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
Gene_S's picture
Replies 1
Last reply 5/23/2012 - 11:18pm
Replies by: H555



SCREEN: Melanoma Deaths Reduced by Half in Largest Study Ever


Elsevier Global Medical News, 2012 May 18, B Jancin

In the Pipeline: BRAF-Plus-MEK Inhibition Slows Melanoma


Elsevier Global Medical News, 2012 May 17, P Wendling

Women 30% More Likely to Survive Melanoma Than Men


Elsevier Global Medical News, 2012 Apr 30, MA Moon

Cyclops Lambs Played Important Role in Vismodegib's Approval


Elsevier Global Medical News, 2012 Apr 4, D Mcnamara

Limb Perfusion for In-Transit Melanoma Reduces Distant Recurrences


Elsevier Global Medical News, 2012 Mar 30, N Osterweil

Melanoma on Scalp Signals Worse Prognosis Than Other Sites


Elsevier Global Medical News, 2012 Mar 29, N Osterweil

Extramammary Paget's Needs More Than Mohs


Elsevier Global Medical News, 2012 Mar 21, B Jancin

New Vemurafenib Data Highlights Long-Term Melanoma Survival


Elsevier Global Medical News, 2012 Feb 22, MA Moon


Expert Opinion

Treatment of Brain Metastases in Patients With Melanoma

Free Journal Content

Lancet Oncol, 2012 Mar 27, R Fisher, et al


Journal Scans: Research

Adjuvant Radiotherapy After Lymphadenectomy for Melanoma


Lancet Oncol, 2012 May 9, BH Burmeister, et al

Possible Link Between B-Cell Lymphoproliferative Disorders and Merkel Cell Carcinoma


Br J Haematol, 2012 May 1, T Tadmor, et al

Increased Risk of Non-melanoma Cancers With CDKN2A Mutations


J Natl Cancer Inst, 2012 Apr 24, B Mukherjee, et al

Association of Galectin-3 Expression With Melanoma Progression and Prognosis


Eur J Cancer, 2012 Apr 1, ER Brown, et al

Ipilimumab in Patients With Melanoma and Brain Metastases


Lancet Oncol, 2012 Mar 26, K Margolin, et al


Journal Scans: Review

Treatment Advances in Basal Cell Carcinoma: Hedgehog Inhibitors

Free Journal Content

Semin Oncol, 2012 Apr 1, R Kudchadkar, et al

Primary Malignant Melanoma of the Head and Neck


Oral Oncol, 2012 Jan 20, AK Vikey, et al

Emerging Molecular Classification System for Melanoma Treatment


Lancet Oncol, 2011 Sept 1, E Romano, et al



Personalized Medicine: A Long Way to Go

OncologySTAT Video Network

EJC News Focus, 2011 Nov 1,

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

Login or register to post replies.

Cari728's picture
Replies 4
Last reply 5/23/2012 - 12:39pm
Replies by: Eileen L, natasha, Linny

I was just wondering if any of you took any natural supplements after being diagnosed with melanoma.  Since my dad was diagnosed we have been  flooded with people suggesting natural teas and supplements that help fight cancer and some that help deal with depression.  He has started taking some and I'm afraid we might be hurting him more than helping.

Login or register to post replies.

Anonymous's picture
Replies 6
Last reply 5/23/2012 - 9:47am
Replies by: natasha, teri0915, Anonymous, Janner

Is it normal to still feel pain sometimes (not bad pain, sort of dull pain) in the WLE scar and even under the arm near the SNB site?  It's almost 10 months after surgeries.  I don't care about the pain, just want to be sure that isn't some sign of a recurrence, etc..  I know that would not usually present itself as pain, right?.

Login or register to post replies.

teri0915's picture
Replies 3
Last reply 5/23/2012 - 9:14am
Replies by: Janner, teri0915, Anonymous

Ct resluts so no growths!! Mri next month will show how the brain and spine mets are doing. Finally heard back about the three biopsies i had almost two weeks ago. One is a normal mole the second is mildly atypical, excision scheduled in June and the third on my melanoma scar is moderately atypical so excision also scheduled for June.
Oddly enough though my platelets and white cells are strangely low so i can not start my next cycle of temodar, which should have started tonight, until my counts are back up. Hopefully that will be soon!
Keep your chins up everyone!!
Best wishes

Live for today because tomorrow isn't guaranteed. Think positive, it could be worse!

