mau

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)

primary 1995  (31 years old)

NED 1995 -2000

Stage iv 2001   (37yo)

NED 2003 -2011

2011 – present  …. as Charlie S. says, "not dead yet"

Just turned 50!  In 2000, as a single mom with two small kids, when disease progressed to stage3, was told I wouldn't make it to 40.  What do "they" know? Both kids are wonderful young adults and I am very thankful to have grown them up and pray daily that I will know my grandkids. (which aren't due any sooner than 5 years from now!)

Irish white skin always sunburned before tanning.  Back in the 70's we used sun tan lotion, not sunscreen!

Learned to swim at 3 and spent every momnet of every summer outside if I could.

primary 1995  (31 years old)

NED 1995 -2000

Stage iv 2001   (37yo)

NED 2003 -2011

2011 – present  …. as Charlie S. says, "not dead yet"

Just turned 50!  In 2000, as a single mom with two small kids, when disease progressed to stage3, was told I wouldn't make it to 40.  What do "they" know? Both kids are wonderful young adults and I am very thankful to have grown them up and pray daily that I will know my grandkids. (which aren't due any sooner than 5 years from now!)

Irish white skin always sunburned before tanning.  Back in the 70's we used sun tan lotion, not sunscreen!

Learned to swim at 3 and spent every momnet of every summer outside if I could.

primary 1995  (31 years old)

NED 1995 -2000

Stage iv 2001   (37yo)

NED 2003 -2011

2011 – present  …. as Charlie S. says, "not dead yet"

Just turned 50!  In 2000, as a single mom with two small kids, when disease progressed to stage3, was told I wouldn't make it to 40.  What do "they" know? Both kids are wonderful young adults and I am very thankful to have grown them up and pray daily that I will know my grandkids. (which aren't due any sooner than 5 years from now!)

Irish white skin always sunburned before tanning.  Back in the 70's we used sun tan lotion, not sunscreen!

Learned to swim at 3 and spent every momnet of every summer outside if I could.

Hi. I had ipi followed by radiation last fall. Fatigue and gastrointestinal problems with both. But also on pain meds at the time which have the same side effects. For nausea I drank ginger ale and tea and sister in law recommended classic coke. I am not a soda drinker and never colas but this did help when ginger didn't. Has to be the real sugar kind. I did take nausea meds when those " natural" items didn't work. General eating was difficult as along with nausea and constipation was general lack of appetite and aversions to certain foods and textures. Sister in law kept me supplied with homemade soup. If people want to help with foods I suggest foregoing casseroles that are often offered and suggest soups. People like providing food and this might be less likely to go to waste. 

With fatigue … Rest. Means probably a different sleep schedule but just go with it. Hard to do if you have to be to work on time and well rested so maybe you will need to take time off. As they say everyone responds and deals differently. I was in a lot of pain with a bleeding tumor so I wasn't working anyway, but would have had to stop from side effects of treatment.  I did work other years when treatment was surgery and during 3 clinical trials. 

My radiation was in pelvic area so GI problems that already were an issue continued. I was not prepared for the extent of skin irritation in terms of burning itching and peeling so you know everyone different but it can get ugly. Just a shock and annoying but salves /ointments easily treat it, just want you to be forewarned to eliminate that shock. 

Since radiation will be from ribs up, stomach / food issues might arise. My radiologist suggested Jamba Juice to get nutrients and stay hydrated. Making your own smoothies at home (or with someone's help) option too and this did help me greatly .  I tried ensure and of corse a fruit drink is much better tasting!  Soup, smoothies, oatmeal, rice and toast were about all I could eat. 

The actual infusion and time on radiation table are not difficult -like a routine dentist appointment.  You are there,they take care of you, you go home.  There are more people being treated with this combo with good results. Hoping you are the next success story. 

Wishing you well,

Hi. I had ipi followed by radiation last fall. Fatigue and gastrointestinal problems with both. But also on pain meds at the time which have the same side effects. For nausea I drank ginger ale and tea and sister in law recommended classic coke. I am not a soda drinker and never colas but this did help when ginger didn't. Has to be the real sugar kind. I did take nausea meds when those " natural" items didn't work. General eating was difficult as along with nausea and constipation was general lack of appetite and aversions to certain foods and textures. Sister in law kept me supplied with homemade soup. If people want to help with foods I suggest foregoing casseroles that are often offered and suggest soups. People like providing food and this might be less likely to go to waste. 

With fatigue … Rest. Means probably a different sleep schedule but just go with it. Hard to do if you have to be to work on time and well rested so maybe you will need to take time off. As they say everyone responds and deals differently. I was in a lot of pain with a bleeding tumor so I wasn't working anyway, but would have had to stop from side effects of treatment.  I did work other years when treatment was surgery and during 3 clinical trials. 

My radiation was in pelvic area so GI problems that already were an issue continued. I was not prepared for the extent of skin irritation in terms of burning itching and peeling so you know everyone different but it can get ugly. Just a shock and annoying but salves /ointments easily treat it, just want you to be forewarned to eliminate that shock. 

Since radiation will be from ribs up, stomach / food issues might arise. My radiologist suggested Jamba Juice to get nutrients and stay hydrated. Making your own smoothies at home (or with someone's help) option too and this did help me greatly .  I tried ensure and of corse a fruit drink is much better tasting!  Soup, smoothies, oatmeal, rice and toast were about all I could eat. 

The actual infusion and time on radiation table are not difficult -like a routine dentist appointment.  You are there,they take care of you, you go home.  There are more people being treated with this combo with good results. Hoping you are the next success story. 

Wishing you well,

Hi. I had ipi followed by radiation last fall. Fatigue and gastrointestinal problems with both. But also on pain meds at the time which have the same side effects. For nausea I drank ginger ale and tea and sister in law recommended classic coke. I am not a soda drinker and never colas but this did help when ginger didn't. Has to be the real sugar kind. I did take nausea meds when those " natural" items didn't work. General eating was difficult as along with nausea and constipation was general lack of appetite and aversions to certain foods and textures. Sister in law kept me supplied with homemade soup. If people want to help with foods I suggest foregoing casseroles that are often offered and suggest soups. People like providing food and this might be less likely to go to waste. 

With fatigue … Rest. Means probably a different sleep schedule but just go with it. Hard to do if you have to be to work on time and well rested so maybe you will need to take time off. As they say everyone responds and deals differently. I was in a lot of pain with a bleeding tumor so I wasn't working anyway, but would have had to stop from side effects of treatment.  I did work other years when treatment was surgery and during 3 clinical trials. 

My radiation was in pelvic area so GI problems that already were an issue continued. I was not prepared for the extent of skin irritation in terms of burning itching and peeling so you know everyone different but it can get ugly. Just a shock and annoying but salves /ointments easily treat it, just want you to be forewarned to eliminate that shock. 

Since radiation will be from ribs up, stomach / food issues might arise. My radiologist suggested Jamba Juice to get nutrients and stay hydrated. Making your own smoothies at home (or with someone's help) option too and this did help me greatly .  I tried ensure and of corse a fruit drink is much better tasting!  Soup, smoothies, oatmeal, rice and toast were about all I could eat. 

The actual infusion and time on radiation table are not difficult -like a routine dentist appointment.  You are there,they take care of you, you go home.  There are more people being treated with this combo with good results. Hoping you are the next success story. 

Wishing you well,

I had groin involvement in 2000.  I have had mild lymphedema since. (left leg also)  The things that make it swell are lots of walking  ( like all day hiking)  and hot summer days.  I wear a compression garment when I feel like it may swell or if my leg is feeling heavy or painful.  If I am traveling, I take it.  I wore it much more often the first few years, but found that it really didn't matter much if my leg didn't feel heavy.  I do have a half leg stocking which you can get now over the counter in lower compressions.  I wear that if my ankle is more swollen.  I have a variety of custom made stockings of various compressions but really, for me, I find I need it only a few times a year.  I have stayed away from hot tubs since I know that hot summer days cause more swelling it seems hot water would too.  BUT  as the other response notes it is a lifetime thing you have to be aware of and diligent with.  You need to see your doctor right away if the leg is red and hot, or the swelling severe.  My swelling is consistent – it is always about an inch bigger than the other leg-and I have come to know when to use the garment as preventative to keep it from getting worse.

As far as the use of the hot tub, (or other activities for that matter) try it, go slow and stop if your leg seems to be getting worse.  I do know swimming in the ocean helps!

wishing you well.

I had groin involvement in 2000.  I have had mild lymphedema since. (left leg also)  The things that make it swell are lots of walking  ( like all day hiking)  and hot summer days.  I wear a compression garment when I feel like it may swell or if my leg is feeling heavy or painful.  If I am traveling, I take it.  I wore it much more often the first few years, but found that it really didn't matter much if my leg didn't feel heavy.  I do have a half leg stocking which you can get now over the counter in lower compressions.  I wear that if my ankle is more swollen.  I have a variety of custom made stockings of various compressions but really, for me, I find I need it only a few times a year.  I have stayed away from hot tubs since I know that hot summer days cause more swelling it seems hot water would too.  BUT  as the other response notes it is a lifetime thing you have to be aware of and diligent with.  You need to see your doctor right away if the leg is red and hot, or the swelling severe.  My swelling is consistent – it is always about an inch bigger than the other leg-and I have come to know when to use the garment as preventative to keep it from getting worse.

As far as the use of the hot tub, (or other activities for that matter) try it, go slow and stop if your leg seems to be getting worse.  I do know swimming in the ocean helps!

wishing you well.

I had groin involvement in 2000.  I have had mild lymphedema since. (left leg also)  The things that make it swell are lots of walking  ( like all day hiking)  and hot summer days.  I wear a compression garment when I feel like it may swell or if my leg is feeling heavy or painful.  If I am traveling, I take it.  I wore it much more often the first few years, but found that it really didn't matter much if my leg didn't feel heavy.  I do have a half leg stocking which you can get now over the counter in lower compressions.  I wear that if my ankle is more swollen.  I have a variety of custom made stockings of various compressions but really, for me, I find I need it only a few times a year.  I have stayed away from hot tubs since I know that hot summer days cause more swelling it seems hot water would too.  BUT  as the other response notes it is a lifetime thing you have to be aware of and diligent with.  You need to see your doctor right away if the leg is red and hot, or the swelling severe.  My swelling is consistent – it is always about an inch bigger than the other leg-and I have come to know when to use the garment as preventative to keep it from getting worse.

As far as the use of the hot tub, (or other activities for that matter) try it, go slow and stop if your leg seems to be getting worse.  I do know swimming in the ocean helps!

wishing you well.

Kath,

Providence has melanoma specialists and participates in many ciinical trials.  I saw Dr. Curti for the AntiPD1 trial last year.  You have a wonderful city.  I came from California to participate in this trial.  The people at Providence and throughout the community were wonderful.

Kath,

Providence has melanoma specialists and participates in many ciinical trials.  I saw Dr. Curti for the AntiPD1 trial last year.  You have a wonderful city.  I came from California to participate in this trial.  The people at Providence and throughout the community were wonderful.

Kath,

Providence has melanoma specialists and participates in many ciinical trials.  I saw Dr. Curti for the AntiPD1 trial last year.  You have a wonderful city.  I came from California to participate in this trial.  The people at Providence and throughout the community were wonderful.