› Forums › General Melanoma Community › update on scan result
- This topic has 63 replies, 17 voices, and was last updated 9 years, 2 months ago by
Kare83.
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- February 19, 2016 at 1:31 am
Oh, D. Feng, I am so, so, sorry. I know this was not at all what you wanted or deserved to hear. I remember your original lesion was ocular…and that doesn't always respond the way cutaneous melanoma does. Perhaps those on the board dealing with it may have helpful advice. I remain hopeful that your docs will be able to find a winning treatment for you. I will be keeping you and yours in my heart. Hang in there. Celeste
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- February 19, 2016 at 1:47 am
PS….I looked back on Suzanne Lescure's bio. She is an amazing lady who was diagnosed with ocular melanoma in 2003. She did bio-chem with IL-2 in 2006, after developing mel in lungs and lymph nodes and it seems she has been NED ever since. Perhaps she can offer more info. I know IL2 is a risky, harsh, 'old school' treatment in some ways…but hey…when it works there are some pretty durable responses. Some folks also see improvement with chemo, immuno, or radio embolization to liver mets. Perhaps these are some options you could talk with your doc about. Yours, celeste
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- February 19, 2016 at 1:47 am
PS….I looked back on Suzanne Lescure's bio. She is an amazing lady who was diagnosed with ocular melanoma in 2003. She did bio-chem with IL-2 in 2006, after developing mel in lungs and lymph nodes and it seems she has been NED ever since. Perhaps she can offer more info. I know IL2 is a risky, harsh, 'old school' treatment in some ways…but hey…when it works there are some pretty durable responses. Some folks also see improvement with chemo, immuno, or radio embolization to liver mets. Perhaps these are some options you could talk with your doc about. Yours, celeste
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- February 19, 2016 at 1:47 am
PS….I looked back on Suzanne Lescure's bio. She is an amazing lady who was diagnosed with ocular melanoma in 2003. She did bio-chem with IL-2 in 2006, after developing mel in lungs and lymph nodes and it seems she has been NED ever since. Perhaps she can offer more info. I know IL2 is a risky, harsh, 'old school' treatment in some ways…but hey…when it works there are some pretty durable responses. Some folks also see improvement with chemo, immuno, or radio embolization to liver mets. Perhaps these are some options you could talk with your doc about. Yours, celeste
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- February 19, 2016 at 1:31 am
Oh, D. Feng, I am so, so, sorry. I know this was not at all what you wanted or deserved to hear. I remember your original lesion was ocular…and that doesn't always respond the way cutaneous melanoma does. Perhaps those on the board dealing with it may have helpful advice. I remain hopeful that your docs will be able to find a winning treatment for you. I will be keeping you and yours in my heart. Hang in there. Celeste
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- February 19, 2016 at 1:31 am
Oh, D. Feng, I am so, so, sorry. I know this was not at all what you wanted or deserved to hear. I remember your original lesion was ocular…and that doesn't always respond the way cutaneous melanoma does. Perhaps those on the board dealing with it may have helpful advice. I remain hopeful that your docs will be able to find a winning treatment for you. I will be keeping you and yours in my heart. Hang in there. Celeste
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- February 19, 2016 at 5:14 am
I am truly sorry to hear this news D. Feng.
I can't remember if you ever considered TIL. I know it is a tough treatment, and you have to have a certain level of health to undergo it. Did you ever discuss it with your doctor?
Wishing the best for you – Paul
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- February 19, 2016 at 5:14 am
I am truly sorry to hear this news D. Feng.
I can't remember if you ever considered TIL. I know it is a tough treatment, and you have to have a certain level of health to undergo it. Did you ever discuss it with your doctor?
Wishing the best for you – Paul
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- February 19, 2016 at 5:14 am
I am truly sorry to hear this news D. Feng.
I can't remember if you ever considered TIL. I know it is a tough treatment, and you have to have a certain level of health to undergo it. Did you ever discuss it with your doctor?
Wishing the best for you – Paul
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- February 19, 2016 at 11:59 am
Sorry to hear. I'll take a shot in the dark. Having been to MSK and MDA, I believe your trial required HLA testing. The same HLA type for your trial (which I assume you have) is required for a trial being run by Dr. Yee at MDA. (I did not have the "right" HLA type for either trial.). The trial combines ipi with a TIL-like procedure, but it is not as intensive as TIL. You can likely find the trial on MDA's website. Again the investigator is Cassian Yee.
