CancerCompass message board discussion started by Buckeye Girl on 11/26/2005 http://www.cancercompass.com/message-board/message/all,3579,0.htm Sat, 22 Nov 2008 00:00:00 GMT Sat, 22 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My brother who is 47 yrs. old, has now been diagonosed with Stage iv melanoma. He has been battling this for 5 years, has undergone 30 radiation treatments, aggressive interferon with also 3 shots a week for 14 weeks. It has now spread to lung, and liver with tumors in the liver 2.2 mm, and 1.6 mm, with 3 other lesions. THe doctors are now saying that he is a candidate for interleuken the high dose they will proceed. Does anyone now of someone that this treatment has been successful for, today he is having major back pain. When my bother asked how long he had to live, the doctor responded "two years ago I would have said 6 months, but now there is possibilities for success. I need some stright answers, he has an 8 year old son, and is married. Please respond Buckeye Girl Sat, 26 Nov 2005 00:00:00 GMT I would ask about a clinical trial for your brother. In stage 4, response rates for most therapy is poor. Interleukin is a possibility, but still has poor response rates. Still, the fact that he has made it this long is amazing. Hang in there. Let me know if you need info on clinical trials. One place to look is NCI.com under melanoma. Oncrx Tue, 29 Nov 2005 00:00:00 GMT Thanks for responding. As of yesterday, my brother is going to try a new clinical trial using 2 chemo therapy drugs combined with another drug. He was told if they use the interleuken now the doctors will not be able to try anything else, so interleuken will be a last resort. Yes, it is amazing how great he has done up until this point, his spirit and fighting attitude has been miraculous. Although he is now very....depressed for the first time in 5 years. It is very hard to know what to do. The doctors want him to quit sleeping so much and get his fight back.I want him to get up and start living again, he's still alive. I want him to smell the air, listen to laughter, and embrace the moments with those that love him so much. I want to tell him, he isn't gone yet, so get it together and keep fighting this ugly thing called cancer. I am not ready to let him go. There is still a small window of hope for a little more time here on earth. How do I help? Buckeye Girl Tue, 29 Nov 2005 00:00:00 GMT Is he on an antidepressant like Zoloft or Prozac? If he isnt I would ask for one. People who are fighting for their life need a reason to live. What is that for him? Children, family, perhaps an upcoming birthday, holiday. I would talk with him and help him find his reason. God bless. Oncrx Tue, 29 Nov 2005 00:00:00 GMT Yes, he is on Zoloft. Yes, he has a wife, and an eight year old son. He loves his job, he even worked during all of the treaments excepts, IV Interferon. He has always been the most optimistic person ever. No one could believe how he worked during all of this. It isn't money, either. His job has been great to him, and his insureance has been 100% paid, except for a few minor bills. His wife just recently has not been very compassionate, avoiding him majorly.He has been at my parents home staying during this last bout of treament because he's lives 4 hours away and his doctors are by my parents. My sister-in-laws parents live up the road from parents and has been hibernating there with my nephew. I can't understand her behavior, and I amtrying to be compassionate with her, but in the meantime my brother is suffering BIG TIME emotionally. I don't know whether to talk to her about it or not. I don't want to compound a stressful, and hurtful situation, and she is the wife. I know this is not helping him wither. I need more advice. I can only imagine how hard this all has been on their marriage. Help. Buckeye Girl Tue, 29 Nov 2005 00:00:00 GMT I think you could talk to her. She may be unaware of how she is acting toward her husband. This is bound to be stressful on her also. Remind your brother all the people he is valuable to. Here is a great story about value. A well-known speaker started off his seminar by holding up a $20.00 bill. In the room of 200, he asked, "Who would like this $20 note?" Hands started going up. He said, "I am going to give this $20 to one of you but first, let me do this. He proceeded to crumple up the 20 dollar bill. He then asked, "Who still wants it?" Still the hands were up in the air. Well, he replied, "What if I do this?" And he dropped it on the ground and started to grind it into the floor with his shoe. He picked it up, now crumpled and dirty. "Now, who still wants it?" Still the hands went into the air. My friends, we have all learned a very valuable lesson. No matter what I did to the money, you still wanted it because it did not decrease in value. It was still worth $20. Many times in our lives, we are dropped, crumpled, and ground into the dirt by the decisions we make and the circumstances that come our way. We feel as though we are worthless. But no matter what has happened or what will happen, you will never lose your value. Dirty or clean, crumpled or finely creased, you are still priceless to those who LOVE and ADMIRE YOU. The worth of our lives comes not in what we do or who we know, but by WHO WE ARE. Count your blessings, not your problems. And remember: amateurs built the ark, professionals built the Titanic that sank. If God brings you to it, He will bring you through it. - Author Unknown - Oncrx Tue, 29 Nov 2005 00:00:00 GMT Thank you so... much for the uplifting story. It is a great way to put things in perspective. My brother gets