› Forums › General Melanoma Community › A big day for me!
- This topic has 48 replies, 14 voices, and was last updated 11 years, 3 months ago by
Tina D.
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- June 23, 2013 at 5:07 am
I regret not being active on the board for a while. Good to see you guys still fighting hard.
One year ago today they found 25 tumors in my brain. Lots more around the body. I had just finished IL-2. We did IPI and Temodar. I only got one dose of IPI, due to colitis. It cleared my brain by the 12 week scans.
I regret not being active on the board for a while. Good to see you guys still fighting hard.
One year ago today they found 25 tumors in my brain. Lots more around the body. I had just finished IL-2. We did IPI and Temodar. I only got one dose of IPI, due to colitis. It cleared my brain by the 12 week scans.
My brain is still clean. We found a few new, very small tumors this spring. A couple near my adrenal gland continued to grow (even after we radiated them this January). They started hurting. Pain pills kind of hurting. We found a PD-1 trial I qualified for (Moffitt just started one for those of us with dose-limiting, stage 3 toxicities from IPI). Within days of my first dose I was off my pain pills and could feel a difference in my axilla tumors.
I had my third dose this week. I feel great. I feel so very lucky to still be be here and still be fighting this disease. I am so grateful for the chance to try antiPD-1. My prayer from the beginning was that I would be able to try everything. To not let my kids wonder if something else would have worked. It is always humbling to have a prayer answered.
I hope and pray for the best outcomes for my fellow warriors. This has been a great year for melanoma research, let's see that translate into a good year for us with the disease as well!! Keep up the good fight!
Ali
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- June 23, 2013 at 6:22 am
lOVE IT !!!!!
PRAYING FOR CONTIINUING SUCCESS.
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- June 23, 2013 at 6:22 am
lOVE IT !!!!!
PRAYING FOR CONTIINUING SUCCESS.
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- June 23, 2013 at 6:22 am
lOVE IT !!!!!
PRAYING FOR CONTIINUING SUCCESS.
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- June 23, 2013 at 8:38 am
Excellent news, Ali. Great to hear from you. Wishing you continuted success in your fight.
Brendan
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- June 23, 2013 at 1:21 pm
Ali, So glad to see your post, and that you got an AntiPD1 trial. I know from firsthand experience it’s tricky traveling for treatment when you have kids at home, but every trip is worth it when you have good results, so glad you are off pain meds. Continue the good work and continue to let us know, we are all cheering you on!! God bless, Valerie (Phil’s wife) -
- June 23, 2013 at 1:21 pm
Ali, So glad to see your post, and that you got an AntiPD1 trial. I know from firsthand experience it’s tricky traveling for treatment when you have kids at home, but every trip is worth it when you have good results, so glad you are off pain meds. Continue the good work and continue to let us know, we are all cheering you on!! God bless, Valerie (Phil’s wife) -
- June 23, 2013 at 1:21 pm
Ali, So glad to see your post, and that you got an AntiPD1 trial. I know from firsthand experience it’s tricky traveling for treatment when you have kids at home, but every trip is worth it when you have good results, so glad you are off pain meds. Continue the good work and continue to let us know, we are all cheering you on!! God bless, Valerie (Phil’s wife) -
- June 23, 2013 at 4:44 pm
Ali,
Your story has touched me like you won't believe. I was told last week to prepare for hospice. I have 7 brain mets and several others throughout my body, expecially in my lungs. My goal is to get into an Anti PD 1 trial. I'll be starting Ipi this week. I just finished SRS on 2 of the larger brain mets and will be getting SRS on the remaining 5 in the next few weeks. My specialist did NOT tell me to prepare for hospice, he did say we;re in a race against time due to the growth of the tumors, my regular onc is the one who said to prepare for hospice and there's less than a 10% chance that I will have clear scans in time to get into a trial. Needless to say I was devastated. I posted earlier this week and there are plenty of us that have been where I'm at and have fought, they are still surviving!! Your story is so inspiring to me!
Did the Ipi clear your brain? I've been told that Ipi doesn't break the brain barrier but the cells do. How soon did you see results?
Thanks again for posting, you've given me more hope.
