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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cwu's picture
Replies 1
Last reply 1/18/2012 - 7:28pm
Replies by: FormerCaregiver

Hi everyone,

It has been some time since I last posted.  My dad finished his last Yervoy treatment in mid-November. After Thanksgiving, he was hospitalized for 10 days due to what his oncologist think was a severe side effect from Yervoy.  His sodium level dropped and he was weak and confused and didnt know who he was and who we were. his oncologist thinks that Yervoy caused imflammation in a part of his brain which regulates his sodium level. He was given sodium via IV and treated with steroids to reduce the imflammation in his brain.  He was on salt tablets after he was discharged from the hospital and had his salt level followed through bloodwork for a few weeks to make sure it returned to normal. Dad is ok now but it was really scary.

We dont yet know whether Yervoy worked for him, his lesions dont appear to flatten or regress. They dont seem to have gotten bigger either so we are hoping that Yervoy is keepin them at bay.  His oncologist has told us that he can only offer us decarbazine and didnt think dad can qualify for clincial trials due to his age. We have delayed the 16 week scans and will go for the 20 week scans.  At this point, we dont really want to know the results of the scans since there are no more options available. We hope dad's melanoma is not aggressive and we will just wait and see. Dad is still itchy from the Yervoy and still has to take his itchy medication.

Thank you everyone for your support and advice.


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Anonymous's picture
Replies 5
Last reply 1/18/2012 - 6:35pm
Replies by: KatyWI, mrsmarilyn, CarolA, Anonymous

about to have an slnb in armpit with wide area excision on my arm with hand that i use for cleaning up after going to toiler

after slnb will i be able to go to toilet normally and clearn up with hands on predominant arm?  if not, what options to prepare for

tia for your advice 

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audgator's picture
Replies 3
Last reply 1/18/2012 - 2:07pm
Replies by: Lisa13, NYKaren, Gene_S

I had my 3rd of 4 ipi treatments last week. Before that treatment I had developed an itchy rash on my shins...many small red bumps. Probably my first side effect. I treated it with 1% hydocortizone cream & it stopped itching but left behind the red marks. Now it has moved to my thighs and arms. The thing is, I've had something similar to this before. Before starting ipi, but after diagnosis. Maybe while in interferon, but I'm not sure. Does this sound familiar to anyone?

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JoshF's picture
Replies 8
Last reply 1/18/2012 - 1:54pm

Good Morning-

I was wondering if anyone out there could answer some questions about imaging tests. I had a PET/CT (I think CT was included...not sure) in April of 2011...No Evidence of Distant Disease. November/December of 2011 I had CT of Chest/Neck (found cyst in sinus), MRI of Brain (NED), and CT of Abdomen & Pelvis which showed a 1.5cm spot which onc thought was nothing but given melanoma history wanted an MRI which came negative as it was as he expected...a hemangioma of the liver. So has anyone run into similar situations? Also wouldn't a PET scan pick these things up? As you are all aware of how sneaky melanoma really has me scared. Thanks for support.


Let's work for better treatments....for a cure!!!!

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Lauri England's picture
Replies 1
Last reply 1/18/2012 - 8:55am
Replies by: JoshF

CT/PET thorax findings

Mediastinal structures are unremarkable.  No evidence of adenopathy or mass. Lung parenchyma and pleural spaces are normal. Bone structures are normal.  NOTHING NOTED ABOUT THE NODUAL FROM THE PREVIOUS CT SCAN SO MAYBE IT IS GONE.

The liver and biliary tree are unremarkable.  I GUESS THIS MEANS MY LIVER IS OK AS WELL.

CT/PET pelvis findings

Subtle focus of activity in the right pelvic region appears to be social with oval structure measuring up to 2.9cm in greatest size best seen at slice position -603.76.  I suspect this more likely represents old variant uptake in the ovary rather than representing metastatic abnormality.  SUV maximum 3.2.  Altrasound would confirm.

I assume this means there is something aroung my right ovary that I will probably be getting an altrasound of.  I guess this is not a bad report.  I do wish I could get a clear one though and I can say I am NED.  I see the doctor Thrusday of course to discus results.  I also have an appt Friday with Melanoma specialist in GR for a 2nd opinion of all my scans. 

