Ashykay

Dearest Nahmi,

I am truly sorry to hear about your Dad – he was obviously a fighter. Although they tell you (in one way or another) that the time is near, I don't think anything can prepare you for that moment, or even the moments beforehand when they are unwell.

I'm going on 3 months without my Mum (who passed away in May from melanoma of unknown primary). I think I have been in the "denial" stage for pretty much the entire 3 months, and it's only just starting to hit me now. I can't explain how much I miss her….and now I am really starting to feel that. I hope that I can help you by saying that nothing is normal right now – you just need to do what is best for you, and not to worry about anyone else, or the expectations that people have about your grieving process. Your Dad will be with you every step of the way, and you will probably be surprised as to the strength that you have which will come from your Dad and the life you've had together. 

I'm getting on the melanoma advocacy bandwagon big time here in Australia (well, as best as I can) – I'm from Brisbane. I'm in touch with a fellow "melanoma warrier" called Jay Allen – you may have heard of him (he was on RPA years ago), trying to raise awareness as well as funds into research. I really think that's what has kept me going these past few months.

I wish for your benefit that your fellow family members and friends gather around to support each other as best you can during this difficult time. I hope that you are able to find solace and comfort in time.

Thinking of you.

Dearest Nahmi,

I am truly sorry to hear about your Dad – he was obviously a fighter. Although they tell you (in one way or another) that the time is near, I don't think anything can prepare you for that moment, or even the moments beforehand when they are unwell.

I'm going on 3 months without my Mum (who passed away in May from melanoma of unknown primary). I think I have been in the "denial" stage for pretty much the entire 3 months, and it's only just starting to hit me now. I can't explain how much I miss her….and now I am really starting to feel that. I hope that I can help you by saying that nothing is normal right now – you just need to do what is best for you, and not to worry about anyone else, or the expectations that people have about your grieving process. Your Dad will be with you every step of the way, and you will probably be surprised as to the strength that you have which will come from your Dad and the life you've had together. 

I'm getting on the melanoma advocacy bandwagon big time here in Australia (well, as best as I can) – I'm from Brisbane. I'm in touch with a fellow "melanoma warrier" called Jay Allen – you may have heard of him (he was on RPA years ago), trying to raise awareness as well as funds into research. I really think that's what has kept me going these past few months.

I wish for your benefit that your fellow family members and friends gather around to support each other as best you can during this difficult time. I hope that you are able to find solace and comfort in time.

Thinking of you.

Dearest Nahmi,

I am truly sorry to hear about your Dad – he was obviously a fighter. Although they tell you (in one way or another) that the time is near, I don't think anything can prepare you for that moment, or even the moments beforehand when they are unwell.

I'm going on 3 months without my Mum (who passed away in May from melanoma of unknown primary). I think I have been in the "denial" stage for pretty much the entire 3 months, and it's only just starting to hit me now. I can't explain how much I miss her….and now I am really starting to feel that. I hope that I can help you by saying that nothing is normal right now – you just need to do what is best for you, and not to worry about anyone else, or the expectations that people have about your grieving process. Your Dad will be with you every step of the way, and you will probably be surprised as to the strength that you have which will come from your Dad and the life you've had together. 

I'm getting on the melanoma advocacy bandwagon big time here in Australia (well, as best as I can) – I'm from Brisbane. I'm in touch with a fellow "melanoma warrier" called Jay Allen – you may have heard of him (he was on RPA years ago), trying to raise awareness as well as funds into research. I really think that's what has kept me going these past few months.

I wish for your benefit that your fellow family members and friends gather around to support each other as best you can during this difficult time. I hope that you are able to find solace and comfort in time.

Thinking of you.

Hi there

My Mum is on Yervoy, and after a few transfusions she started complaining of numbness in her left foot. This was scary as mum has melanoma on her sacrum which has led to pain/loss of feeling in her right leg similar to a paraplegic. However, when I looked ups some of the side effects of Yervoy, numbness is common.

