Melanoma who knew it could kill so violently

longingforhope

My husband is suffering from malignant metastic melanoma Stage 3. He was first diagnosed in August 2008 and has undergone 2 major surgeries and 5 weeks of Interferon IV treatments and now must suffer through 11 months of shots 3 times per week. Is there anyone out there who can relate to this cancer and offer advice to me the care giver? I have 2 teenagers, have been forced to quit my job as well as my return to college for another degree and now my husband is on permanent disability and my life consists of Oncology visits, tests, phone calls to insurance agencies, Social Security and on and on. How is one suppose to cope with so much stress at 45 yrs old?

soccerfreaks

longing:
I am NOT a melanoma survivor, longingforhope, but a head/neck cancer and lung cancer survivor, so am not unfamiliar with multiple surgeries, chemotherapy and even radiation (33 of them in a mask). My wife is a nurse, a professional caregiver, and still I saw the physical and emotional toll that caring for me during these times took on her.

What I like to remind caregivers of, as a result, is this: to be a good caregiver, you must take good care of the giver!

Be sure to take SOME time for yourself, so you can revitalize yourself and continue to give your husband the best possible support you can.

You may also be able to help yourself by finding others who can help you. Consider contacting friends and family to create a schedule for transportation to the more mundane trips (a bunch of soccer moms from teams I had coached arranged to take turns taking me to and from my radiation treatments, for example). You might contact ACS to see if they or some charitable organization they know of can help with some of these things as well. (I would, however, recommend that you ALWAYS be by his side for the trips to the Oncologist and other visits where new information will be provided or decisions will need to be made.)

Your hospital may also be able to help by offering the services of a social worker who can offer assistance with respect to negotiating the suffocating red tape that is trying to work through Social Security and insurance companies. Ask!

And please do not bury the man yet . It has, to be sure, been a tough row to hoe for both of you and for your kids as well, I am sure, and it sounds as though it will continue to be, but as long as he is fighting, as long as he continues to have the powerful support of his family that is evident in your post, there is hope!

Best wishes to you, your husband, and your family

Take care,

Joe

hollyberry

soccerfreaks said:

longing:
I am NOT a melanoma survivor, longingforhope, but a head/neck cancer and lung cancer survivor, so am not unfamiliar with multiple surgeries, chemotherapy and even radiation (33 of them in a mask). My wife is a nurse, a professional caregiver, and still I saw the physical and emotional toll that caring for me during these times took on her.

What I like to remind caregivers of, as a result, is this: to be a good caregiver, you must take good care of the giver!

Be sure to take SOME time for yourself, so you can revitalize yourself and continue to give your husband the best possible support you can.

You may also be able to help yourself by finding others who can help you. Consider contacting friends and family to create a schedule for transportation to the more mundane trips (a bunch of soccer moms from teams I had coached arranged to take turns taking me to and from my radiation treatments, for example). You might contact ACS to see if they or some charitable organization they know of can help with some of these things as well. (I would, however, recommend that you ALWAYS be by his side for the trips to the Oncologist and other visits where new information will be provided or decisions will need to be made.)

Your hospital may also be able to help by offering the services of a social worker who can offer assistance with respect to negotiating the suffocating red tape that is trying to work through Social Security and insurance companies. Ask!

And please do not bury the man yet . It has, to be sure, been a tough row to hoe for both of you and for your kids as well, I am sure, and it sounds as though it will continue to be, but as long as he is fighting, as long as he continues to have the powerful support of his family that is evident in your post, there is hope!

