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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Lori C's picture
Replies 9
Last reply 8/21/2010 - 9:12am

In 9 days Will has his scan after two rounds of chemo.  He's feeling well at the moment - the pain meds have really made a difference and today he was doing just great.  He's continuing physical therapy and eating well.  We went out for coffee and he had two donuts so I was happy.

His visible skin lesions have all seemed to reduce, some pretty well, in size.  However, I'm getting almost paralyzed with fear anticipating the scans.  His sister is warning me to get hospice lined up (I do have info on that if he needs it but they can't do anything unless he stops treatment, according to the guidelines we were told).  

I'm trying to be optimistic but realistic.  On July 9, we were told his liver was badly compromised by the melanoma and it was acting aggressively based on comparisons with a scan done four weeks earlier.  It is unreasonable to think that if the cancer in his liver was still as aggressive he'd be at least a bit sicker than he was at that point by now?  Or am I engaging in wishful thinking?  He's less ill, from what I can tell, than he was six weeks ago, not more.  He even went into Chicago to visit someone on Monday using the train.

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Meg1414's picture
Replies 8
Last reply 8/27/2010 - 7:33pm

Hi! I just discovered this site today and am excited to find a place where so many people have had similar experiences. But I was hoping that someone could help me out with this - 8 years ago I was on interferon. I did the whole 20 doses and then 11 months on my own routine. But now, I'm thinking about trying to have a baby and can't find any statistics or anything. I don't have an oncologist anymore. (He retired a couple years ago and I just see a dermatologist now.) Has anyone on here gotten pregnant after interferon, or know any information? I don't want to go to a fertility specialist until I've tried for a while, but was hoping someone out there had some good (or bad, I guess) news. :) Wishing you all the best!

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/19/2010 - 9:59pm

Anyone know how bone mets are detected??? Is there a scan for bone mets??? Which scans can pick up bone mets (ie:PET?CT?)

Thanks for taking the time to reply to my post.

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himynameiskevin's picture
Replies 21
Last reply 8/20/2010 - 11:08pm

Hi. This is my first time posting. I am a 26 year old male living in San Diego. 3 years ago I had melanoma removed my back and was told all went successful. Got regular checkups and was told I am clear. This summer I developed a few cysts on my back in the same area. My Dermatologist did a biopsy and just over 3 weeks ago he told me my melanoma had metastisized. Stage IV. Long story short, my PET scan showed a tumor on my chest and back just under my skin, a tumor in my liver and a couple in my lungs. I had an MRI this morning and will get the results friday. My oncologist suggests I do chemotheropy followed by Ipilimumab. He also told me the grim outlook in all this, with not much hope. Gave me my sentence. I know the statistics and I accept that but I feel as long as I'm alive, breathing, and feeling ok, then anything is possible. And I want my doctors to feel the same. I know they have to look at statistics and such but with every person being so different, I don't see why they can't mention a possible positive outcome. Their outlooks are really affecting my outlook. My whole life I've had a positive, determined, and smart attitude towards any bad situation I've faced. But now, with the constant unfortunate news I keep getting, I find myself more and more worried.

So what I am seeking in this post, is anyone, who has experienced or heard of someone getting though an advanced stage melanoma. Please tell me your story. It's those stories that make me feel my best. They let me know that even if the odds are against me, I have a fighting chance.

Thank you.

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Combined BRAF-Targeted and Immunotherapy Shows Promise for Melanoma Treatment

ScienceDaily (June 15, 2010) — Combined targeted therapy against the BRAF/MAPK pathway with immunotherapy shows promise as a new therapeutic approach for the treatment of melanoma, according to results of a preclinical study published in Cancer Research, a journal of the American Association for Cancer Research. 

"Our results provide preclinical evidence for the rational combination of BRAF-targeted therapy and immunotherapy in the treatment of this most dangerous type of skin cancer," said lead researcher Jennifer A. Wargo, M.D., division of surgical oncology at Massachusetts General Hospital, Boston.

"By blocking the oncogenic BRAF, tumor antigen expression may be restored. This would make the melanoma tumors susceptible to strategies incorporating immunotherapy," she said.

Previous studies have shown that melanoma treatment with selective BRAF inhibitors are very effective and result in a high initial response rate, but the response is temporary. An alternative approach would be to combine other agents and extend the duration of treatment response.

Using biopsies of melanoma tumors, the researchers investigated the effects of mitogen-activated protein kinase (MAPK) pathway inhibition vs. selective inhibition of BRAF-V600E on T-cell function.

Inhibition of the MAPK pathway with a specific inhibitor of BRAF-V600E resulted in increased expression of antigens, which was associated with improved recognition by antigen-specific T-cell. T-cell function was not compromised after treatment with BRAF-V600E.

Mario Colombo, Ph.D., director of molecular immunology at the Italian National Cancer Institute and senior editor for Cancer Research, said these results advance cancer research by offering new arguments to sustain the combination of selective targeted therapy with immunotherapy.

"This study shows the need for considering the effect of off-targeted drug therapy on the many aspects of host immune response to make real the combination of chemo- and immunotherapy," Colombo said. "It also prompts the idea of performing vaccination in the attempt to eradicate the disease and prevent recurrence."

Several clinical trials are underway using agents that selectively inhibit BRAF-V600E in patients with metastatic melanoma. These studies have shown impressive response rates, though durability of response remains an issue, according to Wargo.

Results of this study provide a basis for combining this type of therapy with immunotherapy, with the goal of improving durability of responses.

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The above story is reprinted (with editorial adaptations by ScienceDaily staff) from materials provided by American Association for Cancer Research.

 

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New Treatment Method Safe, Effective for Advanced Melanoma Patients, Study Suggests

ScienceDaily (June 7, 2010) — Patients undergoing treatment for melanoma that has spread to the liver may respond well to chemotherapy delivered directly into the liver's blood vessels, according to a study sponsored by the National Cancer Institute and Delcath Systems Inc., and led by James F. Pingpank, M.D., associate professor of surgery, University of Pittsburgh School of Medicine, and surgical oncologist with UPMC Cancer Centers. 

The results were presented in an oral presentation on June 5 in Chicago at the 46th annual meeting of the American Society of Clinical Oncology (ASCO).

"Once melanoma spreads to the liver, a patient's life expectancy typically ranges from six to nine months," said Dr. Pingpank. "We hoped this study would not only show an increase in progression-free survival rates for these patients, but also lead to a standard of care for the disease."

The phase III trial enrolled 93 patients from 10 different sites across the country between February 2006 and October 2009. Its primary goal was to double the length of hepatic progression-free survival for patients with melanoma that had spread to the liver. Patients received either percutaneous hepatic perfusion (PHP) with the drug melphalan, meaning the chemotherapy was delivered directly into the blood vessels of the liver, or the treatment considered the best alternative regimen by their treating physician. If a patient not receiving PHP had disease progression, he or she could cross over to the PHP arm of the trial.

"Not only did we achieve our goal, we surpassed it," said Dr. Pingpank. "This is particularly exciting because so far oncologists haven't been able to recommend a standard of care for patients with melanoma that has spread to the liver. PHP appears to control tumors in the liver and extend life expectancy for these patients, whether their melanoma began as skin cancer or as ocular melanoma, a less common form of the disease that starts in the eye. Fifty percent of ocular melanoma patients will experience liver metastasis, so these findings are crucial for them."

Melanoma is a rare form of cancer, but it causes the majority of skin cancer-related deaths. Each year, approximately 160,000 new cases are diagnosed worldwide. Ocular melanoma will be diagnosed in approximately 2,500 adults this year.

Other sites involved in the study include the Surgery Branch of the NCI, Bethesda, Md.; John Wayne Cancer Institute, Santa Monica, Calif.; H.Lee Moffitt Cancer Center, Tampa, Fla.; University School of Maryland Medicine, Baltimore; The University of Texas M.D. Anderson Cancer Center, Houston; Atlantic Melanoma Center, Morristown, N.J.; Rad Imaging Associates, Englewood, Colo.; Albany Medical Center Hospital, Albany, N.Y.; and St. Luke's Hospital and Health Network in Bethlehem, Pa.

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From Washington University in St. Louis, MO -- where I was treated for my primary almost two years ago (Siteman Cancer Center, Wash U).... This technology is amazing.   Regards, Hawaii Bob

 

Advance Toward Earlier Detection of Melanoma

 

This skin tumor (top) is shown after treatment with a new contrast agent that can improve the visualization of skin cancer cells (bottom) using an advanced medical imaging device. (Credit: American Chemical Society)

ScienceDaily (Aug. 11, 2010) — Melanoma is one of the less common types of skin cncer but it accounts for the majority of the skin cancer deaths (about 75 percent). 

The five-year survival rate for early stage melanoma is very high (98 percent), but the rate drops precipitously if the cancer is detected late or there is recurrence.

So a great deal rides on the accuracy of the initial surgery, where the goal is to remove as little tissue as possible while obtaining "clean margins" all around the tumor.

So far no imaging technique has been up to the task of defining the melanoma's boundaries accurately enough to guide surgery. Instead surgeons tend to cut well beyond the visible margins of the lesion in order to be certain they remove all the malignant tissue.

