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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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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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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bdhf's picture
Replies 10
Last reply 1/18/2012 - 11:42pm

For those of you who have either dealt with this or have some base knowledge, I would love some advice!  I had one 3 cm brain met in Dec 2011 which was resected and so far we have not found any other mets.  I am being offered radiation and have to choose between whole brain radiation therapy (WBRT) or Sterotactic Radio therapy (SRT or gamma knife).  I am not quite sure which to choose at this point.  Since there were no other mets it seems reasonable to me that the SRT is a better option as I am leary of the WBRT when there is no other measureable disease.  My thought, and that of one of th two radiation oncologists that I have spoken with, is that I could do the SRT for the tumor bed and then if there are any other mets in the future I can get the WBRT for that, particularly if I am unlucky enough to get brain mets that are inoperable.  I have a call in to my oncologist so that I can speak with her about it but I know I need to make a decision soon and I am just stumped.  Any thoughts or input would be greatly appreciated.  

Thanks!

Brenda

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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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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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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: http://www.surveymonkey.com/s/SWHVSPH

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

Sincerely,

Shelby - MRF and the Jones Public Affair team 

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Anonymous's picture
Anonymous
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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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 is...it really has me scared. Thanks for support.

J

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

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Anonymous's picture
Anonymous
Replies 4
Last reply 1/18/2012 - 8:54pm

Sadly, 

Samantha Channels long battle with melanoma has come to an end. She was taken home to be with God on Sunday, January 15. Please keep her husband and young children in your prayers. R.I.P Samantha.

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Replies by: TracyP, washoegal, CarolA

I am having a sentinel lymph node biopsy done on my right armpit and a wide area excission on my upper arm later this week.

What post surgery impact to expect?

How long to be able to use my arm?

What if any complications to look out for, now to avoid?

How soon can I take a shower?

 

Tx muchly

 

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Suzan AB's picture
Replies 4
Last reply 1/16/2012 - 9:00pm
Replies by: lhaley, Suzan AB

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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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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Manubuzzi's picture
Replies 13
Last reply 9/20/2012 - 11:31am

Greetings everyone,

Just a few lines to tell you that my mother (45 years old) has passed away on January 09th.

She was a great fighter and lived one really good year having this terrible disease, but she lost the battle..

We will miss her so much.... I cant believe that this have happened.

Thank you for all of you, from the bottom of my heart, for your kind words during this terrible period.

Good luck for you and yours! I really want the best for all of you.

Cheers from Argentina.

Manu

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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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Miracle Man's picture
Replies 2
Last reply 1/16/2012 - 9:05pm
Replies by: deardad, Suzan AB

I have been a Melanoma patient since 1998. My melanoma started on the back of my right calf.  I have had multiple surgeries, Two limb perfusions in Philidelphia , Pennsylvania.  Recently, I began taking Zelboraf, because my tumors had a mutation in the melanoma gene.  I started treatment with Zelboraf November 4 2011. PET Scan on October 27 2011 showed two 3 inch tumors in the pelvis on the right side and several small ones. On Dec 26 2011, I turned juandice and went to the ER to check my blood and urine. The lab results showed my numbers very high.  They wanted to do a CT scan to see why I was jaundice. I had  PET scan already scheduled for 12-27-2011. I took the PET scan.  My Dr.Called me with the BEST news I had for the whole holiday season that evening.  He said do you believe in MIRACLES? I said YES. The Dr. said my 3 inch tumors shrunk to thumb nail size. I had surgery set for 1-10-2012. I went for the surgery to have the rest of the tumors removed. When I woke from my surgery my wife said the Dr. couldn't find the tumors. The Doctor came to my hospital room and told me I'm the "Miracle Man". The tumors were gone and he couldn't find them. He cut out the suspected lymph nodes and  had them sent to the lab.  The lab report found no melanoma cells.  Zelboraf worked for me.  The rest was taken care of by the Holy Spirit and Jesus. My Dr. calls me the "MIRACLE MAN".

Believe like child that God can help you. Do what the Dr. tell you and take your tests,etc. Be your own advocate. Do your own follow up. Hospitals and clinics are bureaucracies and make too many mistakes.

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