Latest Melanoma discussions http://www.cancercompass.com/message-board/cancers/melanoma/1,0,119,11.htm Fri, 16 May 2008 00:00:00 GMT Fri, 16 May 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Is anyone taking Temador and Thalidomide for melanoma treatment and if so, how is it treating you. Are you experiencing nausea, grogginess, etc. I seem to have multiple symptoms. http://www.cancercompass.com/message-board/message/all,24061,0.htm sallad Thu, 15 May 2008 00:00:00 GMT I have a sister with mucosal melanoma. Diagnosed in 2005. Tumor removed in 2006 with an eye and 1/2 her palate.  She has had chemo and radiation and surgery.  The tumors are coming like crazy - daily.  Some will have to be removed by radiation next week.  Only chemo kept the tumors at bay but you can't stay on the chemo.  She is on pain killers now and we've contacted hospice - this is a very awful disease.  Won't eat or drink much.  It feels like the end is closeBut - I can't help but reach out - anyone - any news?  Even bad news - I just don't want to feel I failed to find the one cure.  Thanks a lot. RMS http://www.cancercompass.com/message-board/message/all,24051,0.htm My sister Thu, 15 May 2008 00:00:00 GMT For the past month my mother was doing Carac treatment on her face.  In the past she has had various basel cells removed and our family has history of Melanoma.  During the last week or so of her Carac treatment her dermatologist decided to do a punch biposy on two spots on her face (right next to the basel she had removed 5 years ago).  The results came back and the dermatologist told her that both lesions were Melanoma and one was 2mm and the other was 4mm.  He based her stage on that information and diagnosed her as Stage 2.Now, he has scheduled her for surgery to remove both growths but he told her that he couldn't schedule the surgery for 2 weeks due to her Carac treatment.  He said that her skin/face was too sensitive.  I'm worried that her doctor is not taking the right precautionary steps.  He is not encouraging her to get any tests done to make sure the cancer has not spread.  All the doctor wants to do is remove the growths.  Can someone please give me some advice.  Are these the correct steps?  Waiting 2 1/2 weeks seems to be a very long time to wait to get the melanoms removed.  Please help! http://www.cancercompass.com/message-board/message/all,23908,0.htm mariemerganser Sat, 10 May 2008 00:00:00 GMT As I read through the messages, I notice Dr. Kevin Kim at MDACC. I myself starting seeing Dr. Kevin Kim along with Dr. Jeff Myers Ent surgeorn - Dept Head. I can't say enough good enough about these doctors. They are thorough and on top of all new treatments out there. I now go in every 3 months for Pet Scans and MRI. I have traveled to John Wayne Center in CA and CU in CO. I feel that because MDA see's so many cases that I  have landed in the right place or gold standard of care.  I too have received 7 rounds of Bio-Chemo since 2004-2007 along with raditation. I am scheduled for a day surgery in August with Dr. Meyers but just started a couple of experimental drugs for Meculsal Melanoma as of today. Possibly the surgery will be defered.  If I can do anything to help or give names and numbers, please contact me.  It's the hardest for the caregiveer. As a patient we go through the process and mourn the pain our spouses, friends and love ones go through to get us healthy.  Sincerly, Chris http://www.cancercompass.com/message-board/message/all,23865,0.htm Clythgoe Thu, 08 May 2008 00:00:00 GMT Hi Everyone,This is my first posting but felt compelled to put my feelings into a message board for feedback as my wife Jane is battling with Stage 4 Malignant Melonoma which has metastisized from the initial leg tumor to her Lymph nodes in the groin and her lungs.After lengthy surgery to remove the leg tumor and lymph nodes the scans have revealed that she has 2 tumors on her lungs.I feel so desperately sad watching her struggle daily with this, as I am in the dark as to what will happen next.. Timescales etc ? I, like most people have spent what feels like thousands of hours researching for a miracle cure, but as we are now finding out, the Chemo doesn't seem to be making any difference-in fact I now think that she is worse after 2 cycles of treatment as she has developed a severe cough with continual breathlessness and extreme tiredness !.We have tried so many different "alternative remedies" ever since we found out about the cancer spreading to her lungs. I feel hopeless watching her struggle to cope with the recovery of her large leg wound knowing that the tumors spreading onto her lungs are slowly getting worse. Sadly, we never seem to get any positive news from the Oncologist and I would love to hear from other sufferers/carers who are  struggling to come to terms with the reality of MM.My thoughts go out to all who are living with this terrible cancer. http://www.cancercompass.com/message-board/message/all,23764,0.htm Grahame Mon, 05 May 2008 00:00:00 GMT Hi,I was just wondering if someone could help answer a couple of questions. My name is Brittany and I am 27 years old. I do not have melanoma, but am afraid I put myself at high risk of getting it.  