Report from PET and Specialist

Sorry to hear of all you are going through. I do not have the experience to offer next step advice on treatment so hopefully others will chime in. Yogi Berra once said "It ain't over till it's over." Don't lose hope – you never know what can happen next.

Kevin

Sorry to hear of all you are going through. I do not have the experience to offer next step advice on treatment so hopefully others will chime in. Yogi Berra once said "It ain't over till it's over." Don't lose hope – you never know what can happen next.

Kevin

Sorry to hear of all you are going through. I do not have the experience to offer next step advice on treatment so hopefully others will chime in. Yogi Berra once said "It ain't over till it's over." Don't lose hope – you never know what can happen next.

Kevin

Hi Denise, you are an inspiration to me over these last several months- I'm praying for the right treatment and doc to come into your life at Godspeed….cry, get angry, do whatever you need to do but I"M NOT GIVING UP ON YOU. Stay strong.

Hi Denise, you are an inspiration to me over these last several months- I'm praying for the right treatment and doc to come into your life at Godspeed….cry, get angry, do whatever you need to do but I"M NOT GIVING UP ON YOU. Stay strong.

Hi Denise, you are an inspiration to me over these last several months- I'm praying for the right treatment and doc to come into your life at Godspeed….cry, get angry, do whatever you need to do but I"M NOT GIVING UP ON YOU. Stay strong.

Hi Denise,

1) Great that you're being referred to a higher resolution SRS location. Sounds like San Fran is the place to be, not Sac.

2) While IPI (and IL-2 for that matter) don't cross the blood brain barrier, reputable sources (you've probably heard this) say the immune cells that get boosted are what matters, and they do. 

3) Doing radiation and SRS at the same time is thought to boost the overall effect of both.

I know none of this is guaranteed, but I think Dr. Minor would agree that there's a lot of ammo, many arrows in the quiver yet to be employed, including those you've listed.

Best, Kyle 

Hi Denise,

1) Great that you're being referred to a higher resolution SRS location. Sounds like San Fran is the place to be, not Sac.

2) While IPI (and IL-2 for that matter) don't cross the blood brain barrier, reputable sources (you've probably heard this) say the immune cells that get boosted are what matters, and they do. 

3) Doing radiation and SRS at the same time is thought to boost the overall effect of both.

I know none of this is guaranteed, but I think Dr. Minor would agree that there's a lot of ammo, many arrows in the quiver yet to be employed, including those you've listed.

Best, Kyle 

Hi Denise,

1) Great that you're being referred to a higher resolution SRS location. Sounds like San Fran is the place to be, not Sac.

2) While IPI (and IL-2 for that matter) don't cross the blood brain barrier, reputable sources (you've probably heard this) say the immune cells that get boosted are what matters, and they do. 

3) Doing radiation and SRS at the same time is thought to boost the overall effect of both.

I know none of this is guaranteed, but I think Dr. Minor would agree that there's a lot of ammo, many arrows in the quiver yet to be employed, including those you've listed.

Best, Kyle 

O-o-o-h-h-h, Denise! Poor honey! You really did have a bad week, didn't you? What you need now is a big hug (( HUG!! )). Actually, a lot of hugs. I hope you are getting them from your friends and family.

It's always a blow when we get disappointing scan results. Even when we half expect it, it's a real downer when you see progression on the scans. That's normal. And as for you general oncolgist in Sacramento? Well, my mother always told me that the words I have in mind are not lady-like, so I won't say them. 

Look at it this way… I'm sure you have read dozens of posts on this forum from people who are newly diagnosed with Stage IV melanoma. They always ask, "What do I need to do?" And we always say, "First, get yourself to a treatment center that has a whole team specializing in melanoma." We always say that, right? The reason is, general oncologists work with all different kinds of cancer– breast cancer, lung cancer, colon cancer, etc. etc. For a cancer whose treatment is  fairly standardized, that's proably OK. Or for someone who is on a maintenace dose of some drug. A general oncologist can monitor overall health, side effects, blood tests, etc. 

But melanoma has no "standard" treatment. It's always been a weird bugger, and a lot of new and different tests and treatments have been coming out in the last 2 or 3 years with even more now in clinical trials. How can you expect a general oncologist to keep up with all that stuff? And keep up with new developments in breast cancer and lung cancer and colon cancer, and so on. That's just not humanly possible. 

If your local oncologist seems to be throwing up his hands and saying, "There's nothing more I can do." that's becase he's tried everything HE knows. It does NOT mean that he has tried everything out there! As Al would say, his quiver is empty.''

