Need referral help out of Kaiser – SF Bay area

I am sorry your family is joining this struggle with such a young person at that.

I am a Norther California Kaiser patient and have been "refered" out three times over the past 14 years.  My oncologist has submitted the paperwork for approval once I have consulted with specialists and decided on their Clinical Trial.  I have paid for the initial consultations.    Kaiser requires all things that could be done at Kaiser to be done at Kaiser.  So all labs and scans that the other facitlity requires have been done at my home Kaiser, or I get billed.  I have participated in Clinical Trials this way and I do not know their procedure for standard care from a melanoma specialist.  They have told me that treatments they can do, such as Yervoy, they would do. (which I did at Kaiser) You may want to get "second opinions" from the specialist and then take that back to Kaiser.  My understanding and experience is the second opinions out of plan are paid for by patient.  I hope that will turn out differently for your family.  They need to ask their oncologist about the procedure for out of plan second opinions and treatment. 

As far as places to go for those second opinions:

There are some local to you such as

Dr. Spittler at Northern California Melanoma Center 

California Pacific Medical Center in San Francisco. ? specific Drs.

Dr. Steven O'Day (highly recommended by many)

The Beverly Hills Cancer Center

8900 Wilshire Blvd

BH,CA 90211

310-432-8900

Omid Hamid at the Angeles Clinic, in LA area.

My most recent trial was done at Providence Cancer Center with Dr. Curti in Portland, Oregon (antiPD1 trial)  I loved the staff and even recently went to speak with him for another consultation.  He is very knowlegeable and explains things well.  The cost of flying there on Southwest is comprable to flying to Southern California.  Partly where you go will depend on what the places have available for your nephew (what he would be qualified to try).  

I wish you luck with your search for successful treatment.  It is very good of you to help with that research.  My sisters help me regularly and it relieves much stress, as there are literally hundreds of clinical trial options to look through.  (there is a link to the website for that on this site)

I am sorry your family is joining this struggle with such a young person at that.

I am a Norther California Kaiser patient and have been "refered" out three times over the past 14 years.  My oncologist has submitted the paperwork for approval once I have consulted with specialists and decided on their Clinical Trial.  I have paid for the initial consultations.    Kaiser requires all things that could be done at Kaiser to be done at Kaiser.  So all labs and scans that the other facitlity requires have been done at my home Kaiser, or I get billed.  I have participated in Clinical Trials this way and I do not know their procedure for standard care from a melanoma specialist.  They have told me that treatments they can do, such as Yervoy, they would do. (which I did at Kaiser) You may want to get "second opinions" from the specialist and then take that back to Kaiser.  My understanding and experience is the second opinions out of plan are paid for by patient.  I hope that will turn out differently for your family.  They need to ask their oncologist about the procedure for out of plan second opinions and treatment. 

As far as places to go for those second opinions:

There are some local to you such as

Dr. Spittler at Northern California Melanoma Center 

California Pacific Medical Center in San Francisco. ? specific Drs.

Dr. Steven O'Day (highly recommended by many)

The Beverly Hills Cancer Center

8900 Wilshire Blvd

BH,CA 90211

310-432-8900

Omid Hamid at the Angeles Clinic, in LA area.

My most recent trial was done at Providence Cancer Center with Dr. Curti in Portland, Oregon (antiPD1 trial)  I loved the staff and even recently went to speak with him for another consultation.  He is very knowlegeable and explains things well.  The cost of flying there on Southwest is comprable to flying to Southern California.  Partly where you go will depend on what the places have available for your nephew (what he would be qualified to try).  

I wish you luck with your search for successful treatment.  It is very good of you to help with that research.  My sisters help me regularly and it relieves much stress, as there are literally hundreds of clinical trial options to look through.  (there is a link to the website for that on this site)

I am sorry your family is joining this struggle with such a young person at that.

