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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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!

Tricia

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triciad's picture
Replies 1
Last reply 2/18/2014 - 8:33pm
Replies by: Shelby - MRF

Now that I am in between shoveling, I can finally post a note here.  I just want ot thank Shelby and the MRF for putting on a wonderful synposium last week in NY.  Dr. Weber and the other doctors were fantastic!  A lot of information was presented, but most of it, I read about here on the forum.  The one thing that was shocking...PD-1 drugs have not been released for compassionate use. 

The trials are showing fantastic results, yet, the drug is not available to those who need it desperately.  Please take a moment and write to Merck and Bristol Myers Squibb asking them to please release these drugs for compassionate use.

Blessings to all for keeping the fight alive!

Tricia 

 

 

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Lil0909's picture
Replies 4
Last reply 2/18/2014 - 3:32pm
Replies by: Lil0909, mark1101, ecc26, Linny

I had a R axilla lymph node dissection about a month ago. I have a good amount of swelling in my chest/back area (under my armpit on my torso, kind of around bra line), as well as some on my arm. I'm getting fitted for a compression sleeve next week, and my therapist said to purchase compression tank tops for the torso area.  What I am seeing though doesn't really go up high enough on my back....I have tight workout tank tops, but the swelling seems to push up over the top. After googeling, I'm seeing tons of options for arm swelling, but not really anything for what I'm experiencing. 

Any suggestions on what to do/wear for the swelling on the torso area?

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lisa215's picture
Replies 9
Last reply 2/19/2014 - 7:54pm
Replies by: lisa215, Cfenton, Janner, Anonymous, paul Lyons

Hi, Dr miller at upenn reviewed my pathology report and his office called to schedule me for MOHs surgery. Anyone have experience with MOHs for melanoma stage zero?  I didn't realize it was an option for melankma. Are there advantages or drawbacks over excision? 

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Bleeds's picture
Replies 4
Last reply 2/18/2014 - 8:22pm

Hello all,

 

First post...

 

Looking for anyone or anything or anywhere with regards to a CLL patient (5.5 years) and recently diagnosed with Met Melanoma (liver, lungs spleen nodes). Already learned the acronyms for CLL now have to learn them for this. Still awaiting for BRAF mute and others. Waiting for an appointment at U of CO hospital melanoma group in Denver. Might be willing to go to UCLA. Anyone know of a good doc there? Clinical trials?

 

Thank you very much!!!

 

Gary

 

 

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Missawill74's picture
Replies 11
Last reply 2/26/2014 - 12:32am

I am the mother to two beautiful little girls.  My oldest, 7 year old, had a mole on her face that appeared two years ago.   I wasn't concerned because both my mother and myself have moles on this same cheek.  I just assumed she was going to have one as well. Over the last year I kept noticing it was appearing larger and the last six months it appeared pigmented and bumpy.  She complained of it itching her.   Her pediatrician didn't think it was anything but sent her to a dermatologist since it was on her face.   Within two minutes of our appointment the dermatologist said it needed to come off and be biopsied that it did indeed look like melana.  This totally took me back because I still felt it was like the one my mother her and self had.   They told me that if it was confirmed melanoma that they would send her to a oncologist and she would have to have surgery to get it completely removed because it was too deep for them to completely get in the office that day.  

For the last two months she has battled a sore throat and severely swollen tonsils and after reading on melanoma and how it can spread to lymphnodes I'm wondering if this is all connected.  We won't know the result until next Friday but the doctor did tell me it did look very much like melanoma.  I  beside myself.  This is my baby.   I've always been adament about using sunscreen.   

If they do call back with a melanoma diagnosis what questions should I be ready to ask?  What can I start doing to prepare for this fight?   I'm so scared.  I am a teacher and know not to believe everything you read. I know things are outdated online.   I feel like this is a good site to gain knowledge and arm myself with the right tools.   I just wish I could contain my nerves.   Any help would be greatly appreciated!

thanks,

Melissa

Melissa

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

TAKE-HOME MESSAGE

 

  • 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

 

ABSTRACT

 

Purpose

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.

Methods

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.

Results

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.

Conclusions

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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TAKE-HOME MESSAGE

 

  • 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.

 

ABSTRACT

 

Background

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

Methods

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).

Results

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.

