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.

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I had a mole off at my GP in September and after it came back melanoma I had it a larger excision in November 09. Now I have a small mole in the centre of the scar! EEK!!! Experiences??? Ideas? DO I call my GP, Plastic Surgeon or Dermatologist???

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Linda/Kentucky's picture
Replies 5
Last reply 8/30/2010 - 10:40pm

Just wondering about those of you who have finished the Ipi treatments how has your LDH have been?  My husband is at week 17 and we received his lab work yesterday and it had been going up since taking IL-2 but after his 3rd Ipi infusion his LDH was 1054 and yesterday 5 weeks after final tx.it was 1304 I know this is very high.  Clinical trial nurse said not to worry she has seen this happen before.  Starting to feel really discouraged.  He also found out he was anemic HGB 8.8 so we will try to find out the source of the bleeding could be from taking alot of Ibuprofen but it's the only thing that gives relief from aches.  Again I'm afraid he is not going to be a responder, but......it does take longer sometimes.  His scans showed no new mets but increased size of mets following Ipi treatment. 

P.S. He did get the hair depigmentation and vitiligo after 2nd tx.

 

Linda/Kentucky

husband stage IV

I can do ALL things through Christ who strengthens me! Phillipians 4:13

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Anonymous's picture
Anonymous
Replies 6
Last reply 8/30/2010 - 10:08pm
Replies by: Linda/Kentucky, Anonymous, Janner, mkummerle

Hi Everyone,

 

This might be a dumb question but can anyone tell me if bone mets hurt????

I have been having pain along the lower part of my spine. When I touch the bones in my spine in my lower part, the bones do not hurt. However,when I am lying down then get up. I feel pain. Of course, my mind jumps to the worst scenario.

Anyone experince bone mets in the spine or anywhere else, your feedback would be sincerely appreciated.

Thanks you for reading my post & replying.

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himynameiskevin's picture
Replies 11
Last reply 8/30/2010 - 10:01pm

I'm leaving in about 15 minutes to start IL-2 for the first time. I'll be gone for about a week. Please send some positive thoughts, prayers, or anything my way, I need all the help I can get. See you all in a week. (fingers crossed) :)

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jag's picture
Replies 21
Last reply 8/30/2010 - 6:02pm

am going in for surgery on Tuesday for Craniotomy #6.  Sometimes I feel like it must be scary for new people to know that might be in their future, and so I hope this post doesn't end up causing someone to stop researching information regarding their particular situation and drive you away from the MPIP.  There are plenty of people who have had 1 brain surgery and done very well,  In my case my brain is very radiation sensitive, and so it is either surgery or necrosis, luckily last time it was necrosis(from previous SRS)and I am hoping the same results come through this time.  It has been 2 years since I have had any evidence of disease, and it has been four since I was initially diagnosed with a brain tumor.   So, if you are a newbie-this isn't a common situation and this may not end up being your situation at all.  Things may well never comeback if you are stage II or III.  That has been the case with many people.  If they do, address one issue at a time, and go from there.  First I thought melanoma was a death sentence, then I thought stage IV was a death sentence, then brain metastases were a death sentence, and so far none of that has proven to be true.  Don't read into the statistics whatever you do.   New therapies are coming out faster than ever, and more and more trials are adding up to improved statistics overall.  I am going into surgery with a very optomistic attitude, saying my prayers and there really isn't much else I can do.  Sometimes life gets out of your hands, there are some things one can control and some that one cannot.  Either way, keep on planning for the future and enjoy yourself.  When I first got diagnosed, I used to search this site and see tons of people dying and it scared me so much that I avoided scans as much as possible (sometimes to my own detriment) so whatever you do, remember, scans are your friends.  Even if there is a bad result, the sooner you get working on it, the better your outcome will be.

Best, 

John

Insert Generic Inspirational Motto Here

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Linda J's picture
Replies 8
Last reply 8/30/2010 - 2:17pm

I just got back from Toronto.  I saw about five people, several surgeons who all think that I should do radiation first and then surgery.  The radiation is to "sterilize" the area around the tumor on my hip and hopefully shrink it a bit so the surgery will not be as extensive.  They will also be radiating my groin area at the same time and then I'll have a LND when the radiation is done.  The tumor on my side is just touching the muscle but not in it.

I am upset because the MRI showed that there are several lymph nodes involved and one of them is "deeper".  The deeper one is about 1cm.  Am I doomed because there are several lymph nodes involved???  Have other people had multiple lymph node involvments and still are doing well today??

They are going to see if the tumor in my side reacts to any of the the inhibitors so that hopefully I can do a clinical trial.

I am just so so so devestated right now.  I feel hopeless and I would really really like to hear that it is possible to survive a large tumor with multiple  and deeper lymph nodes involved. 

Please respond.  Thank you

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ErikaHouston2's picture
Replies 2
Last reply 8/30/2010 - 12:38pm
Replies by: Jim in Denver, PhyllisP

How long does it usually take you to get your results? Had PET CT on Friday @ 1pm .

