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.

Expand/ Collapse Topic
 
Replies By
View Topic
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 

Login or register to post replies.

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!

Login or register to post replies.

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.

MrsMarilyn

Login or register to post replies.

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

Login or register to post replies.

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?

Login or register to post replies.

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?

Login or register to post replies.

Taterbug's picture
Replies 3
Last reply 1/17/2012 - 11:17am
Replies by: Taterbug, Suzan AB

Does anyone out there have a primary melanoma tumor in their spinal cord?

Login or register to post replies.

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

 

Login or register to post replies.

Ranisa's picture
Replies 4
Last reply 1/16/2012 - 9:39pm

Are there are any melanoma speicalist in Omaha Nebrasha?

Login or register to post replies.

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.

Login or register to post replies.

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.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 5
Last reply 1/16/2012 - 8:01pm

Sam is currently in the hospital on life support. Any prayers and/or uplifting thoughts are welcomed.

Login or register to post replies.

mob's picture
Replies 2
Last reply 1/16/2012 - 6:04pm
Replies by: bcl, mob

http://www.doctoroz.com/videos/dr-joe-mercola-s-health-recommendations-pt-2 

 

And the salons are noticing an increase in tanners already  -     http://www.tantoday.com/forums/news-about-tanning/45206-dr-oz.html

Here is a link incase anyone wants to write to the show

 http://www.doctoroz.com/contact

Login or register to post replies.

himynameiskevin's picture
Replies 13
Last reply 1/16/2012 - 4:42pm

Well I finished my fourth dose of Yervoy of December 20th and just got a call from my Oncologist regarding my results. Unfortunately the MRI of my brain which was clear before, now has three lesions. Two are extremely small and one is about 9mm, a little bigger than a pencil eraser. So first things first, Tuesday morning I'll be scheduling an appointment with my radiation oncologist to see about zapping these things out of my brain, just like the one they zapped over a year ago. I'm hoping these go away as successfully as the other one.

My oncologist has yet to see the CT of my chest/abdomen/pelvis. I just picked up the disc and I'll be taking it to him first thing Tuesday morning to see what it shows. With the news of the brain, I don't predict the results be in my favor. But come Tuesday, we'll know the full status and hopefully discuss possible options.

Naturally, this came as a bit of a shock and I'm a little worried, not sure how my time and options are looking. This waiting is the hardest part. I'm kind of out of the loop as far as options and new trials that may be available, if anyone has any suggestions or information that might be beneficial, I'd sure love to hear it. This board helped me through this exact situation that I started in a year and a half ago, gave me hope, helped me see things more clearly, and essentially got me "on the mend" for a little while. And here I am asking for a little help again. I'm down, but not out. And far from done. I figure if I got to a better position from where I started once. I could do it again.

-Kevin

Ps. By the way I still feel fine, I feel as normal, pretty sure no abnormal pain or anything. Also, my doctor told me not to rule out the Yervoy yet, he said sometimes it can take a while to kick in, so I guess I'm still hoping for that. We'll see.
 

Login or register to post replies.

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

Login or register to post replies.

Pages