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 3
Last reply 11/2/2016 - 12:09pm
Replies by: Anonymous

Hey guys, i had a black spot on my toenail but i scrubbed it off somehow, was a small circular thing.. could it be something serious or the fact it could be removed suggest its nothing. Bit scared in all honesty, so would appreciate any answers. I scrubbed under the nail quite hard and its disappeared, would I be right to assume if it was a serious spot I couldn't of done that?

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SOLE's picture
Replies 18
Last reply 11/2/2016 - 9:18am
Replies by: SOLE, Kim K, Bubbles, Ed Williams, Anonymous, Johnjk04

A fairly recent (2014) German study on how to better predict survival than AJCC. More than 1000 patients followed so this is serious.

http://journals.plos.org/plosmedicine/article?id=10.1371%2Fjournal.pmed....

Has anyone already seen this?

Thoughts?

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Still in shock after learning during a routine doctor's visit that she had cancer, Joann Fox barely took in what physicians said.

Radiation and chemotherapy were mentioned as options, but one treatment was new to Fox: immunotherapy.

"I just listened because I'd never heard of it before," Fox, 77, said.

Immunotherapy, which uses certain parts of a person's immune system to fight diseases, could be an option for her non-small cell lung cancer, a doctor said.

"I said, 'Let's go for it,' " she said. "What do I have to lose?"

More than two years later, Fox is well enough to enjoy her volleyball league and choir.

Lung cancer "has for a long, long time been a very not-talked-about disease," said Dr. Jennifer King, director of science and research at the Lung Cancer Alliance.

Now, doctors and patients are cautiously optimistic about advances in immunotherapy.

"We're getting a lot more calls from people who are researching their treatment options, as opposed to those desperation calls: 'I know I'm going to die. Is there anything else I can do?' " King said. "It's become an empowering force."

Immunotherapy treatments work in different ways. Some boost the immune system, and others help train it to recognize and fight cancer cells.

The results have offered tentative hope to patients who may have been told they have a short time to live. Immunotherapy has provided long-term remission for some with a dismal diagnosis.

Sharon Long was diagnosed with cancer at 53. She said she felt crushed when chemotherapy stopped working. She tried immunotherapy. Two years later, the treatment has kept Friday night dinner dates with her husband in their New Haven, Ind., home possible, she said.

"It's really nice that something has come along that can hopefully extend some time for people," Long said.

The five-year survival rate for lung cancer is just above 17 percent, King said. With metastatic disease, she said, that number is less than 5 percent.

Called in the American Association for Cancer Research's 2016 Cancer Progress Report "one of the most exciting new approaches to cancer treatment that has ever entered the clinic," immunotherapy could be a game changer, health experts say.

"Now we can enhance our own body, which is the most powerful defense mechanism we have," said Dr. Edward S. Kim, chair of the Solid Tumor Oncology and Investigational Therapeutics at the Carolinas HealthCare System's Levine Cancer Institute in Charlotte, N.C.

Just this week, the Food and Drug Administration approved pembrolizumab (Keytruda) as a first-line treatment for some patients, meaning doctors can offer it as an initial option instead of only after trying chemotherapy or radiation. The agency also approved another immunotherapy drug, Tecentriq, this month.

The drugs join a small fleet of immunotherapy drugs approved by the FDA within the last two years, including nivolumab (Opdivo), to help treat lung cancer, the leading cause of cancer deaths.

This month, research unveiled at the European Society for Medical Oncology's conference in Copenhagen, Denmark, showed lung cancer patients who took Keytruda as a first treatment survived longer than those receiving chemotherapy. The study, published in the New England Journal of Medicine, showed that 80 percent of patients using Keytruda were alive six months after treatment. For chemotherapy, it was 72 percent.

Former President Jimmy Carter, who had been diagnosed with melanoma that spread to his brain, was treated with Keytruda, which helped his body seek out and destroy cancer cells.

"Our immune systems are quite adept at fighting cancer cells and eradicating them," said Dr. Vamsidhar Velcheti, an oncologist specializing in lung cancer at the Cleveland Clinic.

The field of immunoncology itself is not new. But recent advances have prompted more interest. Last year, several cancer groups organized the first International Cancer Immunotherapy Conference. In September, the second annual event in New York drew 1,500 people.

"What lung cancer has done is it's taken a small stage to Broadway," Kim said.

Despite initial excitement, immunotherapy doesn't work for everyone.

"The vast majority of patients do not respond to these drugs," Velcheti said.

The response rate is at about 15 to 20 percent, doctors said. Patients with previous immune disorders, such as lupus, may not be eligible to take the drugs.

