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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carol b's picture
Replies 7
Last reply 2/26/2011 - 9:56pm

Well i received 9 doses of IL2. The goal was 14, but we had to skip dose 7 because of my blood pressure and i got 2 more after that and then they decided i had enough. My heart rate finally got stabilized a day and a half later. I was delusional, Had hallucinations which continued 3 days after i got home.OH YEAH little fairies turned into beautiful butterflies .I only had 1 bad hallucinations and i was in the shower and thought i was bleeding out of my feet. The itching is terrible. The pain was tolerable with oxycodon plus a few i cant remember. Usually got sick at my stomach about 3 hours after each treatment.. I had absolutely no appetite. Your taste buds go on vacation, mouth sores take there place. I am to return March 1 to start all over again and im not healed from the first round. So im a little scared .Actually im terrified.surprise I don't know if its doing any good but my husband says he thinks its shrank a little. I tell him to stay positive honey,,,lol...All i know is it makes my tumor hurt like hell. I have edema in my right arm because the PICC line was in my left arm and tumor under my right arm. The started taking my blood pressure in my leg but when it started dropping they wanted to make sure it was accurate so they took it in my arm and thats what causes the edema. Personally i don't feel like i have had enough time to heal before its time to go back but i guess they know what they are doing. Well thats all the info for now.. Peace to all and prayers for each of you..

Carol Bellinger

Metastatic Melanoma

Stage 4

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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Anonymous's picture
Replies 7
Last reply 2/26/2011 - 11:31pm
Replies by: Amy Busby, Vermont_Donna, Carmon in NM, Anonymous

Hi. I know that posting late on a friday afternoon wont get the best response time, but I feel I am in need of more opinions before I speak with my doctors on monday morning.

I am a melanoma patient, who has been on various pain medicine regimens for a few years for various cancer pain issues.

Every 6 to 8 months, my doctors change my meds because I am so afraid of dependency and addiction.

In the past my meds have been: morphine, oxy (codone and contin), dilaudid, fentanyl, methadone, etc....

You name it and I have been on it basically.   I have been on my current meds for about 3 months and have begun to feel they are not working properly. I feel my pain more often and more intense, I get wierd muscle cramps and spasms, I get anxious and have headaches alot too.

Today I realised I may be dependent upon my current meds  and that my body has adjusted itself to the amount of medicine and is essentially "craving" more.

What I am wondering is if anyone else on this board has experienced this and what, if anything, did you do?

I dont know if I can live without any meds, as the pains I experience can be quite debilitating. As it is, my energy levels have gone down the toilet in the past years.

Any advice or help would be so incredibly appreciated, I cannot even begin to say thank you!

I have appointments scheduled with my pain management team the second week of March, but will be calling them if any of these issues get any worse.

And just in case I forgot to mention before, all of the side effects I listed DO go away after I take another dose of my medicine.

I know there are alot of people on this board with more knowledge than me, as well as nurses and caregivers who have dealt with this sort of thing.

Please help me by responding if you can.

Thank you.

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Thank s to all who have replied to my interferon question and concerns. After hearing your stories and reasonings I feel quite a bit more relaxed and sure of my decision. By the way I will be starting the week of the 7th of March. The wait and see aproach does not get it for me as I have always been a hands on , gotta go do something type person most of my life, and just setting around and wondering about it would surerly have driven me crazy and made me wonder and second guess myself. So untill I begin, Thanks again for everyones support and words of wisdom here. 

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WalterA's picture
Replies 3
Last reply 2/25/2011 - 9:40pm
Replies by: King, lhaley, Vermont_Donna

After it was delayed for a week, I had radiofrequency ablation for the lesion on my liver yesterday. The pathologist confirmed that it was melanoma. The doctor said he took good margins. I feel pretty rugged today, but I'm going to remain optimistic.

"Thus I am!" -- Guido in "The Ring and The Book "One day is worth two tomorrows." -- Benjamin Franklin "If it ain't baseball, who cares?" -- Me

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lisa36's picture
Replies 9
Last reply 2/27/2011 - 10:27pm
Replies by: alicia, lisa36, Vermont_Donna, Anonymous, Janner, JoanR, lhaley

It has been a while since I have visited this board.  I keep the entire community in my thoughts and am frequently praying for all effected by this disease.

