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 11/4/2016 - 3:53am
Replies by: Scooby123, MoiraM, Polymath

Hi All hope you all doing has good as can be.

i had appointment today 3 weeks prior last appointment which should have been to re book my head and body scan in. I was told they want to scan me in 6 months not 3 months due to I have been stable on ippi for a year if you can say that after having one progress in my brain this March ?. I know most get scanned every 3 months. I did ask why leave me that long. I was told they feel because I have been stable that is why. I have not had treatment since last June 2015 apart from treatment for the brain. Plus do have o say she said we could scan you every 3 months then on 4 month some thing happens.

i have 2 questions if anyone can help first one is how long has anyone been stable and how often they get scanned.

if you are stage 4 do you get your moles still checked , I was told off my consultant he is more concerned what's going on inside my body than out, but if you had any more melanomas on skin surely you have them off or does treatment treat on surface of skin too. 

Sorry for going on but was just on my mind.

scooby 

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youngann's picture
Replies 5
Last reply 11/6/2016 - 3:46am

While I was having my 4th Ipi infusion yesterday, my husband went down to pick up the CD and radiologist report from Monday's CT scans. In June, my PET/CT was perfectly normal so everything except the right axilliary is new.

Right Axilliary: soft tissue thickening is more pronounced than in previous scan. Possible scarring or post surgical change but could be infectious, inflammatory or neoplastic.

Right Breast: soft tissue thickening 1cm. Could be infectious, inflammatory or neoplastic.

Right Thyroid Lobe: 0.8cm x 0.4cm focus of low density.

Left Lung: 2 pulmonary nodules, 2mm & 4mm

Right Lung: 3 pulmonary nodules, 2mm, 2mm & 3mm

I have a call in to my oncologist to discuss these findings and find out if further tests should be done before I see her on 11/17.

Yikes!

Ann

 

 

http://www.cafepress.com/daybreakdesigns

Home of the original "Crappy Shirt"

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Anonymous's picture
Anonymous
Replies 10
Last reply 11/3/2016 - 8:28pm
Replies by: Bubbles, Jubes, Anonymous, Randy437, cancersnewnormal

Ok well I listened to y'all!

since my pet and ct showed growth ( from 11mm to 18 mm)and more uptake ( from SUV 3.2 to 7.4) in the last 6 months , I have been to a top surgeon who does the robotic surgery and am booked in for resection of lower right lung lobe next Tuesday. This spot in my lung is the only met that shows up. The surgeon says he needs to take out the whole lobe as the original tumour was so large that what's left beside the current tumour is mainly scar tissue. My oncologists were hesitant as they thought it could be pseudo progression. But doesn't that normally happen in the beginning of infusions. I stopped infusions over a year ago. 

So I am interested in three things

1 am I making the right decision

2 how will the resection affect my quality of life

4 how is recovery and can I fly two long haul flights( 14 hours + 10 hours)  to visit my grandsons for Xmas in New York 5 weeks after surgery. Keep in mind my insurance does not cover me for this pre existing condition. The surgeon says to go. But I'm sure that depends how the op goes. He is 90% sure he can get it with keyhole surgery but if the nodes that tether the lower lobe to the media Steinem are scarred from their previous mets they will be tough as leather and he will have to do the more invasive procedure. 

Does your chest feel empty?

i guess the alternative is wait and see or else try pembro again but docs do not want a recurrence of my auto immune side effects  

Thanks for any thoughts. 

Anne-Louise 

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Anonymous's picture
Replies 5
Last reply 11/4/2016 - 9:26am

Hello all - full node discection last week - 4 nodes malignant of 46 - Love Moffitt! - Radiation then 3 options... 1.  Interfuron 

2. Pilimumab

3. Trial - Keytruda - which right now, i'm leaning toward.

Thanks for any opinions, input.

 

Todd Guzy

 

Todd Guzy

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kensmom's picture
Replies 14
Last reply 11/3/2016 - 12:11pm

Hi my son has been diagnosed as Stage 3b (T3b N1a).  The Drs are recommending clnd and treatment with either ipi or Keytruda.  Advice or thoughts, please.

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Anonymous's picture
Anonymous
Replies 6
Last reply 11/4/2016 - 6:31pm
Replies by: Anonymous, youngann, Janner

Bit gross guys I apoligise but my question is ive had a mole for a good while now looks circular some ways but looks like at the top right some of it has faded away making it something like a letter b if you know what I mean. Its bright brown and on the palm of my hand, no pain, itchyness or anything and its smooth like the rest of my hand..

Heres pic here if this is any

[URL=http://s61.photobucket.com/user/gazmayo/media/Mobile%20Uploads/Screensho...