Conclusions

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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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."

http://letsgivethanks.blogspot.com/2013/06/friends-say-melanoma-is-no-big-deal.html

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http://www.examiner.com/article/ucla-researchers-increase-survival-among...
UCLA researchers increase survival among melanoma patients
February 13, 2014

Los Angeles, with its Sunbelt location, offers many advantages; however, a disadvantage of our sunny clime is an increased risk of skin cancer, including deadly melanomas. On February 13, UCLA researchers published a study in The New England Journal of Medicine that reported on their progress regarding reducing the spread (metastasis) of melanomas.

A long-term research project was begun in 2001 by researchers at UCLA’s Jonsson Comprehensive Cancer Center. The study involved lymphatic mapping and sentinel-node biopsy, techniques that could detect the early metastasis of melanoma; to evaluate the success of the project, the subjects underwent 10 years of follow-up. (A sentinel node is a lymph node that is likely to contain cancerous cells at an early stage of metastasis.) They found that, compared to the traditional “watchful waiting” approach, their treatment protocol significantly increased the patients’ disease-free and melanoma-specific survival. The study authors noted that their findings offer a new standard for detecting melanoma metastasis to the lymph nodes because it allows physicians to quickly determine which patients actually have metastasis (approximately 20% in the study group). Thus, these patients may benefit from having their non-sentinel lymph nodes removed, while avoiding the surgery and its possible complications, as well as significant cost, for the many patients who probably will not benefit from surgery (approximately 80% of patients).

One of the significant findings of the study was that the thickness of the initial melanoma tumor correlated to the effectiveness of these treatments in managing metastases to lymph nodes and other areas. If patients with primary melanoma tumors of intermediate thickness (1.20 to 3.5 millimeters thick) undergo sentinel-node biopsies and then have immediate complete removal of the lymph nodes if the sentinel node contained cancer cells, they had an overall disease-free survival of 71.3% compared with 64.7% for those whose nodes were observed without sentinel biopsy. In addition, the investigators found that this group with cancer cells in their sentinel nodes had prolonged distant disease-free survival (survival without disease spread to distant organs such as the brain, lungs, or liver) and melanoma-specific survival (survival without development of additional metastases).

At their initial diagnosis, approximately 20% of melanoma patients have disease spread to nearby (regional) lymph nodes. Traditional treatment for these patients was surgical removal of the primary tumor and a rim of surrounding normal tissue; subsequently, the patients underwent a period of lymph node observation. If signs of cancer spread to the lymph nodes was found, the nodes were surgically removed. This spared 80% of the patients from unnecessary surgery; however, it was possibly too late to prevent the spread of the cancer in the 20% who had metastasis. An alternative treatment was to remove all patients’ lymph nodes, with the rationale that every patient was potentially at risk of metastasis.

Study leader Dr. Donald L. Morton and colleagues searched for and eventually perfected a method to specifically identify the 20% of patients whose tumors had already spread to the lymph nodes. Before cancer cells spread to the lymph nodes, they travel through the lymphatic system, first entering the lymph node most directly connected to the tumor (the sentinel lymph node). A combination of blue dye and radioactive tracer is injected into the tissues surrounding the primary tumor; this locates the lymphatic channels that lead to the first tumor-draining lymph node. The mixture follows the same lymphatic path used by the melanoma cells to spread to the sentinel node. The sentinel node is removed and microscopically evaluated in detail; the process allows detection of even a single melanoma cell. If tumor cells are not found in the sentinel node it is extremely unlikely that tumor will be present in other non-sentinel nodes; thus, further nodal surgery is deemed unnecessary. If cancer cells are present in the sentinel node, all the other lymph nodes in the nodal group are immediately removed.

The study authors note that their results confirm that for patients with intermediate thickness melanomas, early sentinel node biopsy reduces the risk of cancer recurring in the lymph nodes, and decreases the patients’ risk of dying from the disease. Some patients with thick primary tumors benefit from having their lymph nodes removed; however, the study findings suggest that the timing of the intervention is not as crucial for them as it is for patients with intermediate thickness primary tumors. The study group did not contain enough patients with thin melanomas to allow conclusions regarding their benefit from the technique. The researchers note that this group of patients will be a focus of a future study.

 

I'm me, not a statistic. Praying to not be one for years yet.

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Michelem's picture
Replies 9
Last reply 2/18/2014 - 1:27pm

My hubby has extensive mets throughout groin, liver, spleen, bones. He has just started ipi, but as I reading up on it I'm a bit unclear - if it works, is there a chance it may actually eliminate these mets? Or just arrest them? Or prevent from spreading further?