Login or register to post replies.

rrrule32's picture
Replies 6
Last reply 5/23/2012 - 8:28am

Hello all, my name is Travis and my wife Kaitlyn has Stage 4 melanoma.  She is 23 years old.

I've been reading about a highly effective drug called Dabrafenib.  It has not yet been approved by the FDA.  I think we all need to ban together and get on the FDA to get this drug approved so it can start saving young lives.  

Login or register to post replies.

Janie64's picture
Replies 4
Last reply 5/23/2012 - 8:27am
Replies by: Anonymous, Eileen L, Janie64, washoegal

HI and Good Evening.  I just found this site and was hoping I could get some information regarding my Mom, who is 71.  Her background is this:  She has been in remission for 20 years.  Just over a year ago they found disease in her left lung.  They removed the upper lobe of the left lung.  She had a CT scan about 4 months ago and all was clear.  They did another scan about 1 month ago and found disease in her spleen and stomach. 

Yesterday she was in the hospital having laporoscopic look see and they closed her back up without removal of disease.  They said if they removed her spleen and ALL of her stomach they still would not have gotten all the cancer. 

I know my time with Mom is limited, but I cannot find out a time statistic.  I was hoping someone could share with me what to expect.  Is average time based on this being so advanced 4 months, 6 months etc.  I know the answer will be a sobering one, but I would like to be better prepared.  I am flying home in about three weeks to see her. 


Login or register to post replies.

Anonymous's picture
Replies 2
Last reply 5/22/2012 - 11:39pm
Replies by: noisy77, Janner

Oh no!  I got a total sunburn!  In 1 area, where I must've missed the sunblock, in about a 5 inch area.  It's a patch of FRIED skin.  No moles in that area.  Should I worry?  Schedule more frequent derm visits?  Have history of melanoma stage 0 diagnosis.


Login or register to post replies.

eerye70's picture
Replies 10
Last reply 5/22/2012 - 10:46pm

Ok, i have an appointment today. I had in situ removed from right shoulder november 2011. Now i have a mole on my right leg that has changed and i am seeing the dr today. I also have an enlarged lymph node on that side and pain under the arm on right side. I have found out in the last week that i have an uncle and maternal grandmother who have had melanoma, my uncle died from it. I just think i am wandering into that crummy place where you are super aware of everything. That every pain, every lump or bump or sore throat or headache is going to make me freak out.

I have a headache every day, literally for a solid month. But it is also the worst allergy season on record. I am so tired i literally want to sleep every single day. all day long. I just think i am starting to get too paranoid.

I tried to look up some pictures of subq melanoma to see/compare for comfort. But all i see are the typical moles with changes and that is not helpful, because my mole looks very much like some of them. I cant decide if my lymph node is a lipoma or something else.


I dont know, but how do you get through it? How do you turn off the mind, how do you stop dwelling on these things and stop obsessing over it? I am so much better than i was when first diagnosed. I sleep at night now. I no longer have anger and anxiety, or not so much anxiety. the anger is alot better.

but in order to enjoy the benefits of being in situ, i really need to be thankful of in situ, but if all i do is focus on the "holy craps" how do i? any advice, suggestions?

Also, i didnt tell my family. Aside from my husband and a few close friends, i didnt share with the sibs or mom. I just don't want to answer a ton of questions about it. Did anyone else keep this sort of thing to themselves? any thoughts? I just feel somewhat lost, What now?


Time to put on your big girl panties and deal with it!

Login or register to post replies.

Drew N's picture
Replies 3
Last reply 5/22/2012 - 2:49pm
Replies by: Drew N, lhaley, melmar

Nice to be able to repeat that title. I went to MDA and had the full lookover Monday, including x-rays and CT. All clear. That's three years out from the end of 30 days of INF. I am very, very grateful for the days I've had, and even more grateful for promising treatments in case I need some help.


Login or register to post replies.

mommydog's picture
Replies 1
Last reply 5/22/2012 - 2:18pm
Replies by: himynameiskevin

My husband is in the hospital due to infection of unknown origin, raised liver enzyme levels (bilirubin) and excruciating pain in his lower back, sacrum. We thought this might be due to a new met in the sancrum, but nothing has changed in that area ( there is a met, but no noticeable change). Has anyone had experience with Zelboraf causing either of these conditions, that is liver problems and/or lower back pain?

