My husband Stage IV

Hi,

I'm sorry your husband is going through this.

I have a few questions on what you're going through, based on my treatment experiences and interactions with my oncologists, and the experiences of others. This is a little long-winded, but probably so should your list of options from your doctors. As far as I know these are facts, and not medical advice.

1) At U of Md, is your husband seeing a melanoma specialist oncologist? Dr. Petr Hausner is listed (on aimatmelanoma.org) as one such specialist. Your experiences make me wonder if your husband is seeing non-melanoma specialists.

2) It seems unusual that when each of these spots pops up, their first reaction is that it's probably not melanoma. Do you think they're soft-pedaling you? I would want to hear things as they good or bad as they are. So far it sounds like each time they say "it's probably not stage IV melanoma" they've been proven wrong.

3) The suggestion of Leukine as a first-line systemic (drug) treatment sounds very unusual, is not FDA approved for melanoma, and is not standard of care for melanoma (as far as I know). No oncologist I've worked with has ever suggested Luekine.

4) Have they talked about Ipilimumab (aka Yervoy) or IL-2 (both of which are FDA approved melanoma treatments and standard of care for melanoma)? I was given a course of ipilimumab (Yervoy) as well as a course of IL-2. 

5) What about Zelboraf? This is another part of the standard of care for melanoma. Has he been tested for the BRAF mutation (must test positive to use Zelboraf)?

6) What about clinical trials? For example one very promising drug class on trial is called anti-PD1. Two examples in clinical trials from different companies are a) MK-3475 and b) nivolumab aka BMS- 936558. Participating in most trials requires "measurable disease" and it sounds like (unfortunately) that he probably has both the right lung and spleen. Statistically the anti-PD1 trials look very promising, as much or perhaps even more so than Yervoy/ipilimumab). In a way, not removing the "measurable disease" via surgery may be a ticket into clinical trials.  

I believe, from my experiences with 3 of my own melanoma specialist oncologists over the last 3 years, that all of these treatment options (4, 5 and 6) should have been the first treatments they talk about with you. If you're not satisfied with your care, and if your insurance allows you, have you considered changing doctors? From aimatmelanoma.org, a list of melanoma specialists in Maryland they know about is (including one from U of Md):

————————————————–

700 S Union Ave.

Havre-de-grace, MD  21078

410-398-4120

or

155 W High St

Elkton, MD  21921

410-398-4120

Promila Suri, MD

Cancer Center at GBMC

6569 N Charles St., Ste 205

Baltimore, MD  21204

443-849-3051

http://www.gbmc.org

Gary Irvin Cohen, MD

Johns Hopkins at Greenspring Station

10753 Falls Rd., No 415

Lutherville, MD  21093

410-583-2970

http://www.hopkinsmedicine.org

William Howard Sharfman, MD  

The Sidney Kimmel Comprehensive Cancer Center       *

Johns Hopkins

Melanoma Program

OSLER 624

600 North Wolfe St.  

Baltimore, MD 21287

http://www.hopkinsmelanoma.org/

Evan Lipson, MD   410-616-7660

Sinai Hospital of Baltimore

2401 W Belvedere Ave

Baltimore, MD  21215

410-601-4710

http://www.lifebridgehealth.org/sinaihospital

Pallavi Kumar, MD

University of Maryland – Greenebaum Cancer Center

22 S Green St.

Baltimore, MD  21201

410-328-7450

http://www.umgcc.org

Petr Hausner, MD, PhD

——————————————————–

Best, Kyle

Hi,

I'm sorry your husband is going through this.

I have a few questions on what you're going through, based on my treatment experiences and interactions with my oncologists, and the experiences of others. This is a little long-winded, but probably so should your list of options from your doctors. As far as I know these are facts, and not medical advice.

1) At U of Md, is your husband seeing a melanoma specialist oncologist? Dr. Petr Hausner is listed (on aimatmelanoma.org) as one such specialist. Your experiences make me wonder if your husband is seeing non-melanoma specialists.

2) It seems unusual that when each of these spots pops up, their first reaction is that it's probably not melanoma. Do you think they're soft-pedaling you? I would want to hear things as they good or bad as they are. So far it sounds like each time they say "it's probably not stage IV melanoma" they've been proven wrong.

3) The suggestion of Leukine as a first-line systemic (drug) treatment sounds very unusual, is not FDA approved for melanoma, and is not standard of care for melanoma (as far as I know). No oncologist I've worked with has ever suggested Luekine.

4) Have they talked about Ipilimumab (aka Yervoy) or IL-2 (both of which are FDA approved melanoma treatments and standard of care for melanoma)? I was given a course of ipilimumab (Yervoy) as well as a course of IL-2. 

5) What about Zelboraf? This is another part of the standard of care for melanoma. Has he been tested for the BRAF mutation (must test positive to use Zelboraf)?

6) What about clinical trials? For example one very promising drug class on trial is called anti-PD1. Two examples in clinical trials from different companies are a) MK-3475 and b) nivolumab aka BMS- 936558. Participating in most trials requires "measurable disease" and it sounds like (unfortunately) that he probably has both the right lung and spleen. Statistically the anti-PD1 trials look very promising, as much or perhaps even more so than Yervoy/ipilimumab). In a way, not removing the "measurable disease" via surgery may be a ticket into clinical trials.  

I believe, from my experiences with 3 of my own melanoma specialist oncologists over the last 3 years, that all of these treatment options (4, 5 and 6) should have been the first treatments they talk about with you. If you're not satisfied with your care, and if your insurance allows you, have you considered changing doctors? From aimatmelanoma.org, a list of melanoma specialists in Maryland they know about is (including one from U of Md):

————————————————–

700 S Union Ave.

Havre-de-grace, MD  21078

410-398-4120

or

155 W High St

Elkton, MD  21921

410-398-4120

Promila Suri, MD

Cancer Center at GBMC

6569 N Charles St., Ste 205

Baltimore, MD  21204

443-849-3051

http://www.gbmc.org

Gary Irvin Cohen, MD

Johns Hopkins at Greenspring Station

10753 Falls Rd., No 415

Lutherville, MD  21093

410-583-2970

http://www.hopkinsmedicine.org

William Howard Sharfman, MD  

The Sidney Kimmel Comprehensive Cancer Center       *

Johns Hopkins

Melanoma Program

OSLER 624

600 North Wolfe St.  

Baltimore, MD 21287

http://www.hopkinsmelanoma.org/

Evan Lipson, MD   410-616-7660

Sinai Hospital of Baltimore

2401 W Belvedere Ave

Baltimore, MD  21215

410-601-4710

http://www.lifebridgehealth.org/sinaihospital

Pallavi Kumar, MD

University of Maryland – Greenebaum Cancer Center

22 S Green St.

Baltimore, MD  21201

410-328-7450

http://www.umgcc.org

Petr Hausner, MD, PhD

——————————————————–

Best, Kyle

Hi,

I'm sorry your husband is going through this.

I have a few questions on what you're going through, based on my treatment experiences and interactions with my oncologists, and the experiences of others. This is a little long-winded, but probably so should your list of options from your doctors. As far as I know these are facts, and not medical advice.

1) At U of Md, is your husband seeing a melanoma specialist oncologist? Dr. Petr Hausner is listed (on aimatmelanoma.org) as one such specialist. Your experiences make me wonder if your husband is seeing non-melanoma specialists.

2) It seems unusual that when each of these spots pops up, their first reaction is that it's probably not melanoma. Do you think they're soft-pedaling you? I would want to hear things as they good or bad as they are. So far it sounds like each time they say "it's probably not stage IV melanoma" they've been proven wrong.

3) The suggestion of Leukine as a first-line systemic (drug) treatment sounds very unusual, is not FDA approved for melanoma, and is not standard of care for melanoma (as far as I know). No oncologist I've worked with has ever suggested Luekine.

4) Have they talked about Ipilimumab (aka Yervoy) or IL-2 (both of which are FDA approved melanoma treatments and standard of care for melanoma)? I was given a course of ipilimumab (Yervoy) as well as a course of IL-2. 

5) What about Zelboraf? This is another part of the standard of care for melanoma. Has he been tested for the BRAF mutation (must test positive to use Zelboraf)?

6) What about clinical trials? For example one very promising drug class on trial is called anti-PD1. Two examples in clinical trials from different companies are a) MK-3475 and b) nivolumab aka BMS- 936558. Participating in most trials requires "measurable disease" and it sounds like (unfortunately) that he probably has both the right lung and spleen. Statistically the anti-PD1 trials look very promising, as much or perhaps even more so than Yervoy/ipilimumab). In a way, not removing the "measurable disease" via surgery may be a ticket into clinical trials.  

I believe, from my experiences with 3 of my own melanoma specialist oncologists over the last 3 years, that all of these treatment options (4, 5 and 6) should have been the first treatments they talk about with you. If you're not satisfied with your care, and if your insurance allows you, have you considered changing doctors? From aimatmelanoma.org, a list of melanoma specialists in Maryland they know about is (including one from U of Md):

————————————————–

700 S Union Ave.

Havre-de-grace, MD  21078

410-398-4120

or

155 W High St

Elkton, MD  21921

410-398-4120

Promila Suri, MD

Cancer Center at GBMC

6569 N Charles St., Ste 205

Baltimore, MD  21204

443-849-3051

http://www.gbmc.org

Gary Irvin Cohen, MD

Johns Hopkins at Greenspring Station

10753 Falls Rd., No 415

Lutherville, MD  21093

410-583-2970

http://www.hopkinsmedicine.org

William Howard Sharfman, MD  

The Sidney Kimmel Comprehensive Cancer Center       *

Johns Hopkins

Melanoma Program

OSLER 624

600 North Wolfe St.  

Baltimore, MD 21287

http://www.hopkinsmelanoma.org/

Evan Lipson, MD   410-616-7660

Sinai Hospital of Baltimore

2401 W Belvedere Ave

Baltimore, MD  21215

410-601-4710

http://www.lifebridgehealth.org/sinaihospital

Pallavi Kumar, MD

University of Maryland – Greenebaum Cancer Center

22 S Green St.

Baltimore, MD  21201

410-328-7450

http://www.umgcc.org

Petr Hausner, MD, PhD

——————————————————–

Best, Kyle