Are we aggressive enough in Canada??

Hi Lisa, I believe that I'm still above ground solely because I opted for the most aggressive treatment option offered– biochemotherapy in 2003 after a Stage IIIc diagnosis.  But the rub is that I couldn't possibly have afforded to pay for it out of my own pocket if my private health insuror hadn't agreed to pay (somewhat begrudgingly!).  My advice is to seek out more aggressive treatment in the U.S. if you have the financial resources to do so.  Best wishes.

Rich

http://www.hotelmelanoma.blogspot.com

Hi Lisa, I believe that I'm still above ground solely because I opted for the most aggressive treatment option offered– biochemotherapy in 2003 after a Stage IIIc diagnosis.  But the rub is that I couldn't possibly have afforded to pay for it out of my own pocket if my private health insuror hadn't agreed to pay (somewhat begrudgingly!).  My advice is to seek out more aggressive treatment in the U.S. if you have the financial resources to do so.  Best wishes.

Rich

http://www.hotelmelanoma.blogspot.com

Lisa

 In the past you and I have discussed the similarities in our situation and both having small children .  I am being treated at Moffitt Cancer Center in Tampa and they are one of the best around.  Believe me if they run out of options or cease to be as aggressive as I would like I will be on the first plane to where ever I need to be.  I have already told my husband to be prepared for me to travel even further if necessary.  

I have been told in the past that chemo is less than great to be doing when you have melanoma.   I am rather new at this myself but what I have learned in the last year I consider to be very valuable.  Can I suggest where to move on to next, nope, still learning myself.  There are others here you have soooo much more knowledge that i am sure will chime in and help you.    In the beginning I counted on everything my Drs. told me and have since learned that they are not always the last word.

Coming strictly from a moms perspective, You are here asking this question, so to me it would seem that you feel as if they are not aggressive enough. Believe me I know the sleepless nights you are having, watching your baby sleep, wondering what in the world you are going to do next.  If this is how you feel Lisa FOLLOW your gut.   I believe strongly in intuition and wish I had followed mine more closely, instead of relying on others to lead me, before this happened.

I am really bummed for you that the nodules came back Mel. but it is what it is now and all you can do is fight as hard as you can for your little girl.   Not that things don't suck for your husband, but he is a big boy, and while he may need you, SHE is the one who needs you the most.   Do what you feel deep down is right for YOU.

Hugs and Smiles

Dawn

Lisa

 In the past you and I have discussed the similarities in our situation and both having small children .  I am being treated at Moffitt Cancer Center in Tampa and they are one of the best around.  Believe me if they run out of options or cease to be as aggressive as I would like I will be on the first plane to where ever I need to be.  I have already told my husband to be prepared for me to travel even further if necessary.  

I have been told in the past that chemo is less than great to be doing when you have melanoma.   I am rather new at this myself but what I have learned in the last year I consider to be very valuable.  Can I suggest where to move on to next, nope, still learning myself.  There are others here you have soooo much more knowledge that i am sure will chime in and help you.    In the beginning I counted on everything my Drs. told me and have since learned that they are not always the last word.

Coming strictly from a moms perspective, You are here asking this question, so to me it would seem that you feel as if they are not aggressive enough. Believe me I know the sleepless nights you are having, watching your baby sleep, wondering what in the world you are going to do next.  If this is how you feel Lisa FOLLOW your gut.   I believe strongly in intuition and wish I had followed mine more closely, instead of relying on others to lead me, before this happened.

I am really bummed for you that the nodules came back Mel. but it is what it is now and all you can do is fight as hard as you can for your little girl.   Not that things don't suck for your husband, but he is a big boy, and while he may need you, SHE is the one who needs you the most.   Do what you feel deep down is right for YOU.

Hugs and Smiles

Dawn

Lisa, as the depth of your primary tumour was well over 4 mm I share your concerns about
the treatment that is available to you. In my opinion tumour depth is a good indicator of
how aggressive melanoma tends to be. Here is some info about the measurement of depth:
http://en.wikipedia.org/wiki/Breslow%27s_depth

I think that it would certainly be worth considering obtaining treatment in the US.

Hope this helps

Frank from Australia

Lisa, as the depth of your primary tumour was well over 4 mm I share your concerns about
the treatment that is available to you. In my opinion tumour depth is a good indicator of
how aggressive melanoma tends to be. Here is some info about the measurement of depth:
http://en.wikipedia.org/wiki/Breslow%27s_depth

I think that it would certainly be worth considering obtaining treatment in the US.

