MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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KellieSue's picture
Replies 7
Last reply 12/9/2011 - 9:22pm

Hello all. Thank you very much for the advice earlier on my braun tumor. I am about 20 days out and feeling much better. I finished the brain radiation and weaning off of steroids. PET and MRI look good so for now we will continue on.
I am getting better everyday wirh my stroke. It's a conscious decision to pay attention to the right side even tho I can't feel it. I have great OT and PT making me stronger everyday.
I will be starting a clinical trial with Temodar starting next Monday. Now if we can just keep the brain clean we will be good. I'm feeling positive and hoping to get back to kicking cancers ass.
Thank you all for the thoughts.

Kellie(from Iowa) fighting my way back from a stroke. I will beat this. I will. Cancer can kiss my ass

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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Nicky's picture
Replies 8
Last reply 12/9/2011 - 9:18pm

Hi everyone, it is so good to be posting another anniversary.

The people on this board have inspired me for many years and I thank everyone so much for the posts that have been an amazing support, mpip is a great community 

It has been my mission to raise awareness for melanoma through tv and radio supporting cancer research and my local hospital. I know that some of my friends here, neighbours, family and colleagues who have lost their battle with this disease no longer have a voice but I still do and I will continue to help beat this disease in anyway I can until my last breath!!! (hopefully when I'm an old lady).

Whatever you are going through personally here, keep fighting and never give up hope. 

LOL Nicky (my patnet is under Nicky)

 

 

 

 

 

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Pattie's picture
Replies 23
Last reply 12/9/2011 - 9:10pm

My 19 year old son, Michael, has Stage 4 M1c Melanoma as of his latest PET/CT Scan on 11/7/11, which showed that 2 tumors have grown in his spleen and 2 possible minute tumors near the original site of his right neck. He is currently a second year student at Cal Poly Pomona.

History: He was originally diagnosed with Melanoma in March 2011. Michael had two surgeries in April & June 2011, of which 15 lymph nodes had melanoma tumors up to 1.1 cm of the 65 lymph nodes removed, from his right neck. At this point, he had Stage 3C Melanoma. Michael started Sylatron, which is Pegylated Interferon, on July 24, 2011, which was approved by the FDA in March 2011. Michael choose not to do radiation. He completed 16 weeks of the Sylatron until it was determined that the Sylatron was not working and the Melanoma had metastasized. Michael’s oncologist, Dr. Gregory Daniels of UCSD Cancer Center, then had Michael’s tumor tested for the BRAF Gene Mutation Analysis (negative) and blood tested for the Human Leukocyte Antigen (HLA)-A2-peptide complexes (positive).

Since the HLA – A2 came back positive, it is a possibility that Michael could be put on one of the clinical trials for Adoptive T cell therapy. (Adoptive T cell therapy  - ACT - consists of isolating tumor reactive lymphocytes from a patient, growing and activating them in the laboratory, and infusing them back into the autologous patient). He is going to the National Cancer Institute to meet with them to determine his next treatment option after he finishes this quarter in 2 weeks. Michael will not return to school this next quarter knowing it is imperative to start a new treatment as soon as possible.

Up until now, he has modified his diet to consuming more whole foods but not to the extent of my liking. When he was home for the summer, we were able to keep an eye on his diet. But since he has been away at school, I know he has tried, but he has not always stuck with the plan.

I would like him to start an alkaline diet plan with daily juicing, additional natural supplements and incorporating integrative treatments such as mindfulness classes and acupuncture into his routine. We have tried to eliminate as many toxins from his daily life by using safer body and cleaning products. I feel that he may have additional exposure to toxins when he surfs. Michael has been surfing since he was 10 years old, and it is just as much a meditation activity as it is exercise for him. Therefore, I cannot take that away from him. So, any pointers to help eliminate/reduce toxins would be appreciated.

Thank you for taking the time to read Michael’s Melanoma story. I would deeply appreciate if you could let us know what your current or past Melanoma Plan is. By reading what others have done to make their Melanoma Plan successful, I am sure it will confirm in Michael’s mind that he should make those same changes. Take care.

Pattie

Melanoma Mom

"Life's Perfect Moments Are Now" 

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Karolina's picture
Replies 10
Last reply 12/9/2011 - 7:59pm
Replies by: Janner, Karolina, lhaley

Sorry for asking, again, silly question, but due to the lack of clarity from the doctor, i am trying to find out as much information as possible from this forum. And as so far, I wasn’t disappointed. Thank you

Now I am trying to find out whether negative result of SNB means that this cancer COULD NOT spread elsewhere? Or, is it possible that SNB is negative but cells could spread somewhere in the body via different way? Bear in mind that I am still talking about Desmoplastic melanoma, which I understand may behave different to other melanomas…

I am a bit concerned as my friend had 3 operations already, at the moment she has an opened wound as the doctor wants to make sure that there are no more cancer cells after last (3rd operation).  However, I wonder whether this cancer could spread elsewhere if, in fact, it is on my friend’s skin for at least last 5 months! If SNB is negative, does it mean that the cancer CAN NOT spread elsewhere by other means? To date my friend had no other treatment done i.e. CT or blood test. Is it also a standard procedure and is not required?

Please advise

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laurieformike's picture
Replies 9
Last reply 12/9/2011 - 11:50am

Husband got bad news from the MRI, new mets. The Gamaknife was 4months ago, they want to do WBR starting next week. So afraid of out come, with the side effects and all. Was looking to see if anyone had experences with the WBR? Also was reading about somepeople on the Board here have had good results with Yevoy with brain mets, and would it be option since he has had to reduce dose on Zelboraf twice now? So need to be able to discuss with someone, he is so depresed now. He was feeling so much better after reducing the dose on the Zelboraf but still having bad joint pain!

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Donna1963's picture
Replies 4
Last reply 12/9/2011 - 3:28am

Hello, my name is Donna.  The personal stories here are heartbreaking. My heart goes out to all of you. My mom has a large spot on her cheek. She went to a Dermatologist and she said that it was Melanoma and did a biopsy. It was so difficult to watch her in so much pain. The doctor said she had the bad kind of skin cancer and that they need to find out if it has spread to her lymph nodes or anywhere else in her body. I'm sure that a Dermatologist knows what it looks like but could she be wrong? My mom has had this spot for at least a year but it wasn't that big and has grown quite a bit. Her twin sister had skin cancer as well as her other two sisters. All three of them said it wasn't Melanoma. Can this type of cancer be hereditary?  

 

Thanks,

 

Donna

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renter9's picture
Replies 3
Last reply 12/9/2011 - 3:17am

Person in that area had a shave biopsy with a melanoma diagnosis.  Derm wants him to return in 2 days to have the entire mole removed. Do not know the name of the MD, but would like some suggestions for a reputable clinic or specific MD.

Thanks, 6 year survivor

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JenC's picture
Replies 5
Last reply 12/9/2011 - 12:45am
Replies by: JenC, Janner, Cynthia C

I check this board regularly... but I thought it was just infomational/ research so that I could keep on top of the treatment of this disease so I can help with the fight and keep in the loop for my two young kids.  I lost my husband to melanoma almost 5 months ago.  I was on here daily, fighting to find some info that would save him.  I got a lot of great info.  I just got results of my own biopsy - it is melanoma in situ.  All I can think of are my kids - how can I prevent them from going through all tlhe suffering that their daddy went through with such a strong family history. 

I am on the hunt again for any information.  In the meantime - just a WLE and watch and wait....... but  how can I watch and wait when I know what this "oh its nothing" can turn into a big something.  Is there anything else that I can do instead of just a WLE and wait?!?!?!  What choices do I have?  My husband had the same choice at stage 3.  I'm just beginning again, but is the current state of things the same as 2 years ago?  Unless I  let this spread I have no other option but wait?  I will go back to my clinical trial research, but it obviously didn't help my husband much.  What can I do differently?