Best wishes to you, your husband, and your family

Take care,

Joe

take a deep breath
Dear Longingforhope,
I am a stage iv melanoma survivor and have been through 4 surgeries, interferon, 2 chemo's and am now in a clinical trial of Gleevec. It is a new drug for melanoma but, it has had much success in Leukemia, GIST tumors and some Lymphomas. It depends on the type of melanoma that your husband has, but if he qualifies, it could offer some real hope for remission.
I have mucosal melanoma and have a c-kit protein mutation- this qualifies me for the trial. There are other types of melanoma that qualify, also.
I know how scary and stressful this is for you and your husband; try to just live one day at a time. I got through the disability debacle by sending them as many reports as I had and also by having the on-line forms filled out completely. This is a difficult process,but doable. It takes 6 months to get a check and you can contact the ACS for resources in your community that can help you with practical matters such as utilities, rides to the hospital and appointments and living expenses. If you belong to a church, talk to your pastor; they can sometimes offer help, also.
Try your best to stay positive; I was given 6 months to live 10 months ago and I'm now considering going back to work, if my scans come back o.k.. You will have to do all of those things that are overwhelming you now; there really is no way around it. You will get used to it and even learn to master the art of negotiating with hospital billing departments and all manner of government agencies. You can do this! It is hard, discouraging and time-consuming but, you can do it! I did it when I was holding a bucket , trying not to throw up from chemo while talking to various agencies and officials. This is a battle that can be won. Hang in there and keep coming here for practical advice and support. There are many people here who can help.
There is also a skin cancer section that you may want to check on the discussion boards. Also, ask your doctors as many questions as you need to. Don't be afraid to sound "stupid" or annoying; you are battling a beast that can only be beat by information and diligent action.
You can internal mail me anytime you need to talk; I will do my best to help you in any way I can.
Best wishes to you and your husband,
Hollyberry

longingforhope

soccerfreaks said:

longing:
I am NOT a melanoma survivor, longingforhope, but a head/neck cancer and lung cancer survivor, so am not unfamiliar with multiple surgeries, chemotherapy and even radiation (33 of them in a mask). My wife is a nurse, a professional caregiver, and still I saw the physical and emotional toll that caring for me during these times took on her.

What I like to remind caregivers of, as a result, is this: to be a good caregiver, you must take good care of the giver!

Be sure to take SOME time for yourself, so you can revitalize yourself and continue to give your husband the best possible support you can.

You may also be able to help yourself by finding others who can help you. Consider contacting friends and family to create a schedule for transportation to the more mundane trips (a bunch of soccer moms from teams I had coached arranged to take turns taking me to and from my radiation treatments, for example). You might contact ACS to see if they or some charitable organization they know of can help with some of these things as well. (I would, however, recommend that you ALWAYS be by his side for the trips to the Oncologist and other visits where new information will be provided or decisions will need to be made.)

Your hospital may also be able to help by offering the services of a social worker who can offer assistance with respect to negotiating the suffocating red tape that is trying to work through Social Security and insurance companies. Ask!

And please do not bury the man yet . It has, to be sure, been a tough row to hoe for both of you and for your kids as well, I am sure, and it sounds as though it will continue to be, but as long as he is fighting, as long as he continues to have the powerful support of his family that is evident in your post, there is hope!

Best wishes to you, your husband, and your family

Take care,

Joe

Melanoma
Joe,
Thanks for the inspiration, this is a long road and it helps to have outside support from people that understand the depth of the disease. Try as they might friends and family just don't fully understand the load that the patient and caregiver endure.

Inspiring stories like you give me the strenght to face another day. Today was an especially hard one emotionally and I feel like I can muster the strength to do it again tomorrow. It's very hard to watch the man you have been married to for 23 years who was so vital and full of life be so depressed and in pain. He was forced into permanent disability to save our familes finances since I was forced to give up my job and nursing school this year. We both have had our crosses to bare.

Thank you for your words of wisdom, support and kindness and please drop me a line from time to time, it really does help. There has to be some light in this tunnel of darkness we are in right now. We aren't giving up the fight we just need a little push to keep going.

Take care and God Bless.

longingforhope

hollyberry said:

take a deep breath
Dear Longingforhope,
I am a stage iv melanoma survivor and have been through 4 surgeries, interferon, 2 chemo's and am now in a clinical trial of Gleevec. It is a new drug for melanoma but, it has had much success in Leukemia, GIST tumors and some Lymphomas. It depends on the type of melanoma that your husband has, but if he qualifies, it could offer some real hope for remission.
I have mucosal melanoma and have a c-kit protein mutation- this qualifies me for the trial. There are other types of melanoma that qualify, also.
I know how scary and stressful this is for you and your husband; try to just live one day at a time. I got through the disability debacle by sending them as many reports as I had and also by having the on-line forms filled out completely. This is a difficult process,but doable. It takes 6 months to get a check and you can contact the ACS for resources in your community that can help you with practical matters such as utilities, rides to the hospital and appointments and living expenses. If you belong to a church, talk to your pastor; they can sometimes offer help, also.
Try your best to stay positive; I was given 6 months to live 10 months ago and I'm now considering going back to work, if my scans come back o.k.. You will have to do all of those things that are overwhelming you now; there really is no way around it. You will get used to it and even learn to master the art of negotiating with hospital billing departments and all manner of government agencies. You can do this! It is hard, discouraging and time-consuming but, you can do it! I did it when I was holding a bucket , trying not to throw up from chemo while talking to various agencies and officials. This is a battle that can be won. Hang in there and keep coming here for practical advice and support. There are many people here who can help.
There is also a skin cancer section that you may want to check on the discussion boards. Also, ask your doctors as many questions as you need to. Don't be afraid to sound "stupid" or annoying; you are battling a beast that can only be beat by information and diligent action.
You can internal mail me anytime you need to talk; I will do my best to help you in any way I can.
Best wishes to you and your husband,
Hollyberry

