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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lanasri's picture
Replies 2
Last reply 2/27/2015 - 8:49am
Replies by: lanasri, Becky

My son's wife and a couple of good friends have created a website with his extraordinary landscape photographs to honor his memory by donating all net proceeds to the Melanoma Research Foundation.  

Jeffrey and I visited this forum often and always came away with an abundance of knowledge and support.  The amount of compassion in this forum is truly a gift and one that Jeffrey had supported through the sale of his images.  Here is the link to his website, which really tells Jeff's story.  Clicking on each photograph will provide poignant memories evoked by the image, along with a link to purchase.  

Please pass the link along to everyone you know!  As we are all painfully aware, there is nowhere near enough money going toward Melanoma research.   This is our way of contributing.  

http://www.jeffitandbethere.com/

Thank you for your support!

Stay strong!

Lana

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5dives's picture
Replies 12
Last reply 2/23/2015 - 4:32pm

Hello all, 

I am currently T1bN1a (stage 3b) and feeling really well. My SNLB / WLE was July 10th. I see my dermatologist every three months and the oncologist every three months, so I'm under somebody's watchful eye every six weeks. I feel like my anxiety is under control, and I'm finally able to focus on diet, exercise, and being proactive about my health.  I am in a good place and in good hands, but like many melanoma patients, I wonder if I could be doing more. 

I did not have the lymph node dissection or interferon after my one node came back slightly positive. I am treated at Loyola in Chicago and I have been seen by Dr. Postow at Memorial Sloan Kettering. 

My question is this: If / when a clinical trial becomes available for which a patient might qualify, does their doctor point that out to them, or do patients have to keep their eyes out for trials? I am the kind of person who would like to help move the science forward, especially if I can be useful in some way...but I do understand that trials involve exposing oneself to risk.  Am I supposed to be agressive, or wait until I "need" a trial? 

I see that there is a vaccine trial (NCT02129075) at MSK that I might qualify for. Since I'm a patient at MSK, would you expect a doctor to contact me? How is this handled? 

If you are of a mind to tell me to sit tight and don't worry about clinical trials until one is necessary, I welcome that kind of feedback. I just know that I've learned quite a bit from this site, and I know NOTHING about trials. 

Thanks in advance. Best,

Elaine

http://melanomadame.blogspot.com/

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dmk252003's picture
Replies 11
Last reply 2/22/2015 - 11:11pm

Hello

My mom was diagnosed with Stage IV melanoma. She has tumors in her lungs, spine, adrenal gland, clavicle. Her oncologist is recommending Yervoy. I would like to get feedback from people who have gone through similiar situation. I appreciate it. Thanks, Donna

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troy's picture
Replies 3
Last reply 2/21/2015 - 9:51pm

Hi I am new to this my wife has stage 4 metastic melanoma and has been fighting it for 2 years.We live in Australia and recently she was on a EAP for Merck 3475.After 6 treatments her ct scan was not good and so they took her off.What we want to know as it is a EAP is that normal? Over here they are still debating weather or not it should be approved by our FDA which is known as PBS.

She had Yervoy prior but only 4 doses and that showed some tumor regression but also more showed up so they went for  the 3475.

I feel that because it is a EAP they want to see improvement straight away.

Any comments welcome I just dont want her to die without trying every possible thing we can.

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http://emedicine.medscape.com/article/1372666-overview#aw2aab6b2

This is a fairly long, interesting, detailed article reviewing all the recent developments in targeted cancer treatment with some comments on future directions.  Our malig mel is in the Big Tent with all its cancer sibs where research findings in one type of cancer apply to other types also. The author discusses the mutation processes that occur in a cell becoming cancerous, how the cancer cell creates its survival environment, cell vulnerabilities, the 10 hallmarks of cancer and much more.  It's technical but well within layman speak, I think.  Hope you find this helpful.  A.L.

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Just thought I would share antibody drug conjugate trial NCT02302339 - Glembatumumab Vedotin is recruiting in several places.

However unless I'm mistaken it seems to be the same med presented at ASCO 2010 with this report:

http://ir.celldex.com/releasedetail.cfm?ReleaseID=715940

That trial had an overall response rate of 15% and median progression free survival of 3.9 months.

So I'm not sure what they are thinking. Maybe something for those who even pd1 failed them. I dunno.

Artie

 

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Mat's picture
Replies 7
Last reply 2/22/2015 - 2:43pm

I had my first infusion of Keytruda / pembro yesterday.  I didn't see much on the forum on infusion-related side effects, so I thought I would post my experience.  The infusion itself was fine--30 minutes from the time the bag starts flowing (versus 90 minutes for ipi).  Shortly after the infusion, I began to feel tired.  (I would get this same effect from ipi.)  I napped for about an hour and then awoke with nausea, stomach churning and chills.  Shortly thereafter, I had a bout of diarrhea that had me concerned enough to contact my onc's office. (I had colitis while on ipi.)  I took one Lomotil and my stomach settled down within a few hours (~8 hours after the infusion).  This morning I'm feeling fine.  I have some residual tiredness, but it seems that my GI issues have settled down (hopefully not jinxing myself).  Apparently infusion-related side effects are more common with Keytruda than ipi.  Hope this proves useful.