I hope that she does regain some feeling in her left leg – everyone’s tips here are encouraging – thanks all.

Ashley

Hi there

My Mum is on Yervoy, and after a few transfusions she started complaining of numbness in her left foot. This was scary as mum has melanoma on her sacrum which has led to pain/loss of feeling in her right leg similar to a paraplegic. However, when I looked ups some of the side effects of Yervoy, numbness is common.

I hope that she does regain some feeling in her left leg – everyone’s tips here are encouraging – thanks all.

Ashley

Hi there

My Mum is on Yervoy, and after a few transfusions she started complaining of numbness in her left foot. This was scary as mum has melanoma on her sacrum which has led to pain/loss of feeling in her right leg similar to a paraplegic. However, when I looked ups some of the side effects of Yervoy, numbness is common.

I hope that she does regain some feeling in her left leg – everyone’s tips here are encouraging – thanks all.

Ashley

Hi there!

My Mum is about to start Yervoy and I have the same concerns. The immunologist was very blatent to Mum when she asked about side effects – he gave her a brochure containing all the details of the drug including any minor and major complications and side effects. He also said that those who had serious complications as a result of the side effects were those who felt someone was wrong and "sat on it", and didn't inform their doctors abotu it immediately. He said that Mum needs to speak to him as SOON as she feels something is different as a result of the drug.

I completely agree that there are many side effects with all types of drugs..but Yervoy being so important to a lot of people, I think all you can do is go for it and manage the side effects smartly by informing your doctor as soon as you suspect something isn't quite right.

All the best – please keep in touch with your progress!

Ashley

Hi there!

My Mum is about to start Yervoy and I have the same concerns. The immunologist was very blatent to Mum when she asked about side effects – he gave her a brochure containing all the details of the drug including any minor and major complications and side effects. He also said that those who had serious complications as a result of the side effects were those who felt someone was wrong and "sat on it", and didn't inform their doctors abotu it immediately. He said that Mum needs to speak to him as SOON as she feels something is different as a result of the drug.

I completely agree that there are many side effects with all types of drugs..but Yervoy being so important to a lot of people, I think all you can do is go for it and manage the side effects smartly by informing your doctor as soon as you suspect something isn't quite right.

All the best – please keep in touch with your progress!

Ashley

Ditto Lisa!! My mum is about to start Yervoy & I’m feeling apprehensive after reading some non-responders…

Ditto Lisa!! My mum is about to start Yervoy & I’m feeling apprehensive after reading some non-responders…

Hi Graeme,

I've just come across your post on the forum. I'm from Brisbane in Australia and supported my 52 year old Mum through her melanoma battle (melanoma of unknown primary), which she unfortunately lost earlier this year.

I would strongly suggest you look into getting into the Yervoy patient access program as you have noted. I liaised with BMS abotu Yervoy quite a bit, as my Mum had been on a clinical trial with Yervoy + vaccine with her immunologist here in Brisbane. I was quite surprised, and found BMS to be as helpful as they possibly could be. I believe if you're in Melbourne, there should be immunologists/melanoma specialists at Peter Mac or can guide you from there.

I also spoke to a few Professors at Dana-Faber in the US about potential treatment options (noting, however, that in my Mum's case, her melanoma was very rare and also was negative to many genetic mutations found in melanoma with identifiable primary sites) – it might be worth getting in touch with them. Let me know if you'd like me to try to dig up some details for you.

Part of what is keeping me going is some advocacy work I'd like to undertake in the very near future, to push the Australian Govenrment to get Yervoy and what I believe to be IL-2 on the PBS so that people in your family's situation have subsidised access to these incredibly important drugs. Yervoy has now been rejected on the PBS twice which is a joke. Had my Mum survived, our family would have been looking at costs of $150,000 + to keep her going on Yervoy (as she had tumour growth). I truly don't believe the Australian Government is doing enough to assist people affected by melanoma.

My thoughts are with you and your family, and if there is anything I can do to assist or if you'd like to get in touch with me, I'd be more than happy to assist in whatever way I can.

