Find integrated support resources for cancer patients at our helpful online melanoma forum. Visit us at CancerCompass.com to research your options and get the information you need. http://www.cancercompass.com/message-board/cancers/melanoma/1,0,119,11.htm Thu, 23 May 2013 00:00:00 GMT Thu, 23 May 2013 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Well hubby is now on his 4th trial medication. Yervoy did not work.  After just 3 doses there was no shrinkage.  Got first dose of PDL-1 on Tuesday, I pray this is the miracle drug they keep saying it is.  He will get an infusion every 2 weeks. Please keep us in your prayers.  Getting weaker more every day. Just got approved for disability due to fatigue.  Can only work 3 5-hour days. Its hard to see a previously active, vibrant, hard-working man regress so fast. My family and I just let him rest and don't push him. http://www.cancercompass.com/message-board/message/all,71884,0.htm lsv12 Thu, 23 May 2013 00:00:00 GMT My mother has just been diagnosed with Stage IV metastatic melanoma.  The latest scans are showing lesions in her liver, lungs, behind her kidney, some bones and the muscle in her eye.  My family is trying to plan some trips for her and family gatherings, but it is hard to know how quickly we need to plan these.  The doctor told her she would have 6-12 months, but I see her going down fast.  She can barely eat anything and we are trying things like Ensure, etc. just to keep up her strength.  She gets very tired easily and has lost 35 pounds in the last 4 months.  I'm just not sure what to expect and/or what websites I can find information about this stage and what to expect.  I appreciate any guidance.  Thanks! http://www.cancercompass.com/message-board/message/all,12022,0.htm Maria7310 Sat, 12 May 2007 00:00:00 GMT Anyone here being, or has been, treated with vervoy? I had two skin melanomas removed and apparently one of them metastizised to my liver.  The oncologist is using "Vervoy".  I cannot use the BRAF since I don't have the gene reuired for it, thus the Vervoy.  The doc says I have 4 months to a year, terminal.  I am very interested in learning if vervoy can get the job done. Thank you,   Bill   http://www.cancercompass.com/message-board/message/all,62095,0.htm nandog Mon, 26 Sep 2011 00:00:00 GMT My desmoplastic melanoma on back of neck, went to axial skeleton within three months with lyticlesions being shown on CT scan. Biopsy showed BRAF negative. Prognosis is not good for folks unfortunate to get melanoma to bone so my question- Is there anyone out there who has survived for more than 9 months with melanoma mets to bone. Hopefully a few! Thanks. Bob http://www.cancercompass.com/message-board/message/all,71829,0.htm Bahamabob Sun, 19 May 2013 00:00:00 GMT Hi,    I am a 28 y/old female who has recently been diagnosed with Stage IV melanoma of the lower spine, I had been experiencing pain in my lower back after excessive sports for approx 8 years until it became unbearable approx 6 months ago. Diagnosis has taken months and my tumour was sent from Aust to Harvard for further testing with all the pathologists here being baffled by it nature. My bone appears to have begun to grow "around the tumour and the melanocytes were encased by several different tumour types (spidle cell fibre and sheet cell are two I recall). I had the Tumour removed in late Nov, recovered quickly, have had the best specialists none of whom can really clearly explain what my prognosis is, I have since had several scans the last being only a week or so ago which showed no other lesions anywhere in my body. I am wondering if there is anyone else out ther with a similar situation? All of the specialists i have seen are unable to really explain it and most say they have "never" seen this before, I previously had Hodgkins Lymphoma as an early teen but had been in remission for over ten years when this new malignancy presented itself, the Docs say it is totally unrelated. I feel fine, fit, healthy, active and have no long term effects from the surgery to remove the tumour. I am understaking a strict diet, supplement and "positive power of the mind" regime and just wondered if there was anyone else out there who has had a similar experience as I am now being used as a case study. To me this is a great thing because they have no idea how my disease will progress (technically I do not have cancer atm anyway). I am starting precautionary Radiotherapy on Monday for 5 weeks which was my choice. Any info or feedback would be most welcomed!! http://www.cancercompass.com/message-board/message/all,70605,0.htm Spyne888 Sat, 23 Feb 2013 00:00:00 GMT Hello! I have been an RN for 26 years but hematology is NOT my field of expertise so I am stumped.  