› Forums › Caregiver Community › Dr. Hamid
- This topic has 48 replies, 15 voices, and was last updated 7 years, 2 months ago by tschmith.
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- January 17, 2017 at 4:24 am
What I visit I had today. I spent the afternoon at the Angeles Clinic in Santa Monica. It's a small place, but all they do is melanoma I think. I got the impression that people were flying in there from all over the country. I had a nice conversation with a man from Hawai'i and a woman who had flown in from somewhere else who was the caregivery of yet someone else. Busy, busy place.
I am quite a sight at this point, with maybe 50 sub-q's on my noggin, and some bigger, painful ones on the back of my neck, sides, armpits, etc. He found them all very quickly. Ouch! As he took my history he kept shaking his head at all the negative responses as I answered his questions. I asked him if he was busy with people like me flying in from all over, and he expressed frustration that he kept having to clean up other oncologist's messages.
At one point he actually said "we need to get you f*cking started!", and "I want to treat this aggresively". This was all music to my ears.
He wants to start me with a trial NCT00412828, but first needs to address this brain met. Once my brain is stable we can proceed. I have a brain MRI on Wednesday and go back for a follow up on Thursday. Treatment may begin right away depending on my noggin.
The treatment combine glembatumamab vedotin with Varlilumab. Neither of these involves the CTL4-A or PD-1 pathways which makespecially me happy. He also wants map my tumors for all the mutations, a very popular topic on this forum. He doesn't want to do any interlesional therapy is it would delay my trial.
This feels so much better than the "wait and see attitude" that the SCCA has been giving me.
I met Jen (snow white) and her mom and we had a nice chat. It's so cool to meet people from this board in person – we have so much in common.
Josh, there are several trials here for people with heavily pretreated tumors – right up our allies.
For the first time I feel like there is some real hope. I certainly like Dr. Hamid's attitude. I feel like this has been well worth the drive from Seattle.
– Paul
P.S. Please forgive the typos, I am breaking in a new Android tablet.
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- January 17, 2017 at 4:51 am
Paul- I was completely stoked that I got to give you a good squeeze today! I kept looking for you and even asked, but they said you had already left. When the Doc. told us she wanted to do a full body check on Dad, Mom and I excused ourselves and went to the restroom, then sat in the waiting room. I was sitting there looking around and saw this lovely young lady carrying a large plastic bin. I knew right then and there that I had found Paul and his Daughter! Yay!!! I am so so happy that you had a positive experience with Dr. Hamid and that he is taking the bull by the horns and getting you started ASAP. I will be looking for your updates. Hang in there!!!!!!!
xo Jen
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- January 17, 2017 at 4:51 am
Paul- I was completely stoked that I got to give you a good squeeze today! I kept looking for you and even asked, but they said you had already left. When the Doc. told us she wanted to do a full body check on Dad, Mom and I excused ourselves and went to the restroom, then sat in the waiting room. I was sitting there looking around and saw this lovely young lady carrying a large plastic bin. I knew right then and there that I had found Paul and his Daughter! Yay!!! I am so so happy that you had a positive experience with Dr. Hamid and that he is taking the bull by the horns and getting you started ASAP. I will be looking for your updates. Hang in there!!!!!!!
xo Jen
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- January 17, 2017 at 4:51 am
Paul- I was completely stoked that I got to give you a good squeeze today! I kept looking for you and even asked, but they said you had already left. When the Doc. told us she wanted to do a full body check on Dad, Mom and I excused ourselves and went to the restroom, then sat in the waiting room. I was sitting there looking around and saw this lovely young lady carrying a large plastic bin. I knew right then and there that I had found Paul and his Daughter! Yay!!! I am so so happy that you had a positive experience with Dr. Hamid and that he is taking the bull by the horns and getting you started ASAP. I will be looking for your updates. Hang in there!!!!!!!
xo Jen
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- January 17, 2017 at 4:51 am
Wow Paul,
you were due for some great news and you got it! I'm sooo happy for you….
