Metastatic Malignant Melanoma
Has anyone else been through this?? Is pain, or lack of, an indicator of anything here??
Comments
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Keep hoping
Dear asking,
I am a malignant mealnoma survivor, too, and there were many times that I did not feel the pain from tumors. It didn't mean that the disease was not progressing; it was. There is hope, however! Don't give up! Ask your husband's doctors if they know what kind of Melanoma he has. There is a clinical trial that I am on that is very promising.
The trial is sponsored by Dana- Farber and Harvard. It is a clinical trial of the drug, Gleevec. It is open to Melanoma patients who have mucosal or Lenticular Melanoma. I have been on it for one month and am having a great response in tumor size and it seems to be very effective for many cancers, including Leukemia and Lymphoma. It is worth looking into. Any hope that you have is something to hang on to during these scary and frustrating days for you. Please know that we care and you are in my prayers. I have been battling this disease for over 18 months and was only given 6 months to live at the time of my diagnosis.
If you'd like to talk, please internal mail me anytime. I would be happy to listen and offer my support.
Much love,
Hollyberry
P.S., there are many clinical trials for Melanoma; if one doesn't work, keep trying. I am alive today because I keep trying new protocols!1 -
Great Informationhollyberry said:Keep hoping
Dear asking,
I am a malignant mealnoma survivor, too, and there were many times that I did not feel the pain from tumors. It didn't mean that the disease was not progressing; it was. There is hope, however! Don't give up! Ask your husband's doctors if they know what kind of Melanoma he has. There is a clinical trial that I am on that is very promising.
The trial is sponsored by Dana- Farber and Harvard. It is a clinical trial of the drug, Gleevec. It is open to Melanoma patients who have mucosal or Lenticular Melanoma. I have been on it for one month and am having a great response in tumor size and it seems to be very effective for many cancers, including Leukemia and Lymphoma. It is worth looking into. Any hope that you have is something to hang on to during these scary and frustrating days for you. Please know that we care and you are in my prayers. I have been battling this disease for over 18 months and was only given 6 months to live at the time of my diagnosis.
If you'd like to talk, please internal mail me anytime. I would be happy to listen and offer my support.
Much love,
Hollyberry
P.S., there are many clinical trials for Melanoma; if one doesn't work, keep trying. I am alive today because I keep trying new protocols!
Thank you for your input - and may God continue to bless you with your own struggle and personal journey. We will keep you in our prayers.
We are heading back down to MD Anderson next week for more test and will now have good questions to ask because of your response back. Honestly, it never occurred to us to ask what kind of melanoma.......
Are you familiar with the treatment cocktail that my husband is on? He was in soooo much pain prior to the spine operation, and then immediately following. To see him without pain is baffling to me. But you say that pain or no pain is not an indication of what is happening? Are there any signs to look for (outside of the normal tests - brain scans, mri's, etc....) that would be an indication of how the treatments he is on now are affecting the cancer?
May we ask how you were diagnosed? My husband had NO outward sign - to all purposes it is being assumed that his melanoma started internally..... He has lesions in his lung, liver, brain, bones (multiple: spine, ribs, sacrum, etc...), sinus cavity, brain, etc.....
I don't understand the no pain though.......0 -
Melanoma the unknown cancerjustasking said:Great Information
Thank you for your input - and may God continue to bless you with your own struggle and personal journey. We will keep you in our prayers.
We are heading back down to MD Anderson next week for more test and will now have good questions to ask because of your response back. Honestly, it never occurred to us to ask what kind of melanoma.......
Are you familiar with the treatment cocktail that my husband is on? He was in soooo much pain prior to the spine operation, and then immediately following. To see him without pain is baffling to me. But you say that pain or no pain is not an indication of what is happening? Are there any signs to look for (outside of the normal tests - brain scans, mri's, etc....) that would be an indication of how the treatments he is on now are affecting the cancer?
May we ask how you were diagnosed? My husband had NO outward sign - to all purposes it is being assumed that his melanoma started internally..... He has lesions in his lung, liver, brain, bones (multiple: spine, ribs, sacrum, etc...), sinus cavity, brain, etc.....
I don't understand the no pain though.......
