CancerCompass message board discussion started by Bella13 on 2/12/2006 http://www.cancercompass.com/message-board/message/all,4480,0.htm Wed, 03 Dec 2008 00:00:00 GMT Wed, 03 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I had melanoma surgery on my forearm a year ago, my last CT showed an inch spot on my right lung and 2 smaller ones on my left. Took PET scan thurs waiting for results tomorrow. any thoughts ?? Bella13 Sun, 12 Feb 2006 00:00:00 GMT Im sure I would have the same thoughts you do. Best to wait for results, however. What stage was your melanoma? Any sign of spread at the time? What about Clarks and Breslow levels? Oncrx Tue, 14 Feb 2006 00:00:00 GMT How large was the place that was removed on your arm and how deep, how long had you noticed this place. Was it a mole? Dean in Georgia Tue, 14 Feb 2006 00:00:00 GMT i just lost my wife to melanoma be sure to have a mri of your brain done melanoma likes to grow there as well as the lungs and liver good luck to you brian b Dawnb Thu, 16 Feb 2006 00:00:00 GMT My father-in-law, age 73, had a melanoma removed from his left back 4 years ago by a dermatologist. They claim they got everything. They live in Florida. After the hurricane hit this past winter he was cutting down some palms and noticed his right armpit was swollen. Had petscan done. They did a biopsy, the size of 2 fingers & it was malignant. They rem'd 24 lymphnodes and 7 were infected. Has been on a draining tube for 3 weeks. Two weeks later, all of a sudden, a lump appeared under his right collar bone. He went to surgery and there were 2 golfball sized melanomas. Only 80% was able to be rem'd since it was too close to arteries and deeply embedded. Now they feel lumps under his left armpit. They are starting him on Temador, (Temozolomide), at $155.00 per pill, for 5 days on and 23 off. Radiation will start next week. The oncologist in Florida wanted him on Interfuron but the oncolgist at NYU said Temador has shown good results in melanoma patients. So they both agreed to Temador and radiation. They are hoping the Temador will shrink the lumps under his left armpit and work with the radiation in killing the melanoma. Has anyone had anything similiar to this? Has anyone had good results with Temador? The whole family is a wreck. Reading everyones stories is so sad. We pray each and every day for our family and now reading these Cancer Message Boards, yours. Thank you for taking the time to answer. Good luck Wendy with the results from your Petscan. Nancylynn Fri, 17 Feb 2006 00:00:00 GMT Dear Brian, Sorry to read about your loss. I lost my husband from Melanoma 3 months ago. It was very rapid. 3 Months from diagnosis to death. He had a spot removed over 2 years ago. When did your wife have the MRI? Did it give her more time? Did she do any chemo or radiation? Did she have CT scans? My husband was told just to go to the skin doctor and did not have any scans done until he had a swelling under the armpit. Then, the doctor said it was too late to do anything. Prayerful Prayerful Fri, 17 Feb 2006 00:00:00 GMT So glad to hear that you are getting a PET scan. I spoke to a woman (Melanoma survivor) and she said it was due to getting PET scans every 6 months. Twice melanoma had spread. Once to the lymph nodes and they removed them. Two years later, the PET scan discovered tumors in the lungs and she had treatment. That was several years ago. She is doing well. Prayerful Prayerful Fri, 17 Feb 2006 00:00:00 GMT Your father-in-law's story brought back memories of my husband's first discovery of the swollen armpit. The CT scans showed that the melanoma had already spread --lymph nodes, lungs, spleen and liver. The local oncologists said there was nothing that could be done, but an out-of-town oncologist suggested Temador at a lower dose daily for a month. But, my husband got weaker and bedridden, so he was only able to take it for two weeks. We had heard that it was the best drug to try with the least side effects. I wished they had put him on it sooner, so we could have seen if it would have helped. Prayerful Prayerful Fri, 17 Feb 2006 00:00:00 GMT my wife was on 300mg temodar for 5 days of for 14 days for 6 months it only slowed the tumers under her skin down it did not stop them then they put her on thalidomide 300mg a day with temodar and it seamed to work until a tumer in her brain ruptured and the dr taking care of her then would not let her take them any more he told her to go home and think about dying what an ass he was after 3 weeks it was in her liver she was gone the next week she first had it in 1988 and then came back ih the winter of 04/05 Brian B Dawnb Fri, 17 Feb 2006 00:00:00 GMT Nancylynn, I am sorry to hear about your father-in-law. My dad has stage IV melanoma. Jan. 05 they found a mole on his back and it was removed and they said they got it all. Aug. 05 a lump showed up on his back and it was melanoma. When they did scans, they found it had traveled to his lungs. They put him on temodar 5 days 21 off and it did nothing. The tumors grew larger and he has them under his armpit now. We are currently in a clinical study. It is working but, he is having a bad side effect to the chemo. His hands and lower legs are numb and he can't walk or button his shirts. The doctor will not continue with chemo until he can walk on his own and button his shirt. Other than that, his is has no other symptons. I am currently looking for someone who is having these symptons and can