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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rjcravens's picture
Replies 1
Last reply 1/13/2012 - 7:21pm
Replies by: FormerCaregiver

I have been doing my interferon since May. Besides the typical side effects i haven't had any problems in the past couple months. Today, my oncology office called to say my triglycerides were over 500 and they scheduled me an appt with the endocri doc. What does this mean? Is it just due to the interferon or could something else be going on? I am satge 2b.

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lizzykittycat's picture
Replies 1
Last reply 1/13/2012 - 5:37pm
Replies by: washoegal

hello again,

well... i wanted to follow-up to my post from a few weeks back.  i had a total dissection of my left groin last thursday.  thank you to everyone who responded to my questions and gave me advice about my lymphedema, etc.  i didn't expect the most painful recovery based on what some of you said you experienced.  i guess it's not THAT BAD compared to my excision on my calf when i was really supposed to stay off my feet 100%.  i'm finding this more painful at the groin area, but at least i can walk around the house when necessary.

so i saw my surgeon today for my biopsy results.  just to catch you up, my 2 sentinel nodes were positive for micro mets.  i've been counting the days down for results on the rest of them.  especially since i really struggled with the decision to even have the surgery.  i have a very large fear of lymphedema since my foot and ankle were swelling badly after the excision.  the good news is that with my drain, the foot swelling is reduced A LOT.  so even if temporarily, i'm having some relief from the pain.

my surgeon tells me... things look ok BUT... sit down.  so, he proceeds to explain that there were 5 nodes tested and they were all cancer free.  GREAT NEWS except that he doesn't want me to breathe freely just yet.  he felt that finding only 5 nodes was a lower number than average.  so he has requested that the pathologist further dissect (melt fat tissue or something) to be sure that they didn't miss any nodes that could be pos or neg.

so my waiting begins again.  he said he will call in 5 days or so.  i'm feeling good about what they did find. although that means the dissection may have been for nothing, at least i have some peace of mind that i didn't leave cancer filled nodes sitting in my body undetected and untreated.

my dr tells me that a normal # of nodes in a cluster is 10-15.  he did say that it wouldn't be impossible that i only had 7, but he just wants to be sure.  does this seem like craziness?  has anyone ever heard of anything like this before?

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Lauri England's picture
Replies 5
Last reply 1/13/2012 - 4:13pm

I had my PET-CT scan today.  It took 2 hours.  Wow.  What a scan.  Anyway I pray all is well.  My doctors office will have the results back by Monday the Radiologist office said.  My appointment to get the results is not until next Thrursday but I of course will be on the phone with Onc Office Monday.  I am impatient I guess.  I got a copy of the 2 scans I had in 2010 and the one from Oct 2011 to compair and radiology office said they only wanted my last most recent one.  Crazy thing is the last one was the scan that showed something in my lung and liver and none of the other scans had anything noted that was not normal.  I do have an appointment with the New Melanoma Clinic in Grand Rapids next Friday and will be taking all scan copies and pathology reports with me for them to review and the people reviewing now are not melanoma specialists.  Until I get results back and everyones opinions I will not know what the immediate future holds yet and it drives me crazy.  I also have an appointment next Wednesday at Dermatoligist office to have that bump on my neck looked at and possibly biopsied.  I will keep updating as I found out more. Praying for NED!!

Don't sweat the small stuff. There are bigger fish to fry!

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I just had a lung tumor taken out which turned out to be melanoma (after 3 years NED after initial diagnosis on back, with progression to one sentinal node and removal of all the associated lymph nodes).

Options presented today were watch and wait, yervoy, and wait to see if I have the BRAF mutation and try the pill.

My surgical oncologist recommended Yervoy.  Anyone take Yervoy even though they didn't have any detectable tumors?

Thanks,

Chris

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chende's picture
Replies 3
Last reply 1/12/2012 - 10:41pm
Replies by: Linny, Valentine, Janner

Hi everyone,

I am new to this forum. I recently discovered a new mole on the bottom of my foot. Naturally this has me concerned since I know that is a place where melanoma likes to show up. I've had it for a couple of months now. It's very dark but doesn't seem to have irregular edges. I also have one between my toes on the same foot but I have had it for years with no change.

