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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Tracey's picture
Replies 3
Last reply 12/1/2011 - 9:43am
Replies by: Tracey, FormerCaregiver

Hi all!
Looking for a bit of guidance to offer the doctors caring for my husband, Steve.

Steve was diagnosed in June with Leptomeningial Melanoma, that had also metastised in a lymph node and also has a little something posterior spine at about T4. Biopsy of his lymph node tested positive for the BRAF gene mutation and he began treatment with Vemurafenib and has responded really well. Last LP showed scant cells in fluid, lymph node had shrunk over 70%, as had spot on spine. (there is something questionable regarding his spleen, but oncologist is not too worried about it). He had experienced side effects which cleared when his dose was reduced to 720 mg twice a day.

Here's the mystery. He is suffering from nausea and vomit, migraines and sixth nerve palsy over the last week. He had become quite dehydated over the weekend and a bit out of sorts. There is inflammation creating pressure and indicating poor drainage of spinal fluid. Why might that be?

We are living in Kelowna, BC and receiving treatment out of Vancouver. Steve is in hospital where we live and doctors here seem to be at a lose, and they are working really hard and feel he is well enough to continue his treatment. Our team in Vancouver is not offering any guidance except steriods. No one here or in Vancouver has much experience with leptomeningial melanoma except for Steve's case. We certainly don't want him off the drug as we are afraid this is the only option. I think we need any suggestions as to what else to look for quickly. I certainly would be so very grateful for input.

With all my heart, thank you!
Tracey

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piii's picture
Replies 8
Last reply 12/1/2011 - 7:06am

Just an update, I finished my radiation treatments and they went very well. The Interferon has been a tougher go. The chills are the worst but I will make it through. I did have another mole taken off and came back a-typical they are sending the slides to Brighan and Womens for futher study but to be honest I am not too worried about it. I will worry when they tell me it is something to worry about.

 

Peter

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Anonymous's picture
Anonymous
Replies 5
Last reply 6/23/2012 - 1:32pm

My mother has stage IV melanoma. She has 5 small lesions in her brain and a few other small ones in her lungs. She was diagnosed 8 months ago and did not really respond negatively or positively to chemo. Doctors have recommended WBR but she dies not want to do it. She was also told by docs that they cant perform gamma knife if there's more than 3 tumors. What are the options then?

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My mother has stage IV melanoma. She has 5 small lesions in her brain and a few other small ones in her lungs. She was diagnosed 8 months ago and did not really respond negatively or positively to chemo. Doctors have recommended WBR but she dies not want to do it. She was also told by docs that they cant perform gamma knife if there's more than 3 tumors. What are the options then?

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fenny's picture
Replies 10
Last reply 12/1/2011 - 12:48am

Anyone can tell me which cancer center in the States is the best for musocal vaginal melanoma?  Is Moffitt Cancer Center in Tampa, Florida is good choice? I tried to contact Dr. Hodi at Dana Farber Cancer Institute in Boston, but no response.  My sister had a major operation in Beijing Cancer Center on Nov 16. She had her uterus, vagina and part of her vulva removed and she's now recovering from the surgery while waiting for the new chemo thrapy. I really wanna take my sister to the best melanoma hospital in the USA and we cannot affort to waste money, so pls offer your valuable info about the best one in the States. Thx.  

Make Each Second Count!

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DonnaK's picture
Replies 3
Last reply 11/30/2011 - 10:27pm

Hi.  I have no bad news to report, but I'm just curious if people could share their stories of how they knew their Melanoma had recurred?  What are the warning signs we should be looking for, in addiiton to regular scans and derm checks?  What kinds of headache, cough, shortness of breath are signs of concern, vs. trivial issues?

Thanks in advance for the information! I understand the importance of early detection and want to be as vigilant as possible!

DonnaK

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dearfoam's picture
Replies 4
Last reply 11/30/2011 - 8:35am

Boy have things changed.

Dad has been so very weak, hardly eating and drinking, and sleeping 20+ hours a day. We made it through the weekend with him very peaceful and calm and "glad to be home." No more agitation or signs of distress. He has been in bed most of the time since Friday evening, but managed to get up to the sofa for a little while today (Tuesday). Monday he slept over 22 hours.

His doctors discontinued his Zelboraf treatment and gave a home hospice order. It is a huge relief emotionally. We will see how it goes from here and wether or not we can handle the physical part or have to take up some other options.

-DF

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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 3
Last reply 11/29/2011 - 5:42pm
Replies by: Anonymous, Charlie S, Janner

Could someone explain to me dependence between a size of a lump and a melanoma thickness for Desmoplastic Melanoma? We have been told yesterday that there was 1mm melanoma on my friend's neck. It seems to be really thin melanoma according to the size of lump she had which was 10cmx7cm

Please bear in mind that above measurements are for a second lump as the first one was bigger and it has been removed without any margin because it was not diagnosed as melanoma

Karolina

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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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JenC's picture
Replies 1
Last reply 11/29/2011 - 2:18pm
Replies by: washoegal

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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JudyinCA's picture
Replies 5
Last reply 12/20/2011 - 3:51pm

I have been in contact with Dr. O'Day.  He confirmed that he has parted ways with The Angeles Clinic.  He will be practicing in the Los Angeles area and he hopes to be seeing patients in early 2012!  If you would like to contact him, his email is stevenjoday@gmail.com.

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Drew N's picture
Replies 2
Last reply 11/29/2011 - 8:53am
Replies by: Gene_S, akls

Diagnosed IIIB in December 2008. Just wanted to post and say no recurrences, and my latest CT was negative as well. What with all the promising new protocols, I may start buying extended warranties again.

Much love to all,

Drew

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Hello everyone! We are very pleased to be introducing our new Phone Buddy Program to the patient community, and I wanted to make sure that everyone on MPIP knew about it. This program is designed to match newly diagnosed individuals with trained volunteer who are, themselves, melanoma survivors. These volunteers will provide support and guidance to their "buddy" as they begin to navigate the melanoma landscape. Depending on the needs of the patient, these volunteer relationships can last anywhere from one phone call, to  weekly calls for a year.

I would be happy to discuss this program with anyone who might be interested in participating. We have trained volunteers ready to be matched up with buddies. You can read more here: http://www.melanoma.org/learn-more/patient-reference-guide/mrf%20phone%20buddy%20program

Please let me know if you are newly diagnosed and think a Phone Buddy would be helpful to you, and please share this information with your networks.

Take good care,

Mary Mendoza

National Director of Volunteer Services

(202) 347-9675      l    volunteer@melanoma.org

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