I assume that getting to San Francisco is a hassle for you. However, I think that it is now clear that Dr. Minor has more experience with melanoma, he has a whole team of radiation oncologists, medical oncologists, neurologists, etc with melanoma experience, and he's "up" on the literature and the clinical trials. I think he is going to have to become your primary melanoma doctor now. He still has a lot of arrows in his quiver. 

As for hospice, I'm a firm believer that anyone diagnosed with Stage IV melanoma should sign up for home hospice care. They provide so much help and support. They're really nice and really do understand the physical and emotional  complexities and the side effects of cancer treatment. It used to be that hospice would only take you if you had reached the end of the line for treatments and were just waiting to die. But in recent years (I think because of a change in Medicare and Medicaid rules), many hospcie organizations started taking people who are stil being treated. They just make your life a whole lot easier while you are undergoing treatment. And if you recover, you just say, "Thank you very much. Good bye" and that's that. 

I am very, very glad that you asserted yourself and discovered that you need to more sophisticated SRS machine than you could get in Sacramento. Good for you! Now be just as assertive and make Dr. Minor your primary melanoma doctor. You're not done– not by a long shot! You're just got to get with a winning team. Remember– you are bound and determined to go to Hawaii this Fall, aren't you?! Well, gird your loins and make it happen.

O-o-o-h-h-h, Denise! Poor honey! You really did have a bad week, didn't you? What you need now is a big hug (( HUG!! )). Actually, a lot of hugs. I hope you are getting them from your friends and family.

It's always a blow when we get disappointing scan results. Even when we half expect it, it's a real downer when you see progression on the scans. That's normal. And as for you general oncolgist in Sacramento? Well, my mother always told me that the words I have in mind are not lady-like, so I won't say them. 

Look at it this way… I'm sure you have read dozens of posts on this forum from people who are newly diagnosed with Stage IV melanoma. They always ask, "What do I need to do?" And we always say, "First, get yourself to a treatment center that has a whole team specializing in melanoma." We always say that, right? The reason is, general oncologists work with all different kinds of cancer– breast cancer, lung cancer, colon cancer, etc. etc. For a cancer whose treatment is  fairly standardized, that's proably OK. Or for someone who is on a maintenace dose of some drug. A general oncologist can monitor overall health, side effects, blood tests, etc. 

But melanoma has no "standard" treatment. It's always been a weird bugger, and a lot of new and different tests and treatments have been coming out in the last 2 or 3 years with even more now in clinical trials. How can you expect a general oncologist to keep up with all that stuff? And keep up with new developments in breast cancer and lung cancer and colon cancer, and so on. That's just not humanly possible. 

If your local oncologist seems to be throwing up his hands and saying, "There's nothing more I can do." that's becase he's tried everything HE knows. It does NOT mean that he has tried everything out there! As Al would say, his quiver is empty.''

I assume that getting to San Francisco is a hassle for you. However, I think that it is now clear that Dr. Minor has more experience with melanoma, he has a whole team of radiation oncologists, medical oncologists, neurologists, etc with melanoma experience, and he's "up" on the literature and the clinical trials. I think he is going to have to become your primary melanoma doctor now. He still has a lot of arrows in his quiver. 

As for hospice, I'm a firm believer that anyone diagnosed with Stage IV melanoma should sign up for home hospice care. They provide so much help and support. They're really nice and really do understand the physical and emotional  complexities and the side effects of cancer treatment. It used to be that hospice would only take you if you had reached the end of the line for treatments and were just waiting to die. But in recent years (I think because of a change in Medicare and Medicaid rules), many hospcie organizations started taking people who are stil being treated. They just make your life a whole lot easier while you are undergoing treatment. And if you recover, you just say, "Thank you very much. Good bye" and that's that. 

I am very, very glad that you asserted yourself and discovered that you need to more sophisticated SRS machine than you could get in Sacramento. Good for you! Now be just as assertive and make Dr. Minor your primary melanoma doctor. You're not done– not by a long shot! You're just got to get with a winning team. Remember– you are bound and determined to go to Hawaii this Fall, aren't you?! Well, gird your loins and make it happen.

O-o-o-h-h-h, Denise! Poor honey! You really did have a bad week, didn't you? What you need now is a big hug (( HUG!! )). Actually, a lot of hugs. I hope you are getting them from your friends and family.

It's always a blow when we get disappointing scan results. Even when we half expect it, it's a real downer when you see progression on the scans. That's normal. And as for you general oncolgist in Sacramento? Well, my mother always told me that the words I have in mind are not lady-like, so I won't say them. 