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Anonymous's picture
Anonymous
Replies 4
Last reply 2/20/2015 - 2:56pm

I'm trying to find a good derm in NYC  - looking for recommendations.  I referred my friend to one on the East Side but she doesn't take Aetna insurance anymore.  Any suggestions would be appreciated.  This will be for annual skin checks from someone that is at risk but currently not a melanoma patient - but a faimly history.

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andimd's picture
Replies 7
Last reply 2/24/2015 - 7:12pm

I have been being treated for a fungus under the nail on my big toe for 3 or 4 months. In the past month, not only has it not gotten better but it is changing a lot. I have an appointment with a podiatrist in 1 1/2 weeks but hate the wait. A spot started that looked kind of brown, it now takes up half of the toenail and keeps getting darker. The cuticle and surrounding skin is also getting dark (pretty quickly) and today I noticed an almost yellow small circle in the middlevof the black area. I'm trying not to worry but not sure that I like how fast it is changing. Has anyone seen anything like this? It is very ugly but I would post a pic if I knew how. Any info or opinions are appreciated, thanks!!

Andrea Domeier

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Dear MPIP Community:

We are looking for approximately 6 melanoma patients who were diagnosed at Stage III and are willing to participate in a two-hour online discussion focus group on Tuesday, March 10, 2015 from 5-7pm ET. During the focus group, we will discuss the following topics:

  • Knowledge of treatment options
  • The lack of treatment options for Stage III patients
  • The psychosocial effects of a Stage III diagnosis
  • Decision-making around treatment
  • Obtaining a second opinion
  • Supportive resources
  • Your overall experience

A $100 honorarium will be provided for your participation. In order to participate, you will need a telephone, a computer with high speed internet access and a webcam. If you do not have a webcam, one can be provided to you at no charge.

If you are interested in participating,  please click HERE to answer additional screening questions. You will then be contacted by our hosting technology company with next steps. 

You may contact me directly if you have questions about the focus group. Thank you for your help!

Sincerely,

Shelby - MRF

education@melanoma.org

(202) 742-5945

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Jacqueh27's picture
Replies 2
Last reply 2/19/2015 - 9:29pm

Jess has been doing so well since we found out that the tumor was shrinking, however it's still big 11cm. She gets a PET next Thursday to see how much of that is actual cancer. She's been having pain again though and I'm worried. Same tumor pain as before. :( could this mean it's growing again or normal after Yervoy?

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TOKYO -- An exciting new cancer treatment is being developed in Japan -- deploying viruses that selectively infect cancer cells and kill them.

Tottori University and the Institute of Medical Science of the University of Tokyo have confirmed the effectiveness of their methods in animal experiments, using viruses for smallpox vaccination and measles, respectively. In each method, the virus is genetically engineered to prevent it from infecting normal cells and is injected into the bloodstream.

The researchers at both institutions believe their methods could lead to new therapies that will supplement surgery, chemotherapy using cancer drugs, and radiation therapy. But first they must confirm the effectiveness and safety of the new methods in humans.

A cancerous tumor produces new blood vessels around itself to obtain nutrients necessary for growth. When a therapeutic virus is injected into the bloodstream, it circulates through the body until it reaches the tumor. It then infects the cancer cells. The virus kills the cancer cells while it spreads in the tumor, causing it to diminish or disappear. The virus infection can also be expected to incite the immune system, which protects the body from pathogens, to attack the cancer cells.

Cancer-specific viruses

A research team led by associate professor Takafumi Nakamura at Tottori University has developed a method for using vaccinia virus, which is used for smallpox vaccination, to treat lung and pancreatic cancers. The team genetically manipulated the virus to ensure that it multiplies in cancer cells but is unable to multiply in normal cells.

The researchers injected human pancreatic cancer cells into the abdomens of mice, causing tumors to grow in them, and later injected vaccinia virus into the mice. In the experiment, they found that more than 90% of the cancer cells had died. "The virus was originally used in vaccination, so it is very safe," Nakamura said. His team hopes to confirm the safety of the virus for animals closer to humans, including monkeys, and to start clinical trials in five years.

Professor Chieko Kai and her team at the University of Tokyo's Institute of Medical Science have developed a method of using a type of measles virus to treat breast cancer. The researchers found that the virus infects breast cancer cells by sticking to a protein, PVRL4, on the surface of the cancer cells. They genetically manipulated the virus so that it would multiply only in breast cancer cells and would not infect normal cells.

