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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Well unfortunately I was right. One was a pseudocyst with gelatinous material and no melanoma. The second was falling apart as the surgeon took it out and was. Reported as friable with fatty tissue and sheets of melanoma cells..

1 week post op I have a lump in the region where the bad lump came out. The oncologist thinks probably a hematoma related to surgery. Too fast for a 4-5 cm tumor to pop up. It also appears bruised on skin surface. Of course I'm worried about that tumor falling apart and having melanoma cells.

I had a long talk w D Samlowski who discussed treatment options. He thinks 1st choice should be biochemotherapy w chemo drug (which I can't remember name of) along w IL-2 and interferon. I've just started to read a bit and it sounds like there are different regimens. His regimen was 4 days in hospital ICU with above drugs followed by 3 injections of low dose interferon the following week. Two weeks off and repeat 3 more times.

Has anyone done this version? I will find out the chemo portion tomorrow when I call his nurse. Did it work? I don't think the month of high dose interferon did much since this came up so soon ( or maybe it's because I couldn't tolerate or afford the other 48 weeks). This will be at a lower dose and I will just deal with it no matter as I would really like to kick this melanoma to the curb and move on.

He is reserving other treatments in case we need them later.

Any thoughts? We didn't discuss radiation, but I have been thinking maybe the should be done as well? Or before biochemo?

Julie in Las Vegas

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Charlie S's picture
Replies 4
Last reply 7/11/2011 - 8:21am
Replies by: Carol Taylor, Anonymous, washoegal, Charlie S

A question was posed to me the other day by a  seeking melanoma patient for which I had no effective/relative  answer and  therefor would ask for your collective wisdom and input.

Here was the question:  " By all clinical indications, I am about to progress to Stage IV and I am personally scared to death.  My second marriage is not all that great anyway, but this is putting an additional strain on it and I do not know what to do to reconcile my marriage and my personal fears"

 

It wasn't exactly like that, but pretty close.  Though I have been there and done that, my insight might not really be relevant by todays perspective.  I'm just glad I am past this, but the person who asked me is not.

 

So, in the hopes that this person might read your collective wisdom. rather than my out dated point of view..................how  bout some input?

Cheers.

Charlie S

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ValinMtl's picture
Replies 6
Last reply 7/16/2011 - 8:53pm
Replies by: wgalinat, Terra, ValinMtl, Bruce in NH, Anonymous

Well, back from NIH -NCI in  Maryland.  They removed 2 masses in left groin (2 lymph nodes).  Now into lab to produce the white cells (TIL) that will be needed for trial.  Will fly back down for meeting to discuss which arm of trial I will be on.  Would prefer total body radiation arm but other arm is good as well. Thank goodness for Warren G.'s timely report on being healthy after 5 years! and for his kind assistance. I was so down about a month ago with not any other 'good' plan available in Quebec.  NIH happened to start up the same trial again in March and I was accepted!! 

Can't say enough about the treatment and wonderful staff at NIH.  Warren, you were right, I'm in good hands!

Val - stage IV (failed interferon, many surgeries, failed temodar, partial responder to ipilimumab but eventually removed from trial)    

http://www.clinicaltrials.gov/ct2/show/NCT01319565?term=11-c-0123&rank=1

Live Laugh Love Nothing is worth more than this day!

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trishahimm's picture
Replies 13
Last reply 8/10/2011 - 4:21am

I am new to this, and my post might end up a little long, but please, any information will help.

My 59 year old father was diagnosed with a large malignant melanoma on the ball of his foot in May. It had been growing there for months before he finally had it tested. His GP told him it looked like he stepped on something and to put neosporin on it in August last year. Instead of going back after a few weeks when it didn't go away, he just put Neosporin on it everyday for months as it continued to grow larger. I knew nothing about this until May when he was diagnosed. A month ago, he had the tumor removed and plastic surgery to hopefully keep the foot usable. Before the surgery, the surgeon was very bleak about my dad's prospects, saying that it was a particularly rare type of melanoma and to basically start to think about how he wants to be cared for at the end. We were all panicked, but then the PET scan was clear, so we were then very excited that it was just in his foot. They removed 5 LN during the surgery from his groin area, we thought just as a precaution since the PET scan was clear. I didn't know until later that the PET scan doesn't show cancer in the LNs. A week later after we were all celebrating his good luck, we got the news that 4 of the 5 LN had cancer and that he needed another surgery to get the rest of the LN in his groin and thigh area, and then he would need immunotherapy. This next procedure was postponed several weeks due to the extensive wound on his foot.  Finally on Friday, they did a radical lymphadenectomy. We also found out Friday that the 4 cancerous LN they already took out were black. The dr said she removed extensive tissue from mid thigh up into his abdomen. There were several additional black LN found, one of them "deep in his abdomen" and that she took out as much as she possible could with this surgery. She said they have decided they will now do radiation on that area before they start the immunotherapy. She told my mom that they will do all they can, but that they found this very late, and that we are "behind the 8 ball now". My mom just blows her off and calls her "Negative Nancy" all the time and doesn't seem to want to hear any of it. She is of no help at this point in the discussion.

