› Forums › Cutaneous Melanoma Community › Need help, please!
- This topic has 22 replies, 6 voices, and was last updated 13 years ago by
Jan in OC.
- Post
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- April 7, 2011 at 3:43 pm
Hi everyone. I have been here a few times as my husband's battle progresses. But now i am asking for help (a hard thing for me). We have been going to UCLA for the last year and a half. He is stage IV with mets throughout his organs, largest in the liver, plus brain mets that he has SRS for. He has tried interferon, BRAF, SRS, IPI. Some days we are accepting of his treatment, other days frustrated. UCLA does not actually take a" team" approach to his treatment and I'm not sure the doctors actually talk to each other!
Hi everyone. I have been here a few times as my husband's battle progresses. But now i am asking for help (a hard thing for me). We have been going to UCLA for the last year and a half. He is stage IV with mets throughout his organs, largest in the liver, plus brain mets that he has SRS for. He has tried interferon, BRAF, SRS, IPI. Some days we are accepting of his treatment, other days frustrated. UCLA does not actually take a" team" approach to his treatment and I'm not sure the doctors actually talk to each other! Last week, the doctor told us the IPI was not working and asked what we wanted to do now, like he had no other options for us. My husband is a little depressed.
As a side note, after a frustrating year of NO success with a loan modification, the bank is taking our house at the end of this month and we need a new place to live by Easter (need a few miracles here). My husband lost his ability to work and is on SSI. I also take care of my disabled 21 yr old daughter who lives with us. SoCal is too expensive even to rent on our reduced income and we cannot afford to live here.
We have used up all of our financial assets in this cancer battle (lost my business) and filed for bankruptcy last month. His family just doesn't seem to care or understand what we are going through (although we have explained a million times!). A lot of our "friends" have backed away, like they think melanoma is contagious. Most days, I feel like our family is all alone in this.
My husband said that if UCLA cannot offer us any other options, then right now we can move anywhere in the country for treatment……..in under 3 weeks LOL
Where can we move to, near a great melanoma center that offers him the best chance of survival? Yes, I reviewed the list of centers that Michael posted, but which ones are the best? We are seriously considering MD Anderson in Houston. Don't know any of the doctors there? Recommendations??
I do not have the time to fly anywhere to find a place to rent, so will be going in blind. Do not know what areas to look online, big city. Please feel free to email me at [email protected] for any help or concrete suggestions.
We have many friends praying for us, but I need more that that now. I am doing everything I can to keep my family together and need HELP!!!!!! No stress here, nope, nope. just feel like I am running out of time, struggling, and don't know what to do.
Jan, wife to Dirk
- Replies
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- April 7, 2011 at 4:16 pm
Houston is one of the lowest cost of living in the US. MD Anderson is self referral and all the melanoma specialists are good. They have many clinical trials and a social work department that can help in lots of ways. I know they have lists of hotels / residences that offer medical discounts to help get you started looking for a place to rent.
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- April 7, 2011 at 4:16 pm
Houston is one of the lowest cost of living in the US. MD Anderson is self referral and all the melanoma specialists are good. They have many clinical trials and a social work department that can help in lots of ways. I know they have lists of hotels / residences that offer medical discounts to help get you started looking for a place to rent.
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- April 7, 2011 at 4:28 pm
I checked clinicaltrials.gov, and the fact that there are brain mets may exclude your husband from the E7080 trials which were mentioned a few times on this board.
Here are the three trials. You may wish to look at the exclusion criteria. The first, and the third one talk about having treated brain mets in the criteria. (you mention SRS treatment), so maybe he can do one of those.
http://www.clinicaltrial.gov/ct2/results?term=e7080+melanoma
I think the brain mets may eliminate some of the other trials as well, but here is a list you may wish to look at.
http://www.clinicaltrial.gov/ct2/results?term=melanoma+brain&recr=Open&no_unk=Y
Maybe Temozolomide (Temodar) in a trial or by itself is a option since it crosses the blood brain barrier-or BBB.
Unless someone disagrees, I do not think that going out of state will make that much difference as the California centers will have the same access to trials.