Justasking,
Holly is your best source of information but I will tell you my husband has stage 3 malignant melanoma that has metastisized. His sentinel node was 5 cm and crumbled during surgery and he had no pain prior to that, just a highly suspicious mole that bled and he continued to ignore.
He ended up with all the tests and 2 major surgeries and 20 lymph nodes being removed. Now he is on Interferon, and I'm not familiar with your husband's cocktail but I can tell you I've done alot of research and this unfortunately for all of us is one of the most aggressive cancers. It can attack organs as it did your husband and there can be no visual signs. It also spreads through the skin, blood, bones and organs. The brain spot is cause for concern but if they caught that early he may have a fighting chance.
You need to google everything on his lab report, if you don't have it go get it tomorrow. Read it until you know it front and backwards. Make sure you find every term, what you can't find on the internet go find in medical books in your library. Arm yourself with as much information as you can and question everything they do. I have had to be a strong advocate for my husband and fought many battles but he is still here nine months later and they didn't think he would last long when this began. And fight your insurance tooth and nail for anything they try to deny you and if necessary get an Attorney like we did. Just get your battle gear on and fight because you don't have time to procrastinate with melanoma.
And remember you're online family is here to post with and to chat in the chatrooms. People are wonderful and you get alot of support. Hang in there and leave your nice face at home and put your game face on and buy some time for you hub. You are in our prayers.
Good Luck and God Bless
LH0 -
Gleevechollyberry said:Keep hoping
Dear asking,
I am a malignant mealnoma survivor, too, and there were many times that I did not feel the pain from tumors. It didn't mean that the disease was not progressing; it was. There is hope, however! Don't give up! Ask your husband's doctors if they know what kind of Melanoma he has. There is a clinical trial that I am on that is very promising.
The trial is sponsored by Dana- Farber and Harvard. It is a clinical trial of the drug, Gleevec. It is open to Melanoma patients who have mucosal or Lenticular Melanoma. I have been on it for one month and am having a great response in tumor size and it seems to be very effective for many cancers, including Leukemia and Lymphoma. It is worth looking into. Any hope that you have is something to hang on to during these scary and frustrating days for you. Please know that we care and you are in my prayers. I have been battling this disease for over 18 months and was only given 6 months to live at the time of my diagnosis.
If you'd like to talk, please internal mail me anytime. I would be happy to listen and offer my support.
Much love,
Hollyberry
P.S., there are many clinical trials for Melanoma; if one doesn't work, keep trying. I am alive today because I keep trying new protocols!
Keep hoping,
I too am a Stage IV malignant melanoma survivor. I say survivor because I discovered the first tumor over a year ago and have experienced wonderful quality of life since. I have metastatic disease which means the cancer has spread through the blood to several locations. Right now I am not on any chemo nor am I in any pain. In fact I have never taken any chemo because doctors have seen very little success and because I have chosen quality of life rather than quantity. I feel great and am doing everything, with no limitations.
My question is - I have just been approved for Gleevec. Should I take it? Will it change my quality of life? I am just wondering if it actually prolongs life. I know I can't be cured, but of course, I want to live. I will say I am very peaceful about my decisions so far. I am a Christian and I have many, many people praying for me. That has given me the peace that I feel and I do believe in miracles. I actually wondering if since my cells were tested and the doctors think my cancer will respond to Gleevec that maybe this a sign from God to try it. It is so hard to know.
thanks for writing.
Jeanne0 -
no pain
I too have Stage IV malignant melanoma and have no pain. I have been "healthy" for 13 months. The original tumor was not painful, it was just large and in a very uncomfortable location. It was removed in Nov. and in Jan. I flew to the holy lands and Egypt. In March I went to Disney World and spent 6 day with my son. Life is good and I'm squeezing as much fun out of it as I can. I am a Christian and every day I thank God for that day. I try not to worry, because that only spoils the moments I have. I don't know how long God wants me on this earth, but as long as I'm here I'm going to rejoice.
So please enjoy this time while your husband is not in pain.
