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Does anyone have experience with Kaiser Permanente?

Forums General Melanoma Community Does anyone have experience with Kaiser Permanente?

  • Post
    democat
    Participant

      Hi everyone

       

      I am stage 3a/3b (due to high mitotic index). I live in San Diego, and recently met with Kaiser's only melanoma oncologist (for 100,000+ patients), Dr. Gailani, who also runs Kaiser's biochemotherapy and IL-2 protocols  – they offer biochemo for stage IV melanoma and as adjuvant therapy for stage III. Unfortunately, Dr. Gailani left Kaiser suddenly this week for a medical leave that is expected to last several months, at least. It is too bad, because I had  complete confidence in him.

      Hi everyone

       

      I am stage 3a/3b (due to high mitotic index). I live in San Diego, and recently met with Kaiser's only melanoma oncologist (for 100,000+ patients), Dr. Gailani, who also runs Kaiser's biochemotherapy and IL-2 protocols  – they offer biochemo for stage IV melanoma and as adjuvant therapy for stage III. Unfortunately, Dr. Gailani left Kaiser suddenly this week for a medical leave that is expected to last several months, at least. It is too bad, because I had  complete confidence in him.

      I was told by someone who works in the biochemo program that the program is closed to new patients while Dr. Gailani is gone.  Kaiser will be referring California patients who want biochemotherapy to USC or UCLA, but it's up to my local oncologist to make the referral, and she is hostile to my request.  She was "put ou" t when I asked to for a referral to Dr. Gailani, even though she has no particular expertise with melanoma, and gave me a lot of misinformation, and didn't even know about Kaiser's biochemo program.  She doesn't think I need a specialist.  (An example of her misinformation: she told me I didn't need scans because it doesn't matter whether a recurrence is caught early, because there would be nothing they could do – I would die within a year.  Dr. Gailani told me the opposite – that early detection of a recurrence is the most important thing, and that there would be plenty of options at that point.)

      I would appreciate hearing from anyone else who is in this catch-22 at Kaiser because of Dr. Gailani's sudden departure. Also, has anyone had biochemo at either UCLA or USC? If so, what can you tell me about those programs?  Also, does anyone know whether adjuvant biochemo is offered in San Diego or Orange County?

       I'd love to hear from anyone who has done biochemo (interferon, IL-2 plus chemo drugs administered for 5 days in hospital three times, with 3 weeks off between each administration).

      Finally, I need to change oncologists at Kaiser San Diego.  Any recommendations?

      So, in summary, I'm looking for information re:

      1. Dealing with Kaiser in Dr. Gailani's absence, getting Kaiser to give me an out-of-system referral

      2. USC vs. UCLA for adjuvant biochemo, or is there somewhere in San Diego or Orange County?

      3. experience with adjuvant biochemo

      4. recommendations for a Kaiser oncologist in San Diego

      Thank you!!

      Roxanne

    Viewing 14 reply threads
    • Replies
        Theresa123
        Participant

          Hi,  I am a Kaiser patient, and I had biochemo at Riverside Kaiser with Dr. Gailani.  boy, are you lucky he is gone.  I later went to National Institute of Health and they told me "You have had the worst health care we have ever seen".    Dr. Gailani and his staff just dumped me without any follow up when the biochemo didn't work.  I also ended up in ICU when they screwed up there.  I am sorry I ever had bio.  I have permanent nerve damage now and chronic pain.  Go for something else, like Yervoy.  Suggestion:  Go to Angeles Clinic on Wilshire.  Dr. Hamid or Dr. Boasberg.  I know it is L.A. but it is worth it.  I have been told that Kaiser oncologists know very little about melanoma by people who are in a position to know.  I believe it.  Pay out of pocket for now and then get Kaiser to pay.  They did with me.  Especially since they don't know what they are doing with mel.

          Good Luck.

