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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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!

Tricia

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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! 

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

MicheleM

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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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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."

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

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JerryfromFauq's picture
Replies 2
Last reply 2/14/2014 - 1:05pm
Replies by: BrianP, JerryfromFauq

 A friend asked about this trial.  She was looking at it in Canada and would like to chat with someone that is envolved in the trial.   Her post: I was looking into a trial called TH302, but denied because I am transfusion dependent. Doesn't matter I didn't really want to do it, and I am doing TILS. And I would be the first in Canada to do it with Melanoma. My question is has anyone heard of this yet in the USA? Is a really cool concept for the drugs action.

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

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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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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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Anonymous's picture
Anonymous
Replies 3
Last reply 2/14/2014 - 9:20am

Husband is Stage 3A. Did not qualify for vaccine at UVA. Thank you in advance for any and all suggestions!

Lindsay Wise

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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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KYDonna's picture
Replies 17
Last reply 2/13/2014 - 12:20am
 
 
I have a question for all you warriors and caregivers! I need help because I am not dealing well!
 
Darryel, my husband, was originally diagnosed Stage IV in 1/2012-mets to spine, liver, pelvis, lymph nodes. He started on Zelboraf and had been doing pretty well on it. The oncologist did CT scans, first every three months, then every four months, but only of his abdomen. November 2013, one week after a clean CT scan, he had a seizure. MRI found multiple brain mets, all small. Had WBR and now he is on Tafinlar, seems to be doing relatively well aside from extreme fatigue and some morning nausea. 
 
I am totally stressing, maybe b/c I wonder why only abdominal scans were done. His onc, not a melonama specialist, has no plans on doing a CT scan anytime soon! Darryel is scheduled to have a follow-up MRI of his brain in March, which is great, but I am terrified of waiting so long to do a scan of his abdomen!! I asked yesterday if we could just do another scan at least at the 6-month mark (which would be May) but was told NO. 
 
Am I putting too much emphasis on the scans? And how in the world do we live any kind of normal life with the fear of all these unknowns??
 
Any advice would be greatly appreciated-thank you all for being here!

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kpcollins31's picture
Replies 3
Last reply 2/12/2014 - 10:01pm
Replies by: POW, Fen, JerryfromFauq

I thought it would be worthwhile to post about my experience with a recent bowel resection (2/4/2014) to help take away potential fear that someone about to go through something similar might have. I know I had anxiety not knowing what to expect and it helped to get feedback from some of you on this forum.

Pre-Admittance - I was admitted to the hospital the day prior to surgery for bloodwork and bowel prep. Bowel prep consists of drinking a gallon of a polyethylene glycol solution ("GoLytely")... one small cup at a time over several hours. This was not bad at first, but drinking a gallon of anything is tough. They gave me lemonade flavored Crystal Light to help as the solution itself tastes horrible. This was unpleasant, but I got through it.

Surgery - Day is mostly a blur. Prior to surgery, you get to hear all the scary disclosures about potential complications from the anesthesia. They gave me an epidural in the staging area for the OR... completely painless as they gave some medication through the IV prior. I remember going into the OR and being slid onto the operating table. As soon as my eyes began to open, I was in the recovery room and they wheeled me to my overnight room. I do not remember much... limited pain and a lot of sleep.

+1 Day - This was the toughest day. You become aware of the pain, but you have a pain button that you can push that administers pain meds through the epidural... it is effective. I also woke to realize I had a catheter which was my first experience with this and something I was really afraid of - truth be told, it was not too bad... it was not painful (they put it in while I was under). They tried to have me stand while measuring my blood pressure, but it dropped so low I almost passed out. Most of the day I spent sleeping.

+2 Days - Feeling a little better. Needed a helping hand to sit up in bed as it was too painful to do on my own... those pesky abdominals. Blood pressure starting to normalize. More time awake. Able to get up and move to a nearby chair with help.

+3 Days - This was an important day and I felt a lot better. They removed the catheter... uncomfortable experience but not painful. I felt comfortable enough to walk in the hallways to help stimulate the bowels. I walked a lot and it felt good to do it. By the end of the day, bowels showing signs of waking up... never been so happy to have gas. They moved me to a clear liquid diet.

+4 Days - Felt too good to be in the hospital and the nurses said I looked to good to be there. I was walking constantly in the hallways. Bowel function returned. They removed the epidural. They moved me to an unrestricted diet... I still used judgement and kept it really slow. They were watching for nausea and I had none.

+5 days - Released from the hospital. Feeling good but taking it slow.

The very next day, I felt comfortable enough to work from home. They sent me home with Percocet, but I have not needed to use many of them. Today (+8 days) I will likely not use any. Thinking back, I think the most painful part of the whole experience was removing the damn surgical tape... I got a free waxing. This experience also reminds me of the body's amazing ability to heal. Hope this is helpful to anyone about to go through this experience - feel free to PM me with questions.

Kevin

 

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