In August, in an industry surprise, patients with advanced lung cancer in a clinical trial given Opdivo as a first treatment did not see a slowed progression.

But doctors like Velcheti say they are encouraged.

"There have been incredible advances really in the last two years," Velcheti said.

King added that the field is developing so rapidly that the Lung Cancer Alliance has updated its immunotherapy brochures every six months.

Two years ago, when Long's doctor told her about immunotherapy, she couldn't find much information online. During chemotherapy, a tumor in her armpit had grown from the size of a pea to the size of a tangerine.

"I had cancer spots growing that we could actually feel," she said. "So we knew it was failing."

She then began treatment with Opdivo at Fort Wayne Medical Oncology and Hematology every other week, she said.

"We were noticing it was shrinking," she said of the tumor. "To watch the immunotherapy just grab hold like that and go was really encouraging for all of us."

Doctors say the side effects of immunotherapy drugs, including fever, rash, fatigue, diarrhea and possible inflammation of the bowel, lung or liver, are more manageable than those of chemotherapy or radiation.

"Now you're getting a single drug that's going to have less side effects overall than a two-drug chemotherapy regimen," Kim said.

More questions about immunotherapy drugs lie ahead.

"How do we use them best, in what combination and what's really going to get the response rates way up?" King said.

"Always have hope," said Fox, who is preparing for her choir's December concert. "There's always things out there that will surprise you."

Chicago Tribune

Alison Bowen, Chicago Tribune,

2 November 2016

 

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Anonymous's picture
Anonymous
Replies 3
Last reply 11/2/2016 - 3:53am
Replies by: Anonymous

I am 41,fair have had many sunburns over the years and my grandmother also was ex's at some point in her life. I know I'm probably over reacting but I saw a friend of mine that is a nurse at a Dermatologist office and after talking awhile she asked me if I had what I think is an age spot on my face checked. When I told her no it an age spot she said she would call me later with an appt. I have had this mark for about a year but recently the top part has gotten darker. Is it something to get checked I have no insurance and I just don't want to waste money on an age spot

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Anonymous's picture
Anonymous
Replies 19
Last reply 11/1/2016 - 11:49pm

Hi everyone-  I want to apologize for my previous post. I replied on it too but wanted to make a new post in case people don't go back that far.  Thank you for your posts particularly Ed, momof4boys, starts, debwray, snow white, bubbles...I took them to heart. 

I really need this online community.  Maybe I needed my little meltdown, too.  Thank you for reaching out to me and supporting me through it.  I have gotten so much and learned really everything I know about melanoma from the resources provided here.  You are all remarkable people. 

We are strangers walking along the same path, sharing our experiences, bumping into each other at times, pulling each other up when we fall.  Thanks for not leaving me laying there amongst the autumn leaves.

Much love and gratitude

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bleakstrom's picture
Replies 3
Last reply 11/1/2016 - 9:23pm
Replies by: Kim K, Anonymous, SOLE

Wondering if anyone else has felt somewhat confused about the prognosis of the node-negative disease, i.e. stage I/II. It seems that many sources and practicioners nowadays give a highly optimistic outlook following a negative sentinel lymph node biopsy (SLNB), speaking of a cured disease or in similar terms. On the other hand, research papers available online indicate rather notable recurrence rates for node-negative patients--in the ballpark of, say, 15%.

Of course, patient databases used to estimate 10-15 year recurrence/survival rates automatically span a few decades back. The SLNB method has been routinely adopted starting mid-90s to my understanding. Since then, SLNB has been carried out apparently with varying protocols regarding the use of radioactive tracing, no. of sections taken from biopsied nodes, and the use of immunohistochemical staining to detect melanoma cells.

I would assume that a state-of-the-art SLNB today would encompass all of the above mentioned steps, where the entire biopsied nodes would be sectioned for immunohistochemical staining. Thus, I would further speculate that the procedures are on average more accurate today than over the course of the past few decades, leading to a lesser amount of false-negative findings.

Has anyone come across any educated guesses as to what the impact of this should be on the historical-based recurrence/survival rates? Or has anyone had their excellent prognosis explained to them, perhaps, citing these kinds of factors?

 

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 11/1/2016 - 6:16pm
Replies by: landlover, slouttit

I am stage IIIa.  I was diagnosed in January 2016 with a 1.5mm melamona on my left ear, no ulceration, 4/sq mm mitotic rate.  I had surgery March 22, 2016 to excise the melamona and complete a SLNB.  2 of the 7 nodes were positive for micrometastatsis melanoma.   I then had a paratidectomy and CNLD on the left side of my neck.  All 54 lymph nodes were negative.  Recent CT scans and Pet Scans were negative.  