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- February 19, 2016 at 11:59 am
Sorry to hear. I'll take a shot in the dark. Having been to MSK and MDA, I believe your trial required HLA testing. The same HLA type for your trial (which I assume you have) is required for a trial being run by Dr. Yee at MDA. (I did not have the "right" HLA type for either trial.). The trial combines ipi with a TIL-like procedure, but it is not as intensive as TIL. You can likely find the trial on MDA's website. Again the investigator is Cassian Yee.
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- February 19, 2016 at 11:59 am
Sorry to hear. I'll take a shot in the dark. Having been to MSK and MDA, I believe your trial required HLA testing. The same HLA type for your trial (which I assume you have) is required for a trial being run by Dr. Yee at MDA. (I did not have the "right" HLA type for either trial.). The trial combines ipi with a TIL-like procedure, but it is not as intensive as TIL. You can likely find the trial on MDA's website. Again the investigator is Cassian Yee.
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- February 19, 2016 at 1:57 pm
So sorry Dfeng, you keep pushing and pushing, some of the guys have mentioned some other treatments that would be worth looking in too. It's draining when you are not responding to treatment and not sure of what step to take next, but right every thing down regarding treatments that you have not had and speak to your docs regarding possibility of treatments.we are all here for you lots with more knowledge on treatments and experience . It's all new too me dealing with this but would not know what to do with out you guys.
Remember keep pushing
scooby❤️
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- February 19, 2016 at 1:57 pm
So sorry Dfeng, you keep pushing and pushing, some of the guys have mentioned some other treatments that would be worth looking in too. It's draining when you are not responding to treatment and not sure of what step to take next, but right every thing down regarding treatments that you have not had and speak to your docs regarding possibility of treatments.we are all here for you lots with more knowledge on treatments and experience . It's all new too me dealing with this but would not know what to do with out you guys.
Remember keep pushing
scooby❤️
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- February 19, 2016 at 1:57 pm
So sorry Dfeng, you keep pushing and pushing, some of the guys have mentioned some other treatments that would be worth looking in too. It's draining when you are not responding to treatment and not sure of what step to take next, but right every thing down regarding treatments that you have not had and speak to your docs regarding possibility of treatments.we are all here for you lots with more knowledge on treatments and experience . It's all new too me dealing with this but would not know what to do with out you guys.
Remember keep pushing
scooby❤️
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- February 19, 2016 at 2:03 pm
Hi D.Feng, I am wondering what drug trial are you on? The reason I ask is that you said in one of your earlier post that you were starting DC3 or something like that. I know with some of the new Immunotherapy drugs that pseudoprogression does occur where there is no early signs of tumor shrinkage but the patient feels good and when left on the drug they eventually develop tumor shrinkage and durable responses. I hope this is what is happening for you. Best Wishes!!! Ed
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- February 19, 2016 at 2:03 pm
Hi D.Feng, I am wondering what drug trial are you on? The reason I ask is that you said in one of your earlier post that you were starting DC3 or something like that. I know with some of the new Immunotherapy drugs that pseudoprogression does occur where there is no early signs of tumor shrinkage but the patient feels good and when left on the drug they eventually develop tumor shrinkage and durable responses. I hope this is what is happening for you. Best Wishes!!! Ed
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- February 20, 2016 at 11:44 pm
Thats interesting Ed.
I have had a lot of progression on Keytruda yet i always feel good after the infusion.
I wonder if i may be a late responder.
Anyway i am going on the combo shortly so we will see what happens then.
My only side effects were a bit of gastro but not real bad just constipation and gas.
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- February 20, 2016 at 11:44 pm
Thats interesting Ed.
I have had a lot of progression on Keytruda yet i always feel good after the infusion.
I wonder if i may be a late responder.
Anyway i am going on the combo shortly so we will see what happens then.
My only side effects were a bit of gastro but not real bad just constipation and gas.
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- February 20, 2016 at 11:44 pm
Thats interesting Ed.
I have had a lot of progression on Keytruda yet i always feel good after the infusion.
I wonder if i may be a late responder.
Anyway i am going on the combo shortly so we will see what happens then.
My only side effects were a bit of gastro but not real bad just constipation and gas.
