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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Anonymous's picture
Anonymous
Replies 1
Last reply 3/29/2011 - 7:43pm
Replies by: MichaelFL

Is a miotic rate of 2/10hpf considered high or low?  Just curious because I don't understand this part of pathology report.

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IF you are offered "wait and see" or HD interferon, you may want to do HD  interferon for 29 days and then get tested for phosphorylated STAT1 (pSTAT1) .

 Stat1 signaling helps differentiates the Naïve T-cells toward the TH1 phenotype needed to attack the Tumor cells.
 
High pSTAT1 in peripheral blood Tcells of Melanoma Patients may correlate with good clinical outcome in the first 29 days of HD IFN therapy.
 

TH1 adaptive immunity, and immunosuppression suggested that TH1 adaptive immunity has a beneficial effect on clinical outcome.

Bets regards,

 

Jimmy B

 

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Melanoma Rates May Be Higher for the Rich

Study Shows Link Between Melanoma and Higher Income Levels

 

http://www.webmd.com/melanoma-skin-cancer/news/20110321/melanoma-rates-may-be-higher-for-the-rich?ecd=wnl_can_032911

http://www.MelanomaResources.info

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Hi,

The first Oncologist I saw was not to keen on Interferon, was suggesting watch and wait, and going to check with colleague regarding clinical trials.

I opted to meet with Dr. Samlowski (he seems to be the Melanoma guy for Las Vegas) personally. I'm glad I did-he was very informative and much more comfortable discussing melanoma, statistics and treatments (not that I remember everything he said). He is suggesting interferon. The high dose phase for sure, and for as long as I can take take it the 3 times a week injections. He says it's tough, but they will help me get through it. He thinks it for sure prolongs time to progression of disease and therefore it is prolonging overall survival. He thinks in my situation ( Stage 3B with an ulcerated lesion) it could improve my odds by 10-20 percent.  I'm going to quote him he said "we keep running this horse, because it keeps winning". He is also optimistic about IPI-he says he has used it for years and he has patients with years of no progression in their disease. He said a trial is due to open very soon-early April.

After coming home I read all the news of Yervoy being approved (on this board) and happened to read the patient insert (link posted by another helpful member on this board). Yikes!!!! Some of the potential immune related adverse events sound pretty scary. Some irreversible and some even causing death. Tonight I looked up Intron and found some good ones in there as well.

My head is spinning-all the reading I do seems to make me more confused. Is there another choice I should be asking him about? Has anyone done both Interferon and IPI-is one easier than the other? I wouldn't get to choose if I'm in the clinical trial-it's randomized between the two. I meet with him again in a week. I also need to get a brain MRI, my PET scan was negative except for some reaction probably related to surgery and inflammation as it was only 3 weeks post surgery.

From what I have read on here-you have only so much time post surgery to get started on Interferon and some clinical trials.

I have to say though, I think I'm feeling better about doing something vs nothing. I reread my posts and they sound so jumbled up-so many of you post such eloquent coherent words! It has been so informative reading all the posts and I'm so thankful that you all have been so generous with your first hand knowledge about this disease. It is overwhelming, but I'm going to fight it!!

Julie in Las Vegas

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theonlydrea's picture
Replies 9
Last reply 3/29/2011 - 10:38am

i was wondering if anyone has or is currently on the Braf particle or food study. My husband will start on the study here soon.

everything i have read posted was just on the doseage or double blind study. the dosage they are saying is now se (i beleive it was 300mg ever 12 hours)t, it is not a double blind study and at this point they are testing if food effects it and if the type of form given effects it. If anyone has any information on what to expect and experiences please let me know. 

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claudia-uk's picture
Replies 6
Last reply 3/29/2011 - 10:29am

I read some press release in regards to the FDA approval of Ipilimumab/Yervoy and wonder what the survival times actually mean. I can't find mcuh consolation in a survival time of 6 months ot 10months

The study compared ipilimumab treatment with an experimental tumor vaccine (gp100), gp100 alone, and ipilimumab alone. Median overall survival was 10 months among those who received ipilimumab plus the vaccine, 10.1 months among those who received ipilimumab alone, and 6.4 months among those who received the vaccine alone.

If it is some kind of average, how does it work?

Thanks!

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alicia's picture
Replies 16
Last reply 3/29/2011 - 9:57am

Hello Friends,

I just had surgery jan 7, 2011 for wide excision of 2.3mm or greater amelanotic melanoma and SNB both groins.  The scar has been healing nicely until just a couple weeks ago (I am 9 wks post op btw) It started itching really bad and has a raised scaley pinkish area over the scar.  I'm really hoping this isn't a reoccurence in the scar but it feels exactly like the primary amelanotic melanoma that was there previously. This recent melanoma was also my third primary melanoma btw the onco says I have to think of myself as a stage 3 melanoma patient with 3 primary tumors 2 of which were intermediate thickness.  In my mind I keep trying to tell myself its probably nothing but a skin irritation but I'm really scared it could possibly melanoma since I've seen this beast come up three times now (twice in the past year). Plus the other 2 wide excision scars I've had have never had this kind of "irritation".  My question is has anyone else out there had an amelanotic melanoma reoccur in your wide excision scar and what did it look like/feel like???  or has anyone else experienced an irritation like this over your wide excision scar??? I also just had CT and PET scans yesterday for restaging and will be following up with my oncologist monday for results.  I plan on showing her this area on my wide excision scar at that time.  Thank you all for your help as I don't know what I would do without you:)

 

Thanks so much:)

Alicia Stage 3a w/ 3 primaries

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Charlie S's picture
Replies 7
Last reply 3/29/2011 - 6:34am

Just got off the phone after a nice extended conversation with Amy and she is hanging well.  Between Fentanyl patches and oral meds for breakthrough, she is managing and living.  She was able to go to church yesterday with her family, but tires out after extended outings.

