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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sharmon's picture
Replies 2
Last reply 10/9/2012 - 1:58pm
Replies by: sharmon, POW

Does anyone have any information on SRS radiation to metastatic bone tumors on the Tampa Fl. area?  Brent has rib and T11 and T12 involvement and we are researching.

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DeniseK's picture
Replies 7
Last reply 10/9/2012 - 12:49pm
Replies by: Anonymous, DeniseK, Janner, Swanee, POW

Hello everyone.  I'm back!!  :)  I was hoping to not have to deal with Melanoma again but I am highly suspicious that I have a distant recurrence on my forearm in the form of a subcutaneous tumor.  It started a couple months ago right after a dermatologist appointment and getting fully checked.  It started as a small BB sized bump under the skin and in the last 2 months has grown to the size of a marble.  I want to believe that it's nothing but a lipoma or something but I've also been feeling fatigued and vomiting anytime I have any type of alcohol.  I haven't been able to get a scan since right after my surgery over a year ago since I don't have any medical insurance so I haven't been able to keep up on things like I should so my question is can anyone tell me if they think this is a distant tumor or what.  My initial tumor was on my chest on the right side.  I do plan on trying to figure out a way to have this biopsied hopefully this week but any information you could offer would help ease my mind. 

Thanks bunches!!  :)

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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sharmon's picture
Replies 4
Last reply 10/9/2012 - 11:13am
Replies by: Napa K, awillett1991, lhaley

Not sure where to start,  Brent has been doing fine on  GSK MEk and Alimta trial.  Almost 32 months.  Two months ago he had pain in his kidneys and last week after the scan to that area the urologist  announced that the 2 stones seen on the scans could not be causing his pain.  So he orderd another  test and it is showing a dark spot in his spine.  We got a copy of the films to take with us  to Houston next week and we can clearly see the area.  Also some spots near the ribs of the  pain area.

We see the  local doctor on Tuesday.  We are devastated and the waiting for the radiologist report is the hardest thing ever.  He is in alot of discomfort and is saying we need to know what it is so we can get on with treatment, the pain is unbearable.

Somethimes you think you are sailing along and Wham! out of the blue.  Brent will be 65 on Monday and is in good health otherwise.  I am now looking on the internet for treatment options again, and I don't see any Anti-PD-1 trials open.  He will probably be dropped the the GSK trial for progression. 

I read here everyday and see a lot of hope coming from many who are survivors,  I need some of that hope right now sent my way. 

Prayers of all of you,

Sharon and Brent


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mandamanda123's picture
Replies 16
Last reply 10/9/2012 - 9:47am

Hi, my boyfriend has been complaining that he has limited mobility following a complete lymph node dissection (underarm).  He said that it feels like a guitar string (maybe a nerve or a ligament?) was reconnected too tightly.  When he raises his arm to a certain point, he experiences a lot of pain and can go no further.  We can even feel the "string" from the surface of his skin.  It's been just over a month since the surgery.  Just wondering if anyone else has experienced this.  Thanks.

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Steve2142's picture
Replies 16
Last reply 10/9/2012 - 9:27am

Hey everyone -

Based on finding three microscopic deposits in a lymph node in my neck (one positive node and one negative), my doctor is adamant that I have an immediate CLND to remove 50 nodes and part of my parotid gland...although he acknowledged that observation is an option. I am not sure why but I just don't want to rush into this surgery and risk potential nerve damage...especially as thinks there is only a 3-4% chance of other nodes being positive. I welcome anyone's thoughts on this. Thanks!


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KMT2003's picture
Replies 11
Last reply 10/8/2012 - 10:50pm
Replies by: King, POW, awillett1991, Anonymous, sandman, aldakota22, Fen

Well we have been waiting since the doctrors found bone lesioons on Aug 23rd to get confirmation that is was melanoma. After several bone biopsies done that came back inconclusive, we had a new area of concern on the left breast. That procedure wasnt done as fast as we would have liked because of some issues with that biopsy. We finally got the results today. The breast biopsy is positive for melanoma. I am officially stage 4 now. The last few months have been hard dealing with the frustration of not knowing and dealing with the pain from the bone lesions. I am actually glad to have an answer but now I am a little scared about the future. I have two young children and a wonderful husband and immediate family. We will be discussing and hopefully starting treatments on Wednesday. Wish us luck on this next part of our journey as we fight this best. I am B RAF + so we are looking at Z or a trial. Any suggestions or input on the drug?