Have had a left-sided headache since Jan; wound up in hospital two weeks ago - all MRIs, CTs and CTAs normal; lab work all normal except for elevated Kappa (313); normal Lambda (122); and Kappa/Lambda ratio normal 2.6 (lab normal 1.3-2.7)  Just wondering, would a hematology consult be warranted?  Nobody even mentioned it or told me that lab level was elevated.  I just requested my records to review them myself and stumbled on it.  Dx was hemicrania continua; put on Indomethacin and it is helping but still extremely tired.............thoughts?  PLEASE?? http://www.cancercompass.com/message-board/message/all,71711,0.htm mlc623 Sat, 11 May 2013 00:00:00 GMT Hello, I am new at this and I am very sorry if I repeat a topic already talked about. I had a stage 3 melanoma removed from my thigh and after 14 staples and a 10 inch chunk of leg missing I am left with questions. I am getting ready for a second surgery due to the fact that it has spread to my lymph nodes in the groin and pelvis areas. The confusion is in the Pet Scan I had done. It shows "non hypermetabolic cystic components" in my ovary and in my thyroid.  Yes thru my lifetime I have had both of those areas treated for cysts.  Does all this mean they are now areas of cancer activity and will become future surgeries?  Does it mean that they are just areas to watch?  What is the Pet Scan trying to say? Thanks Keena003   http://www.cancercompass.com/message-board/message/all,71649,0.htm keena003 Tue, 07 May 2013 00:00:00 GMT Hi everyone! My BFF's husband was dx with stage IV in Nov of 2012, unknown primary. He had mets in lungs, arm, shin, knee and foot. In this year and a half he has had 3 tumors removed from his R forearm, tried IL-2 and was only able to sustain 4 treatments due to a fatty liver and some heart issues. Next he was on to yervoy~ then they found a sausage size tumor in his foot,that was removed~ lungs mets grew he went onto Tamador which he did for 6 mos (5 days on and 21 days off) Everything but the lung mets was gone at this point (they grew) and they found a tumor on the adrenal gland.  He had NO side effects during any of this! Constipation with Temador and that was it. At this time the adrenal tumor has grown significantly in size, lung mets are growing and they are telling him his options are very limited. He does not have the BRAF gene...right now he is scheduled to start carboplatin and taxol  on fri. Yesterday his Dr from Roswell in Buffalo NY called to say they had a clinical in Pittsburg he could get into. His wife is not sure he can make the trip...the adrenal tumor is kicking his butt~ he is now diabetic, (on metformin) his high BP of 15 yrs is suddenly very low, he is exhausted, (cortisol levels are fine) he is vomiting occasionally and has lost a lot of weight in the last 3 mos (probably 20-25lbs) and we are just lost as what to do...I'm sorry if my post is all over the place, I appreciate all and any help or guidance any of you can provide with me! http://www.cancercompass.com/message-board/message/all,71623,0.htm GailStark Sat, 04 May 2013 00:00:00 GMT Hi I never thought I'd be doing this...like the rest of you...it's damn scary. Diagnosed stage III, sentinel positive, 2nd surgery nodes were all negative (18). My oncologist suggests either Interferon -2 or a clinical trial -either Interferon or ipilimumab (Yervoy) which is now used for metatastic melanoma. Any input would be appreciated. Feeling very confused and alone right now. Thanks  Kathy http://www.cancercompass.com/message-board/message/all,62339,0.htm KathrynNY Sun, 09 Oct 2011 00:00:00 GMT PLEASE ADVISE - GIVEN WKS - MAYBE COUPLE MONTHSI have posted several times, but since Nov 19, 2012 we were non stop with cancer issues...Has MM in brain, abodomen, and liver. Did WBR and surgery of a 20 cm mass.....Later found out the tumors in brain smaller but swelling and abodomen incased with sheet of cancer...Moving to disucssion of Zolabraf, but Dr asked that husband decide as he is VERY ADVANCED. Does not think he will make it more than a couple