I have light eyes, dark brown hair and lots of freckles and like an idiot, always wanted to be tan so from the time I was about 16 or 17 until I was 25 I went to tanning beds once, if not more times a week all year round and layed out at the pool in the summer. I know a lot of people do this, but I feel so stupid because with my skin type, I am afraid I may have really damaged my skin. For the past two years I have put sun screen on everyday, even in the winter and have not stepped foot into a tanning bed and will never again.  I just went to the dermotologist and he removed an irregular mole on my back that luckily turned out to be nothing.  He told me I should come in once a year. I want to be good about doing skin checks on myself during the year so my question is, when looking for melanoma, what am I looking for?  I have tons of moles all over and a lot that look dark brown or black but what kind of change in a mole am I looking for?  A subtle change or an obvious change?  How quickly does a melanoma change? About how long do you have to catch a mole changing and get it removed in time to save yourself from it spreading?  I am just so confused.  My derm showed me a poster and said most melanoma's look something like his poster but not all of them do.  I am afraid even if I do skin checks I will miss something because I don't really know what I am looking for, and I have so many moles and freckles too that make it hard to remember if any moles are new ones or have changed.  Sorry this message is so long but can someone give me any idea of what I am looking for?  And am I at huge risk of getting melanoma? I don't even have it but I am scared I could get it. http://www.cancercompass.com/message-board/message/all,23756,0.htm brits1981 Mon, 05 May 2008 00:00:00 GMT Hello,My daughter is 7 months pregnant and just had a small spot removed from her leg.  The Dermatologist believes it is Melanoma, though she will not know for sure for about 2 weeks.  Help!  What are the expected treatments, if it comes back malignant?  We are just getting over the cancer treatment for my husband-her Dad-and thought we were on even ground.  Enough!  http://www.cancercompass.com/message-board/message/all,23715,0.htm NHquilta Sat, 03 May 2008 00:00:00 GMT has anyone tried NEOPLAS IN TENN http://www.cancercompass.com/message-board/message/all,23708,0.htm duran Sat, 03 May 2008 00:00:00 GMT My mother in law has stage IV melanoma. It just keeps appearing at different places in her body. The last PET scan showed a fading patch on the chest wall. She has been on Temadur for almost a year. At first she was told 3 months, then the doctors kept telling her month by month, for the first 6 months she tolerated the treatments very well. Now the side effects are more uncomfortable, more exhaustion, leg aches pains & charlie horses, Nausea & vomiting, she has trouble sleeping, and in general her quality of life is not what it use to be, she just turned 80. Believe me when I tell you she use to be a fire cat. She now says that she could be on the chemo for the rest of her life. Isn't that a little much? Doesn't it get to the point where the octor might say look we need to change treatments? Or just wait for her to say enough? Another thought. Will the melanoma get to the point where it becomes stronger than the Temadur. http://www.cancercompass.com/message-board/message/all,23662,0.htm Marion Fri, 02 May 2008 00:00:00 GMT Hello, My husband was diagnosed with stage 1 melanoma 4 years ago and surgery was performed (on his arm) as well as a sentinal node biopsy...nothing spread.  He was again diagnosed with melanoma on his scalp 2 years ago, nothing spread to the lymph nodes.Just recently, his scar tissue on his arm (skin graphed) from 4 years ago began weeping clear fluid....like it was crying tears, and it didn't stop for nearly 12 hours or more.  He saw 2 doctors and they did not know the reason for this happening.  Does anyone have any idea what this could be?   http://www.cancercompass.com/message-board/message/all,23567,0.htm jade28 Tue, 29 Apr 2008 00:00:00 GMT Hi,I have just been diagnosed with melanoma.The dr went very deep to remove a moe and said i needed surgery.I was all set tohave it when my insurance company denied it.They will not budge. The hospital said they would do the surgery but not unless i came up with $6,000.00.Any ideas on hwat i could do to have this surgery?Any place where i could go for help?The places i have contacted have said they won't  help with the surgery.Any information would be greatly appreciated.    http://www.cancercompass.com/message-board/message/all,23478,0.htm CHAMP64 Sun, 27 Apr 2008 00:00:00 GMT I am writing this to get some feedback on my upcoming, first visit to an Oncologist. I had a melanoma in situ in 2005 and a recurrence on 2006. Plastic surgery first, moh's surgery second. I visit my Dermatologist every three months for checks. I had soreness in my neck at my gynecological check-up in January and he ordered a CT scan of soft tissue of neck and chest. It revealed two borderline lymph nodes. He thought that I should see an Oncologist at Duke University in Durham, North Carolina. I am scheduled on Monday,( April 28th) and wondered if anyone could give my advice on questions that I might ask.  