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himynameiskevin's picture
Replies 55
Last reply 10/8/2012 - 9:54pm

this is brenda writing on behalf of kevin....

first i wana say that you all have been an ispiration to kevin, and are the reason for his positive attitude and strenght.

i took him to the E.R on friday because he wasnt doing too good.he had an mri and the results showed a significance increase in the amount of tumors and the size of the previous ones he had.he went through whole brain radiation and it seems like it wasnt effective.we talked to the doctor today and she said that he has began to bleed in his brain, and unfortunately theres nothing more we can do.

as you can imagine our hearts are broken. he has been so strong and brave through this journey, but its time for him to go HOME. i truly belive he came into this world to inspire and show people how to be  caring loving compassionate human beings.

he's not in any pain, but he is on pain medication because it helps him relax and sleep. when the medication wears off he's able to speak to people fine. hopefully he'll be able to write a personal message later on.

please, please dont be sad, or sorry. i cant express how much love he has for you all. and since hes going HOME i know he will watch over each and every one of you, think of him as your personal angel because thats what he will be. 

i wish you all strenght and healing. and when your feeling down and out and it seems like theres no hope, please ask yourself what would kevin do?

and i promise you, you will get the strenght and motivation that you need.


love, brenda.

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Outrun the Sun is an outstanding organization in Indianapolis, IN.  They are hosting a forum next week. I am posting the details for anyone interested in attending.

2012 Outrun the Sun National Melanoma Research and Education Forum
Thursday, October 18
Indianapolis, Indiana
Please join the Outrun the Sun, Inc. board of directors, research and education partners
and special guests for an informative overview of progress occurring in the world of melanoma research and skin cancer education.
5:30 pm: Hors d'oeuvres Reception; 6:30 pm:Program
Indiana University Health Fairbanks Hall
Featured Speakers
  • Douglas Schwartzentruber, M.D., FACS, System Medical Director of Cancer Services, Indiana University Health; Named by Time Magazine to Time's 100 Most Influential People in the World in 2010, Dr. Schwartzentruber will provide opening remarks.
  • Tsing Cheng, Ph.D., New York University, 2011 Outrun the Sun, Inc. National Melanoma Research Scholar
  • Omar Ali, Ph.D., Wyss Institute for Biologically Inspired Engineering, Harvard Institutes of Medicine, 2011 Outrun the Sun, Inc. National Melanoma Research Scholar
  • Anand Ganesan, M.D., Ph.D., University of California-Irvine; Dr. Ganesan is a 2010 Outrun the Sun Melanoma Research Scholar. He will join via teleconference to discuss his recent research discovery that involves identifying a cause of chemotherapy resistance in melanoma.
  • Lawrence Mark, M.D., Ph.D., Assistant Professor of Dermatology, Indiana University School of Medicine (IUSM), will provide an update on the enhanced dermatological curriculum for all IUSM students and the support of OTS.
  • Anne Dowden, Founding Board Member, Rochester Melanoma Action Group, Rochester, New York; First licensee of the Outrun the Sun Race Against Melanoma
Please RSVP by October 1
to Mary Beth Dedman;; 317-253-2121
Directions to Fairbanks Hall:
Convenient free parking is located in the surface lot east of the building.
Outrun the Sun thanks Indiana University Health and Dermatology, Inc. for support of this event.

Looks like this will be a great event. 


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Becky C.'s picture
Replies 9
Last reply 10/7/2012 - 10:03am
Replies by: kellygrl, Becky C., jag, Ali, Amanda, jmmm, benp

Hi everyone.I have not been on in awhile but have been reading and keepin up with my fellow patients out there.  I was so sorry to hear about Kevin.He was so courageous in sharing his experience.  After being NED for alittle over a year, I just found out this week that I have brain mets, MRI says most likely from my melanoma primary which was on my foot. I have a total of six lesions, one larger one that I will have surgery on, then follow with radiation for the rest. Not sure what treatment will be beyond that. Naturally, I am scared to death. I would really like to hear some success stories from those who were successfully treated for brain mets. I really appreciate it, thank you.