          Theresa123
          Participant

            Hi,  I am a Kaiser patient, and I had biochemo at Riverside Kaiser with Dr. Gailani.  boy, are you lucky he is gone.  I later went to National Institute of Health and they told me "You have had the worst health care we have ever seen".    Dr. Gailani and his staff just dumped me without any follow up when the biochemo didn't work.  I also ended up in ICU when they screwed up there.  I am sorry I ever had bio.  I have permanent nerve damage now and chronic pain.  Go for something else, like Yervoy.  Suggestion:  Go to Angeles Clinic on Wilshire.  Dr. Hamid or Dr. Boasberg.  I know it is L.A. but it is worth it.  I have been told that Kaiser oncologists know very little about melanoma by people who are in a position to know.  I believe it.  Pay out of pocket for now and then get Kaiser to pay.  They did with me.  Especially since they don't know what they are doing with mel.

            Good Luck.

            Theresa123
            Participant

              Hi,  I am a Kaiser patient, and I had biochemo at Riverside Kaiser with Dr. Gailani.  boy, are you lucky he is gone.  I later went to National Institute of Health and they told me "You have had the worst health care we have ever seen".    Dr. Gailani and his staff just dumped me without any follow up when the biochemo didn't work.  I also ended up in ICU when they screwed up there.  I am sorry I ever had bio.  I have permanent nerve damage now and chronic pain.  Go for something else, like Yervoy.  Suggestion:  Go to Angeles Clinic on Wilshire.  Dr. Hamid or Dr. Boasberg.  I know it is L.A. but it is worth it.  I have been told that Kaiser oncologists know very little about melanoma by people who are in a position to know.  I believe it.  Pay out of pocket for now and then get Kaiser to pay.  They did with me.  Especially since they don't know what they are doing with mel.

              Good Luck.

              Zam1940
              Participant
                That’s odd.I had bio-chemo and IL -2 from Dr. Gailani both of which failed and he then put me on Yervoy which also didn’t, work. He was totally cooperative and encouraging regarding clinical trials. I went to UCLA oncology a purported “melanoma center of excellence” and they reviewed all my treatment at Kaiser Riverside and said everything they did and were doing was perfectly appropriate and according to the standard of care.

                My experience with Dr. Gailani and Kaiser was first rate.

                I would recommend Dr. Ribas at UCLA to follow you if Kaiser would permit it. Best of luck.

                Zam1940
                Participant
                  That’s odd.I had bio-chemo and IL -2 from Dr. Gailani both of which failed and he then put me on Yervoy which also didn’t, work. He was totally cooperative and encouraging regarding clinical trials. I went to UCLA oncology a purported “melanoma center of excellence” and they reviewed all my treatment at Kaiser Riverside and said everything they did and were doing was perfectly appropriate and according to the standard of care.

                  My experience with Dr. Gailani and Kaiser was first rate.

                  I would recommend Dr. Ribas at UCLA to follow you if Kaiser would permit it. Best of luck.

                  Zam1940
                  Participant
                    That’s odd.I had bio-chemo and IL -2 from Dr. Gailani both of which failed and he then put me on Yervoy which also didn’t, work. He was totally cooperative and encouraging regarding clinical trials. I went to UCLA oncology a purported “melanoma center of excellence” and they reviewed all my treatment at Kaiser Riverside and said everything they did and were doing was perfectly appropriate and according to the standard of care.

                    My experience with Dr. Gailani and Kaiser was first rate.

                    I would recommend Dr. Ribas at UCLA to follow you if Kaiser would permit it. Best of luck.

                    thrashter
                    Participant

                      I just had a meeting with Gailani before he left. He will be back in 15 to 30 days.i had finished my third round of biochemo and am now headed for Yervoy. I visited Angeles in the beginning and they told me Gailani was one of the top Melanoma people in so cal.

                      thrashter
                      Participant

                        I just had a meeting with Gailani before he left. He will be back in 15 to 30 days.i had finished my third round of biochemo and am now headed for Yervoy. I visited Angeles in the beginning and they told me Gailani was one of the top Melanoma people in so cal.

                        thrashter
                        Participant

                          I just had a meeting with Gailani before he left. He will be back in 15 to 30 days.i had finished my third round of biochemo and am now headed for Yervoy. I visited Angeles in the beginning and they told me Gailani was one of the top Melanoma people in so cal.