I am scheduled for labs.  I thought someone with experience could advise me. Thanks!scottp http://www.cancercompass.com/message-board/message/all,23391,0.htm scottp Thu, 24 Apr 2008 00:00:00 GMT I Just had a second melanoma removed last week. (First was 16yrs. ago.) This one was .95 mm thick and derm guy said stage "1-B on the cusp of  1mm probably wouldn't recommend sentinel node biopsy"  just wide excision and cross your fingers. Now I'm worried and wish I would have had SNB. Given my own priors and extensive cancer in family history, I want a more definitive dx. I'm not OK with the" wait and see" on the second incident.  I'm trying to get a referral for an onc or get my GP to order a PET scan. That's what "I think" would definitive! Maybe hard to get done. Seems Dr's are quite cavalier about my cancer.  Would they feel the same if it were them??? Please advise your recommendations on PET scan.Your time to reply is sincerely appreciated!  http://www.cancercompass.com/message-board/message/all,23351,0.htm onedave Wed, 23 Apr 2008 00:00:00 GMT My dad was diagnosed two months ago with stage IV melanoma metastasized to the brain. He was on Temodar and whole brain raditation and given Decadron to control edema. He was getting better everyday, but the last 304 days he has been getting much worse. He muscle weakness has increased to the point that he can barely walk to the bathroom or even sit up. We hoped this was from a steroid induced myopathy at worst, but got a call from the doctor this morning that the results of his last MRI were not good.  He has additional swelling in the frontal lobe from hemorrhaging that was not previously there and all of the lesions are either stable or growing. Two of the mesaured lesions have grown fom 2.3 to 2.8mm and another from 6mm to 8mm. The number of lesions according to the doctor is  very high and not wirth trying to focus on an exact number at this point.  He originally gave my dad 6mos - 2yrs when he was diagnosed and even though he is getting worse says that that is as accurate as they can tell. My dad did not like to hear such a broad spectrum and wants me to ry and find out what I can for  him. I have shown him statistical data for his stage of melanoma, but he fears he has less time then the statistics. Is he just afriad of dying or is he right in thinking he has less time?The doctor has suggested tapering him off of the Decadron, and we are afraid that the swelling will get worse, but at the same time if he stays on it we are afraid of the side effects. He has a doctors appointment on Tuesday to discuss whether to continue treatment or turn to Hospice care. Everyday we wake up (when we can sleep) wondering if he made it thhrough the tnight. Can anyone that has been through this tell us what the end will most likely be like for him? I hate for the idea that he would have to suffer for weeks or months in misery. Thank you for any response or suggestions. http://www.cancercompass.com/message-board/message/all,23176,0.htm jonbisch Fri, 18 Apr 2008 00:00:00 GMT My husband was diagnosed in 2005 and has been trying temodar now for his fourth cycle.  During his third cycle they did tomotherapy along with the Temodar and things were going great.  All tumors were shrinking.  Then he got sick and also had a heart attack all within a month span of each other.  They think the treatments were part of the cause for his heart attack.  Here's the thing- has anyone else had total success with Temodar?  Before the tomotherapy combo, he had some of the tumors shrink while others continued to grow.  He was unable to take any treatments for three months due to his illness and weakness.  He has since been growing tumors like crazy.  Last week we tried another cycle of Temodar and he is also getting radiation treatments to the tumors we can see.  They just keep popping up!  We go back to our Oncologist on May 2 for more scans.  Again, can anyone relate to the inconsistant Temodar results?  Why some tumors but not all? Thanks,Kim http://www.cancercompass.com/message-board/message/all,23145,0.htm Kim T Thu, 17 Apr 2008 00:00:00 GMT I had posted yesterday but forgot to add that I had a negative CXR and LDH levels were normal.  They just palpated my lymph nodes and did a biobsy and now wide excision.  I really appreciate everyone sending input.  You are all great.  