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H555's picture
Replies 6
Last reply 10/7/2012 - 9:51am

I got the call from my oncologists medical assistant today. Actual appt with the dr is next Wednesday. I've been om Zelboraf since April 8. A week earlier my radiation oncologist told us I wouldn't last 2 summers without something like zelboraf. Thank God I have th BRAF mutation. I had an amazing response in th first 8 weeks, 90% of th mets in my lungs were either resolved or significantly smaller and the collapsed lobe on the left lung was reinflating. The next bi-monthly scan showed continued good response and today she said my scans were even further improved. I,am feeling very very fortunate.

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Anonymous's picture
Replies 3
Last reply 10/6/2012 - 9:00am
Replies by: Phil S, Anonymous, Swanee

I did a quick search and found this heartfelt entry posted on line ( 


Many of you know my only nephew Kevin Kagel has...
Posted: Oct 01, 2012 (09:51:13 PM) | Updated: Oct 02, 2012 (06:59:45 PM)

Many of you know my only nephew Kevin Kagel has been battling melanoma for two years. Sadly, Kevin, who was only 28, died over the weekend. During those two years, he researched and tried every treatment made available to him, endured side effects and setbacks, and yet remained strong, positive and thankful for anything the medical community could do to give him more time. We have a small family and Kevin was like a son to Dennis and me. He was our son Mike's and daughter Laurie's only cousin so this is a devastating loss for our family. Yet we are thankful for the time we had with this truly amazing person who was talented, kind, caring, compassionate and had a wonderful sense of humor. We treasure the memories of times spent with him including the annual beach vacations, holidays, birthdays and more. We know the impact he had on the lives of others too because a steady stream of friends showed up at the hospice in his final days to visit him. We also are so thankful for his wife Brenda who loved him deeply, was so devoted to him and strong for him, and brought him immeasurable happiness. I'll end with the last line of one of Brenda's postings on his facebook page when he entered hospice.
"If there is ever a time when you are sad or down on life, please ask yourself, 'What would Kevin do?' and I promise you will find the courage and strength you need. He loves you all!"




Luke 1:37

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gabsound's picture
Replies 5
Last reply 10/5/2012 - 9:47pm
Replies by: gabsound, Harry in Fair Oaks, Anonymous, Janner

I'm wondering how you with bone mets treat your pain. I'm trying to still work and am dealing with pain in my left femur. This is an area with definite changes seen on CT and on X-ray. At night I will take something with codeine, but during the day this makes me too sleepy to function.
Ibuprofen seems to help some, but I need to take 600mg every 4 hrs. I also found some indomethacin I used when I was in hospital doing biochemo. It is like ibuprofen, but lasts for 12 hours.

I saw the radiation oncologist today and he thinks we need to radiate. I was relieved to hear that, because I really don't want to get a fracture in my femur.

The trip to Angeles clinic went well. I really like Dr Hamid. I have to wait until after my next pet/CT to know which way things are going as I had a mixed response to last round of Yervoy. If stable or improved no need for clinical trial. He suggests carry on with more Yervoy. My insurance company is going to love that at $26,000 a dose (assuming they will pay again).

So in a holding pattern, but not coping all that well w the pain.

Any thoughts?

Julie in Las Vegas

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Anonymous's picture
Replies 9
Last reply 10/5/2012 - 8:21am
Replies by: Tina D, natasha, Linny, Anonymous, Janner, Tim--MRF

Hello All,

I am female 40 y.o. stage 1B patient (diagnosed in 2004). About 3 weeks ago I noticed strange bump on my vulva. It was slightly raised but I cannot say it is a mole because it appeared being in/under the skin. When I tried to define its shape by palpation, I cannot define it for sure. The color was reddish but that goes away when you press on it. The best way to describe it is that it is an induration in the upper part of the skin, which is raised. I was over the hill with worry. Saw OB/GYN who thought that it was a blocked folicle and said come back in 2 weeks if it doesn.t go away. This lesion was bothering me when I was walking (kind of burning sensation), besides, it had an erosion and scab on and off. Today (in 2 weeks) I saw OB/GYN who took it out for me (I insisted) and sent it away for pathology. He believes it is nothing and I am a crazy patient but I am very stressed thinking about what it may be. Can second primary of metastasis of cutaneous melanoma present in vulva???? How would it look like in vulva??? I am very, very worried. Thanks for listening.