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- February 19, 2016 at 2:03 pm
Hi D.Feng, I am wondering what drug trial are you on? The reason I ask is that you said in one of your earlier post that you were starting DC3 or something like that. I know with some of the new Immunotherapy drugs that pseudoprogression does occur where there is no early signs of tumor shrinkage but the patient feels good and when left on the drug they eventually develop tumor shrinkage and durable responses. I hope this is what is happening for you. Best Wishes!!! Ed
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- February 19, 2016 at 2:34 pm
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- February 19, 2016 at 2:34 pm
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- February 19, 2016 at 2:34 pm
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- February 19, 2016 at 2:46 pm
Damn…whats it take for a guy to catch a break? Here is a link to trial at NIHhttps://clinicaltrials.gov/ct2/show/NCT01814046?term=melanoma&recr=Recruiting&cond=ocular&rank=2
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- February 19, 2016 at 2:46 pm
Damn…whats it take for a guy to catch a break? Here is a link to trial at NIHhttps://clinicaltrials.gov/ct2/show/NCT01814046?term=melanoma&recr=Recruiting&cond=ocular&rank=2
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- February 19, 2016 at 2:46 pm
Damn…whats it take for a guy to catch a break? Here is a link to trial at NIHhttps://clinicaltrials.gov/ct2/show/NCT01814046?term=melanoma&recr=Recruiting&cond=ocular&rank=2
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- February 19, 2016 at 3:20 pm
D. Feng-
Just wanted to say how sorry i am for your scan results …..I see others have sent somet trial links..I hope something proves to be your "magic bullet".
For now just sending good thoughts and hopes for some improvement,.
keep us posted.
best,
jenny
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- February 19, 2016 at 3:20 pm
D. Feng-
Just wanted to say how sorry i am for your scan results …..I see others have sent somet trial links..I hope something proves to be your "magic bullet".
For now just sending good thoughts and hopes for some improvement,.
keep us posted.
best,
jenny
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- February 19, 2016 at 3:20 pm
D. Feng-
Just wanted to say how sorry i am for your scan results …..I see others have sent somet trial links..I hope something proves to be your "magic bullet".
For now just sending good thoughts and hopes for some improvement,.
keep us posted.
best,
jenny
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- February 20, 2016 at 4:18 am
Don't stop D.Feng………..push, rest………then gather all your strength and supporters, push more. I'll be thinking of you…….
Rita
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- February 20, 2016 at 4:18 am
Don't stop D.Feng………..push, rest………then gather all your strength and supporters, push more. I'll be thinking of you…….
Rita
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- February 20, 2016 at 1:54 pm
I agree with you everyone, but especially Rita and Charles. Take a breath, rest and then check with all the top specialists for options. My husband has been close to your spot, but we kept looking for places that had other options. I truly wish you the best!!! This disease sucks!!!! Also read Gratitude by Oliver Sacks. He had ocular melanoma for 10 years. He lived for another year when he was told he was terminal and had the best attitude and decided to continue to do important work that furthered his legacy. Please take care and know many people care about you.
Maureen
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- February 20, 2016 at 1:54 pm
I agree with you everyone, but especially Rita and Charles. Take a breath, rest and then check with all the top specialists for options. My husband has been close to your spot, but we kept looking for places that had other options. I truly wish you the best!!! This disease sucks!!!! Also read Gratitude by Oliver Sacks. He had ocular melanoma for 10 years. He lived for another year when he was told he was terminal and had the best attitude and decided to continue to do important work that furthered his legacy. Please take care and know many people care about you.
Maureen
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- February 20, 2016 at 1:54 pm
I agree with you everyone, but especially Rita and Charles. Take a breath, rest and then check with all the top specialists for options. My husband has been close to your spot, but we kept looking for places that had other options. I truly wish you the best!!! This disease sucks!!!! Also read Gratitude by Oliver Sacks. He had ocular melanoma for 10 years. He lived for another year when he was told he was terminal and had the best attitude and decided to continue to do important work that furthered his legacy. Please take care and know many people care about you.
Maureen
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- February 20, 2016 at 4:18 am
Don't stop D.Feng………..push, rest………then gather all your strength and supporters, push more. I'll be thinking of you…….
Rita
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- February 20, 2016 at 11:36 pm
You always have options left as long as you are breathing.