Login or register to post replies.

Snickers60's picture
Replies 1
Last reply 5/22/2012 - 12:16pm
Replies by: Linny

I am happy to post that after a month on ZELBORAF, Wayne has no more fever !   He does have some FEET PAIN and JOINT pain that is pretty bad, but

we have found him some relief doing Epsom Sats Soaks.    He is also taking a B-100 vitamin which seems to have helped him a lot with energy.  Also

taking Tumeric.   His hands and feet swelled so much over the weekend he couldn't wear shoes.....but it is slowly going down now.  He is still working.

His tumors had SHRUNK from 2.6 to 1.8 and from 1.6 to 1.1 at last weeks MDA visit and CAT SCAN !    YESSSSSSSS and AMEN it's working !!!!!   Hope you all have a tolerable day with limited pain and side effects.

Nancy (devoted wife of Warrior Wayne)

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

Login or register to post replies.

Anonymous's picture
Replies 15
Last reply 5/22/2012 - 8:40am

If one gets a SLNB and it is negative, what really does that mean?  People can get negative node result and still develop metastasis later, correct?  I'm not sure how that happens if nodes are negative initially.

Login or register to post replies.

vickirs's picture
Replies 41
Last reply 5/21/2012 - 6:35pm

Dr Rene Gonzalez has opened thie study at univ of colorado.  After failing many trials including compasionate us ipi, i am finally responding to something.  2 weeks ago i was told i had about 2 months to live.  I started this trial then instead of hospice and there is already a noticable improvement.  I lost 13 pounds in fluid wait above my liver and down my right leg.  I started readintg again after months of not being able to.  my upper abdonan no loner feels 10 months pregnat.  when dr gonzalez felt aound today he can tell there is definately shrinkage going on.  It doesn't matter if you are BRAF or not.  I am not BRAF.  And it is as simple as taking pills once a day. Uf any buddy else is on this trial let me know.  up unti know there have only been about 50 people on this study but with such great results they are expanding the the trial.   This definately brings new hope to me.

melanoma is a word...not a sentence

Login or register to post replies.

rbruce's picture
Replies 13
Last reply 5/21/2012 - 5:59pm
Replies by: Anonymous, TracyR, WendyR3, keesvp, Bubbles, melmar, audgator, LynnLuc

Please list which trial you're on, date started, and where and next scans, plus any wise effect or results info you want to share.  Lots of us are on this and some of the 12 week scans are showing great results.  

Robert B. started March 15, UCSF, scans June 5. Just had 3rd infusion, some bone and muscle ache and slight rash.  Not a problem.

The circumstances of our lives have as much power as we choose to give them. David McNally

Login or register to post replies.

Anonymous's picture
Replies 18
Last reply 5/21/2012 - 2:07pm
Replies by: Anonymous, LynnLuc, washoegal, natasha, deardad, Bonnets, Janner

I'm confused by my mitotic rate.  First 2 path reports did not identify any dermal mitoses.  Next 2 reports (yes, 4 opinions all on the same biopsy slides, call me thorough) did identify one dermal mitotic figure and listed the rate as <1.  So, is <1 the same as 0 or the same as 1?  Does that move me from 1a to 1b?  Does that put me into the higher risk category of thin melanomas for having <1 instead of 0?  When I went back to the path that did not identify any dermal mitoses, they said, "there are thousands of cells on a slide and it is certainly possible that a single mitosis is seen by one pathologist but not by another. Sometimes there are multiple sections and not every section is made available to the consulting pathologist."  Doesn't make me very confident then in my WLE/SLNB path report of "clear" if things can be missed.  Anyway, my question is when you read all these studies about different risk categories of thin melanomas based on mitotic rate, where does <1 fall?  Is that 1?  Is that considered 0?  The path that identified the mitotic figure also said, "We did identify a mitotic figure in the invasive component of the lesion, therefore regarded the lesion in "vertical growth phase". The issue is further complicated by the presence of adjacent nests of nevus cells; namely it is very difficult to identify each melanocