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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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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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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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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clthomas2131's picture
Replies 6
Last reply 2/20/2015 - 12:31pm

 

Does anyone have any experience on or about the trials for:

 

Avastin and/or Yervoy 

 

Interferon and/or Yervoy?

 

Those were 2 of my options with the 3rd being just yervoy.

 

Just trying to get as much feedback as possible.

 

Thanks!

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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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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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My husband is a stage 4 melanoma patient at UCSF who has been on PD-1 for the last 7 months. He has three main tumors in his liver that are being treated and with a combo of PD-1 and a couple of chemo embolization surgeries his scans have stayed mostly 'status quo' since he was diagnosed. No spread outside the liver and no major growth in the liver.

 

We just got back from the National Cancer Intitute (NCI) and was accepted into a t-cell therapy clinical trial. It's excellent news and we're in the process doing our research and getting opinions from his melanoma specialist and interventional radiologist at UCSF just to ensure it's the right decision for right now. It seems like a slam dunk but as you all know it's a huge lifestyle shift to move across the country for such an intensive treatment.

 

Has anyone on the forum gone through it and had a good or bad experience within the last year or two? I found threads from 2012/2013 but treatments change so quickly.

Amanda

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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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csellers23's picture
Replies 10
Last reply 2/19/2015 - 9:11pm

My husband has had one round of keytruda. I noticed what i thought was a bruise on his ankle. Now both ankles are swollen and the bottom of his feet are red it happen fast. It hurt so bad he couldnt walk. I gave him one ibuprofen but cant give him much due to brain mets.has this happen to anyone? If so how long did it last and did they give you any meds to take it away? Also his joints hurt all over. How long did that last for you? Thank you all.

Crystale

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Kdw2012's picture
Replies 15
Last reply 2/19/2015 - 8:53pm

My Doctor just called yesterday and I have 3 brain tumors. This explains the recent very bad headaches.

I am wondering what treatments are done for brain tumors?. I want to go to my appt on Thursday with info.

The doctor prescribed Dexamethasone for  swelling. He said we will have to do radiation also, but this was just over the phone yesterday and we will be discussing more at my appt.

thank you

Kim

 

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Anonymous's picture
Replies 3
Last reply 2/19/2015 - 8:31pm

Hello.  My wife was just diagnosed with a nodule on her lung from the CAT scan (October had a clean PET scan, and surgery for full lymph node dissection in November).  The dcotors are going to do a biopsy of the nodule next week but we are assuming it is melanoma until we hear otherwise (versus an infection, inflammation).  She has spoken to the melanoma oncologist and has agreed to a clinical trial with an Ipi (3mg) and Nivo (1mg) combination for 12 weeks, concurrent doses given every 3 weeks for 4 cycles.  After the 12 weeks she would get Nivo (3mg) every 2 weeks for some time.  She is BRAF negative.

Does anyone have any advice with this?  I know of the multiple and significant symptoms but she seems determined to move forward with this treatment and try to get through the 12 weeks program combo program.  She has discussed medicines to manage the side effects with the doctors.  I have heard that Nivo (or Keytruda) is more manageable in terms of side effects versus Ipi if she is able to get past the 12 weeks concurrent regimen.

Thanks,

Michael1212

 

 

 

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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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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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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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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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