of weeks without treatment but that the side effects will be horrible due to his current issues and that it may only prolong life by a few months and possibly make him more miserable...I am discussing with husband but doctors are not those who have actually taken the drugs and cannot tell me or him what to expect. He says that my 44 yo spouse is very advanced and that he has less possibility of survival and that he is "leaving us fast". I am scared and dying inside myself...please provide any thoughts. Ultimately the choice is my husbands but we are unsure what to do...I am a fighter and would fight fight fight, but do not want him to suffer! http://www.cancercompass.com/message-board/message/all,70472,0.htm Sweetpea4ever Wed, 13 Feb 2013 00:00:00 GMT I was scheduled to begin IL-2 in May for what we thought was Stage IV with mets to lungs but thanks to a wonderful brain scan done today, we discovered that now there is poss mets to my brain.  I have been summoned to the oncologists office first thing tomorrow.  My onc. said that this will now change everything.  I am just in awe how quickly this disease moves as I had an "Unremarkable" brain scan in Feb! Can anyone tell me what the treatment options are for brain mets?? http://www.cancercompass.com/message-board/message/all,71459,0.htm tiffanieb Tue, 23 Apr 2013 00:00:00 GMT I have had a freckle on my hand for as long as I can remember. It used to be round and always slightly raised. I am not sure how long ago but it began to fade and now there is no dark pigment but it is completely flesh toned. I'm pretty sure there was a small line of brown left in it even just a couple of weeks ago, but that is gone now. I honestly can't remember how long ago the fading began though. A few weeks ago I noticed it was raised more than usual and seems a little bigger but I can't be sure. it was kind of translucent looking, uncomfortable and itchy. It looked a little like it might be fluid filled but I tried squeezing it and nothing, even stuck a needle in it (probably a stupid idea). It's definitely not fluid filled. So I kind f let it go and forgot about it. But yesterday it got really itchy again and I started examining it more. It's not any larger on the surface of my skin, but it seems a bit more raised. The translucent quality is gone and it is now pinkish/flesh toned and is more firm. I am not sure how long ago it first became raised but it started bothering me for the first time a few weeks ago. Should I be worried about this? I feel like I should be but my husband is in the hospital fighting cancer for the second time and maybe I am just being paranoid. Please, any advice or reassurance would be appreciated. I'd post a picture but I am not sure how. http://www.cancercompass.com/message-board/message/all,71317,0.htm DrowningGirl Sun, 14 Apr 2013 00:00:00 GMT hi i have been for a mamogram and ultra sound scan on a lump i have on underside of my breast. Dr told me that the lump was only an enlarged lymph gland but that there appeared to be unusuall sized lymph glands showing up under both arm pits I have been told i need to go for a biopsy.I haven't been ill or recovering from illness.I have how ever started to loose weight about half a stone in 4 months without trying. ,i tend to sweat a lot for no reason.please could somone explain why i need this biopsy done if i have already had a scan and mamogram   http://www.cancercompass.com/message-board/message/all,71361,0.htm caskybaby Wed, 17 Apr 2013 00:00:00 GMT anyone  out there  on this plan? http://www.cancercompass.com/message-board/message/all,71251,0.htm JulyNutkin Mon, 08 Apr 2013 00:00:00 GMT Hi All....I just started a new web page trough facebook called Messing with Melanoma. I am in the beginning stages of this website, but the purpose is to share stories, support each other, and eventually raise awareness and money for melanoma. Would any of you be willing to check out the site and maybe share something? The web page is under my Facebook page name... Lauren Jenkins. http://www.cancercompass.com/message-board/message/all,71020,0.htm Ljenkins Thu, 21 Mar 2013 00:00:00 GMT  March 11 2013,  I  had a mole removed from my chest (collar bone). It turned out to be Melanoma. It was 6mm wide, 1mm deep. The plastic surgeon I was referred to is going to remove more tissue from the site with skin grafting and do a Sentinal Node biopsy. He was very confident that the cancer had not spread to the lymph nodes.  