Melanoma
Hollyberry,

How encouraging it is to know that a Stage IV survivor exists. Sometimes at Oncology visits you feel like they are giving you a death sentence. But we are going to continue to fight, today was just an emotionally draining day but if you could deal with the politics of the disease and be the patient then God will give me the strength to contine the fight as the caregiver.

I prayed for support from people who really understood and today God answered my prayers. We have love and support from friends and family but they just don't understand the disease like our new ACS family does. Sometime it's words of wisdom from a stranger that give you the will to go on.

Please keep encouraging others it helps more than you will ever know.

God Bless

chewysmom

I'm in a very similar situation
I'm also in the caregiver position. My husband was diagnosed with malignant metastatic melanoma (s.4) in Nov 08, has survived 2 major surgieries and is now in heavy chemo. I'm also dealing with insurance, doc appts, pills throughout the day, keeping the house together, the puppy, the job...it's overwhelming.

I feel ya....

Derrick

longingforhope and melanoma
Hi,
I am 36 yrs old and I was diagnosed with Stage 3A melanoma over 2 and one-half years ago. I had original melanoma on my back and it quickly went to the vertical growth phase and it was removed within a week of first spotting it. Yet after wide excission and sentinel node testing on nodes in my neck and underarm it was discovered that the cancer had already spread to some nodes. I then had all nodes removed a month or two afterwards. Most all of these came back ok. Yet a Stage 3A diagnoses. My cancer specialist told me that Interferon was typical choice but only showed effectiveness in about 5% or less and was barely statistically significant. Yet another drug a chemo decab. , cant spell it right now, was about 10% effective in obtaining a remission and in some of those cases a long term remission, yet i hear that like most chemos it's tough. Some specialist reccomend a combination of several drugs and more. I've also read studies on vaccine therapys, biological therapies, nano technologies and many more that are in or about to go into clinical trials. Some are showing reason for real hope. I also read that Nexium (typically prescribed for acid , other stomach problems) may work to slow or stop melanoma as well.Only Nexium though as it works differently than most anti-acid meds...as it affect the PH of the extracellular space and may in some way interfere with cancer spread rates....Also many studies suggest diets high in fruits and veg. are as effective as many chemos of the past, plus benefits from teas of all sorts are great, also i have watched a few programs stating that coffee can slow skin cancer a little as well...but some people tell me it is bad for you. I drink it anyhow. My point in all this rambling is that there are numerous and some very new cutting edge trials and experiments in the labs going on right now to fing a better treatment for melanoma and even other cancers of course. Melanoma being the highest incidence of new cancers and often very very dangerous is attracting the much needed research. I just hope they don't just put something out there for the sake of making money on it. I personally think though that most of the studies do have a very logical approach to a possible way of stopping the cancer cells. I am impressed with some of the new technologies on the horizon. A science guy myself may influence my thinking but I think God will guide us through this. I believe a cure or atleast a very effective treatment will be found for more and more cancer types in the near future. It may be too late for many of us, but those that are gone will be the pioneers who have led the way for us and who will inspire hope in the younger patients, inspire ambitious research in the minds of our scientists and doctors and will in no way be sick or die in vain. As some will go on to be in a better place, they are at the same time helping to make it better here. Whether its through a trial treatment, the courage and love of fighting the sickness or the inspiration we all leave behind. I'm constantly searching for new treatments on the horizon. I will try to post anything I find on my space. I invite anyone to chat and exhange messages by adding me as a friend. God Bless! God Speed!