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ALA's picture
Replies 5
Last reply 8/30/2010 - 12:14pm
Replies by: ALA, washoegal, Fen, molly

Sept 2009 I was diagnosed with stage IIB melanoma, 11 mm deep but not ulcerated removed from mid back, margins clean.  SNB was not performed as the doctor assumed lymph node involvement given the depth.  Whole body PET scan and sonogram of suspect lymph nodes at neck and arm pit were clear.  Because my insurance ruled this a pre-existing condition I could not afford the recommended adjuvant interferon therapy and opted for watchful waiting.  Coming up on a year now with no articulable symptoms of recurrence or remote metastases which brings me to the subject.  Is there a recommended progression of follow up tests (from least to most expensive or with the greatest chance of detecting disease) I should be considering at this juncture?  Best wishes to all, Alan.

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Bill G's picture
Replies 5
Last reply 8/30/2010 - 10:18am

At outset given odds 25% for  5year survival, because location on top of head 4mm+ tumor and numerous satellites

Bill G

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joy_'s picture
Replies 9
Last reply 8/30/2010 - 12:01am

My husband is 6 weeks into recovery from LND of the groin.  He still can't completely straighten his leg.  He says it feels like his tendon is too short (pulls from behind his knee up to his groin).  Is this normal?  Has anyone else experienced this?  If so about how long until things were back to "normal."

He also says he has a "big section" of the front side of his leg where he feels nothing.  Permanent nerve damage?  Get better over time?

I guess we could wait until his recheck in a couple of weeks to ask the Dr but you all are so kind and helpful that I thought I would go ahead and ask here.

Thanks in advance for any and all responses.

Tracy

wife to Bill, stage IIIc

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uvagirl06's picture
Replies 14
Last reply 8/29/2010 - 7:25pm

I can't even believe I'm writing this, but here goes my introduction. I'm 28, female, and just diagnosed with melanoma. It is believed to be localized, but they do have to go back in and remove a larger area around where the mole was. I had another mole tested and it came back as highly abnormal (not malignant as far as they could tell) and something about possibly invasive. The pathologist actually called my doctor because they were so concerned since I'm so young.

I've had the normal sunburns, but I don't use tanning beds (with the exception of a few times before my wedding 6 years ago), and I'm not someone who is always in the sun.

My doctor is talking to a dermantoligst to see how we should approach this.

I'm so scared right now. I also have another issue going on in which I am having a kidney ultrasound today for. It could be nothing or it could be cancer which would be extremely rare for my age, but then again, I now have skin cancer at 28.

I'm hoping to find some comfort and community in this group.

Thanks,

uvagirl06

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There's an update on Jerry on the otbb.  He is making progress.

 

Jackie W

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shaz's picture
Replies 9
Last reply 8/29/2010 - 10:26am
Replies by: bcforce, Rocklove, vickirs, James from Sydney, Anonymous, molly

Started feeling slight pains in my lower back about 2 months ago and had been feeling slightly nauseous for some time too, explained both away with stress and studying too hard for my final exams. I then started having really bad pains in my shoulder and couldn't sleep at night. Long and short of it (and lots of poking and tests later) I have metastases to my liver, lungs and bones.

For the last 4 years it has been lesions and mets 'just in the skin', I never imagined it would come to this. I've started six rounds of dacarbazine, each round takes place once every three weeks and i've also started a bone strenthening treatment, zometa, which will be given indefinitely.

Anybody have any positive stories about recovery from this extent of mets? i would really love to hear some.... there are so much negative stories out there.

Could you also please advise about the treatment I'm on? Is this enough?

Thank you so much!

 

 

 

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pam from jersey's picture
Replies 13
Last reply 8/29/2010 - 10:22am

Hi All,

I've just been diagnosed with Stage IIIa from Sloan Kettering in NYC - I had a mole on my upper left back that came back 1.25mm - they did a wide excision surgery and a sentinal lymph node biopsy. 

 

Here's my path results:

 

DIAGNOSIS:

 

1.  Left upper back wide excision

- cicatrix

-no melanoma seen

 

2.  left axillary sentinel lymph node #1:

- metastatic melanoma in one lymph node

Note:  No extension into extranodal soft tissue is seen

 

3.  sentinel node #2 left axilla

one lymph node, negative for melanoma on levels and immunostains for s100p and melan - a

 

I met with Oncologist who said he will see me on September 27th - he recommended a CT scan which I had this past Saturday and I meet with the surgeon tomorrow to go over the results and to have pre-admission testing done  - He said he will see me back on the 27th of September to discuss further options (wait and see approach, participating in some type of protocol prophylactically (sp?)

I don't know..... everyone I talk to is wondering why am I not put on some type of chemo, or intereferon, or WHATEVER  -  Is it because the 2nd node was clean that it's not a priority???   I just don't know what to think - it's so depressing some things you read on the internet  -  

Can I sleep good tonight before getting my CT results?   HELP!!!   

p.s.  I'm 45 and in great health otherwise

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esposir2's picture
Replies 0

Hello Has anyone tried this new trial drug

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