Hopefully the docs will have some suggestions andy someone else will chime in here too.
Michael
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- April 7, 2011 at 4:38 pm
Also, as ANON stated, you can get some assistance from the cancer centers as well.
In addition, here is a list I have compiled over the last few years or so. I have not updated it recently, but maybe it can be of some assistance to you both.
Michael
Here is a list of items I post on this board from time to time. I hope one or more of these will be able to help you with the expenses. Best wishes with your treatment.
I think you can get assistance from NCI directly. I am sure you are aware that NCI is a tough place to get into, but in most cases, once you are enrolled in a trial, I believe NCI will pay for the transportation costs and for all subsequent trial-related visits for persons who do not live in the local area. In addition, you will receive a small per diem for food and lodging expenses if you are being treated as an outpatient.
Check with NCI about accommodations and travel assistance. http://bethesdatrials.cancer.gov/general-public/costs.aspx
If you write personally to airlines (Southwest) now, you may be able to get a free airline ticket. Perhaps go to their website or call them for further info.
Southwest Airlines
Charitable Giving
Free gift of commercial airline ticket
30 days notice
214-792-1300
In relation to airlines/airfare, also try:
Mercy Medical Airlift
Arranges free transportation on commercial airlines
Requires 14 day notice
888-675-1405
Miracle Flight
Transportation on private crafts like Angel Flight
Requires 10 business day notice
800-359-1711
Corporate Angel
For transportation on private corporate jets
Requires 1 week notice
800-328-1313
Corporate Angels http://www.corpangelnetwork.org/
Continental Care Force
For transportation on private crafts like Angel Flight
Requires 2 weeks notice
281-261-6626
Midwest Airlines
Miracle Miles Program
Free commercial tickets on Midwest through their gift of miles
Requires 10 day notice
414-570-4118
Northwest Airlines
Reduced fare coupon books for Clinical Trial patients
800-328-1111
Aircare Alliance: http://www.aircareall.org/
I also think Joes House http://www.joeshouse.com/ is something to consider for free/low cost housing for cancer patients and families. It is a non-profit organization, which serves cancer patients, their advocates, and social workers by providing a national online directory of local lodging accommodations.
Not meaning to go into overkill, but here is a list of other financial resources I have found. There are links and phone numbers for local, statewide and out-of-state foundations to help families and patients during crisis.
http://www.cancer.org- On right side of page enter your zip code, then scroll down to "Local Resources", then click on "Assistance", there you will find all the local, statewide and even out-of-state resources for help financially and more. This website has numerous financial, medical and more information on crisis help. (800) ACS-2345
http://www.cancercare.org- click on "I'm a cancer patient" or "I am a loved one", then click on "Assistance", then click on "Financial Assistance", then download financial assistance form. (800) 813-HOPE
http://www.patientadvocate.org- click on "Personal Help", then "Request Assistance", then fill out the form below. (800) 532-5274
http://www.terminallyill.org- click on "Downloads/Forms", then click on "Application for Financial Assistance". (866) 668-1724
http://www.netwish.org- Netwish provides assistance, up to $500 for those who are able to demonstrate a financial need.
http://www.Modestneeds.org- provides help with bills. Click on apply for help.
http://www.foodlion.com/LionsPride.asp- Click on bottom of page on “Request for assistance form”.
Hope Cancer Fund: 866-334-HOPE Provides a one time financial assistance program to families up to $150.
Also:
1. Cancer Care may give you a one time "Grant" of $125.00 to help towards gas.
2. American Cancer Society may also reimburse you .20 a mile for gas for treatments, visits and tests.
3. vickiesangelwalk.org is a Financial Assistance for people that can not pay bills due to loss of income. http://www.vickiesangelwalk.org/- Click on Financial Aid
4. Also there is an organization that you may want to check out that is called Crossing The Finish Line. It is for young cancer patients (to age 50). If you qualify they will send you on an all expense paid vacation to Florida. They pay for you and your caregiver. It is a break from all the surgeries and treatments.