I have read so many positive posts of you all living years with melanoma or even cancer free, but the Dr told my mom if we look online, that we cannot compare, as his melanoma is different than what we will see on the melanoma sites. What does that mean? What info can I give you that might help me find others that have this "rare" melanoma? I have the pathology report from his biopsy that has some info on it that I tried to look up last month, but what denotes that it is a rare kind? Also, what stage is he? 3C? or since they found all the other nodes does that mean he is stage 4? I am confused. Any information will be appreciated, I want to understand what we are up against and what questions to ask the oncologist this week. My dad has practically given up already.

Trisha in CA

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mom3girlsFL's picture
Replies 3
Last reply 7/10/2011 - 1:25pm

Good Morning all,

I was off enjoying a much needed vacation with family in the mountains of Georgia this past week and had a question.  Since my radical groin dissection (Sept 2010, I think) I have had very minimal swelling - surprising my surgeon even.  I did end up seeing a lymphedema specialist who released me after 4 visits b/c I really wasn't having any issues.

Fast forward to vacation and out of nowhere I am swelling pretty good.  From my toes up to about my knee, possibly a little further up.  Elevating my leg is not helping much.  And, of course, since I have had no issues I did not bring my compression shorts on vac with me.  Now that I am home, I've elevated and put on my shorts, with little improvement.

Of course I am worried something may be going on.  Anyone with similar experience?  Should I call the lymphedema specialist tomorrow or my onc and report the new symptom?

Thanks, as always, for your help.

Laurie

Do not fear tomorrow, God is already there.

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DeniseK's picture
Replies 13
Last reply 7/10/2011 - 7:15am

Hi All,

I had a couple questions about tests that should be done to determine if the Melanoma has spread.  At this point I've had my surgery, SLN which was negative.  I just had PET Scan and Brain MRI and they came back clear.  I'm going to see specialists at the Northern California Melaonoma Center in San Francisco either this Wednesday or next.  But I have yet to see an oncologist.  My tumor was breslow depth 14mm clarks level V and ulcerated.  My stage is IIC with a high risk of recurrence.  My questions are what other tests should I have done?  What about a LDH level in my blood?  Shouldn't this be done?  What if the Melanoma went to the bone?  This is concerning to me because my MM was on my chest wall.  Also someone told me that PET scans can't detect tumors smaller than 5mm.  Is this true?  How often do you get PET's in the first year?  Thanks for all your help!!

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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nicoli's picture
Replies 1
Last reply 7/13/2011 - 11:03am
Replies by: TracyLee

Keep us updated. Just like I tell my kids.............if you don't keep in touch, I tend to worry.

Nicki, Stage 3b

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

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lhaley's picture
Replies 7
Last reply 7/11/2011 - 2:34pm

CLEAR!!!   That means I'm now 5 weeks NED!  However, there is always a however, my onc is leary because the location is so close to the last recurrance, and that recurrance is just .5 inches from the one before that. They are still going to excise the lump entirely to be sure.  I'd rather proactive instead of reactive. Radiation will start again once the lump is entirely excised.  They didn't excise the first time because we had decided since surgery had just been 4 weeks before that if it showed to be mel I was going to go systemic with a low tumor burden.

So, until proved otherwise.... I was NED at my stage IV 5 year anniversary!! 

Linda

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NYKaren's picture
Replies 4
Last reply 7/10/2011 - 1:59am

I had my 3rd Ipi infusion yesterday.  I posted about it when I came home, the computer ate my post, then I went to bed.  

I've shared my stomach issues (and I did mention to Dr. Wolchuk that some docs are prescribing Immodium for on-going issues, and he said that it's in the physician instrustructions that they all recieve that Immodium should only be used 2 or three times and if it continues to go onto the Entocort.  It's so weird being on a drug that's so new that not all the docs treat the side-effects the same way--even if they're in the same hospital.)

I now have a mean Ipi rash on my torso.  First you can barely see it, but once I start scratching, it's huge.  They prescribed something like Kenalog creme; doesn't do much & can only be used 2x/day.  The rest of the day I use Eucerine, Sarna, etc.   I was taking Zyrtec & Benedryl, but can only take 2 benedryl at night. Today I told them it's getting worse so they prescribed a stronger antihystimine.  I gotta tell you, being on Ipi sure gets my phone calls returned fast.  They practically want to know if I sneeze twice in a row!

ANYWAY, when he saw the rash, Dr. W was so happy!  He said it looks like I'm definately responding and he's also excited about the white that's running all throughout the melanoma itself (it's on my temple/upper cheek).  He said that he hopes it will start flaking off soon.  From his mouth to G-d's ears!  Even between my first & second infusions, it was starting to spread again, and it's been stable (at least visibly)  since the second infusion.  The radiation had initially stopped the spread, but that didn't last long.  But it did buy me some time from when the Ipi was approved until it was actually available non-trial use, so I guess it did serve some purpose.

