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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The Melanoma Research Foundation continuously looks for innovative ways to raise awareness of melanoma and push for further research into new treatments.  One of the ways we do this is by speaking with media outlets on important topics related to melanoma education, research and advocacy. 

To help us spread these important messages, we are looking for volunteers willing to share their melanoma experiences with the media.  Depending on the opportunity, this may range from a personal story to a treatment plan.  If you are interested in helping the MRF raise melanoma awareness by speaking with the media about your personal experience, please take a few minutes to complete a short survey by visiting: http://www.surveymonkey.com/s/6JY5R8C.

Thank you for your consideration.  The MRF will be in touch with you as media opportunities arise that match your experiences.  If you have any questions about this survey, please contact the MRF’s communications manager Lauren Smith at lsmith@melanoma.orgor 202-347-9675. 

With many thanks,

The MRF Team 

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Erinmay22's picture
Replies 2
Last reply 5/20/2013 - 12:50pm
Replies by: Erinmay22, kylez
A few weeks ago I had an editor from Everyday Health ask if they could film me for a piece on Melanoma for awareness.  Here is what they put together. 
 
 
It's nice to hear more and more folks talking about it.  Although we always see discussions of it go up this time of the year!  
 
As as update on me - I had scans again this past week.  The lymph node they are watching continues to shrink.  The lung spot that showed up 4 weeks ago is gone.  There was a tiny spot on my L5 vertebrae but the doctor didn't seem concerned at all about that (but it's much easier for him not to worry...)  But still feeling pretty good!   And hopefully all heading in the right direction! 
Erin
www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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Melanoma Treatment Harnesses Immune System to Combat Cancer Cells

 

By ANDREW POLLACK
Published: May 15, 2013

Cancer researchers are growing increasingly enthusiastic about harnessing the body’s own immune system to fight tumors. And new research shows that two drugs that use this approach may be even better than one.

Researchers reported on Wednesday that a combination of two drugs from Bristol-Myers Squibb shrank tumors significantly in about 41 percent of patients with advanced melanoma in a small study. In few of the 52 patients in the study, tumors disappeared completely, at least as could be determined by imaging.

“I think it was really the rapidity and the magnitude of the responses that was impressive to us,” Dr. Jedd D. Wolchok of the Memorial Sloan-Kettering Cancer Center, said in a telephone news conference organized by the American Society of Clinical Oncology.

Dr. Wolchok’s study, and others on the immune system drugs, will be perhaps the most closely watched items at the society’s annual meeting, which begins on May 31 in Chicago.

The drugs are also generating huge interest on Wall Street, which projects billions of dollars in annual sales. While Bristol is generally considered to have a lead, Merck and Roche are not far behind with similar drugs.

Data released Wednesday from an early-stage study of Roche’s drug, which is known as MPDL3280A, showed significant tumor shrinkage in 21 percent of 140 patients who had a variety of cancers including lung, melanoma and kidney cancer.

The studies are small and they did not compare the drugs with a placebo or with another treatment, and it is unclear if they will lengthen lives. Moreover, it is unclear how long the effects will last, though there are signs that for many patients, it could be a year or more.

Cancer cells often successfully hide from the body’s immune system by preventing T-cells from attacking them. The new drugs basically work by disabling brakes on the immune system, allowing the T-cells to attack the tumors.

One of the drugs in Bristol-Myers’ combination is Yervoy, which was approved as a treatment for melanoma in 2011. Yervoy disables an immune system brake called CTLA-4. It shrinks tumors in only about 10 percent of patients, but the effects can last for a long time.

The other drug in its combination is nivolumab, which is not yet on the market. It disables a brake known as PD-1, which sits on the surface of T-cells. Tumors can produce a protein called PD-L1, which binds to PD-1 and makes the T-cells inactive.

Nivolumab, and the drug being developed by Merck, called MK-3475, are antibodies that bind to PD-1, while Roche’s drug binds to PD-L1. It is not clear yet which approach is better.