JenC

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kristine's picture
Replies 3
Last reply 12/8/2011 - 9:25pm

does anyone know what encephalomalacia  means?  Is it bad?

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robbier's picture
Replies 3
Last reply 12/8/2011 - 9:34am
Replies by: Lauri England, Mike A, awg

Looking for patients that are either being currently being treated with interferon alfa or have been on this drug to see how it affects them, it has been recommended that I use this therpy and will go back and see myDr. on Dec 13th to give him my answer.    Any replies would be most appreciated at this time.

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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marfda's picture
Replies 2
Last reply 12/8/2011 - 8:43am
Replies by: Phil S, lhaley

I'm curious what you all do and what our rights are to our scan result information? I had a PET scan yesterday and the results are available to my onc by the end of that day. But, the onc's nurse called today to set up my appointment and she isn't allowed to give me the results. I have to see the doctor tomorrow afternoon. It makes me nuts that I have to wait to talk to the doctor. It sends my anxiety sky high and emotionally, I do better if I have an idea of what the scan showed and can deal with that privately before talking to the doctor.

I went around the system today and asked the rad onc to give me results while at my radiation appointment today (the results are online for doctors affiliated with the hospital.) So, I got around the system today, but I know if I had not had my results and the nurse had called to tell me nothing, I would be having a crazy anxiety attack.  It also feels like we as patients are treated as infants in this system. Like we can only handle having a doctor to deliver the news to us.

PS I do understand that the results can be hard to read and interpert and people might freak out. But, in my case, I am informed and want to advocate for myself! 

Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or danger, or sword?... No, in all these things we are more than conquerors through him who loved us. Romans 8:35–37

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Kim41's picture
Replies 11
Last reply 12/7/2011 - 11:52pm

I had lymph nodes removed from left groin 3weeks ago and now noticed a hard lump beside lower part of incision. Has anyone ever had this. I dont think its scar tissue and it feels hard and oblong. Worried its a lymph node they may have missed. I still have my drain in and it seems to be working fine. I will call Doctors office in am. Just thought someone may have has this same problem. Thanks.

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lhaley's picture
Replies 15
Last reply 12/7/2011 - 6:15pm

I am so thankful.  Original brain tumor (21mm) was found Oct 4th that was showing symptoms.  SRS done Oct 17th and was told that there was approx 1cm bleeding at the time.   EMR Oct 30th due to severe headaches but told stable.

Today's MRI was good!  There has been shrinkage of 20% and it shows nucrosis spaced through out the tumor.  Has not bleed again since the first time and is slowly being absorbed.  Both the radiologist and melanoma specialist both were so excited and had only smiling.  They feel that all of the issues I've been having are steroid symptoms.  Now we are finishing weaning.  They have slowly been weaning me off and should take about another week or so. 

Every joint has caused problems but they have told me if I do have some headaches that I'm not to worry.  Sometimes it does happen. If they're bad then I call back.  Meanwhile next PET scan is the first week of Jan.  

Linda

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robbier's picture
Replies 6
Last reply 12/7/2011 - 4:23pm

Looking for patients that are either being currently being treated with interferon alfa or have been on this drug to see how it affects them, it has been recommended that I use this therpy and will go back and see myDr. on Dec 13th to give him my answer.    Any replies would be most appreciated at this time.

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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So, I did work around the system today and had a doctor at my radiation appointment give me my scan results. There is tumor activity in my groin (where I can feel an obvious lump) and also in my armpit on that same side. This is the first cancer activity not involving my back or groin lymph nodes. I don't like the idea that it's moving, but I'm relieved to hear that my brain and lungs and other organs were clear. I can deal with more lymph node involvement, right? 

I see my oncologist tomorrow, so we'll see what the plan from here is. 4 days left of radiation!

Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or danger, or sword?... No, in all these things we are more than conquerors through him who loved us. Romans 8:35–37

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