Also try the Livestrong Foundation for small grants.
If patient has insurance but still can’t pay, here are a few sites that may offer help when patients call:
1 Co-Pay Relief – http://www.copays.org or 866-512-3861
2. Patient Access Network Foundation – http://www.patientaccessnetwork.org or 866-316-7263
3. Patient Services Incorporated – http://www.uneedpsi.org or 800-366-7741
4. The Healthwell Foundation – http://www.healthwellfoundation.org or 800-675-8416
http://www.beyondtherainbow.org– Click on forms, then download/print out the application. (973) 628-7767 (Helps CT, PA, NY & NJ Residents)
There is an organization that is called Crossing The Finish Line.
It is for young cancer patients ( to age 50). If you qualify they will send you on an all expense paid vacation to Florida. They pay for you and your caregiver. It is a break from all the surgeries and treatments.
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- April 7, 2011 at 4:38 pm
Also, as ANON stated, you can get some assistance from the cancer centers as well.
In addition, here is a list I have compiled over the last few years or so. I have not updated it recently, but maybe it can be of some assistance to you both.
Michael
Here is a list of items I post on this board from time to time. I hope one or more of these will be able to help you with the expenses. Best wishes with your treatment.
I think you can get assistance from NCI directly. I am sure you are aware that NCI is a tough place to get into, but in most cases, once you are enrolled in a trial, I believe NCI will pay for the transportation costs and for all subsequent trial-related visits for persons who do not live in the local area. In addition, you will receive a small per diem for food and lodging expenses if you are being treated as an outpatient.
Check with NCI about accommodations and travel assistance. http://bethesdatrials.cancer.gov/general-public/costs.aspx
If you write personally to airlines (Southwest) now, you may be able to get a free airline ticket. Perhaps go to their website or call them for further info.
Southwest Airlines
Charitable Giving
Free gift of commercial airline ticket
30 days notice
214-792-1300
In relation to airlines/airfare, also try:
Mercy Medical Airlift
Arranges free transportation on commercial airlines
Requires 14 day notice
888-675-1405
Miracle Flight
Transportation on private crafts like Angel Flight
Requires 10 business day notice
800-359-1711
Corporate Angel
For transportation on private corporate jets
Requires 1 week notice
800-328-1313
Corporate Angels http://www.corpangelnetwork.org/
Continental Care Force
For transportation on private crafts like Angel Flight
Requires 2 weeks notice
281-261-6626
Midwest Airlines
Miracle Miles Program
Free commercial tickets on Midwest through their gift of miles
Requires 10 day notice
414-570-4118
Northwest Airlines
Reduced fare coupon books for Clinical Trial patients
800-328-1111
Aircare Alliance: http://www.aircareall.org/
I also think Joes House http://www.joeshouse.com/ is something to consider for free/low cost housing for cancer patients and families. It is a non-profit organization, which serves cancer patients, their advocates, and social workers by providing a national online directory of local lodging accommodations.
Not meaning to go into overkill, but here is a list of other financial resources I have found. There are links and phone numbers for local, statewide and out-of-state foundations to help families and patients during crisis.
http://www.cancer.org- On right side of page enter your zip code, then scroll down to "Local Resources", then click on "Assistance", there you will find all the local, statewide and even out-of-state resources for help financially and more. This website has numerous financial, medical and more information on crisis help. (800) ACS-2345
http://www.cancercare.org- click on "I'm a cancer patient" or "I am a loved one", then click on "Assistance", then click on "Financial Assistance", then download financial assistance form. (800) 813-HOPE
http://www.patientadvocate.org- click on "Personal Help", then "Request Assistance", then fill out the form below. (800) 532-5274
http://www.terminallyill.org- click on "Downloads/Forms", then click on "Application for Financial Assistance". (866) 668-1724
http://www.netwish.org- Netwish provides assistance, up to $500 for those who are able to demonstrate a financial need.
http://www.Modestneeds.org- provides help with bills. Click on apply for help.
http://www.foodlion.com/LionsPride.asp- Click on bottom of page on “Request for assistance form”.