My first primary was dx in 2006 - Breslow .31 level 4 - SNB neg.  I just had my 5 year check up and was cleared for annual visits and told by my melanoma specialist the odds of this thing coming back are slim to none - Yippee! ....but wait, the next day I received a call from my derm who had removed a mole the week prior stating I have another melanoma.   Derm wants me to go back to melanoma specialist and have the SNB even tho it appears it was caught early.  This 2nd melanoma was a mole that was frozen off over a year and a half ago.  Both docs on mutiple occasions said this is NOT cancer and not to worry.  It started growing back pink -  not the original brown color.  It was then I insisted my derm remove it.   I am very concerned that this mole was not removed and sent for biopsy in the first place and am concerned of the accuracy of the pathology report  because of this.   Anyone have this experience?  Is it possible the mole was benign prior to it being burned off and then grew back malignant?  Is it more likely my doc missed this and burned off a melanoma?  Also, anyone have SNB with such thin lesions?

Below is the path report. Most I understand but a few points are confusing.  Any help with interpretation is greatly appreciated.

The bulk of the process is confined to the epidermis and there is only a small focus of papillary dermis involvement in one or two areas.  The thickness mesuresment seems to be largely accurate although it does extend focally to the base of the specimen.  The lesion would be classified as Clarks level 2 as the paillary dermis is only focally involved in these sections.  Breslows greater than .4mm - There is an asymmetrical melanocytic neoplasm with single malanocytes present diffusely thoughtout the epidermis with minimal melanin.  There is focal involvement of the dermis. Less than one mitotic figuer per high power field was seen.  Thereis a dense inflammatory infiltrate of lymphocytes as well.

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Wetterhorn's picture
Replies 6
Last reply 2/25/2011 - 4:39pm

Just thought I would post that my surgery was a success last Thursday at Sloan Kettering. Had a partial resection of my small bowel, only 1 lesion was found. The recovery has been pretty remarkable and while the surgery was not done laproscopically, I have made significant strides each day. Spent 3 nights in the hospital there and am now back home in full recovery mode. I suppose I can say NED again, but with this being my 5th surgery, I'm a bit hesitant to label myself that. Anyway, needless to say, its a huge relief to get it over with and to be back on the mend again.

Thanks to all the docs and nurses at Sloan. 


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KellieSue's picture
Replies 11
Last reply 6/22/2011 - 4:55am

Well, thankfully my insurance company approved me starting the B-RAF trial, and even quickly at that.

I had to have an extensive eye exam, CT scan of body, ECHO and EKG. Yesterday I met with the head of the trial and was excited to hear I was randomized to the B-RAF drug. She was quite happy too!

I took my first pill last night and am excited to be doing something, instead of just waiting, waiting, waiting for this disease to start growing again in my body!

Here's hoping in 6 weeks I have at least stable scans!

Kellie(from Iowa) Stage IV since June 2008 currently on B-RAF

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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mom3girlsFL's picture
Replies 2
Last reply 2/26/2011 - 2:27pm
Replies by: mom3girlsFL, Suzan AB

Quick history before I let you in my head:

mel '92, .9mm shin

7 yrs NED

2010 inguinal node dissection 9 of 11 nodes positive

start interferon

sept 2010 obturator node mel, radical node dissection, 4 of 5 nodes positive

stop interferon, "watch and wait" since nov 2010

Self #1 "You didn't fail interferon, interferon failed you"

Self #2 "You still failed"

Self #1 "You had a clear scan in November"

Self #2 "Yeah, how long will that last???"

Self #1 "Get out of my head!!!!"

Self #2 "You need me to keep you focused, keep on top of things"

Self #1 "I don't want this anymore, I want my NED, stage 1, 99% cure rate back"

Self #2 "I'm not going anywhere anytime soon...or am I?"

Scene fades into the smurf song -la,la, la, la, la, la...

Okay, so the smurf song - don't ask, I don't know why!  Anyway, another day, another mental challenge!


Do not fear tomorrow, God is already there.

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mzeigler's picture
Replies 1
Last reply 2/24/2011 - 9:19am
Replies by: nickmac56

My wife completed 4 rounds of ipi and had our first scans.  No new mets!  The largest met did not change and the smaller ones looked

slightly larger but not much change.  Now we wait 4 weeks and and repeat scans.  She seems fatigued, and has stiffness and aches

in her joints and muscles.  We can put up with it if it stops the melanoma.  Mean while, doctor is testing for the braf mutation if the ipi does

not work.   He has access to braf/mek drugs and one called E7080.  The one he uses will depend on the test.