Jeanne0 -
Gleeveclivinginthemoment said:no pain
I too have Stage IV malignant melanoma and have no pain. I have been "healthy" for 13 months. The original tumor was not painful, it was just large and in a very uncomfortable location. It was removed in Nov. and in Jan. I flew to the holy lands and Egypt. In March I went to Disney World and spent 6 day with my son. Life is good and I'm squeezing as much fun out of it as I can. I am a Christian and every day I thank God for that day. I try not to worry, because that only spoils the moments I have. I don't know how long God wants me on this earth, but as long as I'm here I'm going to rejoice.
So please enjoy this time while your husband is not in pain.
Jeanne
Dear Living,
Your attitude is wonderful and I wish you all the best in your battle. I have been taking Gleevec for 4 months and have had MIRACULOUS results; I had metastases everywhere and the Gleevec has gotten me down to 3 tumors. It is miraculous because I had many brain tumors, as well, and I was not supposed to be a candidate for this protocol but, the radiologists thought my brain tumors were vascular abnormalities. When I should have been on my death-bed, the Gleevec went to work and destroyed all of the tumors in my brain and most in my body.
I would highly recommend you get on this medication. It has saved my life; as I stated earlier, I did not feel any pain from the tumors spreading but, they did. The Gleevec may give you a few belly aches in the beginning and some edema, but it is soooo worth it!! I wouldn't be alive today without this medication.
Good luck to you; you are in my thoughts and prayers.I, too, am assured of my place in Heaven but, I have a family to raise and many more things to accomplish before I go home to rest. Wishing you the best
Hollyberry0 -
testing for gleevachollyberry said:Gleevec
Dear Living,
Your attitude is wonderful and I wish you all the best in your battle. I have been taking Gleevec for 4 months and have had MIRACULOUS results; I had metastases everywhere and the Gleevec has gotten me down to 3 tumors. It is miraculous because I had many brain tumors, as well, and I was not supposed to be a candidate for this protocol but, the radiologists thought my brain tumors were vascular abnormalities. When I should have been on my death-bed, the Gleevec went to work and destroyed all of the tumors in my brain and most in my body.
I would highly recommend you get on this medication. It has saved my life; as I stated earlier, I did not feel any pain from the tumors spreading but, they did. The Gleevec may give you a few belly aches in the beginning and some edema, but it is soooo worth it!! I wouldn't be alive today without this medication.
Good luck to you; you are in my thoughts and prayers.I, too, am assured of my place in Heaven but, I have a family to raise and many more things to accomplish before I go home to rest. Wishing you the best
Hollyberry
Your post gives me so much hope, My husbands melanoma started under his toenail and he is being tested now. he just became stage 4 with melanoma in his lungs.
Thanks again.0 -
Started Gleevec for Mucousal melanoma in March 2009hollyberry said:Keep hoping
Dear asking,
I am a malignant mealnoma survivor, too, and there were many times that I did not feel the pain from tumors. It didn't mean that the disease was not progressing; it was. There is hope, however! Don't give up! Ask your husband's doctors if they know what kind of Melanoma he has. There is a clinical trial that I am on that is very promising.
The trial is sponsored by Dana- Farber and Harvard. It is a clinical trial of the drug, Gleevec. It is open to Melanoma patients who have mucosal or Lenticular Melanoma. I have been on it for one month and am having a great response in tumor size and it seems to be very effective for many cancers, including Leukemia and Lymphoma. It is worth looking into. Any hope that you have is something to hang on to during these scary and frustrating days for you. Please know that we care and you are in my prayers. I have been battling this disease for over 18 months and was only given 6 months to live at the time of my diagnosis.
If you'd like to talk, please internal mail me anytime. I would be happy to listen and offer my support.
Much love,
Hollyberry
P.S., there are many clinical trials for Melanoma; if one doesn't work, keep trying. I am alive today because I keep trying new protocols!
Was mis-diagnosed from 2002-2006. Went to stage IV in March 2007. On iL-2 2007-2008 stable for 20 months. Melanoma went wild, started Gleevec in March 2009 - Stable again. Like to talk to you about the gleevec effects. Usually on MPIP.org as JerryfromFauq. How do I internal mail you?0 -
I'm wondering if you didhollyberry said:Keep hoping
Dear asking,
I am a malignant mealnoma survivor, too, and there were many times that I did not feel the pain from tumors. It didn't mean that the disease was not progressing; it was. There is hope, however! Don't give up! Ask your husband's doctors if they know what kind of Melanoma he has. There is a clinical trial that I am on that is very promising.
