks after local reocurrence-and I have an appointment set up with an  oncologist next day to discuss further treatments.I read horrific, hair-raising thing  on  Interferon and other drugs that seem to have little proven  if any effectiveness.Maybe it is only me, but I am totally and completely anti-chemotherapy.I have had two surgeries and I do not mind  trying  radiation ;nevertheless any chemo sound so toxic/and in case of melanoma they haven't yet found what works individually so it is like shooting in the dark whilst destroying what's left of your immune system and messing it up even more/, I do not see how poisoning people's body at random with toxic often letal chemicals,  and making you so sick  can help you in a long run!I am saying no to Interferon and probably other treatments they are going to offer  at this moment;r if I do sign up it has to be individually designed targeted therapy that has a chance to work for me and  with tolerable side effects!Of course it is a personal decision;some people are ready to go ahead and try anything;just  I am not  one of them and I am Ok with it.

God Bless,

Teodora

I hear you, sister.I am starting a radiation tratment  this  June 06 for 5 weeks after local reocurrence-and I have an appointment set up with an  oncologist next day to discuss further treatments.I read horrific, hair-raising thing  on  Interferon and other drugs that seem to have little proven  if any effectiveness.Maybe it is only me, but I am totally and completely anti-chemotherapy.I have had two surgeries and I do not mind  trying  radiation ;nevertheless any chemo sound so toxic/and in case of melanoma they haven't yet found what works individually so it is like shooting in the dark whilst destroying what's left of your immune system and messing it up even more/, I do not see how poisoning people's body at random with toxic often letal chemicals,  and making you so sick  can help you in a long run!I am saying no to Interferon and probably other treatments they are going to offer  at this moment;r if I do sign up it has to be individually designed targeted therapy that has a chance to work for me and  with tolerable side effects!Of course it is a personal decision;some people are ready to go ahead and try anything;just  I am not  one of them and I am Ok with it.

God Bless,

Teodora

Boy, do I relate.  When I did biochemo in Jan and Feb of this year, it was because the Univesity of Colorado recommended it. I found out they recommend it for everyone and it has only a 14% chance of doing any good. It did nothing for me.

I also agree that the various chemos for melanoma are extremely toxic and wreck havoc on our bodies. I personally have chosen not do anymore chemo unless I am stage 4 or find one that I feel really good about.

Having said all that, some people respond to some chemos. And that is why when faced with a deadly disease like melanoma, some of us choose to take a chance with our remaining health in hopes of extending life. I totally understand that.  Better to have a 20% chance of killing the cancer than dying without a fight.

Of course the research is unfair. Breast cancer is the darling right now. As far as I understand they get the majority of research money. Melanoma is just not sexy, I guess. We don't have bracelets that say "I Love TaTas". 

Someday they wil look back and wonder why we didn't have better treatment for cancer. They will call us uncivilized in our treatments. And they will be right but this is what we have right now. Not much.

Nicki, Stage 3b

Boy, do I relate.  When I did biochemo in Jan and Feb of this year, it was because the Univesity of Colorado recommended it. I found out they recommend it for everyone and it has only a 14% chance of doing any good. It did nothing for me.

I also agree that the various chemos for melanoma are extremely toxic and wreck havoc on our bodies. I personally have chosen not do anymore chemo unless I am stage 4 or find one that I feel really good about.

Having said all that, some people respond to some chemos. And that is why when faced with a deadly disease like melanoma, some of us choose to take a chance with our remaining health in hopes of extending life. I totally understand that.  Better to have a 20% chance of killing the cancer than dying without a fight.

Of course the research is unfair. Breast cancer is the darling right now. As far as I understand they get the majority of research money. Melanoma is just not sexy, I guess. We don't have bracelets that say "I Love TaTas". 

Someday they wil look back and wonder why we didn't have better treatment for cancer. They will call us uncivilized in our treatments. And they will be right but this is what we have right now. Not much.

Nicki, Stage 3b

Hey boots, are you still stage 3?

You don't have to do biochemo. They will make it sound like it is so important but only 14% of people respond favorably.  That means 86% go through an extremely toxic treatment and it does nothing. It may be you stay in Stage 3 forever with no more treatment.

I almost died during biochemo. Almost coded in the hospital room and they brought in the ICU crash cart. I told the doctor, "I don't want to die from melanona, but I SURE don't want to die from treatment."

Hard decisions.

Nicki

Hey boots, are you still stage 3?

You don't have to do biochemo. They will make it sound like it is so important but only 14% of people respond favorably.  That means 86% go through an extremely toxic treatment and it does nothing. It may be you stay in Stage 3 forever with no more treatment.

I almost died during biochemo. Almost coded in the hospital room and they brought in the ICU crash cart. I told the doctor, "I don't want to die from melanona, but I SURE don't want to die from treatment."

Hard decisions.

Nicki

Boots, you have made some good comments here! I have been reading about melanoma since
early 2007, and I really have some idea of how you feel.