It may be possible to test tumors for the presence of PD-L1, and use the drugs mainly for those patients, where it is expected to work more effectively.

It is also not clear yet how many types of tumors the drugs will work for. All the companies are targeting melanoma, a deadly skin cancer, because there is evidence that it is sometimes controlled spontaneously by the immune system. The companies also have data for lung and kidney cancer. Roche’s study showed some effect in colorectal and head and neck cancer as well.

Bristol-Myers’s stock rose 5 percent on Wednesday, even though the results of the study were not released until 6 p.m., after the close of regular trading.

Mark Schoenebaum, the pharmaceutical analyst at ISI Group, said investors were hoping the combination of the two Bristol drugs would significantly shrink tumors in at least 50 percent of patients.

He said in a note on Wednesday that the overall shrinkage rate was perhaps a bit below expectations but added that for many patients, the shrinkage was more than 80 percent.

“The point is that the depth of those responses is pretty incredible,” he wrote.

Some experts say that tumor shrinkage, a measure that evaluates conventional chemotherapy drugs that poison cancer cells, may understate the effect of these new drugs.

“Sometimes it takes awhile for the immune system to be revved up,” said Dr. Gary Gilliland, who leads cancer drug development at Merck.

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lrkg1234's picture
Replies 10
Last reply 5/19/2013 - 11:24am
Replies by: lrkg1234, kylez, aldakota22, Anonymous, MattF

We had a pretty crazy week at MD Anderson and not very good luck with our MRI, varying reports etc.  We still don't totally understand it and have had 3 opinions.  Please read below and let me know what you think. 

First doctor Patel calls us and says there are several areas on the brain that look like tumors, not sure how many, maybe some are scar tissue. She says that the radiologist says there was no contrast, but there clearly was and that she had other doctors agree that saw contrast.  She begins to tell us about possible SRS or Whole brain radiation.  I asked if she remembered that Scott has already had both SRS and Whole brain radiation.  She had not remembered that so things would obviously be different now.  She was not sure then if she could possibly be looking at scar tissue from the previous treatment.  NOT comforting, or cool waiting for several more days for an explanation.  The scan was done on Sunday and we didn't have an amended written report until yesterday, after we were back home in Indy.  

 

Here are the two reports, the preliminary and the amended. 

 

Technique, MRI of the brain without IV contrast-diffusion, axial T2 and axial flair were included. 

Findings:  There are areas of new T2 FLAIR hyperintensity in the left insula and bilateral left greater than the right anterior temporal lobes concerning for new foci of metastatic disease.  The previous enhancing lesions demonstrated are not well evaluated due to the noncontrast technique.  There is likely numerous enhancing lesions that have increased or that are new, however, cannot be evaluated due to noncontrast technique.  The orbital structures are unremarkable.  There There is no evidence for acute infarction.  The paranasal sinuses are clear.  There is mucosal thickening in the right mastoid air cells.  The left mastoid air cells are clear. 

Impression.  LIkely other foci of metastatic disease, however cannot be seen due to current technicque.  MRI with contrast is recommended. 

 

OK, then nothing else happens, no new MRI, just a change in report.  Here is the new ammended report. 

ADDENDUM:

It appears that the patient had IV contrast, which was not pushed over to PACS and given that now these images have been pushed over, it is noted theat the patient is status post IV contrast.  Multiple enhancing lsions as dtailed below:  then goes on to list a total of 7 lesions.  Some of these are new when compared with the prior. 

So, my question is what is reality? 

We got the disc yesterday in the mail and gave it to the radiation oncologist office here.  He calls my husband last night and says that it might not be so bad as 7 tumors, it might just be 2 and then treatment would be possible.  He is home with a busted knee until for a week and a half and says that we can deal with it then, or see someone else.  He does not believe it will make a difference in Scott's treatment to wait a week or so. 

This is just craziness. I think they clearly screwed up the MRI at MD Anderson.  Bad news is hard enough to take, but it would be nice not to be told a few different things.  What does everyone think of these reports?  What does it exactly mean to "push" these images over? 

Thanks for the help.  Lisa

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Gene_S's picture
Replies 1
Last reply 5/19/2013 - 1:57am
Replies by: Anonymous
Join Us!  The NaturalNews Healing Summit will be available
(online) at no cost - starting Mon. May. 20th - details below:

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Strength and Courage,

Susan

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SDJanku's picture
Replies 4
Last reply 5/18/2013 - 11:50pm
Replies by: Janner, malika, SDJanku

Our 3 year old boy, Gideon, had what we thought was a wart show up in November of last year, it was in the very center of his cheek. We thought it was a pimple, but it kept growing and was soon about 4 mm wide and tall and raised. We took him to the pediatrician, who tried to burn it off like a wart. Instead of turning black and falling off, it turned bright red, bled a lot and grew fast - it was 7 mm wide and 7 mm tall and 3mm above the skin when they sent us to the dermatologist. Derm did shave biopsy and those are the meausrements of what they removed three weeks ago. They sent it to pathology. It has grown to be the same size before shaving it in just three weeks and we see growth daily!

Pathology came back as unclear between atypical spitz nevi and malignant melanoma. I understand it is difficult to tell. They sent it back for further testing.

In the meantime, we were referred to an ENT to do a WLE (Wide Local Excision). We are being told the cut will be about three inches long (on his face) and will leave a good scar - it will go fairly deep too, since they predict that the mole goes deep.

The doctors we are seeing are not specialist with melanoma, and I understand juvenile melanoma is really rare. We live near Portland, OR and about three hours from Seattle, WA. We have family in Michigan and Minnesota and are willing to travel wherever to find the best treatment. Does anyone have any recommendations?

Also, what questions should I be asking the docs? Should they be doing a sentinal node biopsy? What else should I be asking?

There isn't much out there for kids - so any help is really appreciated!

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Been a while since I posted. I do check on the board each day. Lynn finished the aberaxene wasnt much help. Talked about a clinical trial in Charlotte if brain was stable but the did a mri of brain. The 32 spots they treated are desd are dying only empty cavitys but of course there was 7 new ones and they offered gamma knife ahain they say it works so good for Lynn just dont know if hes up to the sixth one or not. They are talking about temador not to sure about that either. I dont think we have many options left. Lynn been really sick this week guess he picked up a virus at hospital Monday and on top of it the place they cut off on back got
infected. Its devasting the Drs havent give us much hope and Lynn wants to fight so bad

I have missed talking to my family on her and I have been wonder about gabsound.

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TAC's picture
Replies 2
Last reply 5/18/2013 - 8:44pm
Replies by: kylez

Haven't been here in quite a while. Am Stage IIIb and have been for almost 12 years in spite of 6 recurrences..all surgically removed..all on the skin or just underneath. Have had 8 surgeries, 4 skin grafts, 2 sentinel node biopsies, chemo (interferon), radiation, a vaccine and then Leukine for 8 years. Fortunately none of the recurrences were in organs. I did have renal cell carcinoma (kidney removed) and in 2008 had adenocarcinoma (lung cancer and upper left lobe removed....I don't smoke). Been quite a journey in the cancer world but so far so good.

Chicken Soup for the Soul was soliciting stories for their Cancer Book. So I submitted a story called The Room of Hope, my story in the chemo room. It was included in the book. My view of the chemo room was and is that it is a place where Hope lives so I wrote it from that perspective. If you are interested in reading many good, hopeful and yes, sad stories, get the Chciken Soup for the Soul - The Cancer Book. My story is one of them.

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MattF's picture
Replies 14
Last reply 5/18/2013 - 7:13pm

So over 1mm tumor on my cheek and ear lobe right side.

