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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Anonymous's picture
Anonymous
Replies 4
Last reply 9/9/2015 - 10:05pm

I recently had a PET scan that welcomed me to the stage 4 club.

I have a small met on L2 and one small met 5mm on the liver and some lymph node involvement in the groin.

I met the oncologist today and he wants to start me on Keytruda next week.

He told me that even thou the statistics show only 30 percent response that this is for shrinkage and that he is getting a lot of people that remain stable whilst on Keytruda and that being healthy to start with and with a low tumour burder is a big advantage.

He said if i dont respond he will put me on Opidivo and/or Ipi.

Keytruda is only 30 odd dollars per infusion.

Hey says that I am lucky because it was only just recently approved here in Australia.

I am a bit worried about the side effects but he seemed to downplay them saying most people dont seen to have too many issues with the drugs.

Any tips from people out there pre infusion would be appreciated?

 

 

 

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jamieth29's picture
Replies 1
Last reply 9/9/2015 - 8:52pm
Replies by: jamieth29

Just read a article he's going to NYU. I went to Florida 2 months ago to see him for a trial...glad i didn't put more effort into it.

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Nell's picture
Replies 3
Last reply 9/9/2015 - 7:00pm

Just kind of bummed out...have only been on tafinlar/ mekinist combo 13 days and already the last 2 days I have been flat on my back with over 102 fever. I have had this sick tired all week...the lie down kind of tired...Hoping the dosage can be adjusted and I don't have to stop altogether....anybody have their dosage adjusted? Thanks for the chance to vent a bit....this disease sure gets scary at times.....

One voice can make a song; one life can change the world.

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Banders's picture
Replies 2
Last reply 9/9/2015 - 6:42pm
Replies by: Bubbles, khubes

I have been on the Braf combo since March and it was working well but now is not working. PET scan results show lung cancer has spread to the leg and brain. They want to put me on Optivo, do brain radiation and Gamma knife. Any advice or suggestions would be appreciated. 

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Anonymous's picture
Anonymous
Replies 4
Last reply 9/9/2015 - 5:21pm
Replies by: casagrayson, fgevans, Anonymous

First thing is that i am a worrier in general and always think the worse.

about  1 /12 years ago i noticed on my lower back (just below the waistband a brown round lump on my side) - i was in a mirror changing and had not noticed it before. I showed it to my wife who said thats its been there a long time .

 

its a very round brown raised circle around 7 mm in diamter and around 1mm raised . it is rough to tough and not smooth.

 

Since being aware of it i have kept my eye on it and it has remained the same througout the 1  1/2 years.

 

it does not itch and does not bleed.

 

I also have another smaller light brown mole on the other side.

 

basically it does not look like any examples of melanoma i have seen online 

 

should i be concerned.

 

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As options for cancer patients become increasingly complicated, and expensive, the most influential source for US oncology treatment guidelines will for the first time offer a tool to assess the costs versus benefits of available therapies.The National Comprehensive Cancer Network says its new tool will provide a clearer picture of the relative value of medication options, particularly in cases where a very expensive therapy does little to improve survival.Doctors developing the measures expect them to shift demand away from less effective treatments, influencing the prices drugmakers are able to charge.