help me. Let me know how things are going. Take Care Cory Corypj Fri, 03 Mar 2006 00:00:00 GMT Bella13, My dad has melanoma on his lungs. We are currently on a clinical study. It is working, but he has developed a side effect that is making the doctors wait unitl they give him another round of chemo. Let me know what you find out. Corypj Fri, 03 Mar 2006 00:00:00 GMT Hey Cory, I read your message. Thank you for responding. How old is your dad? When did they start him on Temador and how long did he take it before they took him off of it? My f-i-l is done w/his 1st dose of Temador(3pills-100mg each- for 5 days and off for 23). They took new cat scan and they show the 20% growth that was left in after surgery under his collar bone did not grow and melanoma has not traveled to any major organ. So the drs. at NYU said start him on radiation this Monday, 5 x's p/wk. for 5 wks. They said Temador will not show any results yet, it's too soon. The only side effect he had w/Temador is nausea but he is taking Zofran for that and works great. Why haven't the drs. recommended surgery for your dad's tumors? What clinical study did they put your dad on? My sister-in-law would be interesting in hearing about that. I will update as soon as anything happens w/radiation or the Temador. Let me know about the above. Take Care. Keep your fingers crossed. Nancylynn Nancylynn Sat, 04 Mar 2006 00:00:00 GMT just keep finghting the best way you can .think positive all the time thats what i am doing. Doghouse Mon, 06 Mar 2006 00:00:00 GMT Nancylynn, My dad is 73. He was on temodar for 3 months and in that time the tumors kept growing at a small rate. His doctor said that they would not have grown if this was working at all. We are currently on Paclitaxel/Carboplatin with Sorafenib study. He has had 2 rounds and now having a very bad side effect. He cannot walk or use his hands. The doctor is not sure why and I am currently looking into another doctor. I hope everything goes well with you. Let me know if you have ever heard of the study my dad is on or any one having these side effects from chemo. Take care Cory Corypj Tue, 07 Mar 2006 00:00:00 GMT Doghouse, Thank you for responding. My dad is on a clinical trial of Paclitaxel/Carboplatin and Sorafenib. He had 2 rounds and now is having a very bad side effect. He cannot walk or use his hands. He is not staying very positive and I don't know what to do. Is there anything you can tell me that would help me with my dad. The doctor is not saying much. He thinks it is just a bad side effect and does not know why it is not going away. He has not had chemo for 4 weeks now, and the symptons are not going away. If you know anyone who has had these symptons, will you please let me know. I hope you stay positive, I believe that is the true medicine. Take Care Cory Corypj Tue, 07 Mar 2006 00:00:00 GMT Hi, I read all of your messages. It's sad and very frightening - you feel stunned. MY niece was diagnozed with melanoma cancer just before Christmas - she's 55 years old. She also has an ulcer - we wonder which is causing her more pain. She had all of the tests - scans included. Her melanoma cancer is at stage 4. She's coming out of the hospital today - she was passing blood and was anemic. She had one chemo treatment but right now it appears that it's doing her more harm than good. Of course our whole family is devastated - her mother, my sister-in-law is trying to be strong for her. I've been on-line for hours trying to get info on other treatments and their benefits. I don't want to interfere, but I feel that the more info we have the better. At the hospital that she's in they say that it's inoperable. It has spread to her lungs and stomach - but not to her liver or anywhere else. I've seen on some cancer sites that surgery can be an option, to prolong someone's life. I fear that, left without immediate treatment, the cancer will spread in no time - I'd like to think that there are more options, and more hope for her. I would sincerely appreciate a reply. We feel so helpless don't we? Sue48 Fri, 10 Mar 2006 00:00:00 GMT Hi Cory, You'll never guess where my father in law is?? In the hospital w/only days to live. On Monday he went for his 2nd round of radiation. Came out w/headache, went home, read the paper, got up & could not stand on his legs. He fell. My m-i-l dragged him to car, took him to Bethesda Memorial in Florida, they did MRI and found a lesion on his spinal cord at the base of his neck. Too big to operate, so they gave him anti-inflamatory meds or he would choke to death. I just got off phone w/my m-i-l and she said he is paralyzed on his right side and cannot talk. They don't know if the lesion is melanoma or not because they do not want to operate or biopsy. They are going to give him a strong dose of radiation after new MRI today. Is that just prolonging the inevitable? We just spoke to him Sunday night. He was fine. No complaining about anything. So maybe an MRI would be in order for your dad if not done already. They said the Temador and radiation did not do this to him.Let me know how your dad is doing! Is he back on the clinical trial? OK will keep you updated. Take Care. Nancylynn Nancylynn Tue, 14 Mar 2006 00:00:00 GMT Hey Everyone, This is an update to my father in law who is in Bethesda Memorial in Florida since 3/13/06. Since 3/13/06 he has had radiation every week day on the back of his neck(6 more left), every 6 hours gets an iv of steroids, and just came off his 2nd round of Temador yesterday. His right arm is paralyzed, his left arm is 90% ok. His legs are 90% paralyzed. Some days are better than others. His head flops to the left. He cannot hold it on his own. When the physical therapist sits him up in bed to work on him he falls to the right if not held by someone. He has double vision. He speaks in a whisper. Cannot cough up flem. Sometimes too weak to eat. They will take new mri 2 weeks after his last round of radiation to see what the lesion on his spinal cord looks like. They also found a melanoma on his lower spine that they are not treating w/radiation. But they feel the lumps under his left armpit have gone down in size from the steroids/Temador maybe. That side was never operated on. My mother in law has the worst stomach pains and cannot eat. She shivers inside her body. I guess thats from stress. Just wanted to update my last message. Will post more when available. Has anyone had any new changes w/their family members? Take care and God Bless! Nancylynn Nancylynn Thu, 23 Mar 2006 00:00:00 GMT Another update to all. My father in law was done w/his last radiation treatment yesterday(13 in all for the lesion on his spinal cord) and is now in a nursing/rehab home. Right arm still paralyzed, legs 90% paralyzed, left arm still moves. They are decreasing his steriods little by little. Still being nebulized for chest congestion. Very tired and no energy.Has not been out of bed for 19 days. Eating ok. Someone has to be there to feed him. His head is back to the left. Very bad acid reflex. Still on cathada(sp?). Cannot go on his on, they tried. Physical Rehab techs came in today to see him. They are off on wkends so they will start Monday. Nursing/Rehab homes are horrible. My father in law was brought in at 7 last nite (Thurs) and no steroids or nebulizing or heart pill or acid reflux pill till 4 today. Almost 24 hours later. The bed was broken, no electricty in the room, the floor had to be mopped, no dresser, no frig, and 2 upright chairs. My mother in law said this was one of the better ones. She was looking more for physical rehab ratings than nursing ratings. He is in a Manor Care Nursing Home. So do your checking before admitting your loved one. We are thinking about bringing him home. Hiring a private nurse and getting a tech to come in for physical rehab.He will have new MRI in 2 weeks to see if anything changed w/regard to the sizes and whereabouts of the melanoma. Dr's say they cannot tell us anything except he was to have died 2 weeks ago and he has held up very well. So maybe the 2nd round of Temador, radiation, steroids and some physical rehab has kept him alive. If anyone reading this has anything to add please do so. Thinking of all of you who posted messages. Thank you. Nancylynn Nancylynn Fri, 31 Mar 2006 00:00:00 GMT Hi Everyone, Beautiful day today on Long Island. Just wanted to update all of you on my father-in-law in Florida. He is still paralyzed since 3/12/06. He is home in hospital bed. Physical rehab has been done for the past 2 1/2 wks and tech said no improvement. They did new MRI this past Monday and it shows tumors under left arm, under collar bone and on spine have shrunk, not sure if from radiation or temador or steroids, but now a new lesion appreared on the brain. They cannot do anything about that because in order to radiate the area he would have to sit for 5 1/2 hours and the radiologist said with the condition he is in they will not do it. His platelet level dropped to 47,000 so they cannot do 3rd round of Temador until platelets reach at least 100,000. He is still in diapers, on cathedar, double vision, legs and right arm have no muscle left, left arm is still ok. He is eating well, has a great spirit. They lifted him into wheel chair so he could go outside yesterday. So things are not looking to good. Medicare said since phys. ther. stated he is making no improvement they will only give him 1 more week of phys. rehab. We are really trying to do whatever we can & the doctors have been truly dedicated to my father-in-law. His birthday is in May and he will turn 74. Let's hope he's around for that. Will keep all of you updated and in my thoughts. Nancylynn Nancylynn Thu, 20 Apr 2006 00:00:00 GMT Dear Sue48, read your message and we are in a similar situation. Melonoma has returned to beside bowel area, but not in bowel. Had first chemo (sounds like Dazcarbizine), receiving once every 3 weeks and is very toxic. Has lost a lot of weight, is this similar with your case? Also was aenemic and passing blood but got transfusion, and blood seems to be holding ok. Apetite very poor and feeling very sick. Is your friend taking additional vitamins or supplements and are they eating? We live in Ireland, where ae you from? Have you checked out other treatments or opinions. Would really appreciate a response from you as soon as possible. Thanks, Cathy Cat13 Wed, 26 Apr 2006 00:00:00 GMT Read your post. I'm stage V metastatic melanoma headed off to MD Anderson, Houston next week to explore my options for the above mentioned instrument to "non-invasively" operate on lung mets. Just enter Varian into any search engine to get information. It's specialty is primarily for inoperable tumors. I'ts new technology. Basically two particle beams are crossed in the tumor which "nails the tumor". The accuracy has been reported at within a mm. Good luck. Hope this helps. This is not gamma knife. Tomtom Thu, 27 Apr 2006 00:00:00 GMT