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CindyCo's picture
Replies 4
Last reply 11/3/2016 - 4:12pm
Replies by: Hukill, jennunicorn, CindyCo

Since her first infusion of ipi/nivo (and a quick trip to the ER for a urinary track infection), my mom has had nausea, indigestion, and bad fatigue (for the last few days she has slept the entire day, only waking up to eat).  She has an extremely painful stage III hemorrhoid.  Appetite is not good and everything tastes too sweet or salty even when it is bland, but she forces herself to eat when she can.  For most of last month we had been eating a vegetable-heavy diet with no meat, carbs, or dairy.  However, with the weather changes and loss of appetite she has been eating more normal foods--but even then she has no appetite.  We still don't have red meat or dairy, but we now have chicken, fish, and whole grains in her diet.  We use cannabinoid oils during the day to treat the pain, and a heavier Rick Simpson oil to help her sleep at night.  The Rick Simpson oil has been pretty good and she now sleeps 6-7 hours through the night without waking up.  She used to wake up every couple of hours from pain. 

Currently, the majority of her pain comes from the hemorrhoid.  We are trying to treat her hemorrhoid with some natural remedies (sitz baths, cold compress, aloe vera), but not much seems to work, which makes us think it might be caused or aggravated by the primary anal melanoma mass, which is in the same area. 

Not feeling well has made her very fearful, especially since we have no way of knowing whether the disease is progressing or if treatment is working during the treatment period.  We are trying to keep her positive, but it's tough when she feels physically unwell all of the time. 

Second dose of ipi/nivo coming up on November 17.  No scans until after all four doses, so mid-January?

On the insurance side, we are switching providers during open enrollment at her work as of January so that we are no longer tied to Kaiser.  We are planning to go to Dr. Ribas at UCLA or Dr. Hamid at the Angeles Clinic.  Her oncologist at Kaiser has not seen her since September and we really feel that he is not taking her case seriously, so we will be glad to find a doctor who has more of a sense of urgency about her situation.

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Anonymous's picture
Anonymous
Replies 5
Last reply 11/2/2016 - 10:25pm
Replies by: stars, Janner, Anonymous, debwray

Hi

Yesterday my Dermatologist told me that I have a 3rd primary melanoma on my back.  My first was in 1997 (Clark II Breslow .75), the 2nd was in 1999 melanoma "insitu"  on shoulder. Then 17 years of no problems. Now I have a 3rd primary. I haven't seen the lab report but the Breslow is .55. This one is on my back. I will be scheduling the third WLE today.  The Dr said this being a third primary is somewhat unusual. That made me wonder if there is any specific type of testing that can be done.  ie genetic?   How unusual is 3 seperate primaries? Should I ask for a PET Scan?

Thanks

 

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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 - 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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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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dmturner's picture
Replies 4
Last reply 11/2/2016 - 12:19pm
Replies by: dmturner, debwray, laulamb

Home from hospital had 2 satellite spots positive for melanamo today.  Back of my heel, original source bottome of heel.  I also, had skin graft taking in right groin area same place as SLNB, doc also took one swollen lymph node from same spot.  I am just wondering if the node was only swollen cause my original was healing via secondary healing.  (No skin graft just open would).

I have to keep the bandage on till Monday.  I guess that is when I will get results from lymph node.

Had to postpone last Yervoy treatment.  Did it even work???

Anyone else had satellite tumors close to orginal?

 

-Donna

diagnosed in June, 3a

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SOLE's picture
Replies 24
Last reply 11/3/2016 - 1:37pm
Replies by: SOLE, cancersnewnormal, Polymath, Anonymous, KDub, Bubbles, landlover

This may be yet another topic that has been discussed but I sort of found out a real inspirational survivor story tonight. Some of you may already have seen and read it but this came at the right moment for me it seems.

https://tedhowardnz.wordpress.com/about/

Have a listen at his TedTalk (audio and pdf follow up). This guy has something to deliver. And it comes from a scientific and analytic mind.

Tell me what you think

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Anonymous's picture
Anonymous
Replies 7
Last reply 11/4/2016 - 10:22am
Replies by: cancersnewnormal, Hukill, Anonymous

Hello,

This is my first time posting and I'm hoping to get some advice on my most recent diagnosis. 

I have just been diagnosed with my 6th Melanoma. My first one 15 years ago was quite deep (3+mm) but with no spread. The second was 1.2mm and 3rd in-situ (2011), then 3 this year have been in-situ. I understand the recommended excision margins for in-situ are 5mm, but I've opted out of this for the most recent two (biopsies had a small 1-2mm clearance). This is against the Drs recommendation, although he has told me that in-situ can not become invasive and at worst, there is the chance of local recurrance, in which case I would opt for an excision. I'm 38 years old and he's never come across anyone my age that hasn't had those extra margins cleared (he's had older patients opt out).

My reasoning behind not going ahead with the further excision is because of my emotional/mental wellbeing — I just don't feel I can be cut into again this year! (3 biopsies + 1 wider excision). That may sound silly (as I know there are people going through much worse than this) or even reckless, but for some reason it's hit me really hard and I've been suffering with panic attacks and anxiety because of it.

I guess my question is — am I being completely reckless not having this done? Is there anybody out there, or any statistics that back this up, whether in-situ can become invasive. I feel there is so much conflicting information out there, and at the same time no answers to this subject, and Melanoma as a whole... it's frustrating and scary. 

I hope someone can offer some advice here. 

Thank you.

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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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