I imagine just beeing checked out by such an expert feels comforting and brings hope… And most of all, he found a drug combo no other doctor mentioned to you, right?
I, like you, had a really positive feeling about this trip and continue to have it!
You got this Paul!!!!
Lots of love and hugs from Slovenia!
Patrisa
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- January 17, 2017 at 4:51 am
Wow Paul,
you were due for some great news and you got it! I'm sooo happy for you….
I imagine just beeing checked out by such an expert feels comforting and brings hope… And most of all, he found a drug combo no other doctor mentioned to you, right?
I, like you, had a really positive feeling about this trip and continue to have it!
You got this Paul!!!!
Lots of love and hugs from Slovenia!
Patrisa
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- January 17, 2017 at 4:51 am
Wow Paul,
you were due for some great news and you got it! I'm sooo happy for you….
I imagine just beeing checked out by such an expert feels comforting and brings hope… And most of all, he found a drug combo no other doctor mentioned to you, right?
I, like you, had a really positive feeling about this trip and continue to have it!
You got this Paul!!!!
Lots of love and hugs from Slovenia!
Patrisa
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- January 17, 2017 at 5:16 am
Heck yeah Paul! I am so glad you had a good visit and will be moving forward with some serious melanoma butt kicking!
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- January 17, 2017 at 5:16 am
Heck yeah Paul! I am so glad you had a good visit and will be moving forward with some serious melanoma butt kicking!
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- January 17, 2017 at 5:16 am
Heck yeah Paul! I am so glad you had a good visit and will be moving forward with some serious melanoma butt kicking!
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- January 17, 2017 at 7:53 am
Hi Paul,
Gald you had a great meeting and you've got a plan.
If you are thinking of having the brain met treated in California go see Dr. Eric Chang over at USC. His office isn't far from the Angelos Clinic and he is one of the most experienced radiation oncologists you can find.
I mention this, because my Mom had a radiation oncologist in Beverly Hills leave a brain met untreated the day of gamma knife surgery. You don't want to go through what we did. The guy keep thinking it was a blood vessel and it was a tumor. We were really lucky we got a second opinion after we were told that my Mom had another tumor and we should just watch it… Dr. Change treated 17 the next week. Talk about scary.
My Mom has had just terrific care and really likes Dr. Change and her neruo-oncologist Dr. Wagle.
Good luck and keep us posted.
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- January 17, 2017 at 7:53 am
Hi Paul,
Gald you had a great meeting and you've got a plan.
If you are thinking of having the brain met treated in California go see Dr. Eric Chang over at USC. His office isn't far from the Angelos Clinic and he is one of the most experienced radiation oncologists you can find.
I mention this, because my Mom had a radiation oncologist in Beverly Hills leave a brain met untreated the day of gamma knife surgery. You don't want to go through what we did. The guy keep thinking it was a blood vessel and it was a tumor. We were really lucky we got a second opinion after we were told that my Mom had another tumor and we should just watch it… Dr. Change treated 17 the next week. Talk about scary.
My Mom has had just terrific care and really likes Dr. Change and her neruo-oncologist Dr. Wagle.
Good luck and keep us posted.
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- January 17, 2017 at 7:53 am
Hi Paul,
Gald you had a great meeting and you've got a plan.
If you are thinking of having the brain met treated in California go see Dr. Eric Chang over at USC. His office isn't far from the Angelos Clinic and he is one of the most experienced radiation oncologists you can find.
I mention this, because my Mom had a radiation oncologist in Beverly Hills leave a brain met untreated the day of gamma knife surgery. You don't want to go through what we did. The guy keep thinking it was a blood vessel and it was a tumor. We were really lucky we got a second opinion after we were told that my Mom had another tumor and we should just watch it… Dr. Change treated 17 the next week. Talk about scary.
My Mom has had just terrific care and really likes Dr. Change and her neruo-oncologist Dr. Wagle.
Good luck and keep us posted.
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- January 17, 2017 at 3:32 pm
I'm going to second this opinion regarding Dr. Chang. I have a friend in Pasadena (I met him when we were both going in for gamma) who was referred to Angeles Clinic for systemic treatment….. this was a few years ago, when they had a trial that USC didn't have going….. Anyway, he still remains with Dr. Chang at USC to keep watch over his brain, because the man is brilliant, incredibly diligent, and supremely professional. His bio speaks volumes about his intelligence… and if you ask any of his patients, we'll all tell you how amazing his care and concern go above and beyond!
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- January 17, 2017 at 3:32 pm
I'm going to second this opinion regarding Dr. Chang. I have a friend in Pasadena (I met him when we were both going in for gamma) who was referred to Angeles Clinic for systemic treatment….. this was a few years ago, when they had a trial that USC didn't have going….. Anyway, he still remains with Dr. Chang at USC to keep watch over his brain, because the man is brilliant, incredibly diligent, and supremely professional. His bio speaks volumes about his intelligence… and if you ask any of his patients, we'll all tell you how amazing his care and concern go above and beyond!
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- January 17, 2017 at 3:32 pm
I'm going to second this opinion regarding Dr. Chang. I have a friend in Pasadena (I met him when we were both going in for gamma) who was referred to Angeles Clinic for systemic treatment….. this was a few years ago, when they had a trial that USC didn't have going….. Anyway, he still remains with Dr. Chang at USC to keep watch over his brain, because the man is brilliant, incredibly diligent, and supremely professional. His bio speaks volumes about his intelligence… and if you ask any of his patients, we'll all tell you how amazing his care and concern go above and beyond!
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- January 17, 2017 at 9:41 am
Awesome, Paul!! A plan indeed!
So great that you have got some hope again!
hoping you can get on the trial quickly. Will you have to stay down in Santa Monica? What are your plans for that?
Do you know if having LMD excludes from these trials for those with extensively pre-treated tumours? I presume that LMD treatment would need to have some success first to be able to try another immunotherapy systemic treatment? I know not your dilemma but wondered thoughts on that.
Very excited for you!
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- January 17, 2017 at 9:41 am
Awesome, Paul!! A plan indeed!
So great that you have got some hope again!
hoping you can get on the trial quickly. Will you have to stay down in Santa Monica? What are your plans for that?
Do you know if having LMD excludes from these trials for those with extensively pre-treated tumours? I presume that LMD treatment would need to have some success first to be able to try another immunotherapy systemic treatment? I know not your dilemma but wondered thoughts on that.
Very excited for you!
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- January 17, 2017 at 9:41 am
Awesome, Paul!! A plan indeed!
So great that you have got some hope again!
hoping you can get on the trial quickly. Will you have to stay down in Santa Monica? What are your plans for that?
Do you know if having LMD excludes from these trials for those with extensively pre-treated tumours? I presume that LMD treatment would need to have some success first to be able to try another immunotherapy systemic treatment? I know not your dilemma but wondered thoughts on that.
Very excited for you!
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- January 17, 2017 at 12:36 pm
Hey Paul,
I just got so excited reading this, I could feel the energy coming straight out of your post! Feels like this is the 180 degree turn that you need! I like Drs that also have some passion, and i've been watching the videos that Ed posts of Dr. Hamid's talks, really cool. I'm so glad you guys are on the attack now, hoping for nothing but the best for you Paul. It's pretty cool too when you get to meet others from this board, definitely feels like family at times. And good job to your daughter, for being so good to her dad and carrying the large plastic bin.
Cheers,
Jackie
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- January 17, 2017 at 12:36 pm
Hey Paul,
I just got so excited reading this, I could feel the energy coming straight out of your post! Feels like this is the 180 degree turn that you need! I like Drs that also have some passion, and i've been watching the videos that Ed posts of Dr. Hamid's talks, really cool. I'm so glad you guys are on the attack now, hoping for nothing but the best for you Paul. It's pretty cool too when you get to meet others from this board, definitely feels like family at times. And good job to your daughter, for being so good to her dad and carrying the large plastic bin.