WLE and SLN biopsy done Sept 2012. Neg SNL with good margins. Now only treatment is monitoring. 

I have right side cluster migraines, horner's syndrom, trigeminal neuralgia and aniscoria.

as more than one Doctor and more than one Oncologist has told me "alot about melanoma is unknown. it can really do anything it wants. it can move anywhere and be fast or slow"

So my question is....just because they didn't find it in the lymph nodes they took from my neck doesn't mean it could not be in lymph system either in transit or in another area of nodes "ie right arm pit" etc?

I may not think this pessimisively except that i have been suffering from the other medical conditions I noted...and somedays it all just feels off if you know what I mean.

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JoshF's picture
Replies 6
Last reply 5/18/2013 - 5:40pm
Replies by: JoshF, Anonymous, Cindy VT, MattF, Kim K

So tomorrow is 2 years NED though I've had my scan a bit over a month ago which my onc said is a big milestone. I'm not a typical case because they never found a primary but thought that I may be a dermal primary. Anyway my onc feels scans would be more harmful and my chances of recurrence is very small. I voiced my concern about cells in bloodstream or lying in wait. I was told this is highly unlikely as with the amount of time between having melanoma and now the 2 years of NED something would've surfaced. His biggest concern for me is being in a higher risk group with already having melanoma. He feels blood work and skin checks would be adequate. He is a melanoma specialist and well respected and constantly says take the monkey off my back and put it on his...easier said than done. Anyone want to share their insight into melanoma cells in blood and my follow up plan.

Josh

Let's work for better treatments....for a cure!!!!

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SDJanku's picture
Replies 1
Last reply 5/18/2013 - 5:25pm
Replies by: washoegal

Our 3 year old boy, Gideon, had what we thought was a wart show up in November of last year, it was in the very center of his cheek. We thought it was a pimple, but it kept growing and was soon about 4 mm wide and tall and raised. We took him to the pediatrician, who tried to burn it off like a wart. Instead of turning black and falling off, it turned bright red, bled a lot and grew fast - it was 7 mm wide and 7 mm tall and 3mm above the skin when they sent us to the dermatologist. Derm did shave biopsy and those are the meausrements of what they removed three weeks ago. They sent it to pathology. It has grown to be the same size before shaving it in just three weeks and we see growth daily!

Pathology came back as unclear between atypical spitz nevi and malignant melanoma. I understand it is difficult to tell. They sent it back for further testing.

In the meantime, we were referred to an ENT to do a WLE (Wide Local Excision). We are being told the cut will be about three inches long (on his face) and will leave a good scar - it will go fairly deep too, since they predict that the mole goes deep.

The doctors we are seeing are not specialist with melanoma, and I understand juvenile melanoma is really rare. We live near Portland, OR and about three hours from Seattle, WA. We have family in Michigan and Minnesota and are willing to travel wherever to find the best treatment. Does anyone have any recommendations?

Also, what questions should I be asking the docs? Should they be doing a sentinal node biopsy? What else should I be asking?

There isn't much out there for kids - so any help is really appreciated!

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JoWen's picture
Replies 4
Last reply 5/18/2013 - 1:50pm
Replies by: MattF, JoWen, Anonymous

A few years ago Joe began having cluster headaches....it came in cycles, lasting anywhere from weeks to more than a month at a time.  Each one peaked at around 15-20 minutes and than began to subside.  The event lasting about an hour, about the same time each day.  Each time there was a physical change noticeable in the drooping and tearing of the eye.  He said that the pain would literally go to his jaw line.  Seen by PMD, Dentist, Endontist (for a root canal that he didn't even need) Neurologist and Neuro/Opthamologist at Cincinnati Eye Institute and a CT was done (normal)  Numerous meds tried the only thing that seem to work for short time only was Prednisone, however they did not want to continue having him on a steroid.  There was nothing out there for his pain....when it came on.....he paced the floors waiting for it to subside.  We were told that they don't know what causes cluster headaches and for some, it's doing or taking whatever helps the individual.  Oxygen was suggested but he declined at that time.