                          kathycmc
                          Participant

                            My daughter is 24 and just finished her first round of biochemotherapy at Riverside Kaiser on 2/26/13.  She met with Dr. Galaini on his last day.  There are rumors that he is having heart surgery and whether he will be back or not is not yet known.  She has 2 more rounds scheduled and we were assured the program will be continuing under Dr. Hsu who trained under Dr. Galaini.  Dr. Moon also consulted on my daughter's care.  Your oncologist should certainly refer you to a melanoma specialist either within or outside of Kaiser and I would complain all the way up to the top until she does.  There are many treatment options available and you deserve access to them.  

                            kathycmc
                            Participant

                              My daughter is 24 and just finished her first round of biochemotherapy at Riverside Kaiser on 2/26/13.  She met with Dr. Galaini on his last day.  There are rumors that he is having heart surgery and whether he will be back or not is not yet known.  She has 2 more rounds scheduled and we were assured the program will be continuing under Dr. Hsu who trained under Dr. Galaini.  Dr. Moon also consulted on my daughter's care.  Your oncologist should certainly refer you to a melanoma specialist either within or outside of Kaiser and I would complain all the way up to the top until she does.  There are many treatment options available and you deserve access to them.  

                              kathycmc
                              Participant

                                My daughter is 24 and just finished her first round of biochemotherapy at Riverside Kaiser on 2/26/13.  She met with Dr. Galaini on his last day.  There are rumors that he is having heart surgery and whether he will be back or not is not yet known.  She has 2 more rounds scheduled and we were assured the program will be continuing under Dr. Hsu who trained under Dr. Galaini.  Dr. Moon also consulted on my daughter's care.  Your oncologist should certainly refer you to a melanoma specialist either within or outside of Kaiser and I would complain all the way up to the top until she does.  There are many treatment options available and you deserve access to them.  

                                dolphin5
                                Participant

                                  My wife and I were at Kaiser Riverside the last day Doctor Gailani was at work.  She has gone through three rounds of BioChemo and I must say Dr's Shu and Moon are outstanding.  The rumor is Dr. Gailani may return to work soon.  Do not give up.  Call their office (951) 353-5271.  The staff is very helpful.  Just a note.  We met the parients of the 23 year old who was doing treatment at the same time.  I agree with her statement.  Dr Gailani offered clinical trials but our research indicated he was the one.  We are now looking for a neck surgeon within Kaiser.  I was told of a doctor at Belflower Kaiser but lost the name.  Don't give up.  Keep asking and If that does not work, ask for a second opinion within Kaiser.  They cannot say no.    

                                    Irish1
                                    Participant

                                      Let's just say that after all of my experiences with Kaiser I wish they would get a GOOD melanoma specialist.  Dr. Gailani was the oncologist who consulted with me after my initial diagnosis, and I agree with the earlier comment on this thread that you should be glad he's gone.  

                                      After my initial removal of my tumor from my cheek in 2007 (which was over 4 mm in depth) I was given the tracer for the sentinel lymph node, and both times the tracer failed to work.  I still asked for a lymph node dissection at that point.  I specifically asked Dr. Gailani to make a recommendation for it.  He refused. Kaiser then refused to approve a dissection surgery for me.  I appealed, to no avail.    Later that year, I ended up with a palpable lymph node under my chin.  I finally got the lymph node dissection that I should have had earlier that year, which was done by Dr. Young Oh, a great surgeon and a compassionate and caring doctor.