I am a high risk candidate so I'm pretty worried. My mother has melanoma and I have blond hair, blue eyes, way too many sunburns in my teens and twenties, including a second degree blistering burn...and I have an Irish heritage.

What I would like to know.....is a mole on the bottom of your foot ALWAYS melanoma? I've never heard or seen of one without it being melanoma. I have an appointment to get it checked on the 20th of this month but that is a very long 10 days from now.

All the best to everyone. I am humbled by the strength of all the warriors and their friends and famlies.

 

Carolyn

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Lina's picture
Replies 4
Last reply 1/12/2012 - 10:30pm
Replies by: Lina, Janner, lhaley

Hello, everybody. It really great to find so positive forum. I am 37, from Holland,mum of 17 years old daughter.à week ago, noticed very small mole on my leg ,that wasn t so dark before. Dermatologist 99 % sure that it is melanoma, but I still waiting for results of biopsy.this 2 weeks is really hard time for me, just terrible nightmare... But this forum made me think a bit positive.. That melanoma is not a dead sentence .. Through this mole was growing leg hair, so dermatologist says that it is a good sign. May be someone can explaine me,what she meant with that ? Thanks a lot, for organizing so supportive forum. Feel really crashed... Have no idea how I can bring this news to my family. Regards. L

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Donna M.'s picture
Replies 28
Last reply 1/12/2012 - 8:05pm

I'm starting interferon treatment on the 22nd.  Any words from the wise to the rookie?  I'm growing more anxious by the day.  Thanks so much.

Peace. It does not mean to be in a place where there is no noise, trouble, or hard work. It means to be in the midst of those things and still be calm in your heart. (Unknown)

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Replies by: Lucassi, Lynn1962, eaca, Tim--MRF

Hello,

I'm newly-diagnosed and new to this site, and would like to ask a few questions of the group! I was diagnosed with acral melanoma stage IIb on my right foot in November. Since then, have had two surgeries - one for the initial excision, and one for the margins that resulted in the amputation of my 4th and 5th toes and part of foot below them. They did a sentinel lobe biopsy at the same time, and one lobe came back positive at the microscopic level - the doc said there were very few cells there, but this bumps up the stage to a IIIa....

So now the plan is to remove the linguinal lymph nodes, and I can follow up with Interferon either the high-level one or the 5-year plan.. My medical doc said he would like me to consider the 5-year treatment, as the latest info shows that my particular type of melanoma had promising results of remission with the 5-year pegylated interferon (Sylatron) treatment.

I'm still trying to decide what to do, and Im confused. All the info out there says Interferon does NOT impact survival rates, but DOES have an impact on remission rates. So what does that mean??? I would assume if it can delay remission, it would improve survival. But mainly, I'm trying to decide if having the reduction in quality of life is really worth it....survival rates after five years for my type/stage of cancer are not in my favor, lol! So do I want to  live my life to the fullest for a shorter time, or feel like crap every day for the next five years and then possible die anyhow? UGH! What a choice!

I am a healthy 49-years-young woman who has no other medical issues and leads an active lifestyle. My daughter and her husband live with me, and I have two wonderful grandchildren and another on the way...I have a lot to live for and have a high pain threshold, so I'm up for the battle. However, I just want to be able to actually enjoy my possibly-limited time with them, and I'm worried that the Interferon treatment would not let me do that.

I would love to get comments from the folks on the board about how they made their treatment decisions! I am very torn at this point! Thanks so much!

Lynn

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bdhf's picture
Replies 6
Last reply 1/12/2012 - 10:15am

Question for you all...so far the only treatment discussed with my oncologist is radiation (SRS).  We are still in the diagnostic phase, trying to determine if "nodes" in my lungs may or may not be tumors.  Brain met was removed (3 cm) on 14 Dec.  If there are no further mets I am wondering if they will do anything more than the radiation.  I have a new oncologist but she doesn't want to see me until after the biopsy on my lung.  So, I am in this limbo land as I wait for the consultation appointments then the real procedures with the pulmonologist and the radiation oncologist.  

Any thoughts or inputs would be greatly appreciated!  Thanks!  