Shannon http://www.cancercompass.com/message-board/message/all,23142,0.htm momofgands Thu, 17 Apr 2008 00:00:00 GMT I recently found out that my 22yr old sister's melanoma has spread to her brain and liver. She had a mole that the family was concerned about. She found out she was pregnant and the cancer took over. Stephanie had the baby, a little girl, on March 18th and 4 weeks later we got the horrible news. She has 3 cancer massis on her back, 6 in her brain and not sure how much but in her liver as well.This has been very hard on me because not only is she my baby sister but i also had one removed 2 yrs ago that was pre melanoma. And i as well was pregnant. It was removed early and i made an appt next week to have others that have changed color to be checked out.My question is even if i catch these early they can come back? I have a two year old and this is scary stuff. http://www.cancercompass.com/message-board/message/all,23123,0.htm STEPH22 Wed, 16 Apr 2008 00:00:00 GMT Hey! I am very new to this just diagnosed in April.  Breslow 0.7mm and Clark's 3.  I am scared to death.  I have twin daughters who are 16 months old and all I can do is look at them and cry.  They are doing a wide excision on the 22nd and they (dermatolgist) is going to see me every 3 months.  Is this enough?  I don't want to miss anything.  He insist that it is plenty and he will keep a close eye on me.  Every mole on my body I see makes me crazy now.  I have over 50-100 moles.  I just am so scared!!!!!! Anything will be helpful.  I feel so selfish worrying when so many others have much larger and much more dangerous melanoma.  I am so sorry to anyone dealing with this monster.  I am a nurse which makes things even more scary!!!  Thanks for any advice - Shannon - North Carolina http://www.cancercompass.com/message-board/message/all,23110,0.htm momofgands Wed, 16 Apr 2008 00:00:00 GMT I am new to this board, but not new to Melanoma.  I had my first run in with this monster back in July 2005.  A mole on my left buttock/thigh area.  Had since very little.  Grew somewhat bigger and darkend to almost black.  The derm. took one look at it and said it was melanoma and scheduled me for surgery before getting the lab work back.  Did a very wide excision even though the spot was really small.  There was less than a 5% chance it would ever reoccur.  Nothing more than some blood work.  Went back in like clock work for the next 2 1/2 years.  Plenty of other spots removed and tested or nitro'd off.  Went for a check-up in Feb 08 and even did more blood work, lymph nodes and everything was fine.  March 24th 08, woke up while on Spring break with my kids and I had a swollen lymph node in my groin area the same side as the primary site.  Within hours of finding this myself, I had already been in surgery to have it removed.  My life has been turned upside since then, as you all know that experience all to well.  NEVER thought I would be "stage3". Single mother of two, currently on FMLA.  Will run out of sick leave in a few weeks.  I guess I will be a non-pay status.  How are we suppose to fight a disease like this when you can't miss work?  Just so much to take all at once.  My PET scan did come back with more lit up in the groin area and something in the lower right lung.  They are pretty confident it is only scar tissue.  To small at this point and it did not light up in the PET.  I don't like their approach of "wait and see" what this spot does.  In the meantime I am scheduled for a large lymph node sugery in two weeks, then will discuss more treatment options.  They are pretty sure there is more lymphs involved.  Looking into Interferon at this point, seems there aren't a whole lot options available.  Been trying to study up on trials but it all just gets so confusing.  I will not look in to anything that is not at a Phase 3 trial. I've been told they have the best chance, if any to offer hope.   I was also told that I was in a category of less than 5% to have had this come back in a lymph node.  I guess the first primary was so small I should have never had another bout with this monster.  On that note maybe I can be the rare one to find hope.  Just as we all might be that lucky one. Want to get the point across if you have been so lucky to catch it early on only the outer layer of the skin, always stay on your app. insist on blood work yearly and exam your lymph nodes.  I would also insist on a SNB after the wide excision.  Could it have caught this sooner, I'll never know.  I am just ready to move forward wih any treatments I can get, and hope this doesn't come back for along time.  It will come back, Melanoma always does.  My prayers and luck are to each and everyone of you.  I truly hope we find more options out there so that we have more hope to kill this horrible monster. http://www.cancercompass.com/message-board/message/all,23073,0.htm Kimbalas Tue, 15 Apr 2008 00:00:00 GMT hi, i was 1st diagnosised with stage 1 melanoma on my thigh in 2000. i had a melanoma insitu on my face in 2004 and now( 2008) have had a biopsy in this scar tissue and pending an answer hopefully next week. my question is has anyone had a recurrent melanoma in another area of the body ( ie thigh, face)? and if anyone has had a recurrent melanoma in scar tissue? if so what was your course of treatment? if this again is a melanoma, they have offered me to be part of a clinical vaccine trial. have any of you gone this route? thank you all for your time, any information concerning my melanoma would be greatly appreciate. have a good and healthy weekend. mamma mary http://www.cancercompass.com/message-board/message/all,22718,0.htm mammamary Sat, 05 Apr 2008 00:00:00 GMT I was diagnosed with Melanoma in 2004 stage 3/4 with the cancer in my lmph glands in my neck.  