Within the last two months, he began to have a blurred/foggy vision and an uncomfortable irritation in the eye.  Seen by the eye doctor, he found that there were cataracts, but also evidence of possible past episodes of iritis. There was a thickened area on the sclera which he said was a cholesterol deposit.  The arteries within the eye were engorged, which he said were sometimes typical of people with high blood pressure, however, Joe's BP is constant in the range of 110/60. So he said that there may be more going on, possibly systemic or involving connective tissue.  It was then that Joe told him of his recent diagnosis.  It was felt that with upcoming surgery and pending CT and MRI, we wait until the results of these come in.

So now I am wondering, whether or not his "cluster headaches" have really been that, or connected to the melanoma

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Anonymous's picture
Anonymous
Replies 10
Last reply 5/18/2013 - 9:13am

I need helping finding a doctor for a family member diagnosed with stage iv melanoma with metastasis pretty much everywhere (brain, lungs, liver, lymph nodes, etc.). I feel like due to the diagnosis and poor prognosis, I don't want to mess around - I'd like to get, at the very least, an opinion from a top doctor in the field of melanoma research. But, I'm having a hard time figuring out who that would be... Any advice? how to research? good experiences from specific doctors? I have a bazillion airlines miles so we can pretty much pack up and go anywhere.

This is scary stuff! Any help would be very much appreciated!!

Thanks!

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Posted several updates since my wife was diagnosed Dec. 7 2012. Her oncology staff is at Moffitt in Tampa Fl. She had 1 spot treated on brain with radiation and completed her round of IPI treatments 03/19/13. During the IPI treatment a tumor inflammed in the throat tonsil area causing swallowing and eating issues. It was decided to have the tumor removed as much as possible. That was removed on 04/09/13. Her follow up scans showed 6 small new spots on brain and several new spots around body/organs. There was very little shrinkage if any on original tumors. She started WBR  10 treatments on 04/26/13 and was prescribed Temador to take while WBR. During the past 4 to 5 weeks she was complaining about sever stomach pains which gas X and bentyl seemed to be helping.  while driving to our WBR appt. on 04/29 her stomach pain was sever enough to put her in tears. Right after her radiation she was admitted to Moffitt. The stomach scan showed intussusception caused by a tumor. On 4/30 the whole team  from radition, oncology,GI, social worker meet with us at our room to discuss our options. I knew with this many ppl coming in that someting was not going to be easy. The surgeon explained that the surgery for the intussusception would relieve her current problem but wanted us to relize that due to the amount of cancer that he couldnt fix everything. The doctors discussed with us that the surgery would limit the future systemic treatments until healed and even then the history of both surgery could stop her qualifiying. They started talking with us about quality of life and they feel her time now might be shortened. They gave us an option to do the surgery or return home and suffer through the pain and naussea until a trial would be available. It was also suggested as a plan to start meeting with Hospice so we are fimiliar with the caregivers there and how the programs there could help our family through all this no matter if we elect surgery now or not.  Within a 15 min talk my wife and i were floored. She is 35 yrs old and still going strong, working , walking, house keeping etc. I was thinking WTH just happended. Surgery , no surgery, hospice, shorten time.. how can you handle this all at once. We have always been determined to win. We choose to do the surgery so she could eat and not have the stomach pain. It was done within 4 hours of us approving. She is at Moffitt now in recover. We agreed to meet with Hospice once we get home to understand their program. I would think IPI is still in her system and will still help. she has continued the WBR and has 3 more treatments this week. We dont plan on sitting still. The oncology team said make a full recovery from this surgery which could take 30 days then they could review and determine if another systemic treatment could help. What treatement should we be looking at. How can things be to this degree? Scared and confussed...  

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