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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cindyeh's picture
Replies 4
Last reply 3/23/2011 - 8:11pm
Replies by: Sharyn, Vermont_Donna, Anonymous

My husband is having his 3rd IPI infusion tomorrow.  He has intransit lesions on his upper groin area, a few below the knee, but mainly all upper thigh/groin area.  For those of you have had intransits and had an IPI response, how did they go away?  Absorb back into the skin or fall off??  My husband has many of them and they are almost one big whole scabbed area on the whole front of his thigh.  Some ooze and bleed, but they do seem to be drying up in areas.  He has lymph edema quite bad now. 

 

Thanks, Cindy

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Jeff's Mom's picture
Replies 4
Last reply 3/23/2011 - 9:55am

Thank you for your kind replies on my previous post about my son's treatment options.   So many of your stories are heroic and inspirational, and I hope that a cure will soon be found for this awful disease.  

My questions deal with IPI -  I've read that it will soon be approved by the FDA.  Any information on when??  Also, will it be used for all stages of melanoma?  Has it been shown to stop recurrence with only unresected tumor growth?  Any information would certainly be welcome as we are looking into a possible IPI clinical trial with (unfortunately) a placebo arm.

Thanks!

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Nebr78's picture
Replies 7
Last reply 3/23/2011 - 4:44am

I have just finished strong radiation on the side of my face and on chest.  Both lumps were about the size of a golf ball.   They are now aboujt the size of a big marble. Lots of side effects, sore throat, very weak, congestion in chest but getting over all of it.

 

I also know I have a lump inside my lung and possibly one on spleen.

Can anyone tell me what it may feel like when the lump in the lung gets so large that it disturbs things??  Please.

I  am the one that has had heart disease for over 40 yrs so know I won't last too long.

I have been to several doctors and all they will tell me is it might do this, or do that, or do nothing. I am so  disturbed about the answers I get from Cancer Doctors.   Which is bacisically nothing.  I  am a 79 yr. old male.  I give no hope whatsoever about any kind of a cure.  Big business.

It gets harder to deal with each day. People at cancer centers just try to make you feel good about dying.  I can't accept.that.

Anyone who thinks they may know some kind of answer about my question, I will appreciate a reply.   Thanks

Retired in Nebraska

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MaryMary73's picture
Replies 16
Last reply 3/23/2011 - 1:51am

Tomorrow, I am seeing my dermatologist. This is my 1st appointment post diagnosis.

This evening, I ask my husband to unhook my bra because my hands were a bit dirty (I was cooking). I tell him "while you're at it, tell me if you see anything funny". I always ask him to do that. He usually checks around my WLE scar. So as he is scanning my back, he tells me "there's a weird looking mole here and I think it may be new". He took a picture of it. It is light brown, round, but one side is just a shade lighter than the other side (if a line is drawn thru the middle). It is on my upper back, not too far from my shoulder blade. The WLE scar is in the lower middle of my back.

Holy smokes...here we go again. Thank goodness I'm seeing my derm tomorrow because in all honesty, I am having a total panic attack.

sad

The only real wisdom is knowing you know nothing -Socrates

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Lisa13's picture
Replies 6
Last reply 3/22/2011 - 9:46pm

Yesterday I received my pathology report from the surgery I had a month ago.  I have a nodular melanoma 22MM deep, ulcerated with 1 lymph node out of 19 positive for melanoma. That being said, I'm relieved that only 1 lymph node was involved, but now, I'm VERY concerned with how deep it is.  My mitotic value is surprisingly low (1) which is rare for a deep tumour.  I'm also currently NED as per PET scan results.

Anyway, is there anyone out there whose had a deep tumour or nodular melanoma with similar characteristics?  Everything I read about this melanoma is BAD and I know the prognosis is BAD, so I'm really hoping there is someone out there who has beaten the statistics.   I'm also wondering if it's do deep, does it even matter how many lymph nodes are involved. 

I'm now deciding between Interferon or hoping this Ipilumumab gets approved so I can get get myself over to the U.S. for treatment.  Any advice, any help?  I've got a 16 month old daughter, so my goal is to keep this away for as long as possible.

P.S  I must thank my dermatologist who LAST September told me it was a sebaceous cyst!

 

Thanks!

Lisa

Many impossible things have been accomplished for those who refuse to quit

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Rebecca and Bob's picture
Replies 2
Last reply 3/22/2011 - 2:57pm
Replies by: Anonymous, lhaley

Hi all,

The anxiety always gets tough the week before going in and the past two days for me have been partically hard. It doesn't help that I ran out of sleep aid. I keep wondering if it will ever get easier. This will be 20 months since my husbands last surgery and we are just praying he is still NED.

Thinking of everyone here always.

 

Rebecca

Believe

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Anonymous's picture
Replies 1
Last reply 3/22/2011 - 2:52pm
Replies by: Anonymous

Hi All,

Been away from MPIP & trying ti catch up.

