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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MattF's picture
Replies 6
Last reply 8/13/2014 - 10:44am

ok guys mulitple bone mets in back and left femur etc.

combo failed last week and we jumped to Yervoy

MRI results from last week scan

 

6 Nodules of Melanoma Metastasis within the breain......all under 20mm in carious loacations

what am I in for when I meet with the Radiation Oncologist?

 

treatment tyes...

etc

 

Matt

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SarahW's picture
Replies 14
Last reply 8/13/2014 - 3:21am

I saw a post earlier this week polling people with NED after treatment of stage IV melanoma. So I thought to ask how many of you out there have stable non-progression of Stage IV  on this drug combo. My husband has been on it since February with stable disease as of July's scans.

Prior to that he was treated with stereotactic brain radiation surgery x 8 brain tumors on two occasions, Vemurafenib alone, and Vemurafenib + XL888(pre-clinical trial drug) and dabrafenib alone.

His energy level and skin color have returned to his pre stage 4 level on the dabrafenib and Mekinist combo

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Anonymous's picture
Anonymous
Replies 8
Last reply 8/12/2014 - 11:49pm

My wife has stage 3 melanoma which has been excised and has had a sentinel removed which was positive. She also had a PET scan and brain MRI which were negative. Her surgeon is proposing a radical lymph dissection of the lymph nodes surrounding the sentinel. Has anyone skipped the lymph node dissection surgery and gone straight to a non surgical solution like interferron? Did this approach work for you?

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jualonso's picture
Replies 6
Last reply 8/12/2014 - 10:58pm

Hi Folks, 

I have been reading since i was diagnosed Stage IV last february and i have the feeling that many people develop brain Mets after fail on Combo,. . 

Whats your opinion?? 

Is there any study about it?

Thanks a lot for your replies

 

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JerryfromFauq's picture
Replies 6
Last reply 8/12/2014 - 10:35pm

www.sciencedaily.com/releases/2013/04/130423135710.htm
Virus kills melanoma in animal model, spares normal cells
Date:  April 23, 2013
Source:     American Society for Microbiology
Researchers from Yale University School of Medicine have demonstrated that vesicular stomatitis virus (VSV) is highly competent at finding, infecting, and killing human melanoma cells, both in vitro and in animal models, while having little propensity to infect non-cancerous cells.

"If it works as well in humans, this could confer a substantial benefit on patients afflicted with this deadly disease," says Anthony van den Pol, a researcher on the study. The research was published online ahead of print in the Journal of Virology.

Most normal cells resist virus infection by activating antiviral processes that protect nearby cells. "The working hypothesis was that since many cancer cells show a deficient ability to withstand virus infection, maybe a fast-acting virus such as VSV would be able to infect and kill cancer cells before the virus was eliminated by the immune system," says van den Pol. And indeed, the virus was able to selectively infect multiple deadly human melanomas that had been implanted in a mouse model, yet showed little infectivity towards normal mouse cells, he says.

Many different mechanisms are involved in innate immunity, the type of immunity that combats viral infection. van den Pol plans to investigate which specific mechanisms are malfunctioning in cancer cells, knowledge that would be hugely beneficial both in understanding how cancer affects immunity, and in enhancing a virus' ability to target cancer cells, he says.

Melanoma is the most deadly skin cancer. Most melanomas are incurable once they have metastasized into the body. The incidence of melanoma has tripled over the last three decades, and it accounts for approximately 75 percent of skin cancer-related deaths.

I'm me, not a statistic. Praying to not be one for years yet.

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JerryfromFauq's picture
Replies 1
Last reply 8/12/2014 - 3:51pm
Replies by: AnitaLoree

Aspirin has long been known to have cancer prevention effects, but it has not been widely used for this because of concerns about potential harm. Experts have now declared, for the first time, that the benefits of taking aspirin to prevent some types of cancer outweigh the harms. This conclusion comes from a review published online August 6 in the Annals of Oncology. [Daily aspirin is] the most important thing we can do to reduce cancer after stopping smoking and reducing obesity. "Whilst there are some serious side effects that can't be ignored, taking aspirin daily looks to be the most important thing we can do to reduce cancer after stopping smoking and reducing obesity, and will probably be much easier to implement," first author Jack Cuzick, PhD, head of the Centre for Cancer Prevention at Queen Mary's University of London in the United Kingdom, in a press release.-------------------------------------------- ---------http://www.medscape.com/viewarticle/829484

I'm me, not a statistic. Praying to not be one for years yet.

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pasadenagirl's picture
Replies 1
Last reply 8/12/2014 - 2:40pm
Replies by: CHD

Good morning:

 

I was wondering how long it takes for lymph node swelling to go down after a SNB.  I had SNB on June 26th, two locations right under arm and right groin, all nodes were negative.  I have had no problems with under my arm, but I still have a hard bean shaped knot in my groin.  In addition as the day goes on my hip, thigh even knee will feel as if its badly bruised.   There is no swelling or redness it just feels very bruised.  

Thanks

Gwynn 

 

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liam1209's picture
Replies 11
Last reply 8/12/2014 - 1:42am
Replies by: liam1209, DZnDef, Anonymous, Patina, SABKLYN, arthurjedi007, kylez

My 61 year old father was just diagnosed with malignant melanoma. I'm basically trying to find the best melanoma cancer specialist/ hospital in the US or world to treat my dad's cancer.  Would love to know your suggestions. 

More details below:

He is currently abroad and all these tests took place abroad.  I am trying to identify who would be best doctor/ hospital in the US or world  to review his case to date after he gets MRI and PET results next week. I live in Los Angeles and he could stay with me if there is a great hospital near me. He also has family in Seattle.  But in general location is not a problem we are just trying to find best care.  