The trial is sponsored by Dana- Farber and Harvard. It is a clinical trial of the drug, Gleevec. It is open to Melanoma patients who have mucosal or Lenticular Melanoma. I have been on it for one month and am having a great response in tumor size and it seems to be very effective for many cancers, including Leukemia and Lymphoma. It is worth looking into. Any hope that you have is something to hang on to during these scary and frustrating days for you. Please know that we care and you are in my prayers. I have been battling this disease for over 18 months and was only given 6 months to live at the time of my diagnosis.
If you'd like to talk, please internal mail me anytime. I would be happy to listen and offer my support.
Much love,
Hollyberry
P.S., there are many clinical trials for Melanoma; if one doesn't work, keep trying. I am alive today because I keep trying new protocols!
I'm wondering if you did this trial. I had breast cancer. My Oncology Surgeon 's specialities are breast cancer and melanoma, he was involved in this study:
http://www.mystlukesonline.org/about/news/allentown-woman-melanoma-trial.aspx0 -
Diagnosed 2006- Started Gleevec - Mucousal melanoma - March 2009
If one's primary is unknown, I recommend getting the c-kit over-expression test run on a tumor. The first c-kit test is a simple stain test that can be done by any laboratory. If positive then go for the 2nd c-kit test (C-kit DNA mutation test). If both tests are positive, then a Gleevec type chemo stands a 40-50% chance of helping one. I spend most of my time on the MPIP.org as JerryfromFauq.0 -
Gleevechollyberry said:Gleevec
Dear Living,
Your attitude is wonderful and I wish you all the best in your battle. I have been taking Gleevec for 4 months and have had MIRACULOUS results; I had metastases everywhere and the Gleevec has gotten me down to 3 tumors. It is miraculous because I had many brain tumors, as well, and I was not supposed to be a candidate for this protocol but, the radiologists thought my brain tumors were vascular abnormalities. When I should have been on my death-bed, the Gleevec went to work and destroyed all of the tumors in my brain and most in my body.
I would highly recommend you get on this medication. It has saved my life; as I stated earlier, I did not feel any pain from the tumors spreading but, they did. The Gleevec may give you a few belly aches in the beginning and some edema, but it is soooo worth it!! I wouldn't be alive today without this medication.
Good luck to you; you are in my thoughts and prayers.I, too, am assured of my place in Heaven but, I have a family to raise and many more things to accomplish before I go home to rest. Wishing you the best
Hollyberry
Not on Gleevec but Ipilumumaab and also seeing the same Miraculous results I have also not felt anything (5 brain tumors, 6 lung tumors and another dowzen in the body)... i had a tumor in the lungs bigger than my fist and one right behind it in a lymph node the same size. The two squeezed the main artery in my heart so that it was only 10 to 20 % open and through the hole thing I never felt anything.
Keep up the good fight and enjoy every day.0 -
justasking
I have Metastic Melanoma stage 4 with tumors in the brain, lungs and throughout the body. I have had no sign nor I have I ever actually felt the tumors or any other kind of pain. At its worst I would cough and not know why (I thought it had something to do with the lung tumors). The fact was I cough because the tumor in my lung and the lymoh node right behind it were so big they were choking the flow of blood to my heart so I would cough to move the tumor enough to get enough blood flow. I know that may not be what you wanted to hear but also know that I have been living with this for 5 years even when I was told I had only a few months to live. So never give up hope and always live everyday to the fullest!!!0 -
Pain with Melanoma
My mom(age 77) is Stage 1V metastatic melanoma with brain metastasis. Started on Temodar back in Feb 2010. Lung tumors grew, after clean out period started Paclitaxel without success. A 3cm tumor was removed June 9. Received 10 days radiation for small brain tumors. Began Iplimumab July 7. No side effects so far. Baseline PET scan show lesions "too numerous to count". Large tumor in her stomach causing pain. Mass on right thigh causing pain. Any thoughts as to pain control or her prognosis? Due to tumor it's difficult to get an understanding of her type of pain. Difficult to get her up and moving. Also difficult to keep her positive. The melanoma found on her lung was asymptomatic. Was found during stomach CT scan for diverticulitis Dec 2009. More aggressive than we had thought.0 -
Stage 4 metastic melanomaPamandKel said:Pain with Melanoma
My mom(age 77) is Stage 1V metastatic melanoma with brain metastasis. Started on Temodar back in Feb 2010. Lung tumors grew, after clean out period started Paclitaxel without success. A 3cm tumor was removed June 9. Received 10 days radiation for small brain tumors. Began Iplimumab July 7. No side effects so far. Baseline PET scan show lesions "too numerous to count". Large tumor in her stomach causing pain. Mass on right thigh causing pain. Any thoughts as to pain control or her prognosis? Due to tumor it's difficult to get an understanding of her type of pain. Difficult to get her up and moving. Also difficult to keep her positive. The melanoma found on her lung was asymptomatic. Was found during stomach CT scan for diverticulitis Dec 2009. More aggressive than we had thought.