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

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SABKLYN's picture
Replies 3
Last reply 1/18/2012 - 6:54am

I was recently diagnosed through a sentinel node biopsy with Stage 3a melanoma. My pathology was very unusual and most physicians I have dealt within this short time, have told me they "backed into" the diagnosis. As such, they are treating it as though it is melanoma. I had PET and CAT scans which were clean. My doctors at Sloan Kettering believe that I may be as well off with ultra sound observation every three months as with total lymph node removal. They are offering both options. Any thoughts? Thanks in advance!

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Suzan AB's picture
Replies 1
Last reply 1/18/2012 - 1:54am
Replies by: davidfromsingapore

Hello All,
The yoyo melanoma warrior is back online. I was lucky enough to get into the expanded gsk trial at UCSF with Dr. Daud and Dr. Algazi...I am so very greatful to be one of the braf-k folks to be included in this trial. (I was not discriminated against because i was not braf-e...whooohoo)

So far i have an overall 30% tumor reduction with some tumors being resulved...some of the more stuborn boys grew slightly, some stayed the same, and some of the boys just disappeared. George ans Oscar the grouch were removed then tourched before being placed on slides to endure more horrores at the hads of the pathologists...hahahaha

I was wondering if the other braf/mek Warriors were expericing side effects...mine are mangable but they kicked my butt this past few weeks...chills, fever and weird ouchy spots on my legs....i am greatful forfor the side effects because it means the medicine is working...WhooHoo
My best to all with blessings and love hugs,
Susan AB

Presently...One Day At A Time.

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Theresa123's picture
Replies 4
Last reply 1/18/2012 - 1:13am
Replies by: Rona, Theresa123, hope4cure1

Thank God for Dr. Boasberg at the Angeles Clinic.  I had a response to the Yervoy, I had two 4 dose rounds with 3 ml/kg.  Two tumors have shrunk, and one got bigger, Dr. says it is probably inflamed.  This is my 12 catscan/petscan results.  He says I have chronic Stage IV cancer now not terminal.  That is better!!!  I have had interferon (horrible!,) Biochemo, and TIL (at NIH) with no results until now.  I have had a lot of nausea, exhaustion, coughing, and rash but that is a piece of cake compared to the side effects all the other treatments gave me.  Yay!! 

Every day is a miracle.

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Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Replies by: Jenjen

URGENT – TODAY – Seventeen Magazine Seeking Young Melanoma Survivor

Seventeen magazine is continuing their good work to educate their readers about the risks of tanning and of melanoma.  They would like to identify a young woman, age 15-25, to feature in their story.  It is possible that the interview may involve travel to New York in early February. 

If you have a history of tanning, have been diagnosed with melanoma, and are a woman age 15-25, please complete this very brief survey no later than noon, Wednesday January 18:

We are grateful to everyone within the MPIP community for your help in educating the public about melanoma! 


Shelby - MRF and the Jones Public Affair team 

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Lauri England's picture
Replies 3
Last reply 1/17/2012 - 5:07pm

I called my Onc office yesterday morning at 9am to see if I could get my PET scan results.  The lady at the front desk confirmed that the Path report was there and the doctor had signed off on it.  She said a nurse would call me later with results.  Well I called again at 4pm and was told that they were very busy today and nurse probably did not get to it yet and to be patient.  Well, then suddenly it was 5pm and the office was closed.  At 8:30am this morning I received a call from nurse there and she just had some questions about a release of medical records that she received from Melanoma Clinic in GR.  She said she sees that there is a note out there on my electronic file to contact me for Path results.  She asked if she could place me on hold for a minute, It was about 5 minutes.  Anyway she come back on and said she could not give me results to my test but she would tell me that from a nurses point of view the results looked OK...So not to worry myself to much.  That was all the info she could give to me and said the doctor wants to give me results Thursday at my appointment.  Are you kidding me???Do they not realize how stressful waiting is????No probably not. When we got off the phone I called Breslin back and wanted to see if I was still going to be contacted by a nurse with the results that I was told I could get and had confirmed with the 1st phone call yesterday that they were in and the doctor had signed off of them.  The lady I spoke to this time said if the nurses called each patient with results to tests that had been run they would be on the phone all day long.  No way I could be hearing this.  I wanted to explode.  She told me that worse case scenario I would get the results Thursday.  I am so upset.  I have never had a problem getting Path report over the phone, ever.  The last time in October I was told that the nurse had to get the doctors permission to release path results to me but it was same day.  I was also informed both of my doctors are out today so there is nothing I can do today.  The last time the doctors permission was needed to release info they found some things and I can't help but get a bad feeling this time.  I am trying to get through the rest of today and pray they call tomorrow.  It just does not feel good to me and I have a bad feeling.  Any thoughts????