So were holding off on the surgery until May 3rd so the original site can heal  and make the skin grafting more successful. I was hoping there was someone out there that was going through a simular situation or may has already been through this. http://www.cancercompass.com/message-board/message/all,71186,0.htm lredder Thu, 04 Apr 2013 00:00:00 GMT I have a question for all of you that have had melanoma lung cancer. Back in February when I was waiting to find out what the growth was that was in my middle lobe on my right lung I could "smell" a smell that no one else new what I was talking about lasted for a couple of weeks and went away. Smelt it again 3 months after surgery, again no one could smell it, but found out that the cancer was back again in both lungs plus have it on my liver. I've done 1 month of chemo and am now smelling that smell again, I still have 1 more month of chemo left before they do a ct/pet scan to see how the drugs are attacking the cancer. My question is has anyone else with melanoma lung cancer had a odd smell that they can't tell where it's coming from. I call it the smell of cancer but my doctor and family raise there eyebrows when I mention it to them. I tell them that it has a burnt smell but I can't place what it is thats burnt. Any help or comments would be helpful   http://www.cancercompass.com/message-board/message/all,51699,0.htm bikergirl Tue, 05 Oct 2010 00:00:00 GMT Here is our story, I have been married to the most wonderful wife for 12 years now. We have been blessed with two wonderful children, our son 10, and our daughter 8. When my wife was pregnant with our daughter she was diagnosed with melanoma. She had a mole on her arm that showed all the signs and had it removed for a biopsy.  We were both shocked to hear the results of melanoma and after surgery to take an area of her arm and lymph nodes, we were told that is was gone. That was 2003. A little more than a year ago my wife started to have moderate to severe pain in her hip and after trips to her doctor and cortisone shots and PT, things seemed to be better. On May 10th this year after 12 days of headaches she went to the emergency room to get checked out. What happened this day will forever change our lives. The CT scan showed two tumors on her brain. She was admitted and had her first brain surgery two days later. She came home to recover and two weeks later went in to have her second surgery to remove the last tumor. They have both come back as stage IV melanoma. After a pet scan, bone scan, liver biopsy and hip MRI, the melenoma looks to be in her liver and hip. This week she has been in for radiation for her hip and brain. She will start treatment on Monday June 27th with ipilimumab. I am at a point now where I am more scared, worried, and ignorant to this disease. I lay awake at night with questions of what if and how come. I try my best to be strong for my Wife and kids but seem to be questioning how I should handle this. I will try to post more at a later date but needed to get this out to see if anyone is in the position. http://www.cancercompass.com/message-board/message/all,60316,0.htm ball5218 Sun, 26 Jun 2011 00:00:00 GMT Hi all, Does this look like Melanoma to you? Noticed this mole about a year ago on my lower back. I think it's gotten bigger. I'd appreciate your feedback. Thank you! http://i45.tinypic.com/16l9o9l.jpg http://i45.tinypic.com/wvvfv5.jpg http://www.cancercompass.com/message-board/message/all,71120,0.htm Moon90 Fri, 29 Mar 2013 00:00:00 GMT My brother was diagnosed with Melanoma after removal of tissue from left calf. The dye tracked to the lymph nodes in his groin and he had those removed--only bad cells were in the first nodes. He is finishing his 4th week of Interferon by drip and he is pretty week. He has managed to not have the dose reduced but he feels miserable most of the time. He starts next on shots 3 x per week for 11 months. My question is will the shots be as bad as the drip or worse? Has anyone known anyone to survive these treatments and live cancer free or does this just "buy you more time"? I hate the unknown in all of this. Thanks, Connie http://www.cancercompass.com/message-board/message/all,7617,0.htm Celeste Sun, 05 Nov 2006 00:00:00 GMT my husband just started zelboraf a wek ago has anyone been taking it and how has it done for you?  thanks http://www.cancercompass.com/message-board/message/all,70460,0.htm harley_boy Wed, 13 Feb 2013 00:00:00 GMT Is there anyone reading this that has had Stage 4 melanoma that metastasized to the brain?  