Hi PamandKel,
My bro in law (35) also has tumors all over him. He is in a tremendous amount of pain due to tumors touching nerves. He has done radiation, chemo, interleukin, and just recently 2 treatments of ipilimumab...was pulled off trial Dr said not working.
This week he will go to an alternative dr to discuss further options.
It is a very aggresive cancer, he was diagnosed Nov 2009. We are totally racing against time.
A website for you to check out if you want
http://www.cancertutor.com/index.html ....lots of information, but it is helpful.
Kevin (my bro in law) takes pain med patches prescribed by dr.
feel free to e-mail me anytime.
Sarah~0 -
Stage 4 Melanoma in Lunglongingforhope said:Melanoma the unknown cancer
Justasking,
Holly is your best source of information but I will tell you my husband has stage 3 malignant melanoma that has metastisized. His sentinel node was 5 cm and crumbled during surgery and he had no pain prior to that, just a highly suspicious mole that bled and he continued to ignore.
He ended up with all the tests and 2 major surgeries and 20 lymph nodes being removed. Now he is on Interferon, and I'm not familiar with your husband's cocktail but I can tell you I've done alot of research and this unfortunately for all of us is one of the most aggressive cancers. It can attack organs as it did your husband and there can be no visual signs. It also spreads through the skin, blood, bones and organs. The brain spot is cause for concern but if they caught that early he may have a fighting chance.
You need to google everything on his lab report, if you don't have it go get it tomorrow. Read it until you know it front and backwards. Make sure you find every term, what you can't find on the internet go find in medical books in your library. Arm yourself with as much information as you can and question everything they do. I have had to be a strong advocate for my husband and fought many battles but he is still here nine months later and they didn't think he would last long when this began. And fight your insurance tooth and nail for anything they try to deny you and if necessary get an Attorney like we did. Just get your battle gear on and fight because you don't have time to procrastinate with melanoma.
And remember you're online family is here to post with and to chat in the chatrooms. People are wonderful and you get alot of support. Hang in there and leave your nice face at home and put your game face on and buy some time for you hub. You are in our prayers.
Good Luck and God Bless
LH
I had a spot that was melanoma on my scalp removed 2 years ago and each check up have been clean. Last week I go back to MD Anderson and now I have S 4 Melanoma in my lung. I have been looking at every web site and discussion board that I see about Melanoma in the lung to educate myself. Could anyone tell me if this is the best site for info or is there other links you have that will help in my understanding. I know chemo is first followed by surgery due to the location in my lung. I want to get in touch with those that are a few steps ahead of me so I know where this leads. Any help would be greatly appreciated.0 -
Stage 4 Melanoma in Lungbtschoon said:Stage 4 Melanoma in Lung
I had a spot that was melanoma on my scalp removed 2 years ago and each check up have been clean. Last week I go back to MD Anderson and now I have S 4 Melanoma in my lung. I have been looking at every web site and discussion board that I see about Melanoma in the lung to educate myself. Could anyone tell me if this is the best site for info or is there other links you have that will help in my understanding. I know chemo is first followed by surgery due to the location in my lung. I want to get in touch with those that are a few steps ahead of me so I know where this leads. Any help would be greatly appreciated.