She was quite lucid and just like the Amy I know, but she is tired, tired, tired and still continues working the problem.  

Most of all, she is hanging in there as are her family.

A remarkable woman.

Charlie S

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debandmike's picture
Replies 3
Last reply 3/28/2011 - 8:55pm
Replies by: ValinMtl, MichaelFL, KatyWI

Loving the website so far but could use a few guidelines on how to set up a profile. Am I setting it up for my husband who has the cancer? Or both of us?  Looking for guidance and appreciate all your replies to my email. I feel I have found a place to go and share with others who are going though the same thing my husband are going through. Thank you for welcoming us to your family.

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Replies by: CKasper, Cynthia C, Anonymous

Does anyone know whether the HCG drops for weight loss are safe for melanoma patients?

 

HCG stands for Human Chorionic Gonadotropin, and it is produced by the female placenta. Its primary purpose is to give directions the hypothalamus gland. The hypothalamus gland, in turn, regulates your thyroid functions, fat storage and metabolic rate.

So, in a nutshell, HCG drops tells the hypothalamus to increase your metabolic rate, burn any stores of fat and reel in thyroid functions. This funnels more useable energy into the body.

I'm just curious if there is any reason not to give it a try.  I realize it may not work for me, I can deal with that.  But, I sure don't want to push my NED status.

Nancy D

Stage 3B, NED 6+ years

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kd4cht's picture
Replies 8
Last reply 3/28/2011 - 6:22pm

I was diagnosed with a melanoma skin cancer on my abdomin back in May 2006.  I had a kidney transplant in April 1999.  When Dr.  Ollilla did surgery to remove the melanoma and 1 cm of skin around the melanoma he also removed a lympthnode.  The patholegist report showed that he got all of the melanoma and the lympthnode was negative.  Now in December 2010 my kidney doctor(Dr. Dunmire) noticed that I might be anemic.  So he did a blood test and sure enough I was very anemic.  He sent me home with stool sample cards and when I returned them they all 3 tested positive for blood in the stool.  I contacted my transplant coordinator and UNC Hospitals and she got me an appointment with the G.I. Clinic.  They examined me and set me up for an endoscopy and colonoscopy.  Those tests did not find any cancer.  At my follow up appointment I was told that the biopsies came back as normal.  So next they had me do a small bowel endoscopy.  That found something.  They had me admitted to the hospital.  They took X-rays, did a PET/CT scan, and another endosocpy.  The PET/CT scan showed a hotspot in my small intestine area.  The endosocpy did not find any cancer.  The G.I. doctors don't think they got biopsies of the right area.  So I get to have another colonoscopy, and they are going to try to get to the area from the colon to get biopsies.

The head of G.I. clinic said that melanoma could come back to the bowles, but it was rare.  After reading some on this web site I am starting to wonder how rare it is.

The doctors will not say one way or the other if it is cancer, but I have a feeling it is.  The weird thing is I have had no pain.  Just the anemia.  I imagine that I will have to have surgery on my small intestine to remove the tumor, but the doctors have not said much about that yet.

Has anyone had a similar experience?

 

Thanks,

 

Alan

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mimi0201's picture
Replies 2
Last reply 3/28/2011 - 5:00pm
Replies by: Anonymous, Tim--MRF

      Does anyone have any info on obtaining "Yervoy"?  We are in limbo and are unable to get answers on our end.  We're hear at NIH waiting to be tranferrred to Rush Chicago.  Thanks.

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MollyB's picture
Replies 12
Last reply 3/28/2011 - 4:30pm

Hello,

I am new to MRF and the Bulletin Board. I am a stage IV melanma patient with V600E mutation. For the last two years, I have had random subcutaneous lesions that have been removed by surgery but this June CT scans showed lesions in my lungs and back. Until now I have been very active and healthy. I applied for the La Roche study at Providence Cancer Center in Portland Oregon and was randomized to receive RO5185426. I started the drug August 9th and after 10 days on 960 mg/twice a day I had to stop the drug because of a raised rash over 95% of my body with swelling (especially in my face), joint pain and extreme fatigue. I waiting a deciision about whether to restart the drug and at what dosage

I am wondering what others on the study are experiencing.  Molly B

Each moment is precious, live them to the fullest

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mommydog's picture
Replies 9
Last reply 3/28/2011 - 3:18pm

My husband was diagnosed with stage VI metastatic melanoma in early February.  He has mets on his lungs, spine and liver.  After much screening he started a clinical trial yesterday at UCSF with BRAF and MEK.  For the MEK dosage he was "randomized" to receive the highest dosage allowed in the study. The doctor told us that he believes my husband is getting the best possible treatment for a horrible diagnosis.  Would anyone else like to share info/experiences with this trial? Thanks.

Deborah

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debandmike's picture
Replies 6
Last reply 3/28/2011 - 2:50pm

My husband was just diagnosed with Stage 4 melanoma with tumors in his lung and liver. He will start treatments on April 11th. Would love to hear from others who have tried this treatment.

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