I received a dissection of the neck and also 4 weeks of bio chemo treatment in the hospital intensive care.  This last bout in June of 07, I continued to have bloody noses and I didn't feel something was right. I went for another opinion and now I have mucosal melanoma which the primary source and was not caught the first time.(Thanks to the doctor who didn't biospy it this year / Spring.)  I have received 3 more bio -chemos along with a cardia arrest because of too many drugs for nausea causing Long QT symdrom.  I also finished 35 treatments of raditation the first part of December. I'm just to the point of getting some of my energy back. I live in CO but travel back and forth to MDACC and CU for my treatment. This April I will head back for every test adn scan know to man kind. If I can help anyone with this terrible road their traveling on,  please don't hestiate to ask.   Chris http://www.cancercompass.com/message-board/message/all,22313,0.htm Clythgoe Tue, 25 Mar 2008 00:00:00 GMT My father was diagnosed with Clarks Stage 4 melanoma last week.  We are just starting the process and I have been reading a lot about it.  I read somewhere that the clarks level of staging is not as widely used anymore because there a more accurate staging.  When everyone talks about level 4, what kind of level are you refering to(clarks,etc)?  I am so scared and my heart goes out to all of you dealing with horrible disease.  Any advice or info people could offer would really be greatly appriciated.  I have conviced him to go t Roswell Park Cancer Institue (thank god we close).  I just don't know what questions to ask or what expect.  Thank you and God Bless all of you. http://www.cancercompass.com/message-board/message/all,22100,0.htm amylb Tue, 18 Mar 2008 00:00:00 GMT First thing is get to the NIH National Institutes of Health. Immunotherapy is the big thing, IL-2 , also CTL-a4 (MDX)  The chemo for this and the name starts with a D couldn't spell it. These thing have worked for me. Each did great things but never just cleaned me up totally, Untill the chemo. Did they work well together? or was it only the chemo? Not sure but 1 Lite area in all trials scans, stopped after the chemo.The next thing was filing for disability!! gave me time to fly to the hospital every 2-3 weeks for treatment, without worring about making a livin.If your doctor isn't talking about one of the items above, get the hell away from him/her.They are many trial, just check to see if the NIH is involved.Interferon? (spelling) is a joke for the most part, unless something has changed in the last 3 years.The staff a the NIH are great, I fly from Tamapa FL to BWI airport 48 round trips. I would get there around 12:00pm and by 5:30 -Full CT, Brain MRI, blood-work, sometimes a chest x-ray, would be done in that amount of time.......Real pros..... Good Luck,Everytime you get 6 months..you get closer to a cure.Doug http://www.cancercompass.com/message-board/message/all,22074,0.htm Happy2share Mon, 17 Mar 2008 00:00:00 GMT My daughter has had several moles excised, but they have been unable to confirm malignancy.  Her doctor told her that, by law she couldn't say she has cancer, but that she has cancer, and they have her in their "cancer track."She is developing these moles at an accelerated rate, all over her body; additionally, she is developing moles on top scar tissue from already excised sites.  Is there a more aggressive approach the doctor can take?  Do we have to wait for confirmation of malignancy before she can be referred to an oncologist?  It seems to me from what I have read that most fatalities occur because of what appears to be a wait-and-see attitude by docs.  Any suggestions/insights are appreciated.  http://www.cancercompass.com/message-board/message/all,21887,0.htm Justicia Tue, 11 Mar 2008 00:00:00 GMT In January of '06 I had a MM removed from my right breast.  It came back as Clarks Level II and Breslow thickness of 0.3.  They did an excision of 1 cm margins and all came back clear. I've been being check every 6 months and so far so good.  They did not recommend any further treatments or scans.  Is this o.k?  I didn't realize how scary Melanoma could be and hadn't had any thoughts about my own until talking with a stranger who had it reoccur.  My friend referred my to a specialized Dr. that only deals with Melanoma.  I'm not sure if I should be having PET Scans or have my Lymphnodes checked or any other type of treatments.  I don't want a reoccurance of any kind!  I went through Thyroid Cancer last year and had a good outcome with that.   I meet with the Melanoma Dr. on Wednesday the 12th.  Does anyone have any suggestions?  I appreciate your help.  http://www.cancercompass.com/message-board/message/all,21840,0.htm Thymomma Mon, 10 Mar 2008 00:00:00 GMT