to go home tonight just for 2 days, and will be back for more tests etc before he begins his new treatment and clinical trial. Going home should help him a little bit with his depression. Are you a cancer survivor? DO you know anything about the trial of using 2 chemo drugs combined with a newer drug? If so, do you know any outcomes? I know my brother will not be cured at this point, but do you know of any survival rates with this type of treatment? It is hard to know what to say sometimes to him. I feel guilty when I just do the normal everyday things for my family, and friends, when I Think about him and all he's been through already with more to come it's hard to find happiness. Maybe I am a little depressed too, especially when it is around the holidays. Does this make sense or maybe I just am not explaining it in the right way. Buckeye Girl Tue, 29 Nov 2005 00:00:00 GMT I am an oncology pharmacist at a large hospital, not a survivor, so I interact with oncology patients daily. If you know the names of the drugs or the name of the trial, I could find more information. I think I understand how you feel, guilty just to be happy. How is your faith? We are all going to die. Its a part of life. Perhaps you feel its too early for him, but then who is to say any one of us wont die in a car wreck on the way home from work today. Our time here is neither permanent nor guarenteed. Does your brother believe he is going to heaven? Thats something to look forward to, not something to dread. God Bless. Oncrx Wed, 30 Nov 2005 00:00:00 GMT Dear Traci S., You can go to the web site by Chiron who manufactures Interleukin, and they will have survivors listed. I contacted one in Owensboro, KY and she told me all about her history with the drug. She is a survivor of several years now. If you go to the web phone book and look up their names and cities, you might be able to find their phone numbers. Prayerful Thu, 08 Dec 2005 00:00:00 GMT I am very sad to say that my brother passed away from melanoma on December 26th surrounded by all of those who loved him. He fought and was brave until the very end. I hope the medical field can find a good treatment for this type of cancer. remind all your loved ones to protect their skin. Melanoma cases are on the rise, please be aware and thank you to all of those who responded to my mailings and God bless you all. Buckeye Girl Thu, 29 Dec 2005 00:00:00 GMT I am so sorry for your loss. I loss my husband just 7 weeks ago from Melanoma also. It is so aggressive---3 months from diagnosis to death in our case. The only blessing---he did not have any pain even though he had tumors everywhere (spleen, liver, lungs, and bone). I am still in shock. He was very healthly(did not smoke, took care of himself (weight wise, exercised, took vitamins) The week before he was diagnosed with stage 4 and sent home to die, he rode his bike for 3 hours. I feel it is a very scary cancer--silent until too far along. Prayerful Prayerful Mon, 02 Jan 2006 00:00:00 GMT When you say your brother was battling melanoma for 5 years, is that since he had it removed from his skin. What did he do doing the 5 years to fight it? I am curious because my husband was told that radiation did not work on melanoma because it was caused by the Sun. (Sunburns in particular). The doctors did not offer anything for him. Prayerful Prayerful Mon, 02 Jan 2006 00:00:00 GMT Yes. My brother had it for awhile. It began on is head, 6 mths. prior to being diagnosed a dermatolisgist removed a spot from his head but DID NOT Biopsy it, 1st mistake.It later was diagnosed as Stage III.(6 mths Later).He had a majot head and neck surgery to remove the cancer and lymph nodes. He was well for awhile with some suspicious spots being removed. He continued with 3&6 mth. checkups for several years. Then, this past March after a Supposed melanoma specialist missed an enlarge lymph node near his ear, he had a partial neckectomy, followed by 30 radiation treatments, a month of aggressive interferon thru IV's daily, then followed by 3 shots a week. The cancer had spread to his lungs, and liver, was very sick (dr.'s said it was the interferon treatments) but was most likely from the cancer progression. He was diagnosed again the day after Thanksgiving and died a month later. Radiation does not help melanoma, he did have some shemo in his later days that helped his painful symptoms but was to weak to continue. It was too late. He was 47 yrs. old. and had a young family.We tried to talk to him about going to MB ANderson in TX, or Sloan-Kettering, or John Hopkins, but refused. Radiation nor interferon helped my brother in any way. It just made his quality of life he had left poor. There is no cure for melanoma. He was the melanoma miracle that lived longer than expected. Melanoma is very scary, and dangerous. I am so sorry for your loss, and understand your pain. I have had a hard time as has the rest of my family. A minister told me and others that God heals in different ways, he healed my brother by taking him to heaver, and this statement has given some peace. Buckeye Girl Tue, 03 Jan 2006 00:00:00 GMT Thank you for the response. I went to a grief counseling group and was told the same thing--the Lord healed him by taking him to heaven--yes, it did help somewhat. I am so sorry for your brother's family. We have 8 year old grandsons who were very close to him, and I know what they are missing now. I can't imagine the pain your sister in law and children are in. I will keep you all in my prayers. Prayerful Prayerful Tue, 03 Jan 2006 00:00:00 GMT Dear Prayerful, since you mentioned your family members, I would like to remind you and those you loved, that melanoma also, has genetic links. There are digital scans that can be done for approx. $100 per person, as a precaution because of the genetic links. That person who has undergone the scan will be allowed to keep the scan disk, and that person will be able to give this to doctors if you have moles, etc. you are watching.