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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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
Anonymous
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

http://www.melanoma.org.au/

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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:
www.health.gov.au/internet/main/publishing.nsf/Content/PBAC_online_submission_form
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:
www.health.gov.au/internet/main/publishing.nsf/Content/health-pbs-general-outcomes_full.htm

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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carwil's picture
Replies 2
Last reply 10/5/2012 - 2:24am
Replies by: Anonymous, Charlie S

Hello.  My name is Carrie Wilson.  I am currently gathering information for a final  research project on patients with melanoma who have received Interferon.  I am looking for anyone willing to share medical records such as pathology reports, oncology reports, and personal feedback.   All names and identifying information should be withheld.  I would greatly appreciate anyoe that is willing to help.  My email is oahuwilson@gmail.com  Thank you all for your time and interest.  I hope that someday I will be able to make a difference in this field of research.  Godspeed

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Linny's picture
Replies 13
Last reply 10/5/2012 - 1:40am

He is now with the angels.

There is a guestbook on this web site that you can sign.

http://www.legacy.com/obituaries/citizen-times/obituary.aspx?n=kevin-kagel&pid=160238700#fbLoggedOut

Stage III, Unknown Primary; 1 positive node in left axilla

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Rinn2012's picture
Replies 8
Last reply 10/4/2012 - 10:31pm
Replies by: simone, shelbug66, Janner, Anonymous

Hi I have been newely diagnosed with melanoma stage 1B. The Path report stated 1.2mm in depth, and less than 1mm for mitotic rate and no ulceration.  I have to have a wide margin biopsy and lymph node biopsy.  I have surgery the 5th.

I was wondering has anyone else had the stage B and have it come back?

I know I should worry about one thing at a time, since I havent had surgery yet, but I have seen so many of you that started at stage 1 and then it has come back and moved up stages.

thanks for your input

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Hi and sorry... I really hate to take the time from all of you with much more serious issues right now.  That said, I'll try to keep it brief and thank you in advance for any feedback.

In the last 2 yrs since my diagnosis with Melanoma (1B), I have had 1 or more basal cells diagnosed after every visit (every 4 months).  I've been using the Plastic Surgeon that my group  recommended but now wonder if I should be using the Mohs surgeon for these?  My basal cells are all on my face or chest and I imagine I'll be running out of skin soon if I keep using the Plastic Surgeon b/c it's usually 10 stiches per basal.  I am asking now becasue at the rate I'm going (and at the rate my family members develop basal cells), I thought I should come up with an educated plan.  My Mel Specialist does not like the topical chemo (sorry do not have name) because it makes it hard for her to track.

Any thoughts?  Once again, sorry to ask such a trivial question but I didn't kow who else to ask.  Thank you very much.

 

By the way... Celebrating 2 years NED this weekend!  :)

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Replies by: deardad, Swanee

It is is important to let others, in a legal way, know how you wish to die.  

I know, it is not a popular subject; but with all the constant hand wringing around here, the obvious seems to escape some.

Do you have a living  will?  Do you have advanced directives?  Do you have clearly defined medical directives that remove others from altering your end of life wishes?

It is important to do so.  For instance, in my case, after 21 days of vegatative state on supplemental nutrition; all that will be discontinued.  No family member or outsider can chage that because I have advance directives.

In addition, my directives are very specific about my body and what I want and do not want.  No embalming, cremation and what is next.

See, this way, all the arguments are over.

In my mind, this is one part of self determination.

Either way; take heed and take charge.

Cheers

Charlie S

 

 

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PV-10. Has anyone heard of this stuff? What is it?

http://www.dailyfinance.com/2012/10/02/provectus-pharmaceuticals-presents-final-phase-2-m/

KNOXVILLE, Tenn.--(BUSINESS WIRE)-- Provectus Pharmaceuticals, Inc. (OTC BB: PVCT, http://www.pvct.com), a development-stage oncology and dermatology biopharmaceutical company, announced that final top-line data from its Phase 2 clinical trial of PV-10 for metastatic melanoma were presented at the ESMO (European Society for Medical Oncology) 2012 Congress in Vienna, Austria on October 1, 2012. The data were presented in Poster Presentation III, Abstract #1137P, "Immuno-chemoablation of metastatic melanoma with intralesional rose bengal." The poster was presented by Dr. Sanjiv Agarwala, M.D., Principal Investigator for the Phase 2 trial of PV-10, and Chief of Medical Oncology and Hematology at St. Luke's Hospital and Health Network in Bethlehem, PA. The poster was authored by Dr. Agarwala along with co-authors J.F. Thompson, B.M. Smithers, M. Ross, B.J. Coventry, D.R. Minor, C.R. Scoggins and E. Wachter.

  • An Objective Response Rate (OR) of 51% in subjects' target lesions (25% Complete Response and 26% Partial Response);
  • 69% disease control in these lesions (combined Complete, Partial and Stable Response subjects);
  • 33% of subjects having an untreated bystander melanoma lesion achieved an OR in their bystander lesions while 50% achieved disease control in these lesions;
  • Response of bystander lesions was highly correlated with outcome in treated target lesions, with a bystander lesion OR of 61% in subjects achieving complete or partial response in their target lesions versus 18% bystander lesion OR in subjects that did not achieve this level or response in their target lesions;
  • Stage III subjects experienced a substantially higher target lesion response rate (60% OR and 79% disease control) versus Stage IV subjects (22% and 33%, respectively);
  • Similar trends were noted in response metrics for bystander lesions between these two subpopulations;
  • Analysis of temporal data showed that Stage III subjects also experienced significantly greater mean Progression Free Survival (PFS) of at least 9.7 months, versus 3.1 months for Stage IV subjects (median PFS for Stage III subjects was not reached during the 12-month study interval);
  • Overall survival (OS) data were also presented by disease stage, with Stage III subjects achieving a mean overall survival of at least 12.6 months (median not reached during the study interval) versus 7.3 months for Stage IV subjects.
  • Case studies on several subjects illustrated potential stasis or regression of untreated visceral lesions following PV-10 treatment of their cutaneous lesions, while data on long-term treatment of one study participant demonstrated successful management of the disease over a period exceeding 3 years.