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Latest News

Australian researchers help show two-drug melanoma combination helps slow cancer in study
3rd October 2012

Australian researchers at Melanoma Institute Australia and Westmead Hospital in Sydney have published the results of a study that shows a combination of two experimental melanoma drugs helped slow the cancer’s progress longer than a single-drug treatment.

Patients taking the new melanoma drugs dabrafenib and trametinib together delayed tumors from progressing for 9.4 months, compared with 5.8 months for patients taking dabrafenib alone, according to the study of 162 patients. The trial was part of the second of three phases of studies by researchers in Australia, the US and Europe.

Dabrafenib works by blocking BRAF, a mutant gene that spurs cancer-cell growth in about half of melanoma patients, while at the same time, trametinib thwarts a related protein called MEK, which helps tumours resist an attack on BRAF.

The study, funded by the pharmaceutical company GSK, was presented at the European Society for Medical Oncology meeting in Vienna over the weekend by Dr Georgina Long from Melanoma Institute Australia, Westmead Hospital and The University of Sydney, and simultaneously published in the New England Journal of Medicine.

The phase I and II trials focused on combining two drugs to delay the resistance to BRAF inhibition. The study tested two doses of trametinib. The combination of drugs prolonged progression-free survival over single-drug therapy from 5.8 months to 9.4 months, which represented a 60% improvement. Among patients who received both drugs at the higher dose, 41 percent had not progressed 12 months after treatment began, compared with 9 percent in the single-drug arm of the study.

Patients taking the two medicines together had lower incidence side effects including rash and skin lesions, often associated with single agent dabrafenib.

Adding the MEK drug may reduce a side effect of BRAF drugs, the development of non-melanoma skin cancer, while possibly boosting efficacy, according to Dr Georgina Long, a study leader and oncologist with Melanoma Institute Australia and Westmead Hospital in Sydney.

Dr Long said, “Understanding melanoma and its mutations helps highlight more deadly weaknesses of the cancer, which we can exploit using new drugs and drug combinations.”

“We know that resistance emerges within 5-6 months of treating patients with single-agent selective BRAF inhibitor. We also know that most of the resistance mechanisms identified so far result in re-activation of the pathway that the BRAF inhibitor initially blocked (MAP kinase pathway). This was the basis of the rationale to trial the addition of a MEK inhibitor. It blocks the same pathway, but lower down, and we hoped that by combining both drugs we would see a significant delay in the emergence resistance that would impact patients lives.”

“The combination therapy of the BRAF inhibitor dabrafenib and the MEK inhibitor trametinib prolongs the progression-free survival in patients with V600 BRAF mutation-positive metastatic melanoma compared with dabrafenib monotherapy. Importantly, the combination also decreases the rate of the cutaneous toxicities compared with dabrafenib monotherapy, particularly the oncogenic cutaneous toxicity of squamous cell carcinoma,” Dr Long said.

Download press release

this is the website

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bron's picture
Replies 1
Last reply 10/5/2012 - 3:55am
Replies by: bron

i have been thinking about this survey  as i have yet to do it....... maybe i am crazy but the article states   ..

The current cost of ipilimumab or yervoy in Australia is $120,000.

To put that in perspective the average suburban house in Brisbane costs 330,000 to 400,000.( It take two wages and 30 years to pay off.)

Ruling out that only wealthy people in Australia get melanoma then the average person would have had no access to this drug.

 I read this as .........  Very few people in Australia can answer this questionnaire .my da 


Would it be rude of me to ask any people on this website that have used this drug to click on the link and make their comments as to any

positive results from use of the drug ipilimumab (or yervoy). The actual form that you see when you click on the link is very basic.


It may help many , many people in Australia......