I was excited to get my appointment for 3 weeks and a PET scan app't for 3 weeks after that.

Boy have my priorities changed.  My husband has liver disease, and now I pray that both of us will be alive to hold our grandchildren.  My kids (21 & 23) know how much I adore babies/children and they've always teased me that maybe I don't want them to wait to get married so I can be a grandma.  (I do.)  I always took it for granted that I would see my children get married and have children of their own.    I WILL BEAT THIS.

Have a good weekend, everyone.

karen

 

Don't Stop Believing

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Tim--MRF's picture
Replies 3
Last reply 7/9/2011 - 3:53pm
Replies by: MaryD, Cid FLA, Nicky

A melanoma patient was featured on the Today Show this morning.  Doug Schwenker and his wife, Tara, came to MPIP for information during his treatment.  Here's the clip:

 

 

http://today.msnbc.msn.com/id/29054368/ns/kathie_lee_and_hoda/#43670441

 

Tim--MRF

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mbaelaporte's picture
Replies 21
Last reply 8/2/2011 - 1:39pm

I'm new here and want to thank you all for your participation

 

I am five weeks plus into PLX - B Raf trial and from the get go have had very impressive results regarding reduction in tumor size & evidence - tumors very obvious to eye & touch.  My first scans will be in about three weeks since beginning trial and I will post radiology reports.

 

Realizing how new this therapy is and how few patients are involved  with so few oncologists I'm hoping to share / study info on side effects and experiences  with a broader base than even my caregivers might maintain.

 

As I've said tumor reduction has been nothing short of miraculous

other effects:  sensitive warm scalp;

                          a couple bouts of excruciating skin burning pain chin/ears to eye brows ( three days in row about three 

                          weeks ago lasting about 30 minutes per episode ) not sure how much was medication driven or    photo 

                          sensitivity (increased w/ medication) but I had been vigilant in prevention of exposure;

                          increase in actinic keratosis lesions and ones present when trial began more amplified - both my 

                          oncologist & dermotologist who works w/ her think it fine to treat these lesions thinking they are 

                          probably considering combo liquid nitrogen & efudex - Anyone have lesions treated while on B Raf

                          drugs??

                          also just now experiencing very sensitive feelings on the bottom of my feet

 

am most interested in your experiences or information you have garnered

all the best to you, Salud john

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mollysue's picture
Replies 19
Last reply 7/9/2011 - 9:23am

I was just denied for insurance due to a stage 1 melanoma from 3 yrs ago. Mine was very thin. I think it was 1a  and the thinnest the doctor had ever seen. I would like to send a letter to the insurance company as I don't think I am a huge risk. I did have a lymph node taken out due to the doctor being able to "feel one" in my groin. The lymph node was of normal size and negative. The surgeon who took it out said they could feel it because I am thin and in shape. She also stated lymph nodes can enlarge as the bodies natural response to having been insulted.- as in an excision close by. Both of these diagnosis have blocked me from purchasing insurance. Any suggestions as to facts I could use in my letter?

Thanks,

mollysue

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Rebecca and Bob's picture
Replies 3
Last reply 7/11/2011 - 7:13am
Replies by: lhaley, Carol Taylor, Lisa13

 

My husband is going in for scans next week, does the anxiety ever stop? Praying for NED to continue. It will be 2 years since his last surgery. 4 years with all of this so we consider ourselves lucky.

We would like to continue with the bear attack story for now :) when it comes to our 5 and 7 year old. We can always tell the real story when we are old and gray.

 

Rebecca

 

Believe

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StevenK's picture
Replies 9
Last reply 7/12/2011 - 2:58pm

There's a dark spot appearing in my excision scar. It's not a scab and it is really scaring me because it seems to be exactly where the orginal lesion was. The wide excision came back with no signs of mm, so how is this possible? Could mm be back just three weeks later? I called my doctor, but he went home at noon. Have to wait until Monday. Is there something else it could be? Blood beneath the skin? Has anyone else had dark spots in their excision scar that scared them?

Thanks in advance for your reply,

Steve

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Lauri England's picture
Replies 2
Last reply 7/9/2011 - 12:36am
Replies by: FormerCaregiver, akls

I went to the Onc appt yesterday and she felt a bebbie size lump under my right arm. Same arm as melanoma was in originally.  It is hard and I cant tell if it would hurt or not because my underarm is totally numb from lymph node removal a year ago.  The doctor said we can just keep cutting you or we can wait and see.  I am 9 months into interferon and have had no scans.  I have had 3 more moles removed and another lymph node biopsy and all were benign.  Not only is this very costly co pays but I am not sure I want to be cut anymore for a while.  Am I being over cautious?  The doctor felt this one and did not seem to concerned, but she did tell me about it.  What would you do?  I am going to have a CT scan in October right after my interferon treatments are done.  I have also been having problems with my bladder.  I will just suddenly start to urinate in my pants and cant stop it.  I dont even feel the urge to go to the bathroom when this happens.  Has anyone else experienced this?  I am going to be seeing a uralogist in the next couple weeks. 

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

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