I am a Norther California Kaiser patient and have been "refered" out three times over the past 14 years.  My oncologist has submitted the paperwork for approval once I have consulted with specialists and decided on their Clinical Trial.  I have paid for the initial consultations.    Kaiser requires all things that could be done at Kaiser to be done at Kaiser.  So all labs and scans that the other facitlity requires have been done at my home Kaiser, or I get billed.  I have participated in Clinical Trials this way and I do not know their procedure for standard care from a melanoma specialist.  They have told me that treatments they can do, such as Yervoy, they would do. (which I did at Kaiser) You may want to get "second opinions" from the specialist and then take that back to Kaiser.  My understanding and experience is the second opinions out of plan are paid for by patient.  I hope that will turn out differently for your family.  They need to ask their oncologist about the procedure for out of plan second opinions and treatment. 

As far as places to go for those second opinions:

There are some local to you such as

Dr. Spittler at Northern California Melanoma Center 

California Pacific Medical Center in San Francisco. ? specific Drs.

Dr. Steven O'Day (highly recommended by many)

The Beverly Hills Cancer Center

8900 Wilshire Blvd

BH,CA 90211

310-432-8900

Omid Hamid at the Angeles Clinic, in LA area.

My most recent trial was done at Providence Cancer Center with Dr. Curti in Portland, Oregon (antiPD1 trial)  I loved the staff and even recently went to speak with him for another consultation.  He is very knowlegeable and explains things well.  The cost of flying there on Southwest is comprable to flying to Southern California.  Partly where you go will depend on what the places have available for your nephew (what he would be qualified to try).  

I wish you luck with your search for successful treatment.  It is very good of you to help with that research.  My sisters help me regularly and it relieves much stress, as there are literally hundreds of clinical trial options to look through.  (there is a link to the website for that on this site)

We are also w No CA Kaiser; husband has (probably primary) malignant melanoma cervical spine so I have been focusing my research on potential treatment options and what's available within and without Kaiser.  With Kaiser you need to push, to be assertive about the care you should have. Dr Peak is the neurooncologist we saw at Redwood City Kaiser (the neurology center) and he seemed well informed.  Hopefully your nephew is under the care of a pediatric oncologist there at Oakland and he could refer him to a neurooncologist consult.  Our medical oncologist also consulted with UCSF melanoma center chief doctor.  Besides UCSF, Stanford is also one of the leading melanoma centers in the country.  I realize there is great urgency for this child for proper evaluation and a treatment plan.  When you get accurate information of his status, start calling, emailing to all the centers that treat pediatric CNS cancer. Everyone has been very helpful over the phone/responsive emails to me.  Going outside Kaiser, you have to gather all the patient's relevant medical records, lab results, slides, pathology report…they tell you what you need to bring.  And there is an interview charge. If Kaiser oncology develops a treatment plan for your nephew that is what he needs and they can't do it, Kaiser will pay for care elsewhere.  Being treated at a melanoma treatment center is better. It is so good of you to be assisting his parents.  This must be so stressful and scary for them right now and for you too.  Keep us updated on his care and progress.  Adding your family to my prayers.  //AnitaLoree

We are also w No CA Kaiser; husband has (probably primary) malignant melanoma cervical spine so I have been focusing my research on potential treatment options and what's available within and without Kaiser.  With Kaiser you need to push, to be assertive about the care you should have. Dr Peak is the neurooncologist we saw at Redwood City Kaiser (the neurology center) and he seemed well informed.  Hopefully your nephew is under the care of a pediatric oncologist there at Oakland and he could refer him to a neurooncologist consult.  Our medical oncologist also consulted with UCSF melanoma center chief doctor.  Besides UCSF, Stanford is also one of the leading melanoma centers in the country.  I realize there is great urgency for this child for proper evaluation and a treatment plan.  When you get accurate information of his status, start calling, emailing to all the centers that treat pediatric CNS cancer. Everyone has been very helpful over the phone/responsive emails to me.  Going outside Kaiser, you have to gather all the patient's relevant medical records, lab results, slides, pathology report…they tell you what you need to bring.  And there is an interview charge. If Kaiser oncology develops a treatment plan for your nephew that is what he needs and they can't do it, Kaiser will pay for care elsewhere.  Being treated at a melanoma treatment center is better. It is so good of you to be assisting his parents.  This must be so stressful and scary for them right now and for you too.  Keep us updated on his care and progress.  Adding your family to my prayers.  //AnitaLoree