Hope Cancer Fund: 866-334-HOPE Provides a one time financial assistance program to families up to $150.
Also:
1. Cancer Care may give you a one time "Grant" of $125.00 to help towards gas.
2. American Cancer Society may also reimburse you .20 a mile for gas for treatments, visits and tests.
3. vickiesangelwalk.org is a Financial Assistance for people that can not pay bills due to loss of income. http://www.vickiesangelwalk.org/- Click on Financial Aid
4. Also there is an organization that you may want to check out that is called Crossing The Finish Line. It is for young cancer patients (to age 50). If you qualify they will send you on an all expense paid vacation to Florida. They pay for you and your caregiver. It is a break from all the surgeries and treatments.
Also try the Livestrong Foundation for small grants.
If patient has insurance but still can’t pay, here are a few sites that may offer help when patients call:
1 Co-Pay Relief – http://www.copays.org or 866-512-3861
2. Patient Access Network Foundation – http://www.patientaccessnetwork.org or 866-316-7263
3. Patient Services Incorporated – http://www.uneedpsi.org or 800-366-7741
4. The Healthwell Foundation – http://www.healthwellfoundation.org or 800-675-8416
http://www.beyondtherainbow.org– Click on forms, then download/print out the application. (973) 628-7767 (Helps CT, PA, NY & NJ Residents)
There is an organization that is called Crossing The Finish Line.
It is for young cancer patients ( to age 50). If you qualify they will send you on an all expense paid vacation to Florida. They pay for you and your caregiver. It is a break from all the surgeries and treatments.
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- April 7, 2011 at 4:42 pm
Here is something I found concerning MD Anderson from a previous poster at MPIP, it talks about MD Anderson writing off the bills etc (I underlined it):
Entered by: Margie1958 id: 1240461525 City: Lake Mary State: FL Zip Code: 32746 Willing to accept e-mail: yes Look-up Margie1958's e-mail address Patient's first name: Margery Margie1958 is the patient Initially diagnosed: 6/99 Breslow Depth: unknown Clark Level: 4 Patient is currently: Stage 4 Treatment History
In June 1999, my dermatologist Dr. Forconni called and told me to get
in touch with Dr. Chambers (surgeon) and MD Anderson of Orlando, that
I had melanoma and it was very serious. So I went to Dr. Chambers,
she scheduled surgery for me and removed the melanoma from my
back/neck. I went and saw Dr. Kayaleh (think I spelled right) and he
set me up to do interferon, I tolerated it pretty well, until a lump
in my neck popped out, Dr. Chambers took a biopsy and found it to be
melanoma, so I had 4 1/2 round of biochemotherapy, I had to be
hospitalized for 5 days every 28 days, after my scan I was clean. I
didn't have insurance at the time, Dr. Chambers wrote off my bill at
Christmas time and MD Anderson helped me with their bills as well as
the drug company….well 7 years later, I went to my primary doctor
and he ordered xrays of my chest…they saw something, so then it was
a CTscan and they saw more, my doctor told me to go see the
oncologist. I went back to MD Anderson of Orlando and am under the
care of Dr. Pennock and Jean Edwards clinical nurse. I was a stage IV,
I had lymph nodes behind the wind pipe, spot on the lung and my
adrenal gland was infected with melanoma. They suggested I try a
clinical study, which consisted of Paxitaol, Carboplatin and
Avastin/placebo. I am currently on round 20, soon to be 21. I get
CTscans every other treatment. The cancer is finally gone, once again
I am free, but am still on the study, until they close. I was the only
one at MD Anderson who responded so well…I am now only on
Avastin/placebo, but I'm pretty sure it's the real thing by some of
the symptoms I have…but without MD Anderson and the doctors I don't
know where I would be today, this time I am going to stop being so
stubborn and do what I am suppose to do. Without my family,Dr.,
nurse, friends and GOD I don't know if I could have done this. I hope
this beast stays away forever…I do know though that once it comes
back it will come back usually again…when who knows?
