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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Hello all,

We received an inquiry from a reporter at a national publication working on an article about cancer drug costs. The reporter would like to speak with people who are having trouble paying for the cost of their medicines/drugs. If you are experiencing this challenge and would like to speak with the reporter to share your story, please email me at media@melanoma.org.

Thanks!
 

- Lauren, MRF

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Jennycrn1's picture
Replies 20
Last reply 6/9/2015 - 11:28pm

I had a random mole check and 3 moles removed at the end of April, and than found out one of these (on my back) was melanoma. Have since had a wide excision surgery and sentinel node biopsy-- and 1 of 3 sentinel nodes came back with 'a few melanoma cells' in it. No big tumors in the nodes. The excised tissue had 'a few melanoma cells' but otherwise the margins were clear. Then had a PET scan (negative) and a full axillary lymph node dissection (all 13 nodes removed were negative). Been told I am stage 3a. Waiting on the genetic testing.  Meeting local Oncologist this week and then going to the big referral center in 2 weeks.  The medication portion of this disease is overwhelming. I'm not sure what to expect or even ask for based on what I've read. I'm hoping the 2 doctors will recommend the same thing, and that I can get treatment locally if needed. Any advice? We have 2 kids under age 4 at home with us now, and our oldest son died less than 2 yrs ago from a congenital heart disorder while I was pregnant with my youngest. I cannot bear putting my family thru any more loss. I want to do everything I can to stay around for them! Thanks in advance for any advice....

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tmelanio's picture
Replies 20
Last reply 6/8/2015 - 5:35pm

Today, when I presented sources (N ENG J MED, Cancer Research UK, American Cancer Society, and even Wikipedia with footnotes) claiming that lymph node dissection does not increase survival particularly for melanoma patients, my Dr. Molina-Vega, a general oncologist, ignored them and said to stop reading because it definitely does.  He stated that LND is the standard of treatment for StageIIIb melanoma based on the National Comprehensive Cancer Network which he stated is the best source available and that he adheres to it.  Throughout our converation he repeated, "Stop reading".  He said all ocologists advocated lymph node dissection for Stage III and that if I found one who didn't, to have him call.  When he said that my SNB still had two more weeks to heal, I said I could use that time to get a second opinion. I assured him that I wasn't refusing the LND - I just wanted answers other than "trust me".  And although I was polite and respectful, he became irate and arrogant and said that there was no way he would now treat me, since I don't trust him.

He exited. I did not get a chance to ask if I had the BRAF gene or how often I will be getting PET scans and brain MRI.

It was 2 months after diagnosis before his staff would give me an appointment. He never offered choices. Before the SNB, he said the chances of me having melanoma was 5%. That is for thin lesions - mine was intermediate. He had me sign papers authorizing his nurse practitioner to act on his behalf.  At the May 18 SNB follow-up she balked at telling me I had a positive lymph node.She said I was Stage IIIa N1, the lowest Stage III, and that my next step was chemo.  Today, June 2, I learned form Dr. Molina-Vega, that I am really Stage IIIb N2, a huge difference in terms of survival. She did not notice the extracapsular extension on the pathology report.  Chemo was again offered as a possibilitty.

Is anyone out there getting treatment without a lymph node dissection? 

I am scheduling an appointment with the VA in Tampa.  A nurse in oncology said that they may be able to send me to Moffitt for a consultation.

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Anonymous's picture
Anonymous
Replies 3
Last reply 6/2/2015 - 10:36pm
Replies by: Janner, Anonymous

I recently went for my routine skin check and the dermatologist took a shave biopsy as he didn't feel it was anything serious. The report came back superficial spreading malignant melanoma from a respected pathologist...the report said the recommended treatment was a 1cm we and careful flow up (visits every 3 months for 2 years..then every 6 for 3)...when I asked the stage..said as low as you could go above 0..and when I asked about lymph nodes...was told early enough not to worry. Does this sound right?...I have a follow up this week and am going to ask for a copy of my pathology report. I assume that if it were a stage 2 or higher...I would have been given my options...got the call on a Thursday and had the incision on Friday...I asked them why so soon..and they said even though it was caught early..want to remove melanoma as soon as possible...obviously..I agree with that...but then your min thinks that it was spreading fast...you here people waiting... my dermatologist is very reputable and he knew I was upset waiting for the report..so I assume he had my best interest at heart.