General oncologist recommended he see a Melanoma specialist.

Symptoms summary:
1. Had swollen lymph node from Feb-June 2014.
2. Lymph node removed via surgery (left side of neck behind and below ear) on
June 18, 2014.
3. On July 21 pathology report from lymph node received malignant melanoma
(Immunochemical testing in USA results: Malignant melanoma
(S100+/SOX10+/NKIC3+/MiTF few+), spindle cell type involving lymph nodes).
4. Still unknown where melanoma originated (possibly from July 2013 nevus but
pathology negative for melanoma) but dermatologist finds no evidence on skin
on July 23.
5. Aug 4, 2014: CT’s (cat scans) of thorax, abdomen and pelvis show two
small (about 1 cm) nodules in lungs and Oncologist recommends PET CT to see
if these are related to malignant melonoma.
6. Cerebral MRI pending (scheduled to take place on Tuesday, August 12th)

**no other symptoms, all blood work good, feels great, no skin or retinal
melanomas evident.

 

Thanks so much!!! 

Liam 

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BrianP's picture
Replies 1
Last reply 8/11/2014 - 11:31pm
Replies by: CHD

Most of us that post on here regularly have at one point or another recommended to a newly diagnosed member to get to a Melanoma specialist and preferably one at one of the 68 NCI designated cancer centers.  This is a great article for why that is excellent advice.  Also has interesting information about what some of the top-level cancer centers are starting to do in regards to genetic testing and "personalized" treatment.  Pretty good stuff.

http://news.yahoo.com/calling-cancers-team-155705775.html?soc_src=mediacontentsharebuttons

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tcell's picture
Replies 7
Last reply 8/11/2014 - 10:30am

Hi all,

- diagnosed with stage IV in Februrary with lots of tumors in lungs, chest, abdomen, liver, bones

- good initial response to Taf / Mek, last scans in May showed considerable shrinkage everywhere

- bloodwork in June already not 100% ok so put staging one month earlier to July 21

- results show considerable growth in chest, lunhs, one liver met shrinking, one growing....bones stable. I got chest pain and cough and I am scared to death which I guess is kind of normal.

Guess that's it for the combo. Discussed with my specialist. Next step will be Ipi and continuation of Taf with just short breaks before and after the infusions. He said that there are good results from an Australian Phase 1 trial with that Combo. He hopes that Taf will put kind of a brake on tumor growth as my burden is rather high until Ipi kicks in  He says it is important to discontinue Mek as this caused severe troubles in combination with Ipi.

next option if something goes wrong will be Anti-Pd1 EAP. I hope, however, not to fail Ipi.

any comments, suggestions and uplifting words are welcome!

Thanks to all of you who are of such great help in dealing with this illness.

Chris

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vicuk's picture
Replies 6
Last reply 8/11/2014 - 5:37am

My friend Helen has just had results from latest scan and all tumours either decayed or too small to measure and are being held stable. She has been been on Dab/Tram trial for 2 years and 1 month and was initially given 6 months to live.

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Anonymous's picture
Replies 9
Last reply 8/11/2014 - 2:04am

Hi!

A friend of mine aged about 60 years has been diagnosed with Melanoma Left Heel with left Inguino Pelvic. She underwent a surgery  which was wide local excision of Heel Lesion with superficial and Deep Ingunial Block Dissection with Left Pelvic Lymphnode Dissection with Heel Defect Reconstruction with Medial Plantar Flap.

Post surgery, doctor has kept her under observation with regular CT scans and blood tests on a 6 week basis with no other treatment of chemotheraphy, radiation therpahy or interferons. I am a bit concerned if this is alright as how will the spread contain without treatment.

Can anyone please advice. Also what all food intake can help contain the spread.

Look forward.

Best

 

God bless you

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Brigitte's picture
Replies 2
Last reply 8/10/2014 - 10:25pm
Replies by: Brigitte, Janner

On tuesday I go get a conservative excision on my upper back for a atypical mole. . I 'm not worried about getting it done but I was wondering about the post op and the healing time.  The only problem with my shave biopsy was the itching.  Sense I will have stiches will I be able to sleep on my back? Will I be able to go to the gym? How long does it take to heal? My shave biopsy took about 2 weeks to heal (where I felt comfortable not putting  vasaline and a bandage on it).  The shave biopsy was done almost 3 weeks ago and its still pink and sometimes itches. I was just wondering if the healing time for the conservative excision will be a whole  lot longer. Im almost thinking of asking my docter to do a wide excision so I know the margins are clear and I dont have to go back and do this again. 

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Mjp's picture
Replies 10
Last reply 8/10/2014 - 12:53pm

I had a mole biopsied last week and my doctor said it is malignant melanoma. When he called with the news I was in shock, and didn't ask any questions. If anyone here can provide me with and advice or information I'd appreciate it. My doctor is gone for this next week so I can't reach him now. 

 

My doctor said that they "got all the melanoma out" during the biopsy and the surgery to remove the surrounding tissue is just a precaution. I'm confused because the entire mole wasn't removed during the shave biopsy, so how do they know they got all of it?

 

What is the surgery like, will I be back to normal the following day? The mole is on my stomach. 

 

I'm 30 years old. I have not been taking care of myself- I don't exercise and I'm not on any kind of a diet. This has scared the hell out of me. I'm going to make changes and be as healthy as I possibly can be. I have so many other moles on my body and I know this is going to happen again. Doctor wants to see me every 3-6 months to biopsy the two worst moles each time and take it from there. I did this to myself, I'm fair skinned with blue eyes and red hair, I used tanning beds regularly in high school and never wore sun screen outdoors. Are there any vitamins I should take, or anything I should avoid? Same with foods, anything that would help? I know it can't prevent cancer, but I feel like I need to do something to help myself. 

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