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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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, ??

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Your journey matters.

Journey DX, a patient research company, is working with patient advocacy group Canadian Skin Patient Alliance to better understand the patient journey for melanoma, as well as the impact of this disease.

We are conducting telephone focus groups for Canadians with advanced melanoma, and their caregivers. The focus groups will last approximately one hour, and will be conducted over the telephone to be comfortable and convenient for patients and caregivers who would like to share their experiences.

A compensation of $50 will be provided to those who participate, in appreciation of their time.

If you would like to be involved or would simply like more information, please contact Dr. Jennifer Pereira, Research Director of Journey DX (jennifer.pereira@journeydx.com, 416-485-7387).

Thank you for your consideration.

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odonoghue80's picture
Replies 8
Last reply 2/20/2015 - 10:58am

Hi all, just looking for some insight. I've had stage 4 melanoma for a few years now but over the last 6 months I've had an extremely large tumor in my groin that will not shrink. The tumor is protruding from my right groin/pubic area and it's about the size of a grapefruit. To say the least, I need to figure out how to rid this tumor. From September -December I had 4 rounds chemotherapy (taxol/carbo) that really helped and shrunk or killed many of my other tumors. I also had direct radiation for 10 days to the tumor. However this particular tumor is stubborn and possibly encapsulated itself. Seems that any of the treatments can't penetrate this area. Recently I switched from chemo to Anti-PD1 Keytruda and have had two rounds (3rd this Tuesday) but no response yet.

I've checked with a few surgeons, radiation onc, and a few oncologists so far, and nobody has an idea. Surgery is not an option because of location. Has anybody seen or heard of anyone having any tumors this large? Or are other alternatives to reduce tumors? 

After feeling during some real rough stretches and being on multiple treatments, a brain surgery, clinical trial, chemo, radiation, and now Keytruda, I'm finally feeling a bit better, but this tumor is preventing me from getting back to close to normal. If anybody has any ideas please share.

Thanks,

Shane 

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susan-scalp MM 2014's picture
Replies 18
Last reply 2/21/2015 - 9:26am

Hi to all tonight and prayers for those in the fight and their caregivers, family and friends!

Went to my 6 month check with Melanoma Oncologist Surgeon today. I am Stage 1B scalp Melanoma and was expecting a routine check. My upper abdomen began swelling a few weeks ago and no pain only discomfort from it pushing up on lungs, some short of breath. My Dr looks at my belly and says "What the hell?!!!"  I love him and if it weren't serious I would have laughed out loud. He is concerned that the Melanoma could have spread through the blood system and is ordered a CT scan to find out what is going on. Has anyone had this kind of spread or symptoms? I am oddly at peace with this, just feel like I went through a tornado and now have landed on the warm sand of the beach with all sun protection on of course!

Susan

It is well with my soul!

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Anonymous's picture
Anonymous
Replies 2
Last reply 2/21/2015 - 3:37pm
Replies by: _Paul_, Teochasse

If you have a local recurrence and NED everywhere else and you are in good health would you just keep on trucking on or would you try to get into a clinical trial?

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rjwilson2015's picture
Replies 4
Last reply 2/19/2015 - 7:09pm

So my husband noticed in december a pigmentation in his right thumb (not dominant thumb). The doctor seemed not to worry but gave him the choice of biopsy. He agreed. He a huge worrier he would wake up sweating at night wouldnt eat and was always reading on the internet. Well he got his results and it read as follows

nail plate with intercorneal hemorrhage

negative for fungal ornaisms

right thumb bed nail plate,nail matrix and underlining tissue examined with no sognificant histopathological abnormalities.

no melancyttic proliferation identified as multiple deeper levels examined in biopsy

We took this as great news as the final results said all the things above. So his doctor cut above to the left and right of the pigmentation and a longer sliver behind his nail fold.. He went back two weeks later all looked good. He set another appoinment for the stitches a week later that week he did his instructions to clean it. As it dried out it began to what looks like a bruise right in the middle of the matrix  literally right in the middle of the three incisions and he is stressing again that its not a bruise thats its something else and the doctor cut around it because when he did the biopsy he literally saw nothing. So my question are,  hoping i explained it clearly :

1. If it was a mole in the middle would the three biopsy that said no melanocytric found  pick up on it being around it and would it surface that fast (less than a month after surgery). ( no real changes in the bruise or mole )?

2. Could it just be bruising from under the healed matrix surfacing since its dried out.

3. Has anyone else experienced this im trying to ease his thoughts that its just a bruise?

thank you guys for any responses and stories i look forward to hear from you guys!