                                      In my subsequent year of "treatment" with Dr. Gailani, he began to set me up for CT scans.  On some of my scans I apparently displayed some white spots on my lungs and what is now known to be a benign tumor on my liver.  Without doing biopsies on either of these areas, he proceeded to announce to me that I was stage IV melanoma and wrote in my charts that it had spread to my lungs and liver. Of course, you can imagine the effect this had on me and how it terrorized me and nearly caused me to have a breakdown.   After a year of watching the lung scans, he concluded that if these spots on my lungs were melanoma, they were growing so slowly that they might kill me when I was 90.  Once again, making wild conclusions about things that were never biopsied.  I stopped going to any appointments with him in 2009.  He left his wild conclusions in my chart, and my GP and dermatologist began making concerned inquiries about these weird diagnoses after some time passed, and wrote emails to him and to the oncology department there in Riverside.  My present oncologist has scoffed at some of these things that he wrote in my chart, stating so what if I had some white spots on my lungs, and the tumor on my liver is undoubtedly benign.

                                      In 2008 I had a brain MRI where a lesion was spotted on my cerebellum.  It was followed for awhile, but there was never any growth, so it was concluded that it was NOT a melanoma met.  Once again, Kaiser never offered to biopsy it for me or even to warn me what it could possibly be.  In January of 2016 my MRI showed small growth and edema around the mass, and I finally had a craniotomy in January and was diagnosed with primary grade 2 astrocytoma.  Perhaps the melanoma did alter my DNA to help set up the tumor, but it is not a melanoma metastasis.

                                      Anyway, if you can escape from Kaiser, please do.  I have had excellent surgeons.  My brain surgeon, Dr. Redjal, was terrific.  But some of these doctors at Kaiser are indeed horrible.  I think Dr. Gailani was one of them.

                                      Irish1
                                      Participant

                                        Let's just say that after all of my experiences with Kaiser I wish they would get a GOOD melanoma specialist.  Dr. Gailani was the oncologist who consulted with me after my initial diagnosis, and I agree with the earlier comment on this thread that you should be glad he's gone.  

                                        After my initial removal of my tumor from my cheek in 2007 (which was over 4 mm in depth) I was given the tracer for the sentinel lymph node, and both times the tracer failed to work.  I still asked for a lymph node dissection at that point.  I specifically asked Dr. Gailani to make a recommendation for it.  He refused. Kaiser then refused to approve a dissection surgery for me.  I appealed, to no avail.    Later that year, I ended up with a palpable lymph node under my chin.  I finally got the lymph node dissection that I should have had earlier that year, which was done by Dr. Young Oh, a great surgeon and a compassionate and caring doctor.

                                        In my subsequent year of "treatment" with Dr. Gailani, he began to set me up for CT scans.  On some of my scans I apparently displayed some white spots on my lungs and what is now known to be a benign tumor on my liver.  Without doing biopsies on either of these areas, he proceeded to announce to me that I was stage IV melanoma and wrote in my charts that it had spread to my lungs and liver. Of course, you can imagine the effect this had on me and how it terrorized me and nearly caused me to have a breakdown.   After a year of watching the lung scans, he concluded that if these spots on my lungs were melanoma, they were growing so slowly that they might kill me when I was 90.  Once again, making wild conclusions about things that were never biopsied.  I stopped going to any appointments with him in 2009.  He left his wild conclusions in my chart, and my GP and dermatologist began making concerned inquiries about these weird diagnoses after some time passed, and wrote emails to him and to the oncology department there in Riverside.  My present oncologist has scoffed at some of these things that he wrote in my chart, stating so what if I had some white spots on my lungs, and the tumor on my liver is undoubtedly benign.

                                        In 2008 I had a brain MRI where a lesion was spotted on my cerebellum.  It was followed for awhile, but there was never any growth, so it was concluded that it was NOT a melanoma met.  Once again, Kaiser never offered to biopsy it for me or even to warn me what it could possibly be.  In January of 2016 my MRI showed small growth and edema around the mass, and I finally had a craniotomy in January and was diagnosed with primary grade 2 astrocytoma.  Perhaps the melanoma did alter my DNA to help set up the tumor, but it is not a melanoma metastasis.

                                        Anyway, if you can escape from Kaiser, please do.  I have had excellent surgeons.  My brain surgeon, Dr. Redjal, was terrific.  But some of these doctors at Kaiser are indeed horrible.  I think Dr. Gailani was one of them.