(or if you are not watching, but would like to be more in control of your health)Insurance companies normally do not cover this, but it could be the best $100.00 anyone has every spent. I wasn't sure if anyone had mentioned to monitor immediate family members freckels, moles, skin markings, etc. It does have gentic links. BE CAUTIOUS!!!Each person needs a prescription for this scan. Melanoma is considered the "orphan cancer" but is on the rise. Forecasters predict an epedemic due to tanning beds etc. I read that it is the no. 1 killer of women ages 30-45yrs. of age. If this is true, that is alarming. My brother's family, and my own immediate family have had things removed and my other younger brother has had to have mapping done frequently. He does not tan, he burns. Tanning beds are unhealthy, but it will not be realized until it is too late. Melanoma does travel fast, that is why the medical field was amazed how well by brother had done for such a long period of time for melanoma. He wasn't in pain until the final months. It is a bizarre disease. Keep in touch, if you would like, and remember to try to STAY STRONG and HOPEFUL that scientists will find some straegies that work for this disease. God bless. Buckeye Girl Tue, 03 Jan 2006 00:00:00 GMT Thank you for the information. I have never heard of a digital scan. How do we ask for it? Thru a dermatologist or MD? Yes, I am worried about my daughters and their 4 (very fair skin) sons. One has a pool and lives outside in the summer. I have mentioned how dangerous sunburns are, but now that they have lost their Dad, I think they are going to be more aware. Our dermatologist never did a CT scan on my husband after they found melanoma on his skin. He just told him to come to the office every 4 months and he would look at his skin for more spots. The same week that he did his 4 month checkup at the dematologist and got a"good report" , he found a lump under his arm pit, and was sent for a CT scan by his regular MD. It showed tumors everywhere--liver, spleen and lungs. So, anything that my family can do to prevent a repeat of that would be helpful. Thanks. Prayerful Wed, 04 Jan 2006 00:00:00 GMT Hi, sorry it has been awhile. Lots of things going on. Yes, you can ask a dermatologist or MD for this prescription. If your husband had a melanoma specialist, that doctor would be a great choice to get the information. If you cannot find the info, you can call UPMC Medical Center in Pittsburgh, PA, for this information. Being fair skinned means being cautious and safety awareness. Lots of sunscreen. Out of curiosity, did your husband have blood work done or a pet scan once he was diagnosed with melanoma? Did he see a specialist? I hope you are doing well. I still am trying to absorb the fact that my brother is gone. I miss his phone calls and the sound of his voice. I know time will make things better, but there will always be a void in my life. Write back if you want. Buckeye Girl Sun, 22 Jan 2006 00:00:00 GMT Thank you for taking the time to get back to me. No, his dermatologist did not do any blood tests nor a PET scan. He just had him come into the office every 4 months for a look at his skin to see if there were any more spots. My husband trusted him and we did not know the dangers of melanoma (going internal at some point). I am so sorry for your loss. Prayerful Mon, 23 Jan 2006 00:00:00 GMT Be aware! Interferon and Radiation does not work for Melanoma if it has spread to more than one place. You must have bio-chemotheapry to fight this disease which is a combination of cancer drugs and you must be hospitlized. Dean in Georgia Mon, 23 Jan 2006 00:00:00 GMT  On 1/23/2006 Dean in Georgia wrote:Be aware! Interferon and Radiation does not work for Melanoma if it has spread to more than one place. You must have bio-chemotheapry to fight this disease which is a combination of cancer drugs and you must be hospitlized. Please give me more info on this.  My daughter has received the Dartmouth regime and now may receive biotherapy with Interlukon 2, done in the hospital. Smurph226 Tue, 12 Dec 2006 00:00:00 GMT My brother was 48 when diagnosed with Stage 4 RCC in March 2006.  He went through radiation and the removal of his kidney before going to UCLA for the interleuken series, finishing in June 2006.  It was extremely difficult but he completed almost all doses during the three separate visits (about 1 week each time).  His RCC had metasticized in his lower lumbar region.  He elected to have surgery in March 2007 as it caused severe back pain and the tumor had not reduced.  They actually removed portions of his vertabra and replaced it with cadavor bone.  More than 13 hours of surgery.  I flew home from Morocco to be with him at UCLA and from Baghdad just have his surgery on his spine.  He just left his oncologist a couple weeks ago and had no signs of cancer.  He's been in a back brace for 3 months, now reduced to a much small brace.  He is currently at our parents home in the midwest for a family reunion, flying from AZ.  He is walking 2 -3 miles a day and getting stronger.  It has been a tough 1 1/2 years but we are blessed to be where we are now.  I wanted to write this just to let you know there is plenty of reason to have hope.  Best of Luck.    Desertsky Sat, 21 Jul 2007 00:00:00 GMT