Thank you and hoping some may help....

very kind regards from bron



Medicine Information.
Dear MPA Member

We need your voice to ensure patients with advanced melanoma have access to affordable treatments. Please provide a comment on new PBAC submissions.

What is the Pharmaceutical Benefits Scheme (PBS)?
The Pharmaceutical Benefits Scheme (PBS) subsidises the cost of certain medicines, therefore ensuring they remain affordable.

Who decides which medicines are listed on the PBS?
The Australian Government is responsible for deciding which medicines are on the PBS, however their decision is mostly based on advice from the Pharmaceutical Benefits Advisory Committee (PBAC).

The PBAC is an independent body of experts that reviews and make recommendations to Government about newly submitted medicines.

The PBAC meets 3 times a year and its next meeting is in November 2012.

Why is this important for melanoma patients?

Although melanoma is easy to cure in its early stages, there is yet to be a drug developed that will successfully treat melanoma in its advanced stages.

In these cases, only a handful of drugs are available, and they have limited application and suitability for each individual patient.

The first new drug up for PBS recommendation is Ipilimumab or “Yervoy”. This drug contains the active substance ipilimumab, a protein which helps your immune system to attack and destroy cancer cells..

The PBAC has considered Ipilimumab twice before, and on both occasions the PBAC requested more information.

If not subsidized under the PBS, the cost for an Australian patient with advanced melanoma seeking treatment with Yervoy is approximately $120,000. Most patients will not be able to afford this in the final stages of their battle with melanoma.

How can you help?

Before the PBAC makes recommendations, it has a two week period where it considers comments from the public. This period starts from the 26 September until 10 October.

We encourage all melanoma patients, carers, family members, healthcare professionals and advocacy groups to write to the PBAC and provide the panel members with personal stories on current treatment options, and the personal impact of melanoma on life.

What kind of comments would be helpful for the PBAC?
The PBAC asks you to consider 5 questions, however you don’t have to answer all of the questions.

1. What treatment (if any) are you using now?

Guiding questions for patients:
- please describe past and current treatment(s) you have accessed?

2. What do you see as the benefits of this new medicine for you?

Guiding questions for patients:
- Have you accessed Ipilimumab? What benefits did you experience?
- If you have not accessed Ipilimumab before, explain why access to Ipilimumab could be beneficial to you?

3. How will your life and that of your family and carers be improved by this new medicine?

Guiding questions for patients:
- Describe how your life and that of your family and carers be improved by this new medicine?

Guiding questions for family and friends:
- Please describe who you are commenting on (i.e. yourself, partner, family member or friend)?
- Describe how the life of the patient and that of other family members and/or carer can be improved by this new medicine?

4. What other benefits can you see from having this new medicine on the PBS?

Guiding questions for patients:
- Without subsidy, could you currently afford it?
- If not, what other options do you have to purchase Ipilimumab?

Guiding questions for family and friends
- Please describe who you are commenting on (i.e. yourself, partner, family member or friend)?
- Why would you like to see the patient have access to Ipilimumab?
- Without subsidy, could you currently afford it?
- If not, what other options do you have to purchase Ipilimumab?

5: Do you have any comments on the consumer input process?

Guiding questions for patients, carers, family and friends:
- Do you believe the two week commenting period is sufficient?
- Do you believe that the questions asked during the consumer input process are appropriate? If so, why? If not, why not?

How to submit comments for the PBAC’s November meeting

Your comments can be submitted from 26 September until 10 October. There are three ways to do so:
1. Online at the Department of Health & Ageing website by clicking here or type this address in your web browser:
2. Call (02) 6289 8592 to request a form and send the completed form to the Department of Health & Ageing before 10 October
3. Write a letter of support and send it to PBAC, GPO Box 9848, Canberra, ACT 2601 before 10 October.

The PBAC will consider all comments submitted by 10 October.

MPA will send the outcome of the PBAC meeting to all members six weeks after the November meeting.
You can get more information by clicking here or you can type this address into your web browser:

Need further information or support?
Please contact Melanoma Patients Australia on 1300 88 44 50.

1 For patients with unresectable or metastatic melanoma who have failed or are intolerant to prior therapy. For more information about ipilimumab, refer to the Consumer Medicine Information. Medicine Information.

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