There is much that researchers don't know about melanoma compared to other cancers. The
main problem is that although many treatments appear to be effective at first, it tends to
come back. Why this is I am not sure, but one theory is that melanoma stem cells (or
similar cells) are able to resist treatments such as chemo to some degree.

I once heard someone say that "everything is poisonous, but it depends on the quantity".
This is especially true when we are dealing with melanoma drugs. The older ones are very
crude in how they work, as they are cytotoxic and destroy the good and bad cells. I hope
that newer treatments will be a lot better, but there is still a long way to go.

I like your views on egos. I imagine that there are a lot of things going on behind the
scenes.

Are you sure that the lump under my incision site isn't just benign scar tissue, as
Michelle has mentioned?

You might be interested in the topic I have just posted called "most promising
treatments – comments invited".

Take care.

Frank from Australia

Boots, you have made some good comments here! I have been reading about melanoma since
early 2007, and I really have some idea of how you feel.

There is much that researchers don't know about melanoma compared to other cancers. The
main problem is that although many treatments appear to be effective at first, it tends to
come back. Why this is I am not sure, but one theory is that melanoma stem cells (or
similar cells) are able to resist treatments such as chemo to some degree.

I once heard someone say that "everything is poisonous, but it depends on the quantity".
This is especially true when we are dealing with melanoma drugs. The older ones are very
crude in how they work, as they are cytotoxic and destroy the good and bad cells. I hope
that newer treatments will be a lot better, but there is still a long way to go.

I like your views on egos. I imagine that there are a lot of things going on behind the
scenes.

Are you sure that the lump under my incision site isn't just benign scar tissue, as
Michelle has mentioned?

You might be interested in the topic I have just posted called "most promising
treatments – comments invited".

Take care.

Frank from Australia

I share a lot of your anger.  Among the things I found most upsetting was how the doctor we first went to – a melanoma specialist recommended by the NIH, who has appeared in the "100 best doctors" lists, etc., – was atrocious.  He was interested only in getting people in his clinical trials (even if there were better treatment options elsewhere), and would never inform you about other options, but once you were not able to participate in his trials, dumped you.  He, and the whole practice, did not even know about the disqualifying criteria for the trials they themselves ran.  I got Will out of there too late to help him.  He would not go to bat for us at all when we were trying to get Bristol Myers Squibb to let Will use ipi on a compassionate use basis, even though 3 melanoma specialists (including this doctor!) thought it the best choice.

I got almost all my accurate and helpful information from this board, not from the physicians we consulted.   I just wish I'd found this board before the cancer spread to Will's liver.

Not every patient has the resources to access this board and be as pro-active in their treatment – I think about the many diagnosed people out there relying on doctors with questionable information and motives.  It's a frustrating situation.

I share a lot of your anger.  Among the things I found most upsetting was how the doctor we first went to – a melanoma specialist recommended by the NIH, who has appeared in the "100 best doctors" lists, etc., – was atrocious.  He was interested only in getting people in his clinical trials (even if there were better treatment options elsewhere), and would never inform you about other options, but once you were not able to participate in his trials, dumped you.  He, and the whole practice, did not even know about the disqualifying criteria for the trials they themselves ran.  I got Will out of there too late to help him.  He would not go to bat for us at all when we were trying to get Bristol Myers Squibb to let Will use ipi on a compassionate use basis, even though 3 melanoma specialists (including this doctor!) thought it the best choice.

I got almost all my accurate and helpful information from this board, not from the physicians we consulted.   I just wish I'd found this board before the cancer spread to Will's liver.

Not every patient has the resources to access this board and be as pro-active in their treatment – I think about the many diagnosed people out there relying on doctors with questionable information and motives.  It's a frustrating situation.

My son had an oncologist at Children's Hospital in Columbus Ohio…Dr.Kathy- who wouldn't do the trial she agreed to do and was busy trying to make history on my son's rare cancer Desmoplastic Small Round Cell Sarcoma. He died at age 16 …

I decided when I was diagnosed I would be in control and not the doctors, of what treatment I would get. I guess my initial experience was like those you experience. It is my decision and has always been my decision to do the best treatment I think is best for me.

Bismarck ND offered me nothing, Mayo Clinic told me I could do radiation and Temodar in order to shrink back the melanoma…I had to do something because it was cutting off the blood supply to the upper half of my body, squishing my superior vena cava.They told me it wasn't a cure, said it wasn't going to change the prognosis…and it was just palliative care.

 I had to seek out my own treatments- research every drug, weigh out the benefits of radiation and or surgery, find trials that would accept me.  I didn't wait for the physicians to decide what to try next. I was the one who found my clinical trials that I researched and thought gave me the best chance. Mentally and emotionally it is exhausting and continues to be.

Melanoma treatment is one of those things ..it is.just like darts, it is hit or miss…treatment may work for one and not for another.. I was the one that decided  on a trial I found in Seattle and had my T -cells cloned; I was the one who went back to Mayo and requested surgery when the Melanoma became active again and decided if they wouldn't do it, I wanted a referral to a surgeon who would. 