Since the CNLD in May,  I still cannot raise my left arm above 90 degrees to the side.  I'm doing daily stretching and exercises but haven't seen a lot of progress.   In addition, my smiile is lobsided as my left lower lip is impaired.  However, this seems to be getting better.

Does anyone have advice for these symptoms? 

My surgeon said the nerves were spared during surgery but were stretched and this weakness in normal.  However he didn't give me a recovery time.

As for next steps, I'm waiting to hear whether I'm eligible for a clinical trial comparing Keytruda to High Dose Interferon.  If I don't do the trial my options are high dose intereferon or watch and wait.  Ipi is not approved in Canada for stage III.

Any thoughts on next steps?

 

Thanks,
​Stacie

 

 

 

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Anonymous's picture
Replies 1
Last reply 11/1/2016 - 5:54pm
Replies by: jpg

   Go to:  www. shadeitgreen.org

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youngann's picture
Replies 9
Last reply 11/1/2016 - 5:16pm

I'll be having my 4th Ipi infusion this coming Wednesday and, today, I had my second set of CT scans. I'll be seing my oncologist on 11/17 so probably won't know the results until then.

Fingers, toes and everything else crossed in the hopes of good clear scans.

Ann

 

http://www.cafepress.com/daybreakdesigns

Home of the original "Crappy Shirt"

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miaka618's picture
Replies 2
Last reply 11/1/2016 - 8:04am
Replies by: miaka618, youngann

I posted a while ago about insurance problems with my adjuvant treatment. I am happy to report that everything has been resolved and I no longer owe a quarter of a million dollars. :-D 

My aunt did get a second opinion on her moles and everything came back negative on that. 

Even though I only had one dose of ipi, I did develop issues with my pituitary gland approximately a month and a half after the treatment, so now that insurance is back in order, my treatment is still on hold to see if my pituitary will bounce back. Oh well. The wait continues. I get to have another scan soon so let's hope it comes back clear! 

I'm glad I found you guys. This site is a treasure trove of life experiences, and I may have been more worried about the headaches I was having if I hadn't read about so many other people experiencing the same thing with the ipi side effects on the pituitary. I wanted to say thank you to that. On that note, I may have to find a different local oncologist. She didn't believe me when I told her it might be my pituitary gland when I came in for the headaches. She didn't even do any blood tests to check hormone levels. She scheduled an MRI for 3 weeks later, and only after I was urged to go to the ER for the MRI by my specialist out in Madison did I finally get some relief. I'm telling you, those headaches were no joke. There was no way I could wait another 3 weeks. I'm feeling pretty good right now. Tomorrow I get to go for a drive to see how my hormones doing. I'm glad the weather is still nice. :-)

April 

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bruski1959's picture
Replies 7
Last reply 11/1/2016 - 12:50am

Jackie had her 1st two Yervoy dosages on 3 week schedule, but started having intestinal side effects 10 days ago. For the first few days Immodium and clear liquids/bland diet seemed to be tolerable. Then nausea kicked in, and Jackie started dehydrating rapidly. A trip to the ER was necessary to rehdryate Jackie with IV fludis and anti-nausea meds via her port. Also, her potassium level was low, so she had some IV potassium. Got her stabilized and back home 5 hours later. Then she was put on high dose steroids to combat the now more frequent intestinal side effects. Jackie has had trouble resting and has had some confusion too. She was advised to take Benadryl in addition to strong sleep aid to help her rest. The Yervoy intestinal side effects subsided, but the side effects of the steroids have been troubling. Tomorrow at Jackie's oncology appointment we expect the steroids to start to be tapered off.

On another note, a friend of ours daughter has taken two Yervoy doses, and had to discontinue the Yervoy due to the side effects, and has remained on high dose steroids and bland diet. But the Yervoy has stimulated her immune system enough to shrink the melanoma tumors in her liver.

Not sure what the plan is yet, but for now Jackie's 3rd Yervoy dose originally scheduled for March 16th has been postponed. Will see what the oncologist recommends and what Jackie wants to do. She hasn't been herself at all these last 10 days, and I think it would be hard for her to make any decisions tomorrow. I think we will need to let her taper off the steroids a bit, get caught up on some rest, do her weekly blood tests, and take it from there.

We finally got the Explanation of Beneifts for the first Yervoy treatment. The charge was $36,000, the negotiated rate was a little over $22,000. Since Jackie has already met her deductible and 2012 annual maximum out of pocket, our cost was $0!