                                        Irish1
                                        Participant

                                          Let's just say that after all of my experiences with Kaiser I wish they would get a GOOD melanoma specialist.  Dr. Gailani was the oncologist who consulted with me after my initial diagnosis, and I agree with the earlier comment on this thread that you should be glad he's gone.  

                                          After my initial removal of my tumor from my cheek in 2007 (which was over 4 mm in depth) I was given the tracer for the sentinel lymph node, and both times the tracer failed to work.  I still asked for a lymph node dissection at that point.  I specifically asked Dr. Gailani to make a recommendation for it.  He refused. Kaiser then refused to approve a dissection surgery for me.  I appealed, to no avail.    Later that year, I ended up with a palpable lymph node under my chin.  I finally got the lymph node dissection that I should have had earlier that year, which was done by Dr. Young Oh, a great surgeon and a compassionate and caring doctor.

                                          In my subsequent year of "treatment" with Dr. Gailani, he began to set me up for CT scans.  On some of my scans I apparently displayed some white spots on my lungs and what is now known to be a benign tumor on my liver.  Without doing biopsies on either of these areas, he proceeded to announce to me that I was stage IV melanoma and wrote in my charts that it had spread to my lungs and liver. Of course, you can imagine the effect this had on me and how it terrorized me and nearly caused me to have a breakdown.   After a year of watching the lung scans, he concluded that if these spots on my lungs were melanoma, they were growing so slowly that they might kill me when I was 90.  Once again, making wild conclusions about things that were never biopsied.  I stopped going to any appointments with him in 2009.  He left his wild conclusions in my chart, and my GP and dermatologist began making concerned inquiries about these weird diagnoses after some time passed, and wrote emails to him and to the oncology department there in Riverside.  My present oncologist has scoffed at some of these things that he wrote in my chart, stating so what if I had some white spots on my lungs, and the tumor on my liver is undoubtedly benign.

                                          In 2008 I had a brain MRI where a lesion was spotted on my cerebellum.  It was followed for awhile, but there was never any growth, so it was concluded that it was NOT a melanoma met.  Once again, Kaiser never offered to biopsy it for me or even to warn me what it could possibly be.  In January of 2016 my MRI showed small growth and edema around the mass, and I finally had a craniotomy in January and was diagnosed with primary grade 2 astrocytoma.  Perhaps the melanoma did alter my DNA to help set up the tumor, but it is not a melanoma metastasis.

                                          Anyway, if you can escape from Kaiser, please do.  I have had excellent surgeons.  My brain surgeon, Dr. Redjal, was terrific.  But some of these doctors at Kaiser are indeed horrible.  I think Dr. Gailani was one of them.

                                        dolphin5
                                        Participant

                                          My wife and I were at Kaiser Riverside the last day Doctor Gailani was at work.  She has gone through three rounds of BioChemo and I must say Dr's Shu and Moon are outstanding.  The rumor is Dr. Gailani may return to work soon.  Do not give up.  Call their office (951) 353-5271.  The staff is very helpful.  Just a note.  We met the parients of the 23 year old who was doing treatment at the same time.  I agree with her statement.  Dr Gailani offered clinical trials but our research indicated he was the one.  We are now looking for a neck surgeon within Kaiser.  I was told of a doctor at Belflower Kaiser but lost the name.  Don't give up.  Keep asking and If that does not work, ask for a second opinion within Kaiser.  They cannot say no.    

                                          dolphin5
                                          Participant

                                            My wife and I were at Kaiser Riverside the last day Doctor Gailani was at work.  She has gone through three rounds of BioChemo and I must say Dr's Shu and Moon are outstanding.  The rumor is Dr. Gailani may return to work soon.  Do not give up.  Call their office (951) 353-5271.  The staff is very helpful.  Just a note.  We met the parients of the 23 year old who was doing treatment at the same time.  I agree with her statement.  Dr Gailani offered clinical trials but our research indicated he was the one.  We are now looking for a neck surgeon within Kaiser.  I was told of a doctor at Belflower Kaiser but lost the name.  Don't give up.  Keep asking and If that does not work, ask for a second opinion within Kaiser.  They cannot say no.    

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