Two scientists at Washington University in St. Louis have developed technologies that together promise to solve this difficult problem.

Their solution, described in the July issue of ACS Nano, combines an imaging technique developed by Lihong Wang, PhD, the Gene K. Beare Distinguished Professor of Biomedical Engineering, and a contrast agent developed by Younan Xia, PhD, the James M. McKelvey Professor of Biomedical Engineering.

Together the imaging technique and contrast agent produce images of startling three-dimensional clarity.

Photoacoustic tomography

The imaging technique is based on the photoacoustic effect discovered by Alexander Graham Bell 100 years ago. Bell exploited the effect in what he considered his greatest invention ever, the photophone, which converted sound to light, transmitted the light and then converted it back to sound at the receiver.

(The public preferred the telephone to the photophone, by some facetious accounts because they just didn't believe wireless transmission was really possible.)

In Bell's effect, the absorption of light heats a material slightly, typically by a matter of millikelvins, and the temperature rise causes thermoelastic expansion.

"Much the same thing happens," says Wang "when you heat a balloon and it expands."

If the light is pulsed at the right frequency, the material will expand and contract, generating a sound wave.

"We detect the sound signal outside the tissue, and from there on, it's a mathematical problem," says Wang. "We use a computer to reconstruct an image."

"We're essentially listening to a structure instead of looking at it," says Wang.

"Using pure optical imaging, it is hard to look deep into tissues because light is absorbed and scattered," Wang explains. "The useful photons run out of juice within one millimeter."

Photoacoustic tomography (PAT) can detect deep structures that strongly absorb light because sound scatters much less than light in tissue.

"PAT improves tissue transparency by two to three orders of magnitude," says Wang.

Moreover, it's a lot safer than other means of deep imaging. It uses photons whose energy is only a couple of electron-volts, whereas X-rays have energies in the thousands of electron-volts. Positron emission tomography (PET) also requires high-energy photons, Wang says.

A smart contrast agent

Photoacoustic images of biological tissue can be made without the use of contrast agents, particularly if tissues are pigmented by molecules like hemoglobin or melanin.

Still, photoacoustic images of melanomas are fuzzy and vague around the edges. To improve the contrast between the malignant and normal tissue, Xia loads the malignant tissue with gold.

"Gold is much better at scattering and absorbing light than biological materials," Xia says. "One gold nanocage absorbs as much light as a million melanin molecules," says Xia.

Xia's contrast agent consists of hollow gold cages, so tiny they can only be seen through the color they collectively lend to the liquid in which they float.

By altering the size and geometry of the particles, they can be tuned to absorb or scatter light over a wide range of wavelengths.

In this way the nanoparticles behave quite differently than bulk gold.

For photoacoustic imaging, Xia's team tunes the nanocages to absorb strongly at 780 nanometers, a wavelength that falls within a narrow window of tissue transparency in the near-infrared.

Light in this sweet spot can penetrate as deep as several inches in the body.

Once injected, the gold particles naturally tend to accumulate in tumors because the cells that line a tumor's blood vessels are disorganized and leaky.

But Xia has dramatically increased the uptake rate by decorating the nanoparticles with a hormone that binds to hormone receptors on the melanoma's cells.

The molecule is alpha-melanocyte-stimulating hormone, slightly altered to make it more stable in the body. This hormone normally stimulates the production and release of the brown pigment melanin in the skin and hair.

As is true in many types of cancers, this hormone seems to stimulate the growth of cancerous cells, which produce more hormone receptors than normal cells.

In experiments with mice, melanomas took up four times as many "functionalized" nanocages than nanocages coated with an inert chemical. With the contrast agent, the photoacoustic signal from the melanoma was 36 percent stronger.

But seeing is believing. Subcutaneous mouse melanomas barely visible to the unaided eye show up clearly in the photoacoustic images, their subterranean peninsulas and islands of malignancy starkly revealed.

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amybusby's picture
Replies 12
Last reply 8/21/2010 - 8:20pm

Now that my spinal fluid has been cleared up, my leptominingial mets are getting a bit worse (lining of my brain).  So Dr. Papa thinks I should do a 10 day course of WBR along with Temodar.  I was expecting that would probably be the results / recommendations.  Problem is how much of the T. cost is my insurance going to cover?  Hopefully I'll know tomorrow, but since I needed to start it tonight, we're already behind schedule.  Has anyone had any success with assistance?

I've heard it's not too bad but I'd like any advice / input on the WBR / T. treatment too!