Cheers,

Ashley

Hi Graeme,

I've just come across your post on the forum. I'm from Brisbane in Australia and supported my 52 year old Mum through her melanoma battle (melanoma of unknown primary), which she unfortunately lost earlier this year.

I would strongly suggest you look into getting into the Yervoy patient access program as you have noted. I liaised with BMS abotu Yervoy quite a bit, as my Mum had been on a clinical trial with Yervoy + vaccine with her immunologist here in Brisbane. I was quite surprised, and found BMS to be as helpful as they possibly could be. I believe if you're in Melbourne, there should be immunologists/melanoma specialists at Peter Mac or can guide you from there.

I also spoke to a few Professors at Dana-Faber in the US about potential treatment options (noting, however, that in my Mum's case, her melanoma was very rare and also was negative to many genetic mutations found in melanoma with identifiable primary sites) – it might be worth getting in touch with them. Let me know if you'd like me to try to dig up some details for you.

Part of what is keeping me going is some advocacy work I'd like to undertake in the very near future, to push the Australian Govenrment to get Yervoy and what I believe to be IL-2 on the PBS so that people in your family's situation have subsidised access to these incredibly important drugs. Yervoy has now been rejected on the PBS twice which is a joke. Had my Mum survived, our family would have been looking at costs of $150,000 + to keep her going on Yervoy (as she had tumour growth). I truly don't believe the Australian Government is doing enough to assist people affected by melanoma.

My thoughts are with you and your family, and if there is anything I can do to assist or if you'd like to get in touch with me, I'd be more than happy to assist in whatever way I can.

Cheers,

Ashley

Hi Graeme,

I've just come across your post on the forum. I'm from Brisbane in Australia and supported my 52 year old Mum through her melanoma battle (melanoma of unknown primary), which she unfortunately lost earlier this year.

I would strongly suggest you look into getting into the Yervoy patient access program as you have noted. I liaised with BMS abotu Yervoy quite a bit, as my Mum had been on a clinical trial with Yervoy + vaccine with her immunologist here in Brisbane. I was quite surprised, and found BMS to be as helpful as they possibly could be. I believe if you're in Melbourne, there should be immunologists/melanoma specialists at Peter Mac or can guide you from there.

I also spoke to a few Professors at Dana-Faber in the US about potential treatment options (noting, however, that in my Mum's case, her melanoma was very rare and also was negative to many genetic mutations found in melanoma with identifiable primary sites) – it might be worth getting in touch with them. Let me know if you'd like me to try to dig up some details for you.

Part of what is keeping me going is some advocacy work I'd like to undertake in the very near future, to push the Australian Govenrment to get Yervoy and what I believe to be IL-2 on the PBS so that people in your family's situation have subsidised access to these incredibly important drugs. Yervoy has now been rejected on the PBS twice which is a joke. Had my Mum survived, our family would have been looking at costs of $150,000 + to keep her going on Yervoy (as she had tumour growth). I truly don't believe the Australian Government is doing enough to assist people affected by melanoma.

My thoughts are with you and your family, and if there is anything I can do to assist or if you'd like to get in touch with me, I'd be more than happy to assist in whatever way I can.

Cheers,

Ashley

Might be a little harsh! My mum is also going thru the same experience & I wouldn’t profess or proclaim for it to be “my” illness. That goes without saying that being my own flesh and blood…mine & my family’s experience and feelings at this time are not to be laughed at, mocked or judged by others. This is a difficult time for all and I personally feel that, although new to this blog, we should try to support & inform each other as best we can without judgement.

Might be a little harsh! My mum is also going thru the same experience & I wouldn’t profess or proclaim for it to be “my” illness. That goes without saying that being my own flesh and blood…mine & my family’s experience and feelings at this time are not to be laughed at, mocked or judged by others. This is a difficult time for all and I personally feel that, although new to this blog, we should try to support & inform each other as best we can without judgement.