If mainstream medicine doesnt have anything why not try some altermative treatments.
Cannabis oil /hyperthermia, vitamins etc Go to a cancer clinic in Mexico or Germany etc. There are also off label drugs that have put stage 4 folks into remission like tagamet cimiditene and metaformin celebrex etc
I would try everything it doesnt really matter at this stage.
Good luck.
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- February 20, 2016 at 11:36 pm
You always have options left as long as you are breathing.
If mainstream medicine doesnt have anything why not try some altermative treatments.
Cannabis oil /hyperthermia, vitamins etc Go to a cancer clinic in Mexico or Germany etc. There are also off label drugs that have put stage 4 folks into remission like tagamet cimiditene and metaformin celebrex etc
I would try everything it doesnt really matter at this stage.
Good luck.
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- February 20, 2016 at 11:36 pm
You always have options left as long as you are breathing.
If mainstream medicine doesnt have anything why not try some altermative treatments.
Cannabis oil /hyperthermia, vitamins etc Go to a cancer clinic in Mexico or Germany etc. There are also off label drugs that have put stage 4 folks into remission like tagamet cimiditene and metaformin celebrex etc
I would try everything it doesnt really matter at this stage.
Good luck.
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- February 21, 2016 at 2:17 pm
Don't give up. I hate melanoma. I hate the decisions. I hate all I now know about it in 18 short months. We all just seemed to have been randomly "picked". You are very supported and loved and lifted by many fighting along side you. Good scans, bad scans, laying in a bed, out living the best possible….all fighting to beat this beast. All here to help carry you on the bad days. You will know what to do next and you will have support in any decision you make! We all know the decisions are HARD!!
With love,
Kerri–momofjake
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- February 21, 2016 at 2:17 pm
Don't give up. I hate melanoma. I hate the decisions. I hate all I now know about it in 18 short months. We all just seemed to have been randomly "picked". You are very supported and loved and lifted by many fighting along side you. Good scans, bad scans, laying in a bed, out living the best possible….all fighting to beat this beast. All here to help carry you on the bad days. You will know what to do next and you will have support in any decision you make! We all know the decisions are HARD!!
With love,
Kerri–momofjake
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- February 21, 2016 at 2:17 pm
Don't give up. I hate melanoma. I hate the decisions. I hate all I now know about it in 18 short months. We all just seemed to have been randomly "picked". You are very supported and loved and lifted by many fighting along side you. Good scans, bad scans, laying in a bed, out living the best possible….all fighting to beat this beast. All here to help carry you on the bad days. You will know what to do next and you will have support in any decision you make! We all know the decisions are HARD!!
With love,
Kerri–momofjake
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- February 23, 2016 at 4:43 am
How are you Dfeng??
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- February 23, 2016 at 4:43 am
How are you Dfeng??
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- February 23, 2016 at 4:43 am
How are you Dfeng??
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- February 29, 2016 at 9:40 pm
Thank you all for kindly and warm help.
I am still waiting for next treatment to be settled, and will update you when some deceision is made.
I am in more pain, that is quite common, and my fluid in belly accumulates very quick, well that is common too, since my tumor burden is heavy.
Energy level dropps faster than I expected, weight is slowly but firmly going down too.
I am still working for 3 days a week. Try to focus on the job helps to distract the pain and keep me energic.
Best wishes to all!
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- February 29, 2016 at 9:40 pm
Thank you all for kindly and warm help.
I am still waiting for next treatment to be settled, and will update you when some deceision is made.
I am in more pain, that is quite common, and my fluid in belly accumulates very quick, well that is common too, since my tumor burden is heavy.
Energy level dropps faster than I expected, weight is slowly but firmly going down too.
I am still working for 3 days a week. Try to focus on the job helps to distract the pain and keep me energic.
Best wishes to all!
-
- February 29, 2016 at 9:40 pm
Thank you all for kindly and warm help.
I am still waiting for next treatment to be settled, and will update you when some deceision is made.
I am in more pain, that is quite common, and my fluid in belly accumulates very quick, well that is common too, since my tumor burden is heavy.
Energy level dropps faster than I expected, weight is slowly but firmly going down too.
I am still working for 3 days a week. Try to focus on the job helps to distract the pain and keep me energic.
Best wishes to all!
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