Look at it this way… I'm sure you have read dozens of posts on this forum from people who are newly diagnosed with Stage IV melanoma. They always ask, "What do I need to do?" And we always say, "First, get yourself to a treatment center that has a whole team specializing in melanoma." We always say that, right? The reason is, general oncologists work with all different kinds of cancer– breast cancer, lung cancer, colon cancer, etc. etc. For a cancer whose treatment is  fairly standardized, that's proably OK. Or for someone who is on a maintenace dose of some drug. A general oncologist can monitor overall health, side effects, blood tests, etc. 

But melanoma has no "standard" treatment. It's always been a weird bugger, and a lot of new and different tests and treatments have been coming out in the last 2 or 3 years with even more now in clinical trials. How can you expect a general oncologist to keep up with all that stuff? And keep up with new developments in breast cancer and lung cancer and colon cancer, and so on. That's just not humanly possible. 

If your local oncologist seems to be throwing up his hands and saying, "There's nothing more I can do." that's becase he's tried everything HE knows. It does NOT mean that he has tried everything out there! As Al would say, his quiver is empty.''

I assume that getting to San Francisco is a hassle for you. However, I think that it is now clear that Dr. Minor has more experience with melanoma, he has a whole team of radiation oncologists, medical oncologists, neurologists, etc with melanoma experience, and he's "up" on the literature and the clinical trials. I think he is going to have to become your primary melanoma doctor now. He still has a lot of arrows in his quiver. 

As for hospice, I'm a firm believer that anyone diagnosed with Stage IV melanoma should sign up for home hospice care. They provide so much help and support. They're really nice and really do understand the physical and emotional  complexities and the side effects of cancer treatment. It used to be that hospice would only take you if you had reached the end of the line for treatments and were just waiting to die. But in recent years (I think because of a change in Medicare and Medicaid rules), many hospcie organizations started taking people who are stil being treated. They just make your life a whole lot easier while you are undergoing treatment. And if you recover, you just say, "Thank you very much. Good bye" and that's that. 

I am very, very glad that you asserted yourself and discovered that you need to more sophisticated SRS machine than you could get in Sacramento. Good for you! Now be just as assertive and make Dr. Minor your primary melanoma doctor. You're not done– not by a long shot! You're just got to get with a winning team. Remember– you are bound and determined to go to Hawaii this Fall, aren't you?! Well, gird your loins and make it happen.

Denise,

I remember your first post on this board, not knowing what to do, not knowing what melanoma mean, not knowing how to deal with the health insurance. After a couple of weeks you had educated yourself so well that you seemed to be one of the experts here. You are amazing! Your situation now is still frightning, I can imagine, but you are so strong that I believe you are some of the people that can really beat the beast. Keep sticking to your plan, decide what you want (some help at home might be good to easen normal day life), but never never let other people give you up when you are not ready to give up!

Send you positive thaughts over the Atlantic,

Jenny

Denise,

I remember your first post on this board, not knowing what to do, not knowing what melanoma mean, not knowing how to deal with the health insurance. After a couple of weeks you had educated yourself so well that you seemed to be one of the experts here. You are amazing! Your situation now is still frightning, I can imagine, but you are so strong that I believe you are some of the people that can really beat the beast. Keep sticking to your plan, decide what you want (some help at home might be good to easen normal day life), but never never let other people give you up when you are not ready to give up!

Send you positive thaughts over the Atlantic,

Jenny

Denise,

I remember your first post on this board, not knowing what to do, not knowing what melanoma mean, not knowing how to deal with the health insurance. After a couple of weeks you had educated yourself so well that you seemed to be one of the experts here. You are amazing! Your situation now is still frightning, I can imagine, but you are so strong that I believe you are some of the people that can really beat the beast. Keep sticking to your plan, decide what you want (some help at home might be good to easen normal day life), but never never let other people give you up when you are not ready to give up!

Send you positive thaughts over the Atlantic,

Jenny

The roller coaster is very crazy at times. My wife is 35 and we have been down the hospice road. That was a very hard time until we meet with the team in our area and realized how convient it made things while she recovered from surgery. She is stage 4 and has not had a great response to IPI. During IPI treatments she had little to no side effects. IPI can take many months to show a response.She recovered from surgery with 4 stars and now we have said good bye to Hospice as POW mentioned. We were checked for the Merck PD1 trial but turned down and now are in discussion with BMS PD1 clinical trial. We are scheduled for July 7th to start. Just keep fighting as are we and doors seem to always be opeining. 

The roller coaster is very crazy at times. My wife is 35 and we have been down the hospice road. That was a very hard time until we meet with the team in our area and realized how convient it made things while she recovered from surgery. She is stage 4 and has not had a great response to IPI. During IPI treatments she had little to no side effects. IPI can take many months to show a response.She recovered from surgery with 4 stars and now we have said good bye to Hospice as POW mentioned. We were checked for the Merck PD1 trial but turned down and now are in discussion with BMS PD1 clinical trial. We are scheduled for July 7th to start. Just keep fighting as are we and doors seem to always be opeining. 

The roller coaster is very crazy at times. My wife is 35 and we have been down the hospice road. That was a very hard time until we meet with the team in our area and realized how convient it made things while she recovered from surgery. She is stage 4 and has not had a great response to IPI. During IPI treatments she had little to no side effects. IPI can take many months to show a response.She recovered from surgery with 4 stars and now we have said good bye to Hospice as POW mentioned. We were checked for the Merck PD1 trial but turned down and now are in discussion with BMS PD1 clinical trial. We are scheduled for July 7th to start. Just keep fighting as are we and doors seem to always be opeining. 

Hi,

I'm so sorry to hear this news, but you do still have options. One of the previous responses was correct about Ipi not crossing into the brain, but they were also correct that it's the immune cells that matter and they DO cross into the brain. I am a scientific person and often rely on reading the medical/scientific research when discussing options with my local and specialist oncologists. I am also 2/3 of the way through a 3 week course of WBR (for 7+ brain mets) and started Ipi myself just over a week ago. There was one clinical trial conducted with Ipi looking specifically at patients with brain mets. The results showed that people with brain mets responded at the same rate as those without brain mets (roughly 20% or so of the patients got a response from Ipi), but for those that got a response, the tumor shrinkage/control in the brain was just as good as it was in the rest of the body. So even though the drug doesn't cross into the brain, if you get a response from Ipi with other mets you should get just as good a response in your brain. Hopefully with the Ipi and some SRS you'll beat it back and continue on enjoying life.

If Ipi doesn't do it, there's still the chemo options, which do work very well for some people- including in the brain. Before I was diagnosed, one of my mentors was a melanoma survivor who had brain mets. At the time of her diagnosis there was no Ipi, no BRAF inhibitors, no PD1, not even IL2 or interferon. She got WBR and chemo and has had no recurrance for over 20 years, so it does happen. Don't give up hope. If nothing else, maybe these therapies will hold you stable long enough to get into a trial. I'm hoping for the same (well, I'm hoping for a good response from Ipi for both of us, but at the very least a chance at trials) for myself. 

You're not out of options yet. Though it may be a good idea to think about the possibility of hopice, etc should the need arise I don't think you should give up yet. Keep fighting- you never know what might be the miracle drug for you.

-Eva

Hi,

I'm so sorry to hear this news, but you do still have options. One of the previous responses was correct about Ipi not crossing into the brain, but they were also correct that it's the immune cells that matter and they DO cross into the brain. I am a scientific person and often rely on reading the medical/scientific research when discussing options with my local and specialist oncologists. I am also 2/3 of the way through a 3 week course of WBR (for 7+ brain mets) and started Ipi myself just over a week ago. There was one clinical trial conducted with Ipi looking specifically at patients with brain mets. The results showed that people with brain mets responded at the same rate as those without brain mets (roughly 20% or so of the patients got a response from Ipi), but for those that got a response, the tumor shrinkage/control in the brain was just as good as it was in the rest of the body. So even though the drug doesn't cross into the brain, if you get a response from Ipi with other mets you should get just as good a response in your brain. Hopefully with the Ipi and some SRS you'll beat it back and continue on enjoying life.

If Ipi doesn't do it, there's still the chemo options, which do work very well for some people- including in the brain. Before I was diagnosed, one of my mentors was a melanoma survivor who had brain mets. At the time of her diagnosis there was no Ipi, no BRAF inhibitors, no PD1, not even IL2 or interferon. She got WBR and chemo and has had no recurrance for over 20 years, so it does happen. Don't give up hope. If nothing else, maybe these therapies will hold you stable long enough to get into a trial. I'm hoping for the same (well, I'm hoping for a good response from Ipi for both of us, but at the very least a chance at trials) for myself. 

You're not out of options yet. Though it may be a good idea to think about the possibility of hopice, etc should the need arise I don't think you should give up yet. Keep fighting- you never know what might be the miracle drug for you.