If it halts or slows things down for now, but the cancer comes back in future months or years - do we do the ipi again, unless something else has come out by then?  mm

MicheleM

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JerryfromFauq's picture
Replies 2
Last reply 2/14/2014 - 10:26am
Replies by: JerryfromFauq, joy_

Here are a couple of chains of posts relating to Lepto:  There is also info in Amy Griggs Busby posts on here and on her Carepages blog.

http://www.melanoma.org/find-support/patient-community/mpip-melanoma-pat...

http://www.melanoma.org/find-support/patient-community/mpip-melanoma-pat...

I'm me, not a statistic. Praying to not be one for years yet.

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tickyloo's picture
Replies 10
Last reply 2/23/2014 - 7:08am
Replies by: Anonymous, tickyloo, JerryfromFauq, POW, Jahendry12, Janner

I took a telephone conversation from the dermo office this evening whilst making valentines day card with my 6 & 8 year old children. I went to see them after my breast surgeon ( who I was seeing for some confirmed masses and a 3cm axillary lymph node ) said shed like me to see one asap.

She called and said she had surprising news. Of the three biopsies she took two came back as malignant melanomas. Of course I had my children so I said, ok thank you. She said I am not sure you are registering what I am saying, I advised I was but I couldnt ask anything right now so perhaps she could tell me things .

 

This is what I wrote down --- I know she said more but I have no idea what.

 

Two malignant melanomas one of neck and one on toe ( next to nail bed which incidentally has looked odd - the nail I mean )

 

The one on the neck i THINK she said was.4mm and the toe .2mm but it could have been 4 & 2 BUT she said if its less than have a mm then the prognosis is better ... so I think she must have meant .4mm ....

 

I have an apointment for Friday 21st at 10am with an oncologist - a consultation . I have written the word excision.

 

Is this standard , to wait so long I mean .  Now things have sunk in and its late and of course ive looked it up and on the neck is a little yucky .

 

What should i do or think or ask . Honestly I cant think anything, my brain is numb ? Is this bad ? or is it ok ? or good ? Does the fact that its in the neck change the game ? Lordy I dont know how I can wait till 21st

 

Thank you

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Affordable Care Act Requires Insurers to Cover Clinical Trials
IMNG Medical Media, 2014 Feb 07, MA Otto
News February 12, 2014
 
Dr. Clifford Hudis

The Affordable Care Act now requires health insurance companies to cover routine costs for clinical trial participants, the American Society of Clinical Oncology reminded clinicians in educational materials about the provision it released Feb. 4.

The group is concerned, it said, because “the federal government has not yet issued regulations to guide implementation of the new law,” and, at least so far, has characterized it as a “self-implementing” statute that insurers are “expected to implement ... using a good faith, reasonable interpretation of the law.”

“While much of the statutory language is clear, in the absence of federal guidance, payers will likely vary on the legal interpretation of each element of the provision. It is likely that securing compliance with the law may require considerable negotiations with some insurers or health plans. There is no assurance that all parties will agree on the legal interpretation of each element of the provision,” the group said.

To help, the American Society of Clinical Oncology (ASCO) issued a detailed explanation of the measure, plus educational materials for patients and a form investigators can fill out to demonstrate that a trial and potential subject meet the law’s requirements.

“ASCO and other groups fought long and hard for this law requiring insurers nationwide to cover the routine costs of care for individuals participating in clinical trials,�� ASCO president Dr. Clifford Hudis noted in a statement.

The hope is to counter poor study enrollment, the main reason that about 20% of cancer trials are never completed, according to a study reported at the 2014 Genitourinary Cancers Symposium earlier this year. Sometimes patients simply can’t afford to participate, because “some health plans have denied coverage ... of routine costs that are offered as part of the clinical trial.” The new law might help patients afford clinical trial participation, the group said.

The law applies to plans newly issued or renewed after Jan. 1, 2014. Routine costs include all items and services that an insurance company would cover for a patient not enrolled in a clinical trial. Plans cannot prohibit participation in clinical trials; deny or limit coverage of routine patient costs for items and services furnished in connection with participation in a trial; or discriminate against an individual because they are enrolled in a trial.

The provision covers studies that are either federally funded, conducted under an Investigational New Drug Application, or exempt from an Investigational New Drug Application.

It does not apply to Medicaid plans, and payers are only required to cover routine costs delivered by out-of-network providers if out-of-network benefits are part of a patient’s insurance plan. “An insurer may attempt to deny coverage on the grounds that the service or item is ‘clearly inconsistent with the established standard of care.’ Providers may consider requesting that the insurers prove that the item or service is inconsistent with the standard of care,” ASCO noted.

 

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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! 

http://www.ncbi.nlm.nih.gov/pubmed/18956140

MicheleM

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