 They say they are responding to the needs of patients who are having to pay much more for their own care, with higher health insurance premiums, co-payments and deductibles, and want to know the value of their treatments.The NCCN, an alliance of 26 cancer centers, envisions the new tool as a supplement to its widely followed guidelines for oncology care, which set out protocols for treating a range of cancers based on diagnosis, disease stage and other factors, such as age.Other medical groups are also trying to address the cost issue, but not as directly as the NCCN. The American Society of Clinical Oncology is developing its own tool for valuing treatments, but says that its “net health benefit” scores will not consider costs, although prices will be noted alongside the scores. In June, New York’s Memorial Sloan Kettering Cancer Center launched an interactive calculator, called “DrugAbacus,” that allows users to decide how much one of 54 newer drugs should cost based on factors like side effects and novelty.The NCCN scale, to be launched in mid-October, will employ “evidence blocks” that assign a score of up to five points for each of five measures — price, effectiveness, safety, quality and consistency of clinical data. Initially, it will evaluate drugs used for multiple myeloma and chronic myeloid leukemia. Similar guidelines are expected for most other types of cancer by the end of 2016.“A company that has an effective drug that’s appropriately priced should welcome these blocks,” said Dr Robert Carlson, NCCN’s chief executive. If a drug is overpriced, “that’s very important information for everybody.”Currently, prescribing patterns can be inconsistent, determined by an individual physician’s understanding of published data about a drug, patient preferences and habit. US oncologists also can make a profit on intravenous drugs administered in their offices — calculated as a percentage of a drug’s cost — creating a possible financial incentive for choosing higher-priced therapies.The NCCN says the assessment of each medication will be presented in a simple, tabular form — with each of the five components colored in to represent a score of one to five. Eventually, the comparison tool will be incorporated into healthcare technology systems used by hospitals, including products from IBM Watson and McKesson.Threat to drugmakersThe sort of cost-benefit analysis NCCN has undertaken could threaten drugmakers like Roche Holding AG, Novartis AG and Celgene Corp, which earn billions of dollars annually from cancer therapies that may do little to extend a patient’s life or come with severe side effects. Worldwide spending on cancer medications reached US$100 billion in 2014, up from US$75 billion just five years earlier, according to IMS Health. US spending accounted for 42 percent of the total.Drugmakers are already concerned about the accuracy of the information NCCN plans to present and worried that health insurers will seize on the new guidelines to drop coverage of some drugs, said Randy Burkholder, vice president of policy and research at the Pharmaceutical Research and Manufacturers of America. The trade group does not have full details of the NCCN’s plans, and will comment on the guidelines once they are public, he said.The NCCN website has some 700,000 registered users, and more than 6 million copies of its guidelines were downloaded last year. The two largest US payers of health costs — UnitedHealth Group and the federal government’s Medicare plan for seniors — rely on NCCN guidelines to shape their oncology reimbursement policies.“Many, if not most, of the others use our guidelines either directly or indirectly,” Carlson said.But the current guidelines don’t analyze costs, and top oncologists have questioned whether some treatments are worth the price. For example, Roche’s Avastin offers lung cancer patients an additional 1.5 to 2 months before their disease worsens, “but that changes the cost per month of treatment from something in the hundreds of dollars, to close to US$10,000,” said Dr. Lowell Schnipper, chief of hematology/oncology at Beth Israel Deaconess Medical Center in Boston. He chairs the ASCO task force studying the value of cancer care.A recent study showed Stivarga, sold by Bayer AG, added about two weeks of “quality adjusted” life, at a median price of nearly US$40,000, for previously treated patients with advanced colorectal cancer. The researchers said the drug, which causes side effects including swelling of the hands and feet, has become the standard of care for that indication since entering the US market in 2012.Patient advocates have traditionally warned against treatment decisions that factor in a drug’s price, saying such considerations could lead to “rationed” healthcare. But at the same time, patients worry about costs. A recent poll by the Kaiser Family Foundation found than 87 percent of Americans surveyed want changes to US law that would allow Medicare to negotiate drug discounts.Dr. Derek Raghavan, president of Levine Cancer Institute at Carolinas HealthCare System, says doctors need much more real-world information at their disposal, including a cost-benefit analysis of side effects.“If Drug B costs 70 percent of Drug A, but has a side effect profile that brings every second patient to the hospital for a four-day admission, then it does not have value,” he said.

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courtney2015's picture
Replies 1
Last reply 9/9/2015 - 3:08pm
Replies by: Kim K

Hi Everyone,

I posted previously about a strange new mark growing on the underside of my big toe. Im still waiting to hear back from the specialists in the city.

I have another mole thats concerning me. I actually showed the GP this mole when I first showed her my toe. She said it was benign just by looking at it. It was slighly raised, a mix of dark browns and what looks like abit of red (Its hard for me to get a good look at, its at the top of my arm, sort of towards the back of it) and its about 6mm and abit asymmetrical, A few days later I randomly thought to have a look at it and the entire surface of the mole had crusted over and was like peeling? I pulled the top off and it had spots of pigment from the mole. it was now completely flat. This rang alarm bells with me, as this is exactly how my original melanoma behaved right before diagnosis. I rang the GP straight away and saw her the next day. She still mantained that it looked benign but because it had peeled and melanoma is unpredictable, she wanted to do an excisional biopsy. Unfortunately my appointment has been cancelled a few times, and I may get seen to next week, Today the same mole had slightly risen up again and the surface peeled again! Argh! I cant find much info on the internet but I was wondering:

Has anyone had something simliar? 

Do benign moles peel at all? 

Thankyou so much in advance

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Anonymous's picture
Anonymous
Replies 5
Last reply 9/9/2015 - 8:25am
Replies by: pookerpb, momof4boys, Anonymous, beans920

 A year ago, I had a severely dysplastic mole removed from my calf by exicsion.  The excision didn't heal properly, so when they took the stitches out the whole thing opened up, and took several months to heal.  While it finally did heal, I've noticed some dark purple spots in the scar.  One is toward the bottom and is flat, and the other is at the top and raised.  I'm worried that i's a recurrence, even though they said it came back with clear margins.  While the spots have been dark since healing, the raised spot on top has recently looked blue.

