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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NYKaren's picture
Replies 15
Last reply 2/16/2014 - 8:35am

Hi all,

Yesterday I had MRI, saw onc and neurosurgeon. 

Dr. Pavlick saw regression on some of those pesky scalp mets, and my LDH went down a few more points. It had been quite high, went down a lot last month after starting MEK, and continued. So I'm stable.  I just love her. I never thought I'd like someone as much as Dr. Wolchuck, but they're both terrific. 

Then on to Dr. Kondziolka, my Neurosurgeon. All 16 of my brain mets are smaller or resolved, and no swelling. I've been off steroids for over a month.   When he told me that 10, even 5 years ago, it would not have been possible to Gamma Knife so many mets, I asked if it was because advances have been made with the GN.  he said no, it's because of the advances in the ways they've learned to use it.  Not so long ago, it would have been WBR.   He was delighted at my affect; said I was sharp as a tack. Lol. 

Also, Dr. P was going to be speaking to Merck about expanded access; will let you know. 


Don't Stop Believing

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  • This long-term follow-up analysis of a phase III study confirmed the benefit of sentinel lymph node biopsy vs observation in patients with cutaneous melanoma. The 10-year disease-free survival (DFS) rates for patients with intermediate-thickness and thick melanomas were 71.3% vs 64.7% and 50.7% vs 40.5%, respectively. In addition, 10-year distant DFS and 10-year melanoma-specific survival were significantly better in the biopsy vs the observation group (HR, 0.62; and HR, 0.56).
  • Sentinel lymph node biopsy provided accurate information on staging, improved regional disease control, and prolonged melanoma-specific survival.





Sentinel-node biopsy, a minimally invasive procedure for regional melanoma staging, was evaluated in a phase 3 trial.


We evaluated outcomes in 2001 patients with primary cutaneous melanomas randomly assigned to undergo wide excision and nodal observation, with lymphadenectomy for nodal relapse (observation group), or wide excision and sentinel-node biopsy, with immediate lymphadenectomy for nodal metastases detected on biopsy (biopsy group).


No significant treatment-related difference in the 10-year melanoma-specific survival rate was seen in the overall study population (20.8% with and 79.2% without nodal metastases). Mean (±SE) 10-year disease-free survival rates were significantly improved in the biopsy group, as compared with the observation group, among patients with intermediate-thickness melanomas, defined as 1.20 to 3.50 mm (71.3±1.8% vs. 64.7±2.3%; hazard ratio for recurrence or metastasis, 0.76; P = 0.01), and those with thick melanomas, defined as >3.50 mm (50.7±4.0% vs. 40.5±4.7%; hazard ratio, 0.70; P = 0.03). Among patients with intermediate-thickness melanomas, the 10-year melanoma-specific survival rate was 62.1±4.8% among those with metastasis versus 85.1±1.5% for those without metastasis (hazard ratio for death from melanoma, 3.09; P<0.001); among patients with thick melanomas, the respective rates were 48.0±7.0% and 64.6±4.9% (hazard ratio, 1.75; P = 0.03). Biopsy-based management improved the 10-year rate of distant disease–free survival (hazard ratio for distant metastasis, 0.62; P = 0.02) and the 10-year rate of melanoma-specific survival (hazard ratio for death from melanoma, 0.56; P = 0.006) for patients with intermediate-thickness melanomas and nodal metastases. Accelerated-failure-time latent-subgroup analysis was performed to account for the fact that nodal status was initially known only in the biopsy group, and a significant treatment benefit persisted.


Biopsy-based staging of intermediate-thickness or thick primary melanomas provides important prognostic information and identifies patients with nodal metastases who may benefit from immediate complete lymphadenectomy. Biopsy-based management prolongs disease-free survival for all patients and prolongs distant disease–free survival and melanoma-specific survival for patients with nodal metastases from intermediate-thickness melanomas.


