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.

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adriana cooper's picture
Replies 7
Last reply 11/14/2016 - 3:30pm

 After discussion with and upon the advice of the neuro-oncologist (whom was in consultation and in agreement with her melanoma oncologist, as we understood to be at the time) and consultation with the neuro-surgon, Adriana had an ommaya placed with the plan to start intrathecal Depocyt treatments every two weeks. We briefly discussed with him the IT IL-2 going on in TX which he described as being experimental or in trial, which I found to be uninformed. I also brought up the subject of melanoma being different than other cancers and not being particularly chemo-sensitive and discussed Depocyt along with the other it-chemo options. I also inquired if he had followed this plan with other melanoma patients, he said he had and I did not press further. In hindsight I wish I had inquired about how many patients, how long ago and their specific outcomes. I found my self too trusting in the light of his expertise (or intimidated by it.) Adriana's oncologist office actually called to make an appointment with her to discuss her situation but it was for the afternoon on the day of surgery and he opted to defer to the following week so that she would not be under the influence of anesthesia and was fully aware of the discussion. Again in hindsight I still don't understand why the melanoma onologist didn't cancel the surgical plans until after he had the opportunity to talk to us. (During our most recent appointment the melanoma oncologist said, as I understood,  that the neuro-oncologist likely doesn't know a whole lot about melanoma as he likely doesn't see that many melanoma patients.)

On September 27 Adriana had her ommaya placed without particular incident and recovered over the next few days although she continued to have substantial facial and sciatic pain as she has had for some time. On September 30 Adriana had her first Depocyt treatment. This day was also the first time ever that I had to use the wheelchair to get her into and out of the hospital due to the continued pain she was in, heartbreaking for me and frustrating for us both. Her pain meds were increased and the treatment was administered without incidence although I must say it is slightly disturbing seeing fluid being sucked out and put in through the top of your loved ones head. Although side effects of chemical meningitis were described no instructions as to when to call in or take action were given. By late that night neck pain and headache had set in along with her other pain, and fevers starting by noon of October 1. That evening the neck pain was severe and temperature close to 102 much of the time. We increased her Dex at the recommendation of the on call/nurse/neurology resident (middle of the night on a weekend of course) and advised to go to ER if temp stayed above 102. Pain and continued fevers through October 2 and most of October 3. The fevers finally subsided during that night.

On October 4 while still in considerable pain (again in the wheelchair) we visited the oncologist who advised Adriana to cancel further Depocyt treatments as it is “ineffective for melanoma” and will only cause further discomfort and that we will now be focusing on quality of life treatments as there is no cure for LMD. Essentially she had the surgery and treatment for no reason :>(( He confirmed that our research of prognosis of 4-6 weeks un-treated and 6-8 months for treated patients was in fact correct. He also theorized that Adriana has likely had leptomeningeal disease since February 2015 but mis-diagnosed as the symptoms were mistaken to be unusually severe side effects of ipilimumab and masked by the steroids and BRAFi she was switched to at the time. He advised that she see her family (which was already planned) and get affairs in order – the end of life discussion. Although he mentioned hospice he referred us for an appointment with palliative care. He restarted her on Taf/Mek combo and continued Dex to control fevers (a side effect for her during her previous course of Taf/Mek) in hopes of some improvement. If improvement is seen then possible return to Pembro in order to conserve BRAFi for extended use. In my hope for some optimism and in the light that she has had LMD since 2/2015 why not repeat the sequence (or some combination) of BRAFi—Gamma Knife as needed—Pembro-- that has gotten her this far.

Within 5 days of starting Taf/Mek + Dex all of Adriana's pain was gone including neck-head-face and the horrible sciatic pain (lastly diagnosed via MRI as Tarlov cysts) that has plagued her for months. Although she has double vision (hope to see a neuro-opthomologist for some help soon, sooo many specialists) and continued facial palsy on the right and more recently facial muscle atrophy on the right. Our 10 day trip to Ohio to see her family and explain the circumstances went well and was actually relaxing for her. We are now planning a late December commitment ceremony with our family as we find that we can not get married without risking her health insurance, even though my income is very small. I actually asked her to marry me almost 10 years ago and this is long overdue and not something I want to let go undone.

This week's visit with the oncologist felt more down and less optimistic?? on his part. We came to the realization just how rare this is as she is the only melanoma LMD patient at SCCA. Adriana is doing well and he started her to taper her off of Dex over the next month in hopes of replacing Taf/Mek with Pembro. He does not subscribe to use of immunotherapy while on steroids as he feels they counteract each other. I hope to persuade him otherwise, if necessary, with some of the evidence Celeste has provided here in the past.

 

Although IT-IL2 in TX is not currently an option I theorize with the success of systemic Pembro/Nivo and the increase in incidence of LMD due to longer survivals that the newer immunotherapies will be used intertheacally in the future. Although I am uneducated in any of this it would seem to be a natural evolution.

 

Although things seem dire and the situation some times takes over our emotions, we continue to try and live our lives and get things in order. We strive to have as many experiences, love each other and our families and create as many memories as possible.

Please ask questions of your providers, don't be afraid to offend them, slow things down if you need to. 

Thanks for reading. I hope something here may be of use to someone in the future.

 

Andrew1725, I hope you are doing well.

 

Best wishes to you all.

Feel free to email harborhits@gmail.com

Rob

Adriana

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Jubes's picture
Replies 10
Last reply 11/5/2016 - 10:46am

Powerful drugs that enlist the immune system to fight cancer can, in rare cases, cause heart damage, doctors are reporting.

So far, fewer than 1 percent of patients taking these medicines — called checkpoint inhibitors — have developed heart trouble. But in those who do, the damage can be severe, and the drugs have led to several deaths by provoking the immune system to attack the heart. The risk appears highest when patients take two different checkpoint inhibitors at once.
“This is a new complication of potentially lifesaving drugs,” said Dr. Javid J. Moslehi, the director of cardio-oncology at Vanderbilt School of Medicine and the senior author of an article published Wednesday in The New England Journal of Medicine. “We’re working to develop treatments for it. Our job is not to say the drugs are bad, but to say, ‘How can we deal with it?’”
The drugs, a form of immunotherapy, are considered a huge breakthrough in cancer treatment. Although they do not work for everyone, they have resulted in lasting remissions for many, including people who were expected to die from advanced cancer that had resisted every other treatment.
Checkpoint inhibitors have been approved to treat six types of cancer, and are being used for many other types. The drugs are also being combined with one another for added effectiveness.
The heart findings should not scare patients away from the drugs, Dr. Moslehi said. He called them “transformative” in cancer treatment and said they offered a “potential for cure.”
Four checkpoint inhibitors are on the market: ipilimumab (brand name Yervoy), nivolumab (Opdivo), pembrolizumab (Keytruda) and atezolizumab (Tecentriq).
The side effect has prompted some hospitals to add extra cardiac testing for patients taking more than one checkpoint drug, in the hope of catching problems early enough to prevent permanent heart damage. If the tests find signs of trouble, steroids and other drugs may stop the assault by the immune system.
↗️ Cell Wars
“This is something oncologists should be aware of,” said Dr. Jedd D. Wolchok, chief of melanoma and immunotherapeutics services at Memorial Sloan Kettering Cancer Center in New York, who was not an author of the journal article. “It’s rare, but the fact that people have died from it is a reason for us to try to spare them that toxicity.”
Dr. Wolchok said the problem had occurred in one patient at Sloan Kettering but had cleared up on its own. He agreed that it was advisable to order extra heart tests for patients taking checkpoint combinations.
Dr. Benjamin A. Olenchock, a study author from the Division of Cardiovascular Medicine at Brigham and Women’s Hospital in Boston, was not available for an interview but said in a written statement that the heart problem had affected patients at his hospital. “As the number of patients treated with checkpoint inhibitors has markedly increased, rare cases of cardiac toxicity associated with the use of these cancer therapeutics, sometimes resulting in death, have been seen at multiple institutions including our own,” the statement said.
The first checkpoint inhibitor was approved in 2011. The drugs work by unleashing T-cells, a type of white blood cell, to kill cancer. But sometimes, the T-cells go into hyperdrive and attack healthy tissue. Doctors have known for years that the drugs can have dangerous side effects, including gut, lung and thyroid trouble. But the cardiac problems have taken longer to emerge.
There have been scattered reports in other, less prominent medical journals of heart problems, some fatal, in small numbers of patients taking checkpoint inhibitors alone or in combination. The new report is the most in-depth analysis, including tests for possible genetic or viral causes (none were found) and an examination of a drug-company database to identify other cases.
The patients described in Dr. Moslehi’s article — a woman, 65, and a man, 63 — developed heart problems and died a few weeks after just one intravenous treatment with a combination of two checkpoint inhibitors: Opdivo and Yervoy. Both patients had advanced melanoma, a deadly skin cancer, and were enrolled in studies. Neither had a history of heart disease.
The woman had chest pains, shortness of breath and fatigue, and was admitted to the hospital 12 days after her first dose of the drugs. She had myocarditis — inflammation of the heart — as well as other inflamed muscles and abnormal heart rhythms.
Hoping to quell the inflammation, doctors gave her steroids, but her heart kept deteriorating.
The man had similar symptoms, and based on their experience with the woman, the Vanderbilt doctors treated him with even higher doses of steroids, as well as another drug. He survived only a few days longer than the woman did, Dr. Moslehi said.
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Autopsies found that the patients’ immune systems had attacked their hearts, rejecting them as if they were transplants.
Using data from Bristol-Myers Squibb on 20,594 patients who took the checkpoint inhibitors it makes, Yervoy and Opdivo, the Vanderbilt team found that doctors had reported 18 cases of myocarditis related to the drugs. Six were fatal. The condition was most common and severe in patients who took the combination, affecting 0.27 percent and accounting for five of the six deaths.
Dr. Michael B. Atkins, the deputy director of the Georgetown Lombardi Comprehensive Cancer Center in Washington, called the rapid onset of heart problems “alarming.” He said the cases had led experts in cancer and myocarditis to meet in September with Bristol-Myers Squibb executives. The group agreed that extra heart tests should be included for patients taking combined checkpoint drugs in studies. The tests include echocardiograms and blood tests for troponin, a protein released by damaged heart muscle.
The same tests could be done for patients receiving the combined drugs outside of studies, Dr. Atkins said, but he added, “I am unaware of any formal recommendation.”
Checkpoint inhibitors “are lifesaving therapies for many patients, at least for melanoma,” Dr. Atkins said. “Around 60 percent of patients have tumor responses to the combination, and the majority of those appear to be long-lasting responses.”
Before the drugs were available, the median survival time for those with advanced melanoma was six to nine months, and only 10 percent lived two years, he said.
“We want to do everything we can to make sure these treatments are safe,” he added.
Dr. Atkins said he thought it would be possible to save patients who developed heart problems by intervening early with powerful drugs to shut down the inflammation. That approach reversed myocarditis in a patient at another hospital in Washington, he said.
But drugs that stop inflammation work by turning off the immune response, so they may cancel out any benefit from the checkpoint inhibitors. That would leave patients where they started, at the mercy of their cancer, he said.
So far, there is no way to predict which patients might be vulnerable to heart problems from the checkpoint drugs. For now, Dr. Moslehi said, the best solution is close monitoring for those taking more than one at a time.
G

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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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