Hope this helps

Frank from Australia

Hi Lisa,

Who is your oncologist in Toronto?

I think my hubby and i have a unique perspective on melanoma and Canada.

We are Canadians, my husband was dianosed Stage 3 in Dec 2008. After sugery and interferon there was no evidence of disease so when my hubby was offered a position in New York, we decided to move.

Fast forward 8 months and chest pain takes him to the hospital where they find a huge tumour and several bone mets.

We decided to go home to Toronto to see our oncologist at Princess Margaret.

Dacarbazine is the first line of treatment in Canada, before you can do any other clinical trial or other non first line treatment you have to do 2 infusions of dabcarbazine.

After that didn't work, he went on a P13k/Mek trail ( worked for 6 months), then on the PLX 4032 trail ( worked for 9 weeks), which he just finished now.

We met with our oncologist this week to speak about the next options and we did talk about IL-2, bio chemo and TIL among others…

We decided on IPI ( Yervoy) now, as our oncologist said that based on all the data he's seeing it's the best and most agressive option for right now. He said Il-2 is sometimes given after IPI and shows some promise, but that TIL right now is only right for a small subset of patients and same with bio chemo.

Everybody needs to make their own decisions and have a doctor they trust. We love our onc and trust him completely. We did get a second opinion in the US by a respected melanoma doc and as he concurred with our Toronto doc, it helped us make the decision to go home to Toronto for treatment.

Good Luck.

Emily

Hi Lisa,

Who is your oncologist in Toronto?

I think my hubby and i have a unique perspective on melanoma and Canada.

We are Canadians, my husband was dianosed Stage 3 in Dec 2008. After sugery and interferon there was no evidence of disease so when my hubby was offered a position in New York, we decided to move.

Fast forward 8 months and chest pain takes him to the hospital where they find a huge tumour and several bone mets.

We decided to go home to Toronto to see our oncologist at Princess Margaret.

Dacarbazine is the first line of treatment in Canada, before you can do any other clinical trial or other non first line treatment you have to do 2 infusions of dabcarbazine.

After that didn't work, he went on a P13k/Mek trail ( worked for 6 months), then on the PLX 4032 trail ( worked for 9 weeks), which he just finished now.

We met with our oncologist this week to speak about the next options and we did talk about IL-2, bio chemo and TIL among others…

We decided on IPI ( Yervoy) now, as our oncologist said that based on all the data he's seeing it's the best and most agressive option for right now. He said Il-2 is sometimes given after IPI and shows some promise, but that TIL right now is only right for a small subset of patients and same with bio chemo.

Everybody needs to make their own decisions and have a doctor they trust. We love our onc and trust him completely. We did get a second opinion in the US by a respected melanoma doc and as he concurred with our Toronto doc, it helped us make the decision to go home to Toronto for treatment.

Good Luck.

Emily

Hi Lisa,  having been in the compassionate ipi trial, I do know that you must have had a previously stage IV treatment…both dicarbazine and IL-21 are considered stage IV treatments.  That is why you are being offered those first.  Ipi has been proven to be more successful than most drugs offered to stage IV patients.  Why not try the two-arm trial dicarbazine vs IL-21…if you land on IL-21 that would be good, if you end up with dicarbazine, at least you know that ipi is the next treatment…after a 3-week wait.  A very few have even had success with chemo…don't forget, as Linda reminded me recently, we are all individuals who all respond differently.

As for IL-2 and biochem keep them in mind, do your research and be ready to proceed if ipilimumab fails who knows maybe by then they might come to Canada. Just my thoughts, Val stage IV

Hi Lisa,  having been in the compassionate ipi trial, I do know that you must have had a previously stage IV treatment…both dicarbazine and IL-21 are considered stage IV treatments.  That is why you are being offered those first.  Ipi has been proven to be more successful than most drugs offered to stage IV patients.  Why not try the two-arm trial dicarbazine vs IL-21…if you land on IL-21 that would be good, if you end up with dicarbazine, at least you know that ipi is the next treatment…after a 3-week wait.  A very few have even had success with chemo…don't forget, as Linda reminded me recently, we are all individuals who all respond differently.

As for IL-2 and biochem keep them in mind, do your research and be ready to proceed if ipilimumab fails who knows maybe by then they might come to Canada. Just my thoughts, Val stage IV