Appreciate any feedback anybody has on their experiences with Yervoy side effects, steroids side effects, stopping Yervoy treatment after 2 doses, and continuing on with 3rd Yervoy treatment.

These last 10 days have been challenging, to say the least.

Thanks,
Bruce and Jacie

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snow white's picture
Replies 11
Last reply 10/31/2016 - 9:56pm

Hi everyone,

Good news: Dad finally got to come home from the Rehab Hospital on Friday.  He is doing well, walking on his own (slowly) doing small sets of stairs, bathing etc.  Its going to take some time before he gets all of his strength back, but I have faith that he will.  He will be having therapy at home to help with this.

He had all 82 staples taken out of his head on Friday.  On Monday 10/31 he will have a port o cath placed, then on Tuesday 11/1 he has his first dose of NIVO. Finally!!!!  I am hoping that it isn't to much time in between the Gamma Knife and first dose of NIVO for the benefit of the absopal effect. We shall see.

I will update to let you know how the first dose goes.  Fingers and toes crossed that it goes well.

:)

xo

Jennifer

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Anonymous's picture
Anonymous
Replies 3
Last reply 10/31/2016 - 7:23pm
Replies by: Anonymous, Janner, Cathy M

I had a quick question about melanoma.  My husband developed a tiny mark maybe 2-3mm on the bridge of his nose around 2010. It came after a trip to the beach. It is dark brown and looks like a zigzag if that makes sense.  He has been to the dermatologist and they never mentioned it.  I asked him to get the spot removed and he won't.  The spot has not changed or grown since 2010 but just looks weird to me because of the zigzag shape.   If this was something sinister would it have grown or changed  over the last 6 years? Thank you 

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SOLE's picture
Replies 15
Last reply 10/31/2016 - 5:33pm

I am asking for your guidance please.

And also, for all of you who might read this and think: "Sole is so negative man, he just lets melanoma poison his life and he surely wants to die or something", please dont comment. For now.

I just came back from yet another depressing meeting with onco surgeon and hemaro oncologist. Suffice it to say that except pembro in Quebec and the braf and mek inhibitors and maybe two ro three more (less effective?) drugs, there wont be much more medicine available if/when I progress to stage 4.

Apparently, the nivo/ipi combo was just approved by Health Canada yesterday. But it is up to every province to administer their health funds and in Quebec, we will not ever be able to afford such a thing. It is simply too expensive for our society to spend a million bucks on a patient. I'm afraid my sand box has suddenly gotten very small.

So here is my question to you canadian friends (Ed are you there?): adjuvant therapy for stage 3 aside, what is available in your part of the country for stage 4? Do you have access to ipi? We'll have to see which province agrees to reimburse the combo but I am faced, yet again with more difficult choices.

As for my decision about interferon or c'inical trials and therefore CLND, it will depend if my low aggregate patelet condition can get through or not with the two administrators of those trials.

I will find out sometime soon next week I presume

If there is a richer province, I might have to consider moving if I can and leave all behind me if/when I progress.

On the other hand, some of you have survived despite all the new drugs available today. But I feel very helpless at the moment, contemplating the possibility of not being able to possibly survive this.

My apologies to everyone who gets offended by my attitude. It is not my intention. My melanoma picture has just drastically changed.

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 10/31/2016 - 4:43pm
Replies by: Tim--MRF, Anonymous

I have had like a purple like stain under my toe since at least July. I didn't do anything about it because I thought it was a bruise from too tight shoes.  But when it didn't go away I googled it. 

I am worried about amelanotic melanoma. I went to the doctor asap. But it has taken 15 days just to get to the point of scheduling a biopsy.   The derm bearly looked at it and wanted a biospy.  It really isn't brown or black but more like purple / red. 

It is about 6mm at its longest point. It is shaped like a triangle but not 100% asymetrical... but about 90% asymentrical.  I don't think it has moved or changed at all in the 6 month period.  It does not look like it has grown with the nail but I admit I haven't been looking.  I have been taking photos since I discovred it and I can't see anything changing.

I am having a hard time with the doctors. I can't seem to get them to give me an appointment that is reasonable. My derm said I shouldn't have the biopsy any later than this Wednesday but they want to do it the third week of November. 

My derm is kind of siding with them. But I feel like that is a month and a half and I honestly have no idea when this started. I just wans't paying attention in the winter to my feet. 

Anyone know how long it takes for melenoma to spread? What would be considered getting it early? I have no pain or itchiness. Nail is in good shape.  My best guess is that this is related to this winter when I started wearing shoes that were too large and my foot kept sliding around possibly banging on the toe. 

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