-Eva

Hi,

I'm so sorry to hear this news, but you do still have options. One of the previous responses was correct about Ipi not crossing into the brain, but they were also correct that it's the immune cells that matter and they DO cross into the brain. I am a scientific person and often rely on reading the medical/scientific research when discussing options with my local and specialist oncologists. I am also 2/3 of the way through a 3 week course of WBR (for 7+ brain mets) and started Ipi myself just over a week ago. There was one clinical trial conducted with Ipi looking specifically at patients with brain mets. The results showed that people with brain mets responded at the same rate as those without brain mets (roughly 20% or so of the patients got a response from Ipi), but for those that got a response, the tumor shrinkage/control in the brain was just as good as it was in the rest of the body. So even though the drug doesn't cross into the brain, if you get a response from Ipi with other mets you should get just as good a response in your brain. Hopefully with the Ipi and some SRS you'll beat it back and continue on enjoying life.

If Ipi doesn't do it, there's still the chemo options, which do work very well for some people- including in the brain. Before I was diagnosed, one of my mentors was a melanoma survivor who had brain mets. At the time of her diagnosis there was no Ipi, no BRAF inhibitors, no PD1, not even IL2 or interferon. She got WBR and chemo and has had no recurrance for over 20 years, so it does happen. Don't give up hope. If nothing else, maybe these therapies will hold you stable long enough to get into a trial. I'm hoping for the same (well, I'm hoping for a good response from Ipi for both of us, but at the very least a chance at trials) for myself. 

You're not out of options yet. Though it may be a good idea to think about the possibility of hopice, etc should the need arise I don't think you should give up yet. Keep fighting- you never know what might be the miracle drug for you.

-Eva

Hi Denise,

I agree with Kyle, there seem to be too many options that you have not yet tried and it appears Dr Minor has more knowledge (I am on the east coast so I am just going by what I have read in this site).  Don't give up and keep fighting.  YOU are the boss, and you have final say. 

Brendan

Hi Denise,

I agree with Kyle, there seem to be too many options that you have not yet tried and it appears Dr Minor has more knowledge (I am on the east coast so I am just going by what I have read in this site).  Don't give up and keep fighting.  YOU are the boss, and you have final say. 

Brendan

Hi Denise,

I agree with Kyle, there seem to be too many options that you have not yet tried and it appears Dr Minor has more knowledge (I am on the east coast so I am just going by what I have read in this site).  Don't give up and keep fighting.  YOU are the boss, and you have final say. 

Brendan

I know how devastated you feel, I was told 3 weeks ago everything is being done that can be done and what were my wishes in the event of something sudden happening. I am 43 with 3 school age kids. I am still here and fighting! You can read my profile – I stopped Zel to do Ipi but had trouble. I had SRS during Ipi.

Today I had a stable brain MRI, 7 mos after SRS, 14 mos after first brain met diagnosed. Incredibly, I am 6 wks into Merck’s anti PD1 trial with a huge tumor in my heart, blocking blood flow to my lungs. I am ever hopeful in God’s plan for me.

Ipi+SRS has some great potential – they think the SRS turbo-charges the Ipi. Never give up!

Amy

I know how devastated you feel, I was told 3 weeks ago everything is being done that can be done and what were my wishes in the event of something sudden happening. I am 43 with 3 school age kids. I am still here and fighting! You can read my profile – I stopped Zel to do Ipi but had trouble. I had SRS during Ipi.

Today I had a stable brain MRI, 7 mos after SRS, 14 mos after first brain met diagnosed. Incredibly, I am 6 wks into Merck’s anti PD1 trial with a huge tumor in my heart, blocking blood flow to my lungs. I am ever hopeful in God’s plan for me.

Ipi+SRS has some great potential – they think the SRS turbo-charges the Ipi. Never give up!

Amy

I know how devastated you feel, I was told 3 weeks ago everything is being done that can be done and what were my wishes in the event of something sudden happening. I am 43 with 3 school age kids. I am still here and fighting! You can read my profile – I stopped Zel to do Ipi but had trouble. I had SRS during Ipi.

Today I had a stable brain MRI, 7 mos after SRS, 14 mos after first brain met diagnosed. Incredibly, I am 6 wks into Merck’s anti PD1 trial with a huge tumor in my heart, blocking blood flow to my lungs. I am ever hopeful in God’s plan for me.

Ipi+SRS has some great potential – they think the SRS turbo-charges the Ipi. Never give up!

Amy

I wish you the best with a dr that is not a giving-up type.

Amy

I wish you the best with a dr that is not a giving-up type.

Amy

I wish you the best with a dr that is not a giving-up type.

Amy