All my best
Denise
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- June 23, 2013 at 4:44 pm
Ali,
Your story has touched me like you won't believe. I was told last week to prepare for hospice. I have 7 brain mets and several others throughout my body, expecially in my lungs. My goal is to get into an Anti PD 1 trial. I'll be starting Ipi this week. I just finished SRS on 2 of the larger brain mets and will be getting SRS on the remaining 5 in the next few weeks. My specialist did NOT tell me to prepare for hospice, he did say we;re in a race against time due to the growth of the tumors, my regular onc is the one who said to prepare for hospice and there's less than a 10% chance that I will have clear scans in time to get into a trial. Needless to say I was devastated. I posted earlier this week and there are plenty of us that have been where I'm at and have fought, they are still surviving!! Your story is so inspiring to me!
Did the Ipi clear your brain? I've been told that Ipi doesn't break the brain barrier but the cells do. How soon did you see results?
Thanks again for posting, you've given me more hope.
All my best
Denise
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- June 23, 2013 at 4:44 pm
Ali,
Your story has touched me like you won't believe. I was told last week to prepare for hospice. I have 7 brain mets and several others throughout my body, expecially in my lungs. My goal is to get into an Anti PD 1 trial. I'll be starting Ipi this week. I just finished SRS on 2 of the larger brain mets and will be getting SRS on the remaining 5 in the next few weeks. My specialist did NOT tell me to prepare for hospice, he did say we;re in a race against time due to the growth of the tumors, my regular onc is the one who said to prepare for hospice and there's less than a 10% chance that I will have clear scans in time to get into a trial. Needless to say I was devastated. I posted earlier this week and there are plenty of us that have been where I'm at and have fought, they are still surviving!! Your story is so inspiring to me!
Did the Ipi clear your brain? I've been told that Ipi doesn't break the brain barrier but the cells do. How soon did you see results?
Thanks again for posting, you've given me more hope.
All my best
Denise
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- June 23, 2013 at 9:53 pm
Ali – that is awesome, congratulations. Which PD1 are you on? I’m on Merck’s – had my third dose this week. I choose to believe its working.Amy
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- June 23, 2013 at 9:53 pm
Ali – that is awesome, congratulations. Which PD1 are you on? I’m on Merck’s – had my third dose this week. I choose to believe its working.Amy
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- June 23, 2013 at 9:53 pm
Ali – that is awesome, congratulations. Which PD1 are you on? I’m on Merck’s – had my third dose this week. I choose to believe its working.Amy
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- June 24, 2013 at 3:36 am
Great news Ali,Yes it is humbling to have prayers answered.It will be a good year for you and so many of us.There are so many more treatments now and more in trial than a few years ago.Beat the Beast. Al
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- June 24, 2013 at 3:36 am
Great news Ali,Yes it is humbling to have prayers answered.It will be a good year for you and so many of us.There are so many more treatments now and more in trial than a few years ago.Beat the Beast. Al
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- June 24, 2013 at 3:36 am
Great news Ali,Yes it is humbling to have prayers answered.It will be a good year for you and so many of us.There are so many more treatments now and more in trial than a few years ago.Beat the Beast. Al
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- June 25, 2013 at 2:43 am
Hi Ali,
So good to see a post from you, I was hoping no news, meant good news and that you are out enjoying life to the fullest. So happy for you that you get another try and this one looks like a good one! Will keep you in my heart for a good outcome and finally and end to this nasty beast! Love your attitude and your humbleness and hoping beyond hope that this is the one that puts melanoma in the grave. Love and blessings of healing and strength be yours.
Swanee
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- June 25, 2013 at 2:43 am
Hi Ali,
So good to see a post from you, I was hoping no news, meant good news and that you are out enjoying life to the fullest. So happy for you that you get another try and this one looks like a good one! Will keep you in my heart for a good outcome and finally and end to this nasty beast! Love your attitude and your humbleness and hoping beyond hope that this is the one that puts melanoma in the grave. Love and blessings of healing and strength be yours.
Swanee
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- June 25, 2013 at 2:43 am
Hi Ali,
So good to see a post from you, I was hoping no news, meant good news and that you are out enjoying life to the fullest. So happy for you that you get another try and this one looks like a good one! Will keep you in my heart for a good outcome and finally and end to this nasty beast! Love your attitude and your humbleness and hoping beyond hope that this is the one that puts melanoma in the grave. Love and blessings of healing and strength be yours.