We are also w No CA Kaiser; husband has (probably primary) malignant melanoma cervical spine so I have been focusing my research on potential treatment options and what's available within and without Kaiser.  With Kaiser you need to push, to be assertive about the care you should have. Dr Peak is the neurooncologist we saw at Redwood City Kaiser (the neurology center) and he seemed well informed.  Hopefully your nephew is under the care of a pediatric oncologist there at Oakland and he could refer him to a neurooncologist consult.  Our medical oncologist also consulted with UCSF melanoma center chief doctor.  Besides UCSF, Stanford is also one of the leading melanoma centers in the country.  I realize there is great urgency for this child for proper evaluation and a treatment plan.  When you get accurate information of his status, start calling, emailing to all the centers that treat pediatric CNS cancer. Everyone has been very helpful over the phone/responsive emails to me.  Going outside Kaiser, you have to gather all the patient's relevant medical records, lab results, slides, pathology report…they tell you what you need to bring.  And there is an interview charge. If Kaiser oncology develops a treatment plan for your nephew that is what he needs and they can't do it, Kaiser will pay for care elsewhere.  Being treated at a melanoma treatment center is better. It is so good of you to be assisting his parents.  This must be so stressful and scary for them right now and for you too.  Keep us updated on his care and progress.  Adding your family to my prayers.  //AnitaLoree

Wow, Joe, this is a tough one! Melanoma is bad enough, but melanoma complicated by a pediatric case and further complicated by CNS involvement– whew! You are being very, very helpful by trying to assist the family with the research about this complicated case.

The problem with pediatric melanoma is that most clinical trials require that the patient be at least 18 years of age. Really, aside from the old interferon or IL-2 treatments, the only FDA approved treatment we have now is Yervoy and, if the patient has the BRAF mutation, a BRAF inhibitor like Dabrafenib. Everything else that shows good promise is still in clinical trials.

I suggest that you contact a couple of institutions that do offer clinical trials for pediatric melanoma patients and ask them how one would proceed with a pediatric CNS case. One pediatric melanoma clinical trial being conducted now is called "Ipilumimab ih Children and Adolescents (12 to <18 yaers)" NTC 1696045. If you look this up on clinicaltrials.gov you will see a list of participating institutions. Those places (like St. Jude's and Children's Hospital of LA) will likely be able to advise you about how to naviagate treatment options for a case like your nephew's.

In other words, I think I would rather find out first what is the BEST treatment available and then find out where that would be available– perhaps in the SF area and perhaps not. Once you find out the best treatment and the best facility, then you can fight with Kaiser to get them to pay for it. 

One thing that most of us here learn very early on is that we must be our own best health advocate. Educating yourself about the various treatment options and fighting to get the best treatment available is a big factor in a successful outcome.

Wow, Joe, this is a tough one! Melanoma is bad enough, but melanoma complicated by a pediatric case and further complicated by CNS involvement– whew! You are being very, very helpful by trying to assist the family with the research about this complicated case.

The problem with pediatric melanoma is that most clinical trials require that the patient be at least 18 years of age. Really, aside from the old interferon or IL-2 treatments, the only FDA approved treatment we have now is Yervoy and, if the patient has the BRAF mutation, a BRAF inhibitor like Dabrafenib. Everything else that shows good promise is still in clinical trials.

I suggest that you contact a couple of institutions that do offer clinical trials for pediatric melanoma patients and ask them how one would proceed with a pediatric CNS case. One pediatric melanoma clinical trial being conducted now is called "Ipilumimab ih Children and Adolescents (12 to <18 yaers)" NTC 1696045. If you look this up on clinicaltrials.gov you will see a list of participating institutions. Those places (like St. Jude's and Children's Hospital of LA) will likely be able to advise you about how to naviagate treatment options for a case like your nephew's.

In other words, I think I would rather find out first what is the BEST treatment available and then find out where that would be available– perhaps in the SF area and perhaps not. Once you find out the best treatment and the best facility, then you can fight with Kaiser to get them to pay for it. 