Dr. Eric Wachter, PhD, Chief Technical Officer of Provectus and Study Director for the clinical trial, noted that, "These final analyses confirm previously reported trends from preliminary data. The high response rates for target and bystander lesions in Stage III subjects are particularly striking and illustrate the potential for PV-10 to benefit these challenging cases."

Dr. Agarwala, commenting on the reported data, stated, "These results further confirm the robust response that can be achieved with PV-10. This is particularly clear in Stage III patients where it is possible to inject all or virtually all of the patient's melanoma lesions. Despite the strict limits on dosing schedule in the Phase 2 protocol, many of the patients achieved excellent disease control or even complete remission. I find it quite remarkable that this included a number of subjects who experienced favorable response in their untreated skin or visceral lesions."

Stage III, Unknown Primary; 1 positive node in left axilla

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I haven't found how to download it yet, but it can be viewed in sections on line or ordered telephonically.  Sections can be downloaded by veiwing and then "Saving AS" from the file menu.

Single give away printed copies of CancerResource can be performed by job AICR during 1-800-843-8114, Monday by Friday, 9:00 AM to 5:00 PM Eastern Standard Time.

 

er.aicr.org/new/flipbooks/CancerResource/index.html

http://cancerwhatis.info/aicr-offers-diet-and-activity-tips-in-free-e-bo...

 

CancerResource: Living With Cancer

The not-for-profit American Institute for Cancer Research (AICR), noted for its investigation of links between lifestyle and cancer and now in its 30th year, has released a free digital book for cancer patients and survivors, with current, evidence-based advice on managing diet and activity during and after treatment.

The 44-page book, called “CancerResource: Living With Cancer” represents “a completely retooled version of the free information kit that AICR has offered newly diagnosed cancer patients and their families for decades,” the AICR noted in a news release. It’s expected to be especially valuable because it “focuses on the questions that patients tell us they have a hard time finding answers to,” said Alice Bender, a registered dietitian with the AICR. “There’s been a lot of new research on diet and exercise during treatment in the past few years, for example, and CancerResource translates those encouraging findings into useful tips.”

CancerResource begins with an introduction on how to use the guide, and includes these sections:

● During Treatment: Healthy Eating
● During Treatment: Getting and Staying Active
● After Treatment: Healthy Eating
● After Treatment: Getting and Staying Active
● Cancer and Its Treatment: General Information

Its content includes:

● Tips on understanding the diagnosis and finding a healthcare team
● Worksheets with questions patients should ask their healthcare providers about their diagnosis and its treatment
● Ways to use good nutrition and physical activity to help make treatment more tolerable
● How to cope with diet-related side effects and stay active during and after treatment
● Answers to “hot topics” questions about dietary and phytochemical supplements (eg, soy), macrobiotic and vegetarian diets, dietary fiber, and more
● Common cancer terms (in a glossary)
● Useful resources for patients (information about, and links for, the AICR, the National Cancer Institute, American Cancer Society, Healthfinder, MEDLINEplus, and OncoLink)

Besides the main CancerResource book, there are also CancerResource programs focusing on breast, lung, colon, and prostate cancer.

Single giveaway printed copies of CancerResource can be performed by job AICR during 1-800-843-8114, Monday by Friday, 9:00 AM to 5:00 PM Eastern Standard Time.

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

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NYKaren's picture
Replies 7
Last reply 10/3/2012 - 9:25pm

Hi everyone.

 

 I just came from Dr. Wolchok's office, where I was expecting to be put on a stronger regimin of chemo.

Several months ago, I had mentioned DPCP to him, which someone here on the board had suggested to me.  (Frank, Jimmy??)

He and my onc. derm, Dr. Halpern, have been frustrated because they couldn't find anyone here to compound it.  Turns out, it's been on his mind all these months, and he had just (as in earlier today) met a reseacher from Rockafeller University (research university, Dr. Leves, who uses this compound.   I just spoke with him, and he told me that "I'm just what they're looking for!"  Imagine that!  So I'm waiting for the nurse coordinator to call me to set up a screening. 

I'm beyond shocked that this has been on Dr. W's mind for all these months...that's just the kind of guy he is.

Could it be that maybe, just maybe, this would work?  Stay tuned.

karen

Don't Stop Believing

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http://clinicaltrials.gov/ct2/show/NCT01584648

The trial will randomize half the patients to the combo.  The other half will get only the BRAF inhibitor.  I have been on a Phase I/II trial of these two drugs for almost a year-and-a-half (getting both drugs), and have done very well.  Also, very good interim results were reported at the last ASCO conference. I think that anyone who can qualify should seriously consider this trial.

Best wishes,

Harry

Too ugly to die!

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SharonAust's picture
Replies 4
Last reply 10/3/2012 - 8:29am

Hello from Sydney Australia,

My friend has Stage IV unresectable melanoma (still confined to lymph). She has been on vemurafenib (Zelboraf) and had an unusually bad experience with side effects. She's been offered a place on trial of E7080, but is nervous to go on another clinical trial.

Any info on side effects from E7080, especially compared to Zelboraf?

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