It's been a long haul.

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bball's picture
Replies 11
Last reply 6/26/2011 - 11:18am

Most discussions I have seen or to do 30 day interferon vs. one year. Two onc have reccomended to me to watch and wait instead of interferon.

I am 2a but it was 3.4mm ,nodular,and high mitosis. I also am 4 months from diagnosis and still not sure I am doing the best for me. Other than the mel I am very healthy. Thanks for any inpiut. Also has anyone done vit C IV?

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Anonymous's picture
Replies 2
Last reply 2/23/2011 - 5:59pm
Replies by: Phil S, Tracy Chicago

If you are able to get through the year of interferon, does it keep you from getting common illnesses as well as keep the melanoma at bay?

By common illnesses I am referring to colds, flu, etc.

I am aware that it doesnt keep melanoma away forever, but since it does pump up the immune system, it would make sense that common illnesses would be rare as well, doesn't it?

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Lori C's picture
Replies 9
Last reply 2/25/2011 - 7:26pm

Hi to all.   I have published another story about Will's melanoma fight, if anyone would like to read it

I am following this board and keeping you all in my thoughts & prayers.


Lori, caregiver and soul mate to Will

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chrisS's picture
Replies 8
Last reply 2/25/2011 - 8:45pm
Replies by: Anonymous, chrisS, Carmon in NM, Carole K, jag, KatyWI

It's been a tough fight so far. Melissa was diagnosed with stage 4, tumor in chest, liver, and back, 6 months ago. It seems like yesterday we were turned down by NIH and we went in for our first IL2 in Sept along side himynameiskevin. It was both of their first weeks. It seemed to be working(20% shrinkage) after 6 admittance. We began a 2.5 month break 3 weeks ago but she had headaches this past weekend. Took her in yesterday and found out 4 mets and one big one in the front that needs to come out ASAP. My young(32) beautiful, full of life wife is so strong. Prob in a little bit of denial.

Anyone gone through the surgery and know what the risks are?
Will she change? Should I take a leave of absence from work? So many questions.

Happy the tumors in her body have shrank. It is a blessing we went in because we are going to Maui on fri for 3 days, and had some scuba planed. Apparently the water pressure my have caused brain bleeding on the tumors. Man that would have been real bad.

One other question, has anyone traveled in an airplane with brain mets? Is the pressure a problem?
She is now on steroids that have helped her headache and I assume brought down the initial swelling.

Thanks everyone. This board has always been so informative and the LOVE on here is incredible!
Keep up the good work!

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kbc123's picture
Replies 4
Last reply 2/24/2011 - 3:35am

I think now I have more information to go on.  Now I am totally confused as to treatment.  WAIT and WATCH?  Who invented those words anyway?

I had my lymphoscintigraphy, (twice actually-at preadmission for mapping and then again on surgery day) I had SNB and Wide Resection last week.  My results are one lymph node is clear and the other node with single minute aggregate of Mart-1 immunoreactive cells in the subscapular location.. 

Now hearing they are both completely clear would have been my request however my body says different I guess.  My doctor says that this is not that bad.  I am a little concerned about where to go from here.  He basically says all I do right now is go for my CT scans (chest abdomen and pelvis) for a baseline and see me in three months.  He also says to watch for any changes in my body. 

I want to hear from anyone out there with any help with the following.... 

A) Does anyone have info on that lymph node biopsy info above?

B)  Did anyone out there start off where I am starting off right now? 

C) Second opinons are always important.  Believe me,I am a believer in that.  Although I trust the doctor I go to however I would like another eye to look at this..where to go on the East coast?  I was thinking Univ or Penn or Sloan or whereever someone tells me to go at this point. 

D)  I need a dermatologist for full body check.  Not sure about going to where I originally went for mole removal.  I feel like there has to be a Melanoma specialist specifically for that..I may be asking for a lot but I feel like a doctor that treats acne and Botox injections may not be for me?  I could be totally wrong but I searched specifically for that and nothing really comes up.

So much for wanting to be 1A or 1B or even 2.  I guess I am 3 now?  Ugh.  God help me with this..... 

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This abstract (published last month) has confirmed early indications of a survival benefit in a randomized phase 3 trial.



I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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