One thing that most of us here learn very early on is that we must be our own best health advocate. Educating yourself about the various treatment options and fighting to get the best treatment available is a big factor in a successful outcome.

Wow, Joe, this is a tough one! Melanoma is bad enough, but melanoma complicated by a pediatric case and further complicated by CNS involvement– whew! You are being very, very helpful by trying to assist the family with the research about this complicated case.

The problem with pediatric melanoma is that most clinical trials require that the patient be at least 18 years of age. Really, aside from the old interferon or IL-2 treatments, the only FDA approved treatment we have now is Yervoy and, if the patient has the BRAF mutation, a BRAF inhibitor like Dabrafenib. Everything else that shows good promise is still in clinical trials.

I suggest that you contact a couple of institutions that do offer clinical trials for pediatric melanoma patients and ask them how one would proceed with a pediatric CNS case. One pediatric melanoma clinical trial being conducted now is called "Ipilumimab ih Children and Adolescents (12 to <18 yaers)" NTC 1696045. If you look this up on clinicaltrials.gov you will see a list of participating institutions. Those places (like St. Jude's and Children's Hospital of LA) will likely be able to advise you about how to naviagate treatment options for a case like your nephew's.

In other words, I think I would rather find out first what is the BEST treatment available and then find out where that would be available– perhaps in the SF area and perhaps not. Once you find out the best treatment and the best facility, then you can fight with Kaiser to get them to pay for it. 

One thing that most of us here learn very early on is that we must be our own best health advocate. Educating yourself about the various treatment options and fighting to get the best treatment available is a big factor in a successful outcome.

I'm so sorry to hear this.  My father was in the Kaiser NorCal system when he was diagnosed with stage IV melanoma, and we went to UCSF Melanoma Center for our second opinion.  I can highly recommend Dr. Adil Daud at UCSF for his melanoma specialist and clinical trial experience, but I'm afraid I don't know about pediatric/CNS involvement specifically.

We had a lot of trouble with the red tape: 

First– getting the medical records.  My father had been treated at Redwood City Kaiser for a skull tumor resection, at Santa Clara Kaiser for oncology, at Milpitas Kaiser for primary care, and at SF Kaiser for ocular oncology, as well as having got a referral to UCSF for another ocular oncology opinion.  It took a lot of precious time and repeated requests to obtain all of his records from all of these locations (including hard scans and tissue samples), and the records packet was needed prior to making an appointment with UCSF Melanoma.  I strongly suggest ordering your nephew's records immediately, even before you decide where to get your second opinion.  Kaiser gives you the option of sending your records directly to the referral clinic, or picking them up yourself.  Picking them up yourself allows you to assemble the packet before you choose the referral site and importantly, lets you ascertain the packet is complete.  I can't count the number of times Kaiser said they would fax or send something to UCSF, and UCSF later told us they still hadn't received it.  Sometimes this was Kaiser's fault, sometimes UCSF had lost it, but the bottom line was that my dad wasn't being treated by doctors who had all the information they needed.

Second– getting the referral from Kaiser.  Even though Kaiser NorCal had no melanoma specialist, they were very reluctant to give us a referral.   (There was one mel specialist in Kaiser SoCal (Riverside), but we first were denied a referral to him by our oncologist because he was outside the local system, and then when we got a referral to him from a different, sympathetic Kaiser doctor, he went out on an indefinite leave of absence.)  We made the appointment with UCSF anyway and paid out of pocket for the consultations– maybe $400-$600 per visit, without any labwork.  Once my father was accepted into a clinical trial through UCSF, Kaiser agreed to pay for anything not covered by the trial expenses that could not be done at Kaiser itself.  So, for example, the bloodwork just done before each anti-PD1 infusion to confirm his enzyme levels etc. was done at UCSF but covered by Kaiser because of the critical timing issue.  The follow-up scans and any treatment of side effects from the trial had to be done at Kaiser to be covered, however.

Third– getting in to see UCSF quickly.  The second opinion appointment they gave us was a month out, which was a heartbreaking timeframe given my father's prognosis and the initial delays with the records, etc.  Of course they only have so much time and are trying to prioritize.  By calling the assistants multiple times, we were able to move the appointment up by ten days when the doctor had a cancellation.

