› Forums › General Melanoma Community › UCLA for treatment?
- This topic has 20 replies, 7 voices, and was last updated 13 years, 5 months ago by
killmel.
- Post
-
- November 11, 2010 at 6:10 pm
Hi All!
I have a coworker that is currently being treated for breast cancer at UCLA and she was kind enough to ask about melanoma specialists there for me. The doctors she was referred to are Dr. Glaspy, Dr. Ribas and Dr. Chmielowski. Has anyone worked with any of these doctors? I'm currently Stage III NED (waiting on brain MRI results) and my current oncologist was checking into local trials for me before we decided anything. Just wondering if anyone has experience with these doctors….
Thanks in advance!
Wendi
Hi All!
I have a coworker that is currently being treated for breast cancer at UCLA and she was kind enough to ask about melanoma specialists there for me. The doctors she was referred to are Dr. Glaspy, Dr. Ribas and Dr. Chmielowski. Has anyone worked with any of these doctors? I'm currently Stage III NED (waiting on brain MRI results) and my current oncologist was checking into local trials for me before we decided anything. Just wondering if anyone has experience with these doctors….
Thanks in advance!
Wendi
- Replies
-
-
- November 12, 2010 at 3:06 pm
Hi,
I do not have any direct experience with UCLA but I remember JanOC's husband goes to UCLA and I think that she was very unhappy how they treated her husband. I think she said they treated him like a lab rat!!!! Perhaps you can look at old post by JanOC.
-
- November 15, 2010 at 6:44 pm
My husband sees Dr. Chmielowski every month and has seen Dr Ribas as backup. We have been in the Roche BRAF trial since Feb 2010. The "lab rat" comment was just how we were feeling that day! Dr Chmielowski will usually spend time listening and answering my "million" questions during visits (I come with my list, he loves my organization skills!). He always answers my emails promptly between visits if we have any concerns. He spends the time to explain things we don't understand. But you still need to do your research, have a plan, and be your own advocate. Sometimes I get frustrated and overloaded as my husband's advocate and that comes out in my posts. I apologize if I gave anyone the wrong impression of the UCLA doctors. I am grateful that they are helping to keep him alive!
Jan in OC
-
- November 15, 2010 at 6:44 pm
My husband sees Dr. Chmielowski every month and has seen Dr Ribas as backup. We have been in the Roche BRAF trial since Feb 2010. The "lab rat" comment was just how we were feeling that day! Dr Chmielowski will usually spend time listening and answering my "million" questions during visits (I come with my list, he loves my organization skills!). He always answers my emails promptly between visits if we have any concerns. He spends the time to explain things we don't understand. But you still need to do your research, have a plan, and be your own advocate. Sometimes I get frustrated and overloaded as my husband's advocate and that comes out in my posts. I apologize if I gave anyone the wrong impression of the UCLA doctors. I am grateful that they are helping to keep him alive!
Jan in OC
-
- November 12, 2010 at 3:06 pm
Hi,
I do not have any direct experience with UCLA but I remember JanOC's husband goes to UCLA and I think that she was very unhappy how they treated her husband. I think she said they treated him like a lab rat!!!! Perhaps you can look at old post by JanOC.
-
- November 13, 2010 at 12:41 am
I have been a patient of Dr. Ribas since December 2009 and have seen Glaspy and Chmielowski during my hospital stays and visits. I am very happy Dr, Ribas. On my third trial with UCLA and getting great results with the GSK braf right now.
Laurie
-
- November 15, 2010 at 8:18 pm
I did not respond to the IPI. I kept hearing about high response rates to the B-raf and Dr. Ribas wanted me to get started since we saw no response to the IPI. IPI side effects was mostly nausea and fatigue for about 24 hours after the infusion.
I am on week 10 of the B-raf and my mets are slowly shrinking away. My side effects to the B-raf have been slight foot and hand tenderness and a crop of small wart like things that they have removed. I did come down with a case of shingles..but that was not a direct side effect.
Hope this helps and let me knwo if you have any more questions.