-
- April 7, 2011 at 4:42 pm
Here is something I found concerning MD Anderson from a previous poster at MPIP, it talks about MD Anderson writing off the bills etc (I underlined it):
Entered by: Margie1958 id: 1240461525 City: Lake Mary State: FL Zip Code: 32746 Willing to accept e-mail: yes Look-up Margie1958's e-mail address Patient's first name: Margery Margie1958 is the patient Initially diagnosed: 6/99 Breslow Depth: unknown Clark Level: 4 Patient is currently: Stage 4 Treatment History
In June 1999, my dermatologist Dr. Forconni called and told me to get
in touch with Dr. Chambers (surgeon) and MD Anderson of Orlando, that
I had melanoma and it was very serious. So I went to Dr. Chambers,
she scheduled surgery for me and removed the melanoma from my
back/neck. I went and saw Dr. Kayaleh (think I spelled right) and he
set me up to do interferon, I tolerated it pretty well, until a lump
in my neck popped out, Dr. Chambers took a biopsy and found it to be
melanoma, so I had 4 1/2 round of biochemotherapy, I had to be
hospitalized for 5 days every 28 days, after my scan I was clean. I
didn't have insurance at the time, Dr. Chambers wrote off my bill at
Christmas time and MD Anderson helped me with their bills as well as
the drug company….well 7 years later, I went to my primary doctor
and he ordered xrays of my chest…they saw something, so then it was
a CTscan and they saw more, my doctor told me to go see the
oncologist. I went back to MD Anderson of Orlando and am under the
care of Dr. Pennock and Jean Edwards clinical nurse. I was a stage IV,
I had lymph nodes behind the wind pipe, spot on the lung and my
adrenal gland was infected with melanoma. They suggested I try a
clinical study, which consisted of Paxitaol, Carboplatin and
Avastin/placebo. I am currently on round 20, soon to be 21. I get
CTscans every other treatment. The cancer is finally gone, once again
I am free, but am still on the study, until they close. I was the only
one at MD Anderson who responded so well…I am now only on
Avastin/placebo, but I'm pretty sure it's the real thing by some of
the symptoms I have…but without MD Anderson and the doctors I don't
know where I would be today, this time I am going to stop being so
stubborn and do what I am suppose to do. Without my family,Dr.,
nurse, friends and GOD I don't know if I could have done this. I hope
this beast stays away forever…I do know though that once it comes
back it will come back usually again…when who knows?
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- April 7, 2011 at 8:05 pm
((((((((((((((((((((((((((Jan))))))))))))))))))))))))
i don't have any answers for you.. i am here for my best friend… keeping up with what is new as far as treatments etc..
he is ok for the moment.. but i want to be prepared if things should turn for the worse.. which they seem to do on a regular basis…
i am just horrified to hear of your situation.. my heart is broken for you…
all i can do is pray for you.. and WILL pray for you… i will have my church pray for you next sunday..
May God bless you… i just cannot imagine how hard this all is for you.
my love…
Michele
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- April 7, 2011 at 8:05 pm
((((((((((((((((((((((((((Jan))))))))))))))))))))))))
i don't have any answers for you.. i am here for my best friend… keeping up with what is new as far as treatments etc..
he is ok for the moment.. but i want to be prepared if things should turn for the worse.. which they seem to do on a regular basis…
i am just horrified to hear of your situation.. my heart is broken for you…
all i can do is pray for you.. and WILL pray for you… i will have my church pray for you next sunday..
May God bless you… i just cannot imagine how hard this all is for you.
my love…
Michele
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- April 7, 2011 at 4:28 pm
I checked clinicaltrials.gov, and the fact that there are brain mets may exclude your husband from the E7080 trials which were mentioned a few times on this board.
Here are the three trials. You may wish to look at the exclusion criteria. The first, and the third one talk about having treated brain mets in the criteria. (you mention SRS treatment), so maybe he can do one of those.
http://www.clinicaltrial.gov/ct2/results?term=e7080+melanoma
I think the brain mets may eliminate some of the other trials as well, but here is a list you may wish to look at.
http://www.clinicaltrial.gov/ct2/results?term=melanoma+brain&recr=Open&no_unk=Y
Maybe Temozolomide (Temodar) in a trial or by itself is a option since it crosses the blood brain barrier-or BBB.