My best advice is to be very pushy (my approach was very polite, but pleading), continuously follow up (don't just wait and assume medical records will be forthcoming because you have made the proper requests), and ask anyone of authority you can find if the person who ought to be helping you is not.  For example, my father's primary oncologist denied him the referral to Riverside Kaiser, but his radiation oncologist (whose job was just to administer the palliative radiation prescribed by the oncologist) agreed to make the referral, even though it wasn't really his role or responsibility to do so.  It was amazing to me, as a naturally unpushy rules-follower, to see how important it was to be the patient's advocate.  No one cares as much about the patient as the patient's family, and the better-informed and more outspoken you can be (while acknowledging your sincere gratitude to the medical folks), the better care the patient will receive.  IMHO.

(Oh, and if it wasn't clear– get in to see a specialist as soon as possible, regardless of whether Kaiser is dilly-dallying with the referral.  Kaiser doesn't have the specialized, up-to-date knowledge your nephew needs.)

I'm so sorry to hear this.  My father was in the Kaiser NorCal system when he was diagnosed with stage IV melanoma, and we went to UCSF Melanoma Center for our second opinion.  I can highly recommend Dr. Adil Daud at UCSF for his melanoma specialist and clinical trial experience, but I'm afraid I don't know about pediatric/CNS involvement specifically.

We had a lot of trouble with the red tape: 

First– getting the medical records.  My father had been treated at Redwood City Kaiser for a skull tumor resection, at Santa Clara Kaiser for oncology, at Milpitas Kaiser for primary care, and at SF Kaiser for ocular oncology, as well as having got a referral to UCSF for another ocular oncology opinion.  It took a lot of precious time and repeated requests to obtain all of his records from all of these locations (including hard scans and tissue samples), and the records packet was needed prior to making an appointment with UCSF Melanoma.  I strongly suggest ordering your nephew's records immediately, even before you decide where to get your second opinion.  Kaiser gives you the option of sending your records directly to the referral clinic, or picking them up yourself.  Picking them up yourself allows you to assemble the packet before you choose the referral site and importantly, lets you ascertain the packet is complete.  I can't count the number of times Kaiser said they would fax or send something to UCSF, and UCSF later told us they still hadn't received it.  Sometimes this was Kaiser's fault, sometimes UCSF had lost it, but the bottom line was that my dad wasn't being treated by doctors who had all the information they needed.

Second– getting the referral from Kaiser.  Even though Kaiser NorCal had no melanoma specialist, they were very reluctant to give us a referral.   (There was one mel specialist in Kaiser SoCal (Riverside), but we first were denied a referral to him by our oncologist because he was outside the local system, and then when we got a referral to him from a different, sympathetic Kaiser doctor, he went out on an indefinite leave of absence.)  We made the appointment with UCSF anyway and paid out of pocket for the consultations– maybe $400-$600 per visit, without any labwork.  Once my father was accepted into a clinical trial through UCSF, Kaiser agreed to pay for anything not covered by the trial expenses that could not be done at Kaiser itself.  So, for example, the bloodwork just done before each anti-PD1 infusion to confirm his enzyme levels etc. was done at UCSF but covered by Kaiser because of the critical timing issue.  The follow-up scans and any treatment of side effects from the trial had to be done at Kaiser to be covered, however.

Third– getting in to see UCSF quickly.  The second opinion appointment they gave us was a month out, which was a heartbreaking timeframe given my father's prognosis and the initial delays with the records, etc.  Of course they only have so much time and are trying to prioritize.  By calling the assistants multiple times, we were able to move the appointment up by ten days when the doctor had a cancellation.

My best advice is to be very pushy (my approach was very polite, but pleading), continuously follow up (don't just wait and assume medical records will be forthcoming because you have made the proper requests), and ask anyone of authority you can find if the person who ought to be helping you is not.  For example, my father's primary oncologist denied him the referral to Riverside Kaiser, but his radiation oncologist (whose job was just to administer the palliative radiation prescribed by the oncologist) agreed to make the referral, even though it wasn't really his role or responsibility to do so.  It was amazing to me, as a naturally unpushy rules-follower, to see how important it was to be the patient's advocate.  No one cares as much about the patient as the patient's family, and the better-informed and more outspoken you can be (while acknowledging your sincere gratitude to the medical folks), the better care the patient will receive.  IMHO.

