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.

Expand/ Collapse Topic
 
Replies By
View Topic
Anonymous's picture
Anonymous
Replies 2
Last reply 8/14/2014 - 5:28am

Can anyone suggest the best melanoma specialist and the best hopital in India?

God bless you

Login or register to post replies.

pigs_sty's picture
Replies 2
Last reply 8/13/2014 - 11:41pm
Replies by: Marianne quinn, eric w

Hi,

My wife has just had second infusion of Ipi and we have noticed increase in WBC and neutrophil, both by approx double. Have other Ipi users seen this, is it linked to a postivie response?

 

 

Login or register to post replies.

pigs_sty's picture
Replies 6
Last reply 8/18/2014 - 2:24pm

Hi,

I'm just looking for future options for my wife. Stage 4, BRAF +ve, failed Vem and has now started on Ipi (2nd infusion) so fortunately we have PD1 and possibly TIL to try if Ipi fails. I'm just looking for things I can reasearch in to for the future. So far I have read about:

Anti LAG3

Anti GITR

Anti KIR

Can anyone help with other possible treatments to reasearch? Many thanks

 

Login or register to post replies.

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 

 

Login or register to post replies.

Rocco's picture
Replies 10
Last reply 8/16/2014 - 2:00am

August 11th is my anniversary of being diagnosed.  Just completed 9 years of this journey - all at Stage IV. Thankfully NED since 2009.  Posting this only to give others hope.

Hang in there!

Rocco

IV since 2005, NED since 2009, Ipi responder 

Luke 1:37

Login or register to post replies.

kelvin's picture
Replies 4
Last reply 8/13/2014 - 3:33pm
Replies by: kelvin, dodgedh2

Hi I was wondering if anyone can help with a few things,ever since I finishd radiation therapy for my stage 4 melanoma 9months ago I have been so tired I can sleep for days only waking every now and then for a toilet break,and have been having the madest sweats and also freezing cold chills,I have asked docs about it and they aren't sure why,also found 2 new lumps which my g.p dosnt seem to be worried about,should I be worried or am I jst being paranoid,

Login or register to post replies.

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

Login or register to post replies.

robbier's picture
Replies 2
Last reply 8/16/2014 - 2:21am
Replies by: Jubes, AnitaLoree

I changed oncologist because I felt like I was in a waiting game with my old one.  Well now with the new one, same old waiting game.  I hate the waiting game.  My last appointment was July 24t.  This ws after a pet scan on July 23rd of 2014.  To make a long story short, I am diagnosied with Metastatic melanoma now.  The scan showed a abnormal finding in the right femur near the mid right of h eleg, suppected in the marrow.  then a supped area in the left public area.  My doctor wanted me to have a bone scan come back and see him then talk treatment.  I called fffffffmy new doctors office for two weeks.  To find out someone scheduled this test inOctober of 2014.  I told them no, I need this test asap. Not October.  so I go tomorrow for bone scan back to my new Doctor July 21th.  I will tell him if he dones't want to treat me, please send me to someone that at least I will fell like I  am the number one person at that point in time.  My insides are screaming, had a two day crying thing.  (Maybe it was a pity party).  I am just tired of being on the socalled back burner, and the wait and see appraoch when I have been told Ihave stage 4 melanoma cancer.  So far I have had no treatment. ''

 

The waiting on doctors is the pits.  How in thew orld does anyone get through the wiaitng on doctors without falling apart.  I failed apart waiting.  Arg!!!!  Thanks for letting me sound off.

 

Robbie

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 7
Last reply 8/13/2014 - 7:27pm
Replies by: CHD, Janner, JerryfromFauq, Anonymous

After early melanoma diagnosed 3 years ago, I’ve had many additional biopsies.  Most have come back as nothing, some mild atypia.  There have been a few over the years where pigment has regrown.  They were normal when biopsied before, and look the same normal again now.  Must they be excised simply because they regrew? 

Login or register to post replies.

Leslie'sHusband's picture
Replies 5
Last reply 8/14/2014 - 8:31am
Replies by: Leslie'sHusband, Thandster, Anonymous, odonoghue80

Les had her laproscopic lymphadenectomy (left groin) done on April 15th, and the drain was removed in mid-late June.  She is experiencing a burning sensation in her left thigh at the incision area where the drain tube was, mainly when she bends over or squats down.  I have been able to feel a definite temperature difference in her left thigh vs. the right several times since the drain was removed.  She will be emailing the nurse at Duke about this this morning, but I also wanted to see if anyone here has experienced anything similar.  She is due for her next PET/CT in late September. 

Dave

Login or register to post replies.

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.

Login or register to post replies.

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. 

Login or register to post replies.

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 

Login or register to post replies.

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.

Login or register to post replies.

Pages