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I have a likely case of Nodular Melanoma presenting at this point as a 3.5mm diameter bloodblister like lesion on an old mole. I am getting it biopsied tomorrow (June 3) and will not know for sure that it is, though the Doctor seems to suspect it greatly. Otherwise I am without symptoms. 

The problem is, my wife and I have a once in a lifetime, pretty much non refundable trip to Europe starting Friday, June 5-June 22. Are those 18 days going to literally mean the difference between life and death for me, if I do not deal with this until I get back? 

I am worried (actually scared out of my mind is a better way to put it) as can be, obviously, but do not want to break my wife's heart either by cancelling the trip or destroying my potential prognosis and killing myself. I am in a tough place.

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georgiegirl's picture
Replies 1
Last reply 6/2/2015 - 9:50am
Replies by: Janner

I noticed a new freckle on my neck, I honestly can't remember how long ago, a couple of months, a bit longer?

It's now about 2.5-3mm in diameter, round, clear borders, raised and firm to touch. Colour-wise it's very dark brown, with a slightly blue black appearance under bright light. It's definitely grown noticeably in a fairly short time.

I've spent hours googling pictures and have convinced myself it's a nodular melanoma because it looks just like the pictures I've seen. It's raised but it feels as if it's a little deeper under the skin too.

It's about halfway between my jawline and collarbone, 4 cm from the midline. I have a palpable cervical LN about 1cm and firm on the same side. But I often have these ones come up.

Trying to get an appointment with a dermatologist today.

I'm terrified, can anyone give me any advice? It's not very big in diameter but that doesn't help if it's a nodule melanoma, right?

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Happy_girl's picture
Replies 3
Last reply 6/2/2015 - 8:43am
Replies by: Anonymous, Happy_girl, Janner

I have a random question.  What does it mean when mole that was removed has color return? In my head im convinced it's the worst thing in the world.  Does it mean melanoma?  Thanks for your insight! 

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DennysGirl's picture
Replies 12
Last reply 6/2/2015 - 7:04pm

My husband had melanoma removed 12 years ago from forehead. he is now 47 and It"s back, Stage 4. HIs largest is in his right lung and is inoperable becuase it"s too close to his heart.  Also small leision on brain, neck, spine, ribs, pelvic and knee bones. small tumor in liver. He was diagnosed 4 weeks ago and are still waiting for results back from Mayo on BRAF. We hope to hear a plan of treatment on Thursday. 

We have been reading on Yervoy and also on Keytruda. It is all very scary. If you have any advice on what types of questions to ask or treatments to ask about, it would be apreciated!  The dr has advised us to start the process of long term diasability....Any thoughts? Right now we are using our local hospital that has a Cancer center. The Dr says he can send us to Northwestern in Chicago if we would like but he says that he doesn't feel that they would give us any better options or treatments.....Any thought?

Thank you again! It has been very inforative reading posts on here and encouraging too! 

Renee~loving wife fighting for her hubby! 

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ashlee12's picture
Replies 3
Last reply 6/1/2015 - 10:10pm
Replies by: Janner, ashlee12

So i have this mole... Very small mole the tip of a pen covers it small.... Well it's like a brown with what looks to be some black in it which totally feeaks me out... My mom had a derm appt today and I went with her as it was her first one ... I showed my mole to the derm and she said that it looks okay but to keep and eye on it.. She said it looked more brown then black... Well I go to see her in February and obviously I'm going to keep an eye on it and if it changes in any way I'll make an appointment .... But I am a little scared ... Any advice?

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Cancer drugs rankings suggest many are of little benefit to patients

The Guardian 

Sarah Boseley Health editor

1 June 2015

© Copyright 2015. The Guardian. All rights reserved.

Leading experts call on pharmaceutical industry to focus on coming up with meaningful drugs and boost levels of effectiveness

Many modern cancer drugs are of very little benefit to patients, according to a group of leading European experts, who have devised a way to score them.