The New England Journal of Medicine
Final Trial Report of Sentinel-Node Biopsy Versus Nodal Observation in Melanoma
N. Engl. J. Med 2014 Feb 13;370(7)599-609, DL Morton, JF Thompson, AJ Cochran, N Mozzillo, OE Nieweg, DF Roses, HJ Hoekstra, CP Karakousis, CA Puleo, BJ Coventry, M Kashani-Sabet, BM Smithers, E Paul, WG Kraybill, JG McKinnon, H-J Wang, R Elashoff, MB Faries


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Jahendry12's picture
Replies 17
Last reply 2/16/2014 - 2:03am

I'm sitting at Rush Univ Med Center while my husband is having a 3 month follow up CT.  If results are good, he will be 1 year NED with stage IV melanoma.  Hoping to report good news!

Saying my prayers and keeping the faith. 


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ljhncj12345's picture
Replies 15
Last reply 2/15/2014 - 8:33pm

Larry had what we all thought was a good response to ipi after only 3 infusions in Febuary March and April 2013. We had 8 really good months. Scans 2 weeks ago showed 2 brain mets and one in his lower back by his intestines. doctors have been trying to get the braf + mek combo approved through insurance for two weeks now They will only approvve the Dabrafenib. Since he was intolerant to vemurafanib in 2012 ( he could only  take it for 3 weeks because of fevers and dehydration) his oncologist says he needs the mekinest with the Dabrafenib. 2 days ago he started having severe pain in his leg. X ray showed a 3 inch met in his femur. In 2 weeks time this disease has taken him from walking 3 miles a day to strggling to walk accross the room on cruthces. I just hope  can make it 3 more weeks until new insurance kicks in and we can see if they will approve meds.

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triciad's picture
Replies 5
Last reply 2/15/2014 - 5:02pm

Sorry to bother you all again, but I just found out that the cancer is not in the bones...they "thought" it was in the bones because of the severe pain.  However, the pet showed no bone involvement.    So if anyone knows any good medication for severe pain, I would greatly appreciate some advice.

Thanks for your support!

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rbruce's picture
Replies 17
Last reply 2/15/2014 - 4:02pm

Just got results from my 24 week pet/ct scans. Continued shrinkage! Lung tomors are down about 60% from where I started, axillary lymph node is about 50%, and they couldnt find any activity in my 2 previously noted rib mets!!!!! Dr. said I had best results so far of 7 on the trial and although he didnt test for it, he's sure my tumors expressed the pd ligand. Everyday I read about warriors beating the odds and of ever increasing new research and findings. I have faith that soon, melanoma will be history. Keep the faith qnd God Bless.  Robert

The circumstances of our lives have as much power as we choose to give them. David McNally

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Pink's picture
Replies 6
Last reply 2/15/2014 - 3:19pm

It's been almost 3 weeks since 1st infusion, I am starting to get diarrhea and some slight itching. Is this normal so soon? 

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Socks's picture
Replies 3
Last reply 2/15/2014 - 12:58pm
Replies by: Socks, joy_, Jahendry12

I'm new around here and still waiting on the staging of my melanoma, so there's not much help I can offer. The only thing I can do is if anyone is going to M.D. Anderson in Houston, TX for treatment, and especially if you plan to stay in the Rotary House, I can answer questions, offer tips/advice, etc.

My mom has been going to M.D. Anderson (she lives in Indiana) since mid-2012 for her Non-Hodgkin's lymphoma, and I've gone with her on all but two of those trips. She and I stay in Rotary House every time we go, and we lived there for four months while she got a stem cell transplant and did her 100 day recovery from it.

So despite the fact I live in Michigan, I can offer a lot of help with M.D. Anderson if anyone needs it. It's about all I can share at this point. ^_^

"Be who you are and be that well." - Saint Frances de Sales

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triciad's picture
Replies 4
Last reply 2/15/2014 - 12:46pm

I have been on this forum for the past five years fighting my Stage 3C melanoma.  I have learned so much from all of you!  I know in the past, I have read information regarding how to handle excruciating pain when bone mets are involved.  A friend is suffering and I was wondering if anyone had any advice or experience managing this type of pain.

Thanks so much for your help!