Thanks,

Amy

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amybusby's picture
Replies 1
Last reply 8/18/2010 - 10:34pm
Replies by: Kevin from Atlanta

Now that my spinal fluid has been cleared up, my leptominingial mets are getting a bit worse (lining of my brain).  So Dr. Papa thinks I should do a 10 day course of WBR along with Temodar.  I was expecting that would probably be the results / recommendations.  Problem is how much of the T. cost is my insurance going to cover?  Hopefully I'll know tomorrow, but since I needed to start it tonight, we're already behind schedule.  Has anyone had any success with assistance?

I've heard it's not too bad but I'd like any advice / input on the WBR / T. treatment too!

Thanks,

Amy

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KatyWI's picture
Replies 1
Last reply 8/18/2010 - 9:08pm
Replies by: debbieVA

Is anyone else attending this Proleukin patient summit in San Diego in Septmeber?  My doctor's nurse told me about it.  I agreed to attend and wonder whether I'll meet any of you there.

KatyWI

Just keep going!

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dian in spokane's picture
Replies 10
Last reply 8/20/2010 - 12:26pm

Well, I'm down in California today, and had my 4th injection of my Vaccine. Everything is going really smoothly. I took aleve at the same time I got my shot today and so far it's doing a pretty good job of stopping that BIG headache I usually get. The headache is coming on a little (it's on track timewise) but lacks the strength it has had on previous days.

So..only 4 more shots to go!

I'll be getting scans again toward the end of September, and hopefully I remain NED

Sitting in John Wayne Airport right now, headed to las vegas to join bob for a few days of fun before he starts his annual IRS course. I'll bet if I add it all up at the end of the year, it will turn out that I spent more time on the road than at home this year!

Hope everyone is having a great summer.

dian

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Joyce's picture
Replies 6
Last reply 8/18/2010 - 9:34pm

Dick and I went to his oncologist at Ma General today. As we posted he is 4 years NED from stage 4. For the very first time in the years we have been fighting this beast (2002-stage 4) the doctor was hopeful and excited. He said they are on the verge of so many break thrus. He said the anti-ctla 4 drug Dick had had 4 years ago was unknown back then but has become cutting edge. And Dick was in one of the original trials.  Our original oncologist whom we had seen in Feb 2003 had given us very little hope that Dick would be around in 5 years. There was nothing that really stopped the spread of  melanoma. Well, today the attitude was entirely different. While, there are some people who sadly don't respond to anything, there are a lot more who do respond now. Some are given a little more quality time and others go into remission.

 

Joyce from MA (formerly Dick's wife Dick stage 4)

'

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yensidw's picture
Replies 9
Last reply 8/21/2010 - 2:13pm

My best friend and the love of my life lost his battle with melanoma on August 3rd.  I don't know whether to say it was a 12 week battle or a 26 year battle.  He was diagnosed with superficial spreading melanoma on his chest in 1984.  He was treated at the Pigmented Lesion clinic at Penn.  They did a WLE, no SNB was done.  He continued to be followed there until 2008 when they told him he didn't need to come anymore, just see a dermatologist every year.  He never had another primary lesion and we thought everything was good.  Unfortunately in May he found a lump under his arm, and the CT scan showed lesions in lung, liver, brain and almost every bone in his body.  He never even had the chance to fight.  I am so sad and am looking for someone who can tell me how they got through this.  I feel like somehow I didn't do enough to help him.  I have asked my friends and family to donate in his memory to MRF in the hope that someday no one will have to face what we did.  Thank you for listening.

 

Janis

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lhaley's picture
Replies 9
Last reply 10/21/2010 - 2:11pm

Today should have been my 1 year NED anniversary..... Received a phone call that the fna was positive for melanoma.  I discovered a lump on my arm about 9 weeks ago (yikes). Since we were in the middle of our move I went to the scheduled oncology appointment to meet my new local Dr. (this was supposed to be a meet and get to know each other).  She scheduled a PET /CT which came back clear.  We then moved on to a surgeon who measured it with an ultrasound.  Came back a month later and measured again. It grew a tiny bit. FNA which now came back mel.

Have a call into my mel specialist and all records have been faxed.  My one year cystoscopy is next week. 

So, I'm back in the fight again and not very happy about it!

Linda

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Joyce's picture
Replies 2
Last reply 8/18/2010 - 9:03am
Replies by: ValinMtl, triciad

Dick just had his scans and now has been NED for 4 years. He had his last surgery in June, 2006. He took the vaccine made out of his tumor and GMC-SF and then had 4 infusions on anti ctla-4. I have been known as Dick's wife (Dick stage 4) but I think that changed with the new format.

Joyce from MA

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