Swanee
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- June 25, 2013 at 9:25 am
Your post gives me great hope. I have 40+ brain tumours and lots more everywhere else. Had wbr 6 weeks ago and been having ipi but had to stop due to colitis and neuropathy. Really hoping to have some sort of response like you and a timely post has given me a nice boost whilst going through a grim few weeks. Thank you and hope you carry on with positive results!Jenny
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- June 25, 2013 at 9:25 am
Your post gives me great hope. I have 40+ brain tumours and lots more everywhere else. Had wbr 6 weeks ago and been having ipi but had to stop due to colitis and neuropathy. Really hoping to have some sort of response like you and a timely post has given me a nice boost whilst going through a grim few weeks. Thank you and hope you carry on with positive results!Jenny
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- June 25, 2013 at 9:25 am
Your post gives me great hope. I have 40+ brain tumours and lots more everywhere else. Had wbr 6 weeks ago and been having ipi but had to stop due to colitis and neuropathy. Really hoping to have some sort of response like you and a timely post has given me a nice boost whilst going through a grim few weeks. Thank you and hope you carry on with positive results!Jenny
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- June 27, 2013 at 1:45 pm
This is a big day, and super great news. It is amazing to look back and see where you were one year ago. Wow… thanking God along with you for His answer to your prayers! Hope you have had a wonderful celebration, and continue to rejoice each and every day.
Thank you for posting this wonderful report and encouraging news 🙂
Tina
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- June 27, 2013 at 1:45 pm
This is a big day, and super great news. It is amazing to look back and see where you were one year ago. Wow… thanking God along with you for His answer to your prayers! Hope you have had a wonderful celebration, and continue to rejoice each and every day.
Thank you for posting this wonderful report and encouraging news 🙂
Tina
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- June 27, 2013 at 1:45 pm
This is a big day, and super great news. It is amazing to look back and see where you were one year ago. Wow… thanking God along with you for His answer to your prayers! Hope you have had a wonderful celebration, and continue to rejoice each and every day.
Thank you for posting this wonderful report and encouraging news 🙂
Tina
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- June 23, 2013 at 7:30 pm
Denise, I started feeling my subq tumors shrink 5 days after the dose of IPI and Temodar. I don't know for sure which medication it was, or if it was the effects of combining the two together. My dr. suspected it was the IPI, as Temodar doesn't isn't that potent. Although my response was not normal, it is possible. I have read that it doesn't matter where your cancer has spread (the M in your stage), IPI will respond the same. You either respond or you don't, no matter where your tumors are. I'm sure there is more to it than that, but that was a comfort to me. IPI doesn't have to cross the blood brain barrier, your Tcells get up there, and if they are hunting down the melanoma, they will find them there. I'll be praying for you!
Ali
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- June 23, 2013 at 7:30 pm
Denise, I started feeling my subq tumors shrink 5 days after the dose of IPI and Temodar. I don't know for sure which medication it was, or if it was the effects of combining the two together. My dr. suspected it was the IPI, as Temodar doesn't isn't that potent. Although my response was not normal, it is possible. I have read that it doesn't matter where your cancer has spread (the M in your stage), IPI will respond the same. You either respond or you don't, no matter where your tumors are. I'm sure there is more to it than that, but that was a comfort to me. IPI doesn't have to cross the blood brain barrier, your Tcells get up there, and if they are hunting down the melanoma, they will find them there. I'll be praying for you!
Ali
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- June 23, 2013 at 7:30 pm
Denise, I started feeling my subq tumors shrink 5 days after the dose of IPI and Temodar. I don't know for sure which medication it was, or if it was the effects of combining the two together. My dr. suspected it was the IPI, as Temodar doesn't isn't that potent. Although my response was not normal, it is possible. I have read that it doesn't matter where your cancer has spread (the M in your stage), IPI will respond the same. You either respond or you don't, no matter where your tumors are. I'm sure there is more to it than that, but that was a comfort to me. IPI doesn't have to cross the blood brain barrier, your Tcells get up there, and if they are hunting down the melanoma, they will find them there. I'll be praying for you!
Ali
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- June 25, 2013 at 6:38 pm
Jenny,
My fiance is battling brain mets and ones elsewhere. Diagnosed 4-1-13 (not one sign – just boom one day I couldn't wake him and he couldn't walk). He had whole brain radiation for 5 consecutive days beginning 4-3-13. We left the hospital on 4-12 and shortly after he had his first dose of Yervoy. a few days later he fell in the bathroom and hit his head on the tile. So back we went to the hospital and that called for another scan to be sure there was no damage from the fall. It was discovered he had more tumors since 3 weeks before and the ones he had before were growing. Doc said he did not have enough time to wait for Yervoy to work and he is in his 9th week of Zelboraf. Another scan on 6-10 showed no new tumors (yay!) and the ones there were decreased in size except for one and it had an increase in size. We saw an oncology radiologist yesterday and may be a candidate for sterotactic radiosurgery as early as the first of the week. The radiologist said Billy could just now be benefitting from the WBR as well as the Zelboraf.