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

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mrsmarilyn's picture
Replies 4
Last reply 1/17/2012 - 3:37pm
Replies by: mrsmarilyn, Suzan AB

Hello- We have been rolling along wonderful on BRAF/MEK GSK trial since 02/2009.  HOWEVER, a rapidly growing mass has not occurred in shoulder and humerus.  So painful, we have to have surgery scheduled quickly.  Has anyone had such a mixed result - with 7 tumors that have shrank, and now all of a sudden this shoulder tumor is growing rapidly?  Has anyone had shoulder reconstructive surgery?  We will be going back to Nashville.  If we are disallowed from the currentl clinical trial of GSK/MEK - what now?

Thanks - Love and Prayers to all.


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marfda's picture
Replies 9
Last reply 1/17/2012 - 3:28pm
Replies by: ad2424, NYKaren, kylez, marfda, Anonymous, Karin L

I am finishing radiation of my lower back for subq tumors tomorrow! Unfortunately, my PET scan showed tumor activity in my groin and armpit lymph nodes. This is my first non local and non subq activity since my diagnosis in '09. My oncologist is recommending IL-2 beginning right after Christmas. He wants to give it a shot before my cancer is any further advanced. I am happy to take a more agressive approach, although it is going to be tough to schedule all the details with caring for my 5 and 7 year olds. A few questions for you IL-2 veterans.

1. Is this treatment really given in the ICU? I know every hospital is different, but how did this limit visitors for you?

2. How important is it that I have someone with me? Would part time be alright? Will this be traumatic for the people who accompany me?

3. I had a port for interferon and am having it "re installed" (i'm sure that's the wrong term!) :) Will they put it in the same place as before?

4. Any other advice? I'm sure I'll come up with more questions later?

5. Oh! Did anyone else have IL-2 in Tucson? I'd love to ask some UMC specific questions!

THANK YOU ALL for you insight and advice! 

Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or danger, or sword?... No, in all these things we are more than conquerors through him who loved us. Romans 8:35–37

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jmmm's picture
Replies 5
Last reply 1/17/2012 - 1:05pm
Replies by: MariaH, LynnLuc, glewis923, Anonymous

We are attempting a trip to DisneyWorld in a couple of weeks. My husband had a craniotomy at the end of November and gamma knife 2 weeks ago. The neurosurgeon isn't thrilled with our plans, but we don't know how much longer he has and want to have this memory without children. So, we're looking for the "best" hospital in Orlando, just in case. A good neurosurgery department is important. I don't think they'll be any cancer issues, but a good cancer center would be good, too. Any thoughts or ideas?

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CMH's picture
Replies 2
Last reply 1/17/2012 - 12:32pm
Replies by: Minnesota, Janner

I noticed a "beauty mark" on my neck in 2009 (ignorantly didn't worry about it.)  That same year I developed extreme itching all over my body, especially my legs and especially at night.  Any pressure on my skin leaves a blotchy red hive for 10 minutes or so.  While the hives are present I can feel a warm burning sensation.  This was new and very strange for me. A derm told me I had dermatographic urticaria, or skin-writing.  In October of 2011 I went to a new derm for something else and she removed 3 "ugly ducklings" (one was the beauty mark on my neck!)  That one came back amelanotic melanoma (Stage 1b), one was moderately atypical, and one was sBCC.  I had a PET scan (negative) and a WME.  My SNB was negative.  Has anyone else ever experienced a problem with hives and itching prior to melanoma diagnosis?

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