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POW's picture
Replies 5
Last reply 2/15/2014 - 12:39pm
Replies by: Michelem, benp, Anonymous, Pink, JerryfromFauq

I have read a couple of anecdotal reports of patients who failed ipi then getting anti-PD1 and having success-- even shrinking bone mets. I know that there was a clinical trial a year or so ago specifically designed to see the effect of anti-PD1 in patients who had failed or progressed on ipi. Any one know how it worked out?

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billie jo's picture
Replies 7
Last reply 2/15/2014 - 12:34pm

i recently have had melanoma removed from my pelvic area and now it is my lymph nodes in my groin i had a pet scan today but i am so worried noone is telling me anything and everything that i have read on the internet is not good i dont know what to do i cant eat sleep are anything worry thats it does anyone have any advice thank you billie jo

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Michelem's picture
Replies 4
Last reply 2/15/2014 - 12:31pm
Replies by: Michelem, Bubbles, POW

A friend sent me a link to an article about this drug . . . it's a few years back so maybe it's nothng. LIke everyone else, I want to explore all options, so just wondering if this was something folks here know about and if it's something I should know about.  Thanks!


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BrianP's picture
Replies 1
Last reply 2/14/2014 - 8:25pm
Replies by: heiditemple



  • This meta-analysis incorporated data from 623 patients with stage III (node-positive) melanoma in which FDG-PET was used for staging. Results showed that FDG-PET could impact management (eg, avoidance of radical lymph node dissection) in 20% to 25% of these patients and had a positive predictive value of 75%.
  • These data suggest FDG-PET should be considered as part of preoperative staging for these patients.

- Richard Bambury, MD





The objective of this study was to review the collective experience and utility of FDG-PET scans (FDG-PET) in the detection of systemic metastases in patients with stage III melanoma.


A systematic search for relevant studies published between 1990 and 2012 was performed. We included English language studies that evaluated melanoma patients with stage III disease, with at least 10 patients per study, and collected statistical data to assess FDG-PET utility in the detection of distant metastases. The SIGN tool was used to evaluate methodological quality and a meta-analysis was performed using Stata statistical software to quantify the clinical utility of FDG-PET.


The systematic search yielded 9 studies eligible for inclusion in quantitative analyses with a total of 623 patients. The overall sensitivity of FDG-PET in detecting systemic metastases was 89.42% (95% CI: 65.07-97.46), and specificity was 88.78% (95% CI: 77.04-94.91). The pooled positive likelihood ratio was 7.97 (95% CI: 3.58-17.71) and the negative likelihood ratio was 0.12 (95% CI: 0.03-0.47). The area under the summary receiver operating curve (SROC) was 0.94 (95% CI: 0.92-0.96) and the diagnostic odds ratio (DOR) was 66.84 (95% CI: 10.66-418.89). A change in stage and/or management was noted in 22% (126/573) of patients when FDG-PET was utilized.


Our findings indicate that FDG-PET may be useful in detecting distant metastases in patients with stage III melanoma. For this highly selected group of patients, FDG-PET has a high sensitivity, specificity and performance, frequently leading to a change in treatment plan.


Surgical Oncology
Value of Positron Emission Tomography Scan in Stage III Cutaneous Melanoma: A Systematic Review and Meta-Analysis
Surg Oncol 2014 Jan 26;[EPub Ahead of Print], AM Rodriguez Rivera, H Alabbas, A Ramjaun, A-N Meguerditchian


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Anonymous's picture
Replies 10
Last reply 2/14/2014 - 7:08pm
Replies by: lisa215, HopefulOne, DonnaK, Anonymous, Linny, Mat

Hi, I'm newly diagnosed with melanoma in situ and new to the Philadelphia area.  Can someone recommend a Philadelphia area physician?  A dermatologist made my diagnosis and I'd like to schedule my next appointment with a skilled surgeon. 


Thanks very much!

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Anonymous's picture
Replies 1
Last reply 2/14/2014 - 3:10pm
Replies by: Jahendry12

Found this on facebook and had to post the link here. This sums up alot of what I have learned about melanoma as well as how people in general don't understand the disease.  As the writer states, "People, as a rule, don't get this disease until they get it."

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