He has had whole brain radiation and cyber knife.   He was diagnosed in Dec. 2011.  I have read everything I can find out about it on the internet and none of it sounded very good....but when I look at him he looks good and says he feels good.  There have been a few side effects of the radiation that I didn't pick up on....but he seems to be better now that they have him back on steroids.  Just trying to prepare myself for whatever may come.  I am grateful for each good day that he has.  I guess what I'm wanting to know is this - are they any survivors of metastatic stage 4 on this board?  I feel like I'm in the middle of a nightmare riding on a train.  It has taken me all this time to absorb what has happened to him (us).  Now I think it is time to hear all the good - the bad - and the ugly.  I'm trying to keep things normal and we keep very positive thoughts about it all.  People from all over the world have prayed for him, and me and our family - but I feel the need to hear from someone that is going through this or who has survived this.  All I've been told is that if he has a headache, vomiting or nausea that I need to call the doctor.  His next appt is a month away.  Right now I'm feeling helpless -  http://www.cancercompass.com/message-board/message/all,65178,0.htm Trying2Bcalm Fri, 23 Mar 2012 00:00:00 GMT Well, hubby has gotten his second dose of his yervoy trial at moffitt.  So far only side effect has been very itchy. We will see the results up till now on March 11. This will be his first scans since the start of trial. On the 12th he is receive the 3rd dose. I hope this is a good sign for success of the drugs. http://www.cancercompass.com/message-board/message/all,70634,0.htm lsv12 Mon, 25 Feb 2013 00:00:00 GMT Im 36 white man, brown hair and eyes.I had small blister, like ingrown hair on my mole on my inner thigh. This mole did not look like freckle, but more like this-http://i21.photobucket.com/albums/b252/milanwviz/health/MOLE I squeezed clear liquid out of it, but it looked like mole dissapired. It scabbed normaly in day or two, but i wanted to squeez more out of it, because it lloked that under the scab there is more. Scab fell of and I was left with this-http://i21.photobucket.com/albums/b252/milanwviz/health/week I got scared that is maybe skin cancer. After several days it started to heal. No itching, bleeding...and after a week it looked like this-http://i21.photobucket.com/albums/b252/milanwviz/health/week After 4 weeks it looked like this- http://i21.photobucket.com/albums/b252/milanwviz/health/week Now it looks like this. It does not appire that it grew in diameter and looks like its healing. No bleeding, itching or anything.. http://i21.photobucket.com/albums/b252/milanwviz/health/week http://i21.photobucket.com/albums/b252/milanwviz/health/week http://i21.photobucket.com/albums/b252/milanwviz/health/week http://i21.photobucket.com/albums/b252/milanwviz/health/week Still it looks like nothing I have on my body, and I do have moles, nevus, etc Thank you! http://www.cancercompass.com/message-board/message/all,70525,0.htm cinoeye Sun, 17 Feb 2013 00:00:00 GMT Good evening! My husband is stage 4 MM with liver, lung and brain. He had a 20mm mass resected this last week and home from the hospital yesterday. I need help! I feel so helpless and I hate watching him go through this! He has lost over 20 lbs since this started mid Nov and has NO appetite. I force food just to keep him going and doctors indicate that it is a side effect of cancer. That is unacceptable to me and I know that there is a med that helps with appetite - but they say it is to early. Is there anything anyone can suggest .... please! I am really stuggling and need any assistance - at the very least, someone to talk to. I just want to crawl in a corner and cry but cannot because I need to be strong for him! We havent even started the REAL treatment Yervoy...which cannot begin until some healing from the surgery. Anyone where I am with suggestions would be greatly appreciated!   Thanks in advance - Monica http://www.cancercompass.com/message-board/message/all,70024,0.htm Sweetpea4ever Thu, 17 Jan 2013 00:00:00 GMT