Laurie
-
- November 15, 2010 at 8:18 pm
I did not respond to the IPI. I kept hearing about high response rates to the B-raf and Dr. Ribas wanted me to get started since we saw no response to the IPI. IPI side effects was mostly nausea and fatigue for about 24 hours after the infusion.
I am on week 10 of the B-raf and my mets are slowly shrinking away. My side effects to the B-raf have been slight foot and hand tenderness and a crop of small wart like things that they have removed. I did come down with a case of shingles..but that was not a direct side effect.
Hope this helps and let me knwo if you have any more questions.
Laurie
-
- November 14, 2010 at 3:10 am
You are in good hands at UCLA. Dr. Ribas has extensive knowlege with Melanoma as well as Glaspy. I saw Glaspy for a second opinion this past March. He confirmed what my oncs here in Hawaii were saying. There is no good course of treatment for stage IV mel., but since I had "creepy crawly" disease IL-2 might be my best bet. It was, and now I am NED after 23 bags of the stuff.
I hope to remain in the 6% club, if not, then at least let me continue to cherry pick my mel if and when it comes back. He said I will probably be one of those long time survivors and not to worry. I thought that was cavilier of him to say, but so far it is the path my mel is taking. He is very up to date as to what is happening in the field of mel research but got the feeling that Dr. Ribas saw most of the mel patients. I have no hesitation seeing both of them if I was in LA. I even thought about going to UCLA for my IL-2 but after speaking with my docs here in Hawaii, was comfortable enough to stay here.
Best of luck,
Kim K
PS – he took care of my grandmothers lymphoma and remembers our family well.
-
- November 14, 2010 at 3:10 am
You are in good hands at UCLA. Dr. Ribas has extensive knowlege with Melanoma as well as Glaspy. I saw Glaspy for a second opinion this past March. He confirmed what my oncs here in Hawaii were saying. There is no good course of treatment for stage IV mel., but since I had "creepy crawly" disease IL-2 might be my best bet. It was, and now I am NED after 23 bags of the stuff.
I hope to remain in the 6% club, if not, then at least let me continue to cherry pick my mel if and when it comes back. He said I will probably be one of those long time survivors and not to worry. I thought that was cavilier of him to say, but so far it is the path my mel is taking. He is very up to date as to what is happening in the field of mel research but got the feeling that Dr. Ribas saw most of the mel patients. I have no hesitation seeing both of them if I was in LA. I even thought about going to UCLA for my IL-2 but after speaking with my docs here in Hawaii, was comfortable enough to stay here.
Best of luck,
Kim K
PS – he took care of my grandmothers lymphoma and remembers our family well.
-
- November 15, 2010 at 7:06 pm
I appreciate all the feedback! As of now, I'm still waiting for a call from my local oncologist…..makes me consider changing more and more daily. And, although I am 6 months into this now, I'm still learning. For instance, I've read so much about BRAF, but I am not sure I understand what that is and how to know if I should be asking to be tested for that. It sounds as though the UCLA docs specialize in the BRAF trials??? I am stage 3, hopefully NED for 6 weeks (assuming my call is good news) and trying to figure out what to do next. This board has been an invaluable source of information!
-
- November 15, 2010 at 7:06 pm
I appreciate all the feedback! As of now, I'm still waiting for a call from my local oncologist…..makes me consider changing more and more daily. And, although I am 6 months into this now, I'm still learning. For instance, I've read so much about BRAF, but I am not sure I understand what that is and how to know if I should be asking to be tested for that. It sounds as though the UCLA docs specialize in the BRAF trials??? I am stage 3, hopefully NED for 6 weeks (assuming my call is good news) and trying to figure out what to do next. This board has been an invaluable source of information!
-
- November 15, 2010 at 8:11 pm
Hi Wendy-
Happy to exchange info with you directly. I am a patient at both UCLA and UCSF/Cal Pacific. Going on 8 years in this "profession".
Be well
Kari
-
- November 15, 2010 at 8:11 pm
Hi Wendy-
Happy to exchange info with you directly. I am a patient at both UCLA and UCSF/Cal Pacific. Going on 8 years in this "profession".
Be well
Kari
- You must be logged in to reply to this topic.