Cheers,
Jackie
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- January 17, 2017 at 12:36 pm
Hey Paul,
I just got so excited reading this, I could feel the energy coming straight out of your post! Feels like this is the 180 degree turn that you need! I like Drs that also have some passion, and i've been watching the videos that Ed posts of Dr. Hamid's talks, really cool. I'm so glad you guys are on the attack now, hoping for nothing but the best for you Paul. It's pretty cool too when you get to meet others from this board, definitely feels like family at times. And good job to your daughter, for being so good to her dad and carrying the large plastic bin.
Cheers,
Jackie
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- January 17, 2017 at 2:25 pm
Hi Paul,
Great news that Dr Hamid has treatment to offer you and that you feel comfortable taking his advice.
Tried looking up your trial number- but drew a blank as clinical trials .gov directed me to a completed trial. If any one else is curious about inclusion / exclusion criteria and locations I thinkthis is probably the one https://clinicaltrials.gov/ct2/show/NCT02302339?term=glembatumumab+vedotin+Varlilumab&rank=1
Glad you bumped into Jen and her family..
Hope you manage to clear the hurdles and get on treatment asap. and that it turns a corner for you.
Go Paul Go….
Best wishes
Deb
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- January 17, 2017 at 2:25 pm
Hi Paul,
Great news that Dr Hamid has treatment to offer you and that you feel comfortable taking his advice.
Tried looking up your trial number- but drew a blank as clinical trials .gov directed me to a completed trial. If any one else is curious about inclusion / exclusion criteria and locations I thinkthis is probably the one https://clinicaltrials.gov/ct2/show/NCT02302339?term=glembatumumab+vedotin+Varlilumab&rank=1
Glad you bumped into Jen and her family..
Hope you manage to clear the hurdles and get on treatment asap. and that it turns a corner for you.
Go Paul Go….
Best wishes
Deb
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- January 17, 2017 at 2:25 pm
Hi Paul,
Great news that Dr Hamid has treatment to offer you and that you feel comfortable taking his advice.
Tried looking up your trial number- but drew a blank as clinical trials .gov directed me to a completed trial. If any one else is curious about inclusion / exclusion criteria and locations I thinkthis is probably the one https://clinicaltrials.gov/ct2/show/NCT02302339?term=glembatumumab+vedotin+Varlilumab&rank=1
Glad you bumped into Jen and her family..
Hope you manage to clear the hurdles and get on treatment asap. and that it turns a corner for you.
Go Paul Go….
Best wishes
Deb
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- January 17, 2017 at 2:49 pm
Great news Paul!!! Big plastic bin = melanoma warrior!!!! I have a couple of link to Celldex the company that makes the drugs. The first link is to press releases and if you go to the Oct 9, 2016 date there is an article about phase two study of one of Glematumamab and later in the press release it talks about combining Varlilumab with Glembatumamab vedotin.http://www.celldex.com/pipeline/cdx-1127.php the second link is to celldex and it talks about Glembatumamab vedotin monotherapy data in ESMO 2016 poster from Oct.http://www.celldex.com/science/publications.php#cdx011 Best wishes!!!Ed
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- January 17, 2017 at 2:49 pm
Great news Paul!!! Big plastic bin = melanoma warrior!!!! I have a couple of link to Celldex the company that makes the drugs. The first link is to press releases and if you go to the Oct 9, 2016 date there is an article about phase two study of one of Glematumamab and later in the press release it talks about combining Varlilumab with Glembatumamab vedotin.http://www.celldex.com/pipeline/cdx-1127.php the second link is to celldex and it talks about Glembatumamab vedotin monotherapy data in ESMO 2016 poster from Oct.http://www.celldex.com/science/publications.php#cdx011 Best wishes!!!Ed
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- January 17, 2017 at 2:49 pm
Great news Paul!!! Big plastic bin = melanoma warrior!!!! I have a couple of link to Celldex the company that makes the drugs. The first link is to press releases and if you go to the Oct 9, 2016 date there is an article about phase two study of one of Glematumamab and later in the press release it talks about combining Varlilumab with Glembatumamab vedotin.http://www.celldex.com/pipeline/cdx-1127.php the second link is to celldex and it talks about Glembatumamab vedotin monotherapy data in ESMO 2016 poster from Oct.http://www.celldex.com/science/publications.php#cdx011 Best wishes!!!Ed
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- January 17, 2017 at 3:44 pm
It's uplifting to hear both you and Jen (and her folks!) feeling so much hope, and getting such a good sense about Dr. Hamid. Finding the "right fit" for mental battle should most certainly help with taking on the physical fight! Aggressive and a** kicking…. love it!