What is your next treatment option. So sorry you have joined the band of warriors but you will find some wonderful information on this site from the most important sources: those who are fighting.
Best, Linda
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- June 25, 2013 at 6:38 pm
Jenny,
My fiance is battling brain mets and ones elsewhere. Diagnosed 4-1-13 (not one sign – just boom one day I couldn't wake him and he couldn't walk). He had whole brain radiation for 5 consecutive days beginning 4-3-13. We left the hospital on 4-12 and shortly after he had his first dose of Yervoy. a few days later he fell in the bathroom and hit his head on the tile. So back we went to the hospital and that called for another scan to be sure there was no damage from the fall. It was discovered he had more tumors since 3 weeks before and the ones he had before were growing. Doc said he did not have enough time to wait for Yervoy to work and he is in his 9th week of Zelboraf. Another scan on 6-10 showed no new tumors (yay!) and the ones there were decreased in size except for one and it had an increase in size. We saw an oncology radiologist yesterday and may be a candidate for sterotactic radiosurgery as early as the first of the week. The radiologist said Billy could just now be benefitting from the WBR as well as the Zelboraf.
What is your next treatment option. So sorry you have joined the band of warriors but you will find some wonderful information on this site from the most important sources: those who are fighting.
Best, Linda
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- June 25, 2013 at 6:38 pm
Jenny,
My fiance is battling brain mets and ones elsewhere. Diagnosed 4-1-13 (not one sign – just boom one day I couldn't wake him and he couldn't walk). He had whole brain radiation for 5 consecutive days beginning 4-3-13. We left the hospital on 4-12 and shortly after he had his first dose of Yervoy. a few days later he fell in the bathroom and hit his head on the tile. So back we went to the hospital and that called for another scan to be sure there was no damage from the fall. It was discovered he had more tumors since 3 weeks before and the ones he had before were growing. Doc said he did not have enough time to wait for Yervoy to work and he is in his 9th week of Zelboraf. Another scan on 6-10 showed no new tumors (yay!) and the ones there were decreased in size except for one and it had an increase in size. We saw an oncology radiologist yesterday and may be a candidate for sterotactic radiosurgery as early as the first of the week. The radiologist said Billy could just now be benefitting from the WBR as well as the Zelboraf.
What is your next treatment option. So sorry you have joined the band of warriors but you will find some wonderful information on this site from the most important sources: those who are fighting.
Best, Linda
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- June 25, 2013 at 9:18 pm
Unfortunately I was on zelboraf from January to April and it didn’t work. I had gamma knife on 5 lesions just before Christmas and they were going to treat about 10-15 new ones in April before they found so many on the scan.On the plus side, been a great few weeks for milestones for me – my little boy is walking and turned a year old on Friday which is wonderful to see when you think you may not :-). Here’s to a few more milestones for everyone.
My next option would be temodar. I live in the UK and have private cover through a work policy but nothing else would be easily available as yet.
Jenny
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- June 25, 2013 at 9:18 pm
Unfortunately I was on zelboraf from January to April and it didn’t work. I had gamma knife on 5 lesions just before Christmas and they were going to treat about 10-15 new ones in April before they found so many on the scan.On the plus side, been a great few weeks for milestones for me – my little boy is walking and turned a year old on Friday which is wonderful to see when you think you may not :-). Here’s to a few more milestones for everyone.
My next option would be temodar. I live in the UK and have private cover through a work policy but nothing else would be easily available as yet.
Jenny
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- June 25, 2013 at 9:18 pm
Unfortunately I was on zelboraf from January to April and it didn’t work. I had gamma knife on 5 lesions just before Christmas and they were going to treat about 10-15 new ones in April before they found so many on the scan.On the plus side, been a great few weeks for milestones for me – my little boy is walking and turned a year old on Friday which is wonderful to see when you think you may not :-). Here’s to a few more milestones for everyone.
My next option would be temodar. I live in the UK and have private cover through a work policy but nothing else would be easily available as yet.
Jenny
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