(Oh, and if it wasn't clear– get in to see a specialist as soon as possible, regardless of whether Kaiser is dilly-dallying with the referral.  Kaiser doesn't have the specialized, up-to-date knowledge your nephew needs.)

I'm so sorry to hear this.  My father was in the Kaiser NorCal system when he was diagnosed with stage IV melanoma, and we went to UCSF Melanoma Center for our second opinion.  I can highly recommend Dr. Adil Daud at UCSF for his melanoma specialist and clinical trial experience, but I'm afraid I don't know about pediatric/CNS involvement specifically.

We had a lot of trouble with the red tape: 

First– getting the medical records.  My father had been treated at Redwood City Kaiser for a skull tumor resection, at Santa Clara Kaiser for oncology, at Milpitas Kaiser for primary care, and at SF Kaiser for ocular oncology, as well as having got a referral to UCSF for another ocular oncology opinion.  It took a lot of precious time and repeated requests to obtain all of his records from all of these locations (including hard scans and tissue samples), and the records packet was needed prior to making an appointment with UCSF Melanoma.  I strongly suggest ordering your nephew's records immediately, even before you decide where to get your second opinion.  Kaiser gives you the option of sending your records directly to the referral clinic, or picking them up yourself.  Picking them up yourself allows you to assemble the packet before you choose the referral site and importantly, lets you ascertain the packet is complete.  I can't count the number of times Kaiser said they would fax or send something to UCSF, and UCSF later told us they still hadn't received it.  Sometimes this was Kaiser's fault, sometimes UCSF had lost it, but the bottom line was that my dad wasn't being treated by doctors who had all the information they needed.

Second– getting the referral from Kaiser.  Even though Kaiser NorCal had no melanoma specialist, they were very reluctant to give us a referral.   (There was one mel specialist in Kaiser SoCal (Riverside), but we first were denied a referral to him by our oncologist because he was outside the local system, and then when we got a referral to him from a different, sympathetic Kaiser doctor, he went out on an indefinite leave of absence.)  We made the appointment with UCSF anyway and paid out of pocket for the consultations– maybe $400-$600 per visit, without any labwork.  Once my father was accepted into a clinical trial through UCSF, Kaiser agreed to pay for anything not covered by the trial expenses that could not be done at Kaiser itself.  So, for example, the bloodwork just done before each anti-PD1 infusion to confirm his enzyme levels etc. was done at UCSF but covered by Kaiser because of the critical timing issue.  The follow-up scans and any treatment of side effects from the trial had to be done at Kaiser to be covered, however.

Third– getting in to see UCSF quickly.  The second opinion appointment they gave us was a month out, which was a heartbreaking timeframe given my father's prognosis and the initial delays with the records, etc.  Of course they only have so much time and are trying to prioritize.  By calling the assistants multiple times, we were able to move the appointment up by ten days when the doctor had a cancellation.

My best advice is to be very pushy (my approach was very polite, but pleading), continuously follow up (don't just wait and assume medical records will be forthcoming because you have made the proper requests), and ask anyone of authority you can find if the person who ought to be helping you is not.  For example, my father's primary oncologist denied him the referral to Riverside Kaiser, but his radiation oncologist (whose job was just to administer the palliative radiation prescribed by the oncologist) agreed to make the referral, even though it wasn't really his role or responsibility to do so.  It was amazing to me, as a naturally unpushy rules-follower, to see how important it was to be the patient's advocate.  No one cares as much about the patient as the patient's family, and the better-informed and more outspoken you can be (while acknowledging your sincere gratitude to the medical folks), the better care the patient will receive.  IMHO.

(Oh, and if it wasn't clear– get in to see a specialist as soon as possible, regardless of whether Kaiser is dilly-dallying with the referral.  Kaiser doesn't have the specialized, up-to-date knowledge your nephew needs.)