Dear btschoon,
I am replying to your post. Hopefully this works as I've never replied to anyone before. You were asking about discussion boards etc. I personally don't have melanoma. My husband does, or I should say he did. We just found out last week that his SLNB and 2nd WLE came back clear. The website I found to be helpful was the Melanoma International Foundation (MIF). It is very easy to navigate through the website as it is divided into different stages. I found this to be the most help while my husband was going through his cancer. I still feel like part of the family and check in daily to see how everyone is doing. I hope you try it.
The following is the web address: http://melanomaintl.org/
Wishing you the best.0 -
Metastatic Malignant Melanomahollyberry said:Keep hoping
Dear asking,
I am a malignant mealnoma survivor, too, and there were many times that I did not feel the pain from tumors. It didn't mean that the disease was not progressing; it was. There is hope, however! Don't give up! Ask your husband's doctors if they know what kind of Melanoma he has. There is a clinical trial that I am on that is very promising.
The trial is sponsored by Dana- Farber and Harvard. It is a clinical trial of the drug, Gleevec. It is open to Melanoma patients who have mucosal or Lenticular Melanoma. I have been on it for one month and am having a great response in tumor size and it seems to be very effective for many cancers, including Leukemia and Lymphoma. It is worth looking into. Any hope that you have is something to hang on to during these scary and frustrating days for you. Please know that we care and you are in my prayers. I have been battling this disease for over 18 months and was only given 6 months to live at the time of my diagnosis.
If you'd like to talk, please internal mail me anytime. I would be happy to listen and offer my support.
Much love,
Hollyberry
P.S., there are many clinical trials for Melanoma; if one doesn't work, keep trying. I am alive today because I keep trying new protocols!
My wife Karon was diagnosed with this disease 12 days ago. What a whirl wind! Dr. wants to try to get her in a clinical trial at either Johns Hopkins or National Cancer Institute in Bethesda Maryland. What do you know about either of those institutions? I have been speaking to a friend who recommends the MD Anderson Hospital in Houston Texas. Feels like my heart is being ripped out of my chest. Gave her 9 to 12 months to live. I am looking for directions, don't want to make a bad decision.
Sonny0 -
Sonny,Elevatorman said:Metastatic Malignant Melanoma
My wife Karon was diagnosed with this disease 12 days ago. What a whirl wind! Dr. wants to try to get her in a clinical trial at either Johns Hopkins or National Cancer Institute in Bethesda Maryland. What do you know about either of those institutions? I have been speaking to a friend who recommends the MD Anderson Hospital in Houston Texas. Feels like my heart is being ripped out of my chest. Gave her 9 to 12 months to live. I am looking for directions, don't want to make a bad decision.
Sonny
I'm so sorry to hear about your wife Karon. My husband was diagnosed last year but doesn't sound like it had gone as far as your wifes. Please do not go by the number of months to live as who knows what treatment choices you will be making and if you might be able to beat this beast. I also have heard about MD Anderson but haven't dealt with them as we are on the West Coast. My niece and I are leaving hopefully Thanksgiving Day as she will be going to Johns Hopkins in Baltimore for a five way kidney transplant. So even thou I haven't dealt with melanoma there I have been there for kidney transplant and love the doctors and staff. I would like to believe that whatever or whoever you choose for treatment that it will work and you will have many more years to come with your wonderful wife.
My thoughts and prayers are with you.0 -
MMMElevatorman said:Metastatic Malignant Melanoma
My wife Karon was diagnosed with this disease 12 days ago. What a whirl wind! Dr. wants to try to get her in a clinical trial at either Johns Hopkins or National Cancer Institute in Bethesda Maryland. What do you know about either of those institutions? I have been speaking to a friend who recommends the MD Anderson Hospital in Houston Texas. Feels like my heart is being ripped out of my chest. Gave her 9 to 12 months to live. I am looking for directions, don't want to make a bad decision.
Sonny
A little more info on your wifes situation and where you live would be helpful, but overall I would suggest you choose a location close to home. Any of the instutions you mentioned a great melanoma centers. The question is do they offer a trail to meet your wife's needs.
I agree, disregard the numbers. I HATE that kind of attitude.
P.S. Might have better luck with your posting if you didn't hide it in the middle of another post.0
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