 

The blueish color seemed new, and after I carefully picked at it with a pin, the blue seemed to fade.  Now a week later, almost the same exact thing.  I noticed sort of a blue streak, and after messing with it a bit, it's gone back to looking purple.  Has anyone had anything similar to this?  Could it just be hard scar tissue, perhaps built up over a stitch?  If the mole has grown back, why hasn't it come to the very top, but seem to be staying right under the top layer of skin?  Any comments are appreciated!

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evieg's picture
Replies 4
Last reply 9/9/2015 - 8:11am
Replies by: evieg, jbronicki, aquamak

Can anyone please help and interpret what this means form the CT report..."Heterogeneity is suggested within the dome of the liver though no discrete mass is seen with certainty at this time".... So there is possibly something there??  Another place on the report..."the liver demonstrates mild heterogeneity....this is especially true throughout the dome on images 5-8....no distinct lesion elsewhere is noted"

Thoughts?

Thank you in advance!!

 

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stars's picture
Replies 6
Last reply 9/9/2015 - 2:35am

Hi - this is kind of a trivial post in the scheme of things but I wonder if others can relate. Since March I've had 3 WLEs, so three big scars - one is pretty much hidden in my normal clothing (upper thigh), but the other two would be quite visible if I wore, for example, a short sleeved shirt.  When I had them done, just within the last few months, I bought some new tops that cover them (elbow area and upper chest). Its becoming quite an effort to keep them covered as the weather is getting warmer here, but I'm intensely uncomfortable showing them or having to tell my story to well-meaning colleagues who ask. I'm only just coming to terms to what happened to me (3 synchronous primary melanomas) and I'm not ready to share. That, and I find them ugly. Does anyone else have any thoughts on this? I'm in a very public job and I'm sure I would get either stares or queries from well-meaning people, I"m just not ready for that.

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Anonymous's picture
Anonymous
Replies 1
Last reply 9/8/2015 - 10:30pm
Replies by: CHD

I have a mole on my arm that has been there as long as I can remember. The Dr measures it & checks it good when I am there which is now every 3 months. I'm worried it could become melanoma even if not making changes. I plan to have a biopsy done but does anyone have experience with this

Melissa Riley

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hope4ned's picture
Replies 7
Last reply 9/8/2015 - 7:11pm
Replies by: Anonymous, hope4ned, Lil0909, Joe.Pro, jpg, Gene_S

Have initial consultation with surgical oncologist at Mass General coming up after referral from general dermatogist where LO received initial diagnosis from punch biopsy of tumor thickness greater than 4mm, high miotic rate and ulceration Not seen.  Am wondering what to expect for initial consultation.  Have not met with any medial oncologists yet.

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arthurjedi007's picture
Replies 6
Last reply 9/8/2015 - 3:30pm

Like all this stuff it doesn't work for everybody. But apparently if some mutation they call sage3 is inhibiting your pd1 or other treatment from working this might help. Of course you have to have that mutation and the oil has to be of a type that inhibits that mutation which apparently the brand of frankensense they tested does. They didn't say what brand but thought they all have it.

Just rub it on any tumor you have that is close to the surface or on the surface. Even the kidneys if you have tumors there like me. Do not drink it just rub it on. Might not work but it can't hurt.

There is also a trial coming up for sage3 systemically but hasn't started yet.

Im not usually one to promote natural remedies although I believe in them I'm just too cautious and not smart enough to know the real from the fake. But when the doc explained it I figured I should share and maybe it will help someone. I got mine ordered and hopefully it will arrive at the hotel Monday.

Artie

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Anonymous's picture
Anonymous
Replies 1
Last reply 9/8/2015 - 3:17pm
Replies by: CHD

Hi everyone,

I came back from holiday about a month ago and notice a light brown patch on my foot - it didn't look bad or anything, but after I started Googling stuff melanoma came up as a possibility. I went to my doctor and he thought it was nothing, he said come back in two weeks if it hasnt gone. 

Sure enough, it hadn't disappeared. I went back to him, he looked through a hand microscrope with a large light and said he wasn't sure what it was and has referred me to a dermotoligst, who I'll be seeing soon.

However, I'm just really, really worried! I started googling things (which I know was stupid but I get nervous) and I'm just scared...

The spot went from a light brown to a darker brown, and now it looks like its fading a little bit. Could this be something else? 

Thanks

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michaelinsocal's picture
Replies 6
Last reply 9/8/2015 - 3:02pm
Replies by: DZnDef, michaelinsocal, Patina, khubes, Julie in SoCal, Anonymous

Diagnosed at the end of '13. Spindle Cell Melanoma on left ankle, staged (and current) 3A. 

Im getting my second set of scans (CT/MRI) next week and want a specialist to review them and the course of treatment that I've undertaken. 

I live out in the lower Southern California desert (Palm Springs area). Can anyone recommend a melanoma specialist with excellent reviews, preferably within a 1-2 hour drive from here? 

Many thanks in advance.

Michael

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