Unless someone disagrees, I do not think that going out of state will make that much difference as the California centers will have the same access to trials.
Hopefully the docs will have some suggestions andy someone else will chime in here too.
Michael
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- April 7, 2011 at 4:48 pm
The University of Colorado Cancer Center in Denver is another option. They'd offer the same treatment options as MD Anderson, Denver is a pretty low cost city, and it might be less of a culture shock than Houston! Best wishes.
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- April 7, 2011 at 8:08 pm
Thanks for the response, Michael. As I said before, we cannot afford anyplace to rent in SoCal in a decent neighborhood. I know there are melanoma centers in CA, but we can't afford to live here!!!! And the doc at UCLA has nothing else to offer us. I have been reviewing clinical trials to see if he is eligible for anything. I have never had any response from UCLA for requests of help. They are so overworked and underfunded!
I have called ACS several times with little success. Joe's Place, etc… is just for lodging while getting treatment. I still need a place for my family to live. I have checked into a few other organizations on the list, either we are too old (55), don't live in the right state, don't have the right type of cancer, or they are out of funding for that particular cancer. I have reviewed these lists before looking for help. I have heard lots of reasons not to help! I am just running out of time and energy and patience. I'm tired of hearing no!
My husband doesn't really want to live in the desert (too hot, can't be in the sun, bad lymphadema, etc). He doesn't want to live in the cold and snow!! Thanks Rich for Denver, very pretty there, but it is too high in altitude for my daughter, she has fluid on the brain and cannot live in higher altitudes. (not even allowed to fly). I am trying to find a place that is not too far from treatment options for both of them (gas is at $4/gal), yet still be in a climate they can live with, and we can afford it financially. Challenging!!!!!!
Thanks
Jan
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- April 7, 2011 at 8:08 pm
Thanks for the response, Michael. As I said before, we cannot afford anyplace to rent in SoCal in a decent neighborhood. I know there are melanoma centers in CA, but we can't afford to live here!!!! And the doc at UCLA has nothing else to offer us. I have been reviewing clinical trials to see if he is eligible for anything. I have never had any response from UCLA for requests of help. They are so overworked and underfunded!
I have called ACS several times with little success. Joe's Place, etc… is just for lodging while getting treatment. I still need a place for my family to live. I have checked into a few other organizations on the list, either we are too old (55), don't live in the right state, don't have the right type of cancer, or they are out of funding for that particular cancer. I have reviewed these lists before looking for help. I have heard lots of reasons not to help! I am just running out of time and energy and patience. I'm tired of hearing no!
My husband doesn't really want to live in the desert (too hot, can't be in the sun, bad lymphadema, etc). He doesn't want to live in the cold and snow!! Thanks Rich for Denver, very pretty there, but it is too high in altitude for my daughter, she has fluid on the brain and cannot live in higher altitudes. (not even allowed to fly). I am trying to find a place that is not too far from treatment options for both of them (gas is at $4/gal), yet still be in a climate they can live with, and we can afford it financially. Challenging!!!!!!
Thanks
Jan
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- April 7, 2011 at 8:21 pm
I heard that when you do a clinical trial at the National Cancer Institute it is free. I think they are based in Bethesda, MD. You would also be close to other cancer centers, but I don't know if these centers offer reduced or free rates. Contact NCI to verify that they are free for everything. I'm guessing that the DC area is expensive, but I suspect that there are nice affordable neighborhoods to be found. Good luck!
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- April 7, 2011 at 8:21 pm
I heard that when you do a clinical trial at the National Cancer Institute it is free. I think they are based in Bethesda, MD. You would also be close to other cancer centers, but I don't know if these centers offer reduced or free rates. Contact NCI to verify that they are free for everything. I'm guessing that the DC area is expensive, but I suspect that there are nice affordable neighborhoods to be found. Good luck!
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Tagged: cutaneous melanoma
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