Last I heard, Kevin was back at NIH for tests. Has anyone heard fom him. Hoping for good news, we certainly could need some!

Douglas

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mom3girlsFL's picture
Replies 6
Last reply 3/22/2011 - 11:10am

First let me say thanks for the congrats on my NED!  I am thrilled and will certainly be planning a summer trip with my family.

Second, hmm...how do I go about saying this?  Shame on you for your blog about your insurance company finding a more cost effective route for your radiation treatments by sending you to the crew in Japan!!!  Now, having said that, thanks for making me snort coffee out my nose and all over my keyboard when I laughed out loud at the comment!  Shame on us both!

Now, about the music.  I feel honored, never had a song written in my honor before!  I don't know if you are up to challenge though.  Let me explain...I have learned,  while reading your blog and your musical choices,  that we are either separated by a "few" years or have, clearly, different opinions on music.  Don't get me wrong (don't want to blow my chances of getting a song!) - I can certainly appreciate your talent but would love to see what you can do with the "Bee Gees", "Maroon 5", "Journey" - oh screw it, I don't know...just do your thing, I'm sure I'll love it!

Seriously though, keep on blogging - you got me through a very anxious week!

Laurie 

Do not fear tomorrow, God is already there.

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Jlynn2303's picture
Replies 6
Last reply 3/21/2011 - 11:04pm

Hi,
I wrote in an earlier post about my 63-yo step mother who was dx with melanoma in the lung last October. It had been found three years previously, but untreated. I've been able to find that if it has metastasized to other organs it is stage 4, general prognosis (5 years, difficult to treat) and various other info on typical sites for mets, etc. What I can't find is what actually might happen to her life.

She's never been the healthiest, was/is overweight, doesn't exercise or do much, etc. Pretty much a couch potato with no desire to do anything different now that she has cancer, so nothing has changed (she had a lung lobe removed last fall and they found no other signs). And even with all this talk of stage 4, etc she just doesn't seem any different now than she did 3 years ago when it was first discovered (though they didn't tell her until last October so it was undiscovered, untreated and allowed to grow for 3 years) or even three years before that. We are doing the watch and wait thing - but no one seems to know what we are waiting FOR. For it to recur, but what does that look like, what does it mean?

I just don't understand how, if it is stage 4, how she could not seem sick? Or feel worse? I hate to be morbid, but I'd like to know what to look for, how to be prepared. If the prognosis is typically 5 years, what does that mean? At this point, there is no treatment happening. Every couple of months they go see a doc. She will go to have ovarian cysts removed on March 21st, but they say they are benign, the PET scan showed nothing although the CA125 was over 1000. And life has just sort of settled back to the way it was before. Everything I've read says this is serious, but only talks in very general terms about prognosis and treatment.

Not that it is certain that this will kill her but statistically, the probability seems high(she seems rather resigned, as her gma, father and brother all died from cancer), but I don't even know what to watch or plan for.

What actually causes death? No one wants to talk about this, and I know, because of history and family dynamics that dealing with this will fall largely to me, so I'd like to have some idea of what actually, day to day, happens. I don't have any say in the treatment itself, don't go to doctor visits, etc. but can pass along useful questions to ask to my dad.

Thanks,
Jennifer

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Bruce in NH's picture
Replies 5
Last reply 3/21/2011 - 6:26pm

Hi,

I haven't posted for a while but logged in this morning and saw the success Rocco has had with ipilimumab - fantastic! Last summer I completed the first round of ipi and my PET scan in November showed three small tumors as stable - good news! So I was disappointed when I had a follow-up PET scan in February, only to find out the chest wall tumor grew by 50% and a fourth tumor is growing in the same region - bummer! So my onc has restarted the ipi program for the second time. My second infusion is this Thursday. Fortunately I tolerate the side effects well as compared to IL2 and biochemo therapies in 2009. So it's wait and see again. The good news is that the chest wall tumors are easily operable as compared to the center chest and left lung tumors that still remain stable after 2+ years - yea! Hoping ipi knocks them all down this time!

My best wishes to all of you who continue to fight this disease. I feel very fortunate to have celebrated my 10th year of fighting melanoma back in October. So continue the fight with me and enjoy life as I do to the fullest!

Take care,

Bruce in NH

Life is a journey, not a destination. Enjoy every minute of it with family, friends, and with others who may be ill and fighting melanoma.

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Mapes84's picture
Replies 4
Last reply 3/21/2011 - 10:54am

Hello all! I was hoping to gain some insight as to why my derm may have decided to perform a shave biopsy on my last appointment. Her decision to do this is causing me some anxiety!

A little history: I was diagnosed with a melanoma in situ in 2009 at the age of 25. I had a WLE (no SLNB), and haven't had any problems since. I have been attending my check ups twice yearly, and I have had two other spots biopsied since the melanoma. My derm performed punch biopsies for both of these. One of them came back atypical, but they were both benign.