More and more medicines have been going on to the market with lower and lower levels of benefit

Prof Richard Sullivan

Among the drugs that do badly in a table published on Saturday revealing their efficacy is Erlotinib for pancreatic cancer, which offers just 15 extra days of life.

The experts are all members of the European Society for Medical Oncology (Esmo). They presented their scoring system, which has nothing to do with cost, at a meeting in Chicago of the equivalent US body, the American Society of Clinical Oncology (Asco). The document, which includes scores for more than 70 cancer drugs, has been published in the Annals of Oncology journal.

Prof Richard Sullivan from Kings College London, a group member, said they wanted pharmaceutical companies and those who fund drug discovery to focus on inventing meaningful drugs that help patients, rather than just making profits.

He said: “Over the past decade, more and more medicines have been going on to the market with lower and lower levels of benefit.”

Not many medicines are being brought forward as potential cures, most are for palliative care. To get a licence, the manufacturer only has to show that the drug has some effect. Sullivan said: “It is easier to get a marketing authorisation in palliative disease.”

The E smo magnitude of clinical benefit scale scores drugs according to the results of the clinical trials they have been through, from one – providing the least benefit to patients – to five. Drugs that score between one and three are not doing well, Sullivan said.

He said: “Where they don’t score above three, you have to ask are they really delivering clinical benefit. There will be a lot of people saying there are some drugs that get into four that shouldn’t be there.” Because the trials are run in ideal, carefully monitored populations, the benefit in the real world is likely to be lower.

Most of the drugs in lung cancer score four, but Erlotinib, also used in this form of the disease, again scores one. Out of 14 drugs for bowel cancer, three score four but the rest all score less. For advanced breast cancer, Lapatinib scores five, but there are four drugs that score three or less, including Eribulin, which the National Institute for Health and Care Excellence (Nice) turned down but is paid for by the Cancer Drugs Fund. In melanoma (skin cancer), eight out of nine drugs score four.

It is a challenge to everybody involved in drug research, Sullivan said. “Are we really designing the trial that needs to be designed to prove clinical benefit or are we just trying to get [the drug] into the market? Is it genuinely for patients or to sell medicines?”

He and his colleagues hope the drug regulatory bodies will think about their decisions to approve the low benefit drugs. They also want the best drugs to get an approval rating that means they will be high priority for use in all countries.

Rolf Stahel, the Esmo president, said: “As the international organisation committed to the interest of the oncology community at large, we are concerned about some anti-cancer medicines approved by the European medicines agency not being available or affordable to patients when prescribed.

“We aim to signal the drugs with a large magnitude of clinical benefit which should be endorsed across Europe for rapid patient access, especially when these medicines are recommended through evidence-based standards set forth in the internationally recognised Esmo clinical practice guidelines.”

* This article was amended on 1 June 2015. It originally stated that in melanoma, eight out of nine drugs score eight on the Esmo magnitude of clinical benefit scale. In fact, those eight drugs score four out of five. This has been corrected.

Guardian Newspapers Limited

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Anonymous's picture
Anonymous
Replies 6
Last reply 6/2/2015 - 6:39pm
Replies by: kylez, Anonymous

Can anyone clarify this for me?

If someone has the NRAS mutation, is that considered wild-type?

Thank you.

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blden2186's picture
Replies 2
Last reply 8/2/2015 - 9:09pm
Replies by: blden2186, Bubbles

Well ithas been over a year sine I was on this site.  I have been stage 3C for 3 years but have been melanoma free for almost two.  Now I have another tumor on my leg - the 4th round.  I may be getting intothe Tvec trial.  Meeting with oncologist Thursday.  This is getting old. 

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Bubbles's picture
Replies 1
Last reply 5/31/2015 - 10:15pm
Replies by: Bubbles

I hate that anyone may have the need.  But, if you should...these trials may be worth looking into.  Both are reported to still be recruiting.  Call the trial coordinator if you are interested!!!

Ipi plus Nivo followed by ipi:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-new-trial-for-melanoma-brain.html

Pembro/Keytruda:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-pembrolizumab-keytruda.html

Wishing you well.  Celeste

 

chaoticallypreciselifeloveandmelanoma.blogspot.com

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