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- January 17, 2017 at 3:44 pm
It's uplifting to hear both you and Jen (and her folks!) feeling so much hope, and getting such a good sense about Dr. Hamid. Finding the "right fit" for mental battle should most certainly help with taking on the physical fight! Aggressive and a** kicking…. love it!
-
- January 17, 2017 at 3:44 pm
It's uplifting to hear both you and Jen (and her folks!) feeling so much hope, and getting such a good sense about Dr. Hamid. Finding the "right fit" for mental battle should most certainly help with taking on the physical fight! Aggressive and a** kicking…. love it!
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- January 17, 2017 at 10:24 pm
Paul,
Glad to hear the drive was worth it. Sounds like you are in good hands, and there's reason for renewed spirit. I travel from Hawaii to see my specialist, and a good friend here went to Angeles clinic for lung cancer and had very good results. Best wishes for quick success in this next ride on the roller-coaster.
Gary
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- January 17, 2017 at 10:24 pm
Paul,
Glad to hear the drive was worth it. Sounds like you are in good hands, and there's reason for renewed spirit. I travel from Hawaii to see my specialist, and a good friend here went to Angeles clinic for lung cancer and had very good results. Best wishes for quick success in this next ride on the roller-coaster.
Gary
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- January 17, 2017 at 10:24 pm
Paul,
Glad to hear the drive was worth it. Sounds like you are in good hands, and there's reason for renewed spirit. I travel from Hawaii to see my specialist, and a good friend here went to Angeles clinic for lung cancer and had very good results. Best wishes for quick success in this next ride on the roller-coaster.
Gary
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- January 18, 2017 at 12:48 am
Way to gut it out and fight for what you need, Paul!!!!! I am so hopeful for you. Your drug conjugate has a pretty long history and a dear one of mine feels certain that he owes his survival to it….so that he could go on for one more year and attain other care. Mind you….he was taking it alone! AND…he is alive and kicking today! So….. I am very hopeful that this COMBO is going to serve you very well!!! Here's background on that part of your combo if you are interested: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/10/another-antibody-drug-conjugate-for.html
Much love and hugs!! C
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- January 18, 2017 at 12:48 am
Way to gut it out and fight for what you need, Paul!!!!! I am so hopeful for you. Your drug conjugate has a pretty long history and a dear one of mine feels certain that he owes his survival to it….so that he could go on for one more year and attain other care. Mind you….he was taking it alone! AND…he is alive and kicking today! So….. I am very hopeful that this COMBO is going to serve you very well!!! Here's background on that part of your combo if you are interested: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/10/another-antibody-drug-conjugate-for.html
Much love and hugs!! C
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- January 18, 2017 at 12:48 am
Way to gut it out and fight for what you need, Paul!!!!! I am so hopeful for you. Your drug conjugate has a pretty long history and a dear one of mine feels certain that he owes his survival to it….so that he could go on for one more year and attain other care. Mind you….he was taking it alone! AND…he is alive and kicking today! So….. I am very hopeful that this COMBO is going to serve you very well!!! Here's background on that part of your combo if you are interested: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/10/another-antibody-drug-conjugate-for.html
Much love and hugs!! C
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