I had a check up on Thursday, and I showed my dr. a spot that has had me particularly concerned. I noticed one day that it had a strange appearance (irregular border, two shades of brown) and made a mental note to "watch it", as I had a check up approaching within the month. Almost overnight, the spot (which had been completely flat) started to feel elevated. A few days later, it started scabbing. Eek.

Anyway, predictably, she said she would do a biopsy "to be on the safe side". As usual, I turned and looked the other direction while she performed the biopsy because that stuff turns my stomach :p . Suddenly, I felt her putting a bandage on, and I realized that it was over way too quickly. I asked her if she had performed a shave biopsy this time, and she stated that she had. I asked her (politely) why, since we have never done this before. She stated, "I have my reasons" (?!), then mumbled something about catching it really early if it was anything bad.

I don't claim to be a doctor, and I don't know a ton about this stuff, but I was under the impression that shave biopsies are a big no-no if melanoma is even remotely suspected. Was this done out of laziness? I don't understand. Is it time to look for a new dr.?

I am still awaiting biopsy results, but my next question is this: I am aware that a shave biopsy can interfere with staging if melanoma is present. Can a shave biopsy result in a false-negative? This is really bugging me.

Thank you in advance!

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cheryl brodersen's picture
Replies 7
Last reply 3/21/2011 - 5:36am

I was on this bb in the spring when my husband, Steve's scan showed a lit up right tonsil. Even though there are only about 30 cases of MM going to the tonsil, his was indeed metastatic. Just so everyone knows, it can happen so don't assume it's an infection (as we first did) just because it is so rare. And a tonsillectomy after 50 is NOT FUN. Good luck to all!

"There is no such thing as a normal life, Wyatt. There's just life." Doc Holliday to Wyatt Earp, Tombstone (movie)

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dawn dion's picture
Replies 5
Last reply 3/21/2011 - 1:53am

So today was a little frustrating.   Finally had some side effects - wondered when they would show up :)  Anyway - not to bad - hip joints hurt a little, verry tired today.   I am a person that goes non-stop so when I have to slow down it is frustrating.  Also had a low grade fever about 100 - 101 took a couple of tylenol slept allll day - and now all seems to be right with the world.   Go back to Moffit tomorrow for EKG and visit.   So far so good.   I hope the others of you on the forum riding a the B-RAF train are doing as well.

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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alleycat's picture
Replies 4
Last reply 3/20/2011 - 9:19pm
Replies by: LynnLuc, Soupison, Nicky, molly

My husband was diagnosed with Desmoplastic Melanoma (DM) on the crown of his head, which is a rare type that affects anywhere from 1% - 4% of melanomas depending on what you read.  It also frequently recurs locally.  As such, the doctor says that the melanoma does not behave in the same ways as other types.  DM has no color usually, his was just a bump on his head.  As such, it usually goes undiagnosed and can get quite large before it gets recognized.  We thought it was a cyst.

He had surgery 2 weeks ago to remove 2 cm margin around the site, replacing the tissue with a skin graft.  They did not do lymph node biopsy because of the location of the lymph nodes, and the percentage of lymph node involvement with DM is only 7% usually.   We got the pathology report back.  The margins were clear, but I'm concerned about the other things I'm reading in the path report.  When I look them up on the internet, most of the features look very negative.  The doctor says that DM doesn't follow the normal course, and I hope he's right.  Anyone know about this?  

Here are the results:

Top of scalp, excision:

Histologic type:  Malignant melanoma, desmoplastic type, sectional edges involved comment.

Clark's level:  V

Breslow depth:  At least 0.5 cm

Vertical growth phase:  Present

Ulceration:  Absent.

Lymphovascular invasion:  Absent.

Perineural invasion:  Present

Tumor infiltrating lymphocytes:  Not brisk.

Regression:  Absent

Mitotic figures:  Up to 5 per mm squared

Tumor micros-satellites:  Absent

Precursor lesions:  Absent

"The lesion extends to and involves the deep inked margin and is <1 mm from the 12 o'clock inked margin.  The 3, 6, and 9 o'clock margins appear clear by >1.0 cm.  The separately submitted en face margins show multiple foci of atypical intraepidermal melanocytic proliferation which may represent a field effect phenomenon."

Pathologic stage:  pT4a, pNX, pMX

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kbc123's picture
Replies 16
Last reply 3/20/2011 - 3:32pm

Finally going to NYU for my second opinion on my supposed 3A melanoma disease on Monday .  I had an appointment with Anna Pavlik, who I wanted to see because of all the good things I heard, I am now seeing Dr. Ott in her office.  Any feedback on this??

Its bad enough we have to go thru this, make the appointments in advance just to go see someone that may save your life, just to hear "sorry, something has come up."  I am disgusted, aggravated and stressed to the limit.

 

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