I was the one who decided to go to the NIH and be evaluated. I was the one who went to Tampa and was evaluated. I have choices and I make them.I am happy to say my Dr repeatedly says and actively does treat the whole person and not just the melanoma.

Clinical trials are crap shoots and Melanoma is a disease with little success to cure. New things are coming out all the time. Trials are limited to patients because of the criteria they have to meet. Most trials are funded by the drug companies…those are the limiting factors in my treatment…I don't believe the doctors benefit so much as the drug companies, but if a doctor does have some success with a trial it does bring more trials and dollars their way.

I feel like I am the one in control of my treatment and  I am not feeling bitter. I pray a lot about the decisions I make. I will not trust doctors to make my life decisions for me. I asked a doctor in Bismarck ( visiting from NY) at the very beginning, if it was him, what treatment would he do…he said immunotherapy and not conventional chemo…he was the only doctor in those early days I found genuine. He even printed out a study to show me why he would do the immunotherapy. To date, Dr Mike and Dr Jeffrey Weber are the only doctors I found to respect in the Melanoma world.

My son had an oncologist at Children's Hospital in Columbus Ohio…Dr.Kathy- who wouldn't do the trial she agreed to do and was busy trying to make history on my son's rare cancer Desmoplastic Small Round Cell Sarcoma. He died at age 16 …

I decided when I was diagnosed I would be in control and not the doctors, of what treatment I would get. I guess my initial experience was like those you experience. It is my decision and has always been my decision to do the best treatment I think is best for me.

Bismarck ND offered me nothing, Mayo Clinic told me I could do radiation and Temodar in order to shrink back the melanoma…I had to do something because it was cutting off the blood supply to the upper half of my body, squishing my superior vena cava.They told me it wasn't a cure, said it wasn't going to change the prognosis…and it was just palliative care.

 I had to seek out my own treatments- research every drug, weigh out the benefits of radiation and or surgery, find trials that would accept me.  I didn't wait for the physicians to decide what to try next. I was the one who found my clinical trials that I researched and thought gave me the best chance. Mentally and emotionally it is exhausting and continues to be.

Melanoma treatment is one of those things ..it is.just like darts, it is hit or miss…treatment may work for one and not for another.. I was the one that decided  on a trial I found in Seattle and had my T -cells cloned; I was the one who went back to Mayo and requested surgery when the Melanoma became active again and decided if they wouldn't do it, I wanted a referral to a surgeon who would. 

I was the one who decided to go to the NIH and be evaluated. I was the one who went to Tampa and was evaluated. I have choices and I make them.I am happy to say my Dr repeatedly says and actively does treat the whole person and not just the melanoma.

Clinical trials are crap shoots and Melanoma is a disease with little success to cure. New things are coming out all the time. Trials are limited to patients because of the criteria they have to meet. Most trials are funded by the drug companies…those are the limiting factors in my treatment…I don't believe the doctors benefit so much as the drug companies, but if a doctor does have some success with a trial it does bring more trials and dollars their way.

I feel like I am the one in control of my treatment and  I am not feeling bitter. I pray a lot about the decisions I make. I will not trust doctors to make my life decisions for me. I asked a doctor in Bismarck ( visiting from NY) at the very beginning, if it was him, what treatment would he do…he said immunotherapy and not conventional chemo…he was the only doctor in those early days I found genuine. He even printed out a study to show me why he would do the immunotherapy. To date, Dr Mike and Dr Jeffrey Weber are the only doctors I found to respect in the Melanoma world.

You are not the first to state this frustration, probably won't be the last.  There are tests for the tumor (other than BRAF, etc) but you need active desiese and the catch is it is very labor intensive, which translates into expensive and time consuming.  Growing individual cells , then retraining them to fight.  And oh by the way, our very smart bodies recognize this and find a work around. 

Did you read the article posted here by Dr O'Day.  It pretty much explains many of the options.  So far all my testing has been done on my excised tumor by the Angeles Clinic.  I am not in a trail right now as I am only stage 3a but they have most of the info they need in case there is progression, I will not have to wait for genetic tests etc.  I have been very impressed, by the way, they are the second place I went to.

Mary

Stage 3

You are not the first to state this frustration, probably won't be the last.  There are tests for the tumor (other than BRAF, etc) but you need active desiese and the catch is it is very labor intensive, which translates into expensive and time consuming.  Growing individual cells , then retraining them to fight.  And oh by the way, our very smart bodies recognize this and find a work around. 

Did you read the article posted here by Dr O'Day.  It pretty much explains many of the options.  So far all my testing has been done on my excised tumor by the Angeles Clinic.  I am not in a trail right now as I am only stage 3a but they have most of the info they need in case there is progression, I will not have to wait for genetic tests etc.  I have been very impressed, by the way, they are the second place I went to.

Mary

Stage 3