Brenda

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darthveder's picture
Replies 2
Last reply 1/12/2012 - 6:57am
Replies by: darthveder, nikolaos

Good morning, my father is being treated with yervoy (he did the second infusion and in a few days will be the third) in Italy in Rome. He metastases to the spine for this hospital for several months gave Deltacortene (Prednisone) 5 mg x 2 times a day. the doctors have never mentioned anything about the possibility that this drug may conflict with yervoy. Assumption yervoy someone with prednisone? has been made ​​a serious mistake on the part of doctors? thanks

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davidfromsingapore's picture
Replies 11
Last reply 1/11/2012 - 8:39pm

All signs point to leptomeningeal disease for me.  Bad head aches, back pain, problems with hearining and vision.  Trying to stay positive though.  If there are any patients out there with LMD I'd love to hear from you.  I am about 1 week into Zelboraf.  So far  no major issues.  I am stage 4 with 2 mets removed via craniotomy and one via Novalia.  So far no body mets.  

 

While I am somewhat new to the board (I visited in 2008) - I am looking to bring hope to other patients and wish to find hope and strength through you.  While I am not a church going kind of guy, I am very spiritual and will be sending thoughts and prayers to all of you and your families who are suffereing in this holiday season.   

 

Peace, David

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” ― Albert Einstein

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deardad's picture
Replies 12
Last reply 1/11/2012 - 5:24pm

Dads 4th month results on Vemurafenib show tumors are continuing to shrink.

We can breathe until the next scans.

Dad has lost a lot of hair, almost all his body hair, very thin on top and almost all his eyebrows and moustache. He still has joint pain, but has energy. Certainly hasn't lost his sense of humor. We go with the good and worry when we have to. 

My heart goes out to all.

Nahmi from Melbourne

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Ginseng's picture
Replies 2
Last reply 1/11/2012 - 10:28am
Replies by: Phil S, FormerCaregiver

Hi all,

Six years ago  I had a mole in my right thigh removed along with a sentinal node biopsy. The biopsy indicated micro metastisis to the sentinal node. I opted to have my superficial nodes removed. None had disease and the rest of my body was clean as well.

I underwent roughly two years of interferon treatment. I remained clean until now.

Now I am scheduled to have a two by one centimeter subcutaneous nodule in that thigh (appr. two inches to the right of the original mole) resected in two days. My Pet/CT indicated no other melanoma spread beyond the nodule.

I am looking for advice on post-op treatment because I know I need it to deal with any possible residual melanoma cells. I have read many comments in the forum from people who clearly know much more about the immunology and science of the options than I do. I am happy with my oncologist but I respect the experience and knowledge of those commenting here. I would appreciate any and all help!

Thanks, Sue

 

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BrianP's picture
Replies 6
Last reply 1/11/2012 - 10:13am
Replies by: justlittleoleme, Anonymous

Anyone have a good understanding of the computer randomization for this trial?  Supposed to be a 50/50 randomization and looking for 1000 participates.  If every participate really has a 50/50 chance then what are they going to do when they have 500 people in the Ipi arm and only about 100 in the interferon arm due to all the people dropping out?

Brian

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Replies by: Janner, vladimir3d

32 year old caucasian male with no family history of melanoma, but childhood history of allergy to the sun during summer of 86 and adult history of 2 severe sunburns while mountain hiking. I do burn easily and don't tan quickly,  less than 50 moles on my body, brown hair/eyes.

I was diagnosed with moderately atypical nevus on my shoulder that was excised with conservative margins.  Now i had one diagnosed on my cheek that came back as moderately atypical with focal severity.

 

Report  further says:

 

Comment: Initial and multiple levels were examined.  The biopsy shows a junctional melanocytic proliferation with marked confluence of atypical melanocytes at the dermo-epidermal junction.  While the apparent small size of the lesion would favor a diagnosis of dyplastic nevus, complete removal is recommanded for diagnostic and therapeutic purposes.  This case was reviewed by Dr. Lisa H. Lerner who is in concurrence with above interpretation.

 

I have a feeling they are not 100% sure.  I already had it removed by my dermatologist.

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