When the virus was injected into mice that had received transplantation of cancerous human breast tissue, the cancer scarcely grew and most cancer cells in the tumors died. When the virus was administered to healthy monkeys and dogs, it did not produce side effects on the animals and showed no safety problems. Kai said, "The likelihood of the virus infecting non-cancerous cells is low." She wants to start clinical studies as early as in 2016.

Bearable therapy

Cancer treatment using viruses is easier on patients than traditional surgery and chemotherapy. When the injected virus is carried throughout the body by the bloodstream, it can be expected to attack small cancers that have not been removed by surgery as well as metastatic cancers. This approach, however, has weaknesses due to the use of viruses.

First of all, when a therapeutic virus is injected, it may be removed by the patient's own immune system before reaching the tumor. If the virus is repeatedly used, its effects may be reduced by the body's immune response. Therefore, viruses that can avoid the immune response and reach cancer cells have to be developed.

There is also concern that therapeutic viruses could mutate while multiplying in the body and begin attacking normal cells. The effect and safety of cancer treatment that involves an intravenous injection of viruses have been confirmed only in animal experiments. What influence the treatment might have on health in the long term has to be studied on humans. Researchers will also have to find ways of treating side effects that could result from mutation.

Tomoki Todo, professor at the University of Tokyo medical institute, who is in the vanguard of this field of research in Japan, started a clinical trial in late December for a brain tumor treatment method that involves injecting a genetically modified herpes virus and letting it reach the affected part of the body. In the clinical studies so far, there have been few side effects, and therapeutic effects have been confirmed, Todo said.

Cancer therapy that uses viruses is effective in many ways that are unavailable with traditional therapeutic methods. For the therapy to become a viable option for cancer treatment, researchers will have to steadily overcome the problems that remain.

(Nikkei)

Nikkei Digital Media Inc.

 

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AshleyS's picture
Replies 5
Last reply 2/20/2015 - 10:01am

After feeling like I was being led down the wrong path for the past 2 months, I finally feel like I'm heading in the right direction. We met with my new care team at MD Anderson yesterday. I will either go on a trial for ipi + IL2 or ipi + PD1.  I'm hoping for the latter. 

Being on a trial with MDA will require me to pack up my 2 year old, 2 month old, and husband for a move from ND to TX, but I know it'll be worth it. 

Thanks to everyone on the board for all the advice, especially for urging me to seek out a specialist. 

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Hello there everyone!    I just wanted to be sure everyone the melanomanetwork.ca site discussion forum is up and running once again; especially if you are Canadian!    The ,forum had been down for some time due to some problems with spammers, but is now fully functioning and better than ever!     We are all very fortunate to have the MRF site among others availabel to us in our needing support; others to connect with as well as information ie.: treatments, trials, etc.!

I am a Melanoma survivor; three years ago Feb. 15th since diagnosis.   The hardest part for me is knowing it could recur and that it's a watch  and wait and see; watching for symptoms of recurrence.    At this point I have bi-annual Derm appointments, Annual surgeon checkup and annual oncologist appointment, no further scans; unless symptoms present.

I hope everyone is receiving the best of care and feeling they are in good hands.   Again if you wish to register with another discussion forum, the canadian site  https://www.melanomanetwork.ca is up and running once again and there is a moderator and as well there are many people who will be there to answer questions, or simply be there to support you as you begin your journey with melanoma.

Take care all.

Best Regards

Cathy

Stage lll 

Cathy

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Julie in SoCal's picture
Replies 5
Last reply 2/22/2015 - 3:12pm
Replies by: Anonymous, BrianP, Marianne quinn, Mat

Hi there friends!

Well it seems that I am not a complete responder.  A couple of weeks ago  in late Jan. I found a rice grain size piece of funk near-ish my WLE.  I was pretty sure it was another in-transit met.  I hoped I was wrong and that it was just scar tissue or junk or whatever.  But that grain of rice sized funk is now pea sized funk.  So I'll go see Rock Star Doc next week.

I hate this disease!  I had so hoped that IPI had kicked mel to the curb.  Alas it isn't completely so.

Meanwhile, friends and I have created our own 4 day weekend this week and we're going camping.  Imagine sleeping on the beach along the rugged California coast!  I can't wait.  I'm bringing my best friends (a few of them anyway) and a small pile of books.  And I'm planning on laughing, reading, hiking along the beach, and of course having long staring contests with the waves.  I'm grateful for the time and I don't know what I would do without my friends.

I'll keep you all updated after I hear from the Rock Star.  Thanks for standing with me!

Shalom,

Julie

Stage 3c: WLE, SNB, HD-INF, GM-CSF, IPI, ??

Stage 3c: WLE, SNB, LND, HD-INF, GM-CSF, INF, Keytruda?

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