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kaitokid's picture
Replies 13
Last reply 2/17/2015 - 7:52pm
Replies by: Squash, SABKLYN, Janner, kaitokid

Hey guys,

24 year old here. No history of extreme sun exposure, but a few bad burns in childhood. I live in California and work out outdoors so some history of mild exposure over the last few years, a few times a week maybe 1 hour at a time.

I recently noticed that a freckle on the top of my right hand had developed a black "crust" or scab. If I rub my finger on top of it it feels like a scab.

It's black and irregular, which is why I'm suspecting Melanoma. Also didn't use to be there, and it's on top of said "freckle". It's roughly the same size as the freckle. Definitely smaller than a pencil's eraser.

I'm freaking out. I have a doctor appointment in 7 days.

Here are some photos:

http://imgur.com/a/7Aotj

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Choosejoy1's picture
Replies 1
Last reply 2/17/2015 - 6:53pm
Replies by: Bubbles

My husband(45 yrs old) was diagnosed with Stage IIIa Melanoma in October 2013. Wide excision on left shoulder followed by lymph node removal in armpit area. 16 months NED. 1/15 found lump above collarbone. Surgery. Metastatic Melanoma. Surgeon indicated change in stage to IV. Visited Mayo yesterday. Dr said we could call it Stage III OR Stage IV as although it had metastasized, it was on the same side as the orginal occurance so it was a better prognosis. Still NED. Has anyone experienced this? We go back on Friday (5 hour drive) for a consult with the Oncology Radiologist for possible radiation of the immediate area. Three options after that. Leukine or two clinical trials. Any advice/experience would be appreciated.

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Replies by: Janner, StephyD83

Hi,

I haven't been here in a long time. I've had several early stage melanomas, all Stage 0 or 1 over the course of the last 20 years or so. I'm currently being followed by Dr. Venna (who used to be at Washington Hospital Center) at INOVA Fairfax. 

My question is if any of you have been diagnosed with early menopause. My gynecologist said my FSH level is 66 (normal reproductive years FSH is between 4 and 22, post-menopausal is between 25 and 135). Like the melanoma I have no family history of early menopause. One other cause of early menopause is thyroid problems (my throid hormone levels are "normal") and/or a pituitary gland problem/tumor along with a likely familial cancer syndrome thing.

I don't think this is a possibility in my case, based on my "symptoms", but I just wondered if these two things which are happening to me at a very young age are related at all. So I thought I'd reach out to you all to see if anyone had any similar experience with this.

Thanks.

Brooke

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Mat's picture
Replies 8
Last reply 2/18/2015 - 10:15pm

So, I had a great run with the GSK combo with ipi in between.  I had ~4 months of reduction followed by ~14 months of stable disease.  My latest scans from a few days ago show progression—3 new lung nodules and a new brain met (8mm).  I'm otherwise (thankfully) asymptomatic and, interestingly, my existing tumors (mostly in my liver) were stable.  Tomorrow I’ll have a gamma knife procedure for the brain met (I previously had one shortly after my initial diagnosis)--and I hope to start on pembro later in the week. 

I did discuss pembro versus nivo with my onc.  It sounds like nivo is not yet readily available and there isn’t a prevailing view that one is “better” (at the higher dosage/frequency, for ipi refractory, etc.) than the other at this point.  I also discussed trials with my onc and a few other experts (supplementing my own research on these forums and clinical trial search engines) and there doesn’t seem to be an alternative that is clearly better.  (However, if Rick Simpson starts a cannabis oil trial, please sign me up!)

Glass half full—hopefully I’ll get the so-called abscopal effect that Celeste has reported about on her blog.  Obviously a time of uncertainty and anxiety—while I’m excited to have the opportunity to try PD-1 (it isn’t lost on me that the timing of my progression is fortunate with the recent FDA approvals), it is unsettling to have less options in the quiver.  That said, I’m generally feeling ok about the situation.  While I could certainly do without the brain met, I feel like we’ve caught the progression early.  (By the way, I credit my “ok-ness” to a MBSR (mindfulness-based stress reduction) course I took last year and my continuing practice and reading in that area.)

One piece of advice for my fellow Stage IV-ers—insist on a MRI of the brain with each periodic scan, particularly if you've had a prior brain met.  I have always done this.  Insurance will sometimes push back, but your onc can appeal.  That was the situation for me with these latest scans.  Had we not pushed back, I wouldn’t even know about the brain met.

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vince1962's picture
Replies 2
Last reply 2/16/2015 - 6:41pm
Replies by: vince1962, Janner

Ok I have a 9mm nodule mid right back, nodes on the right side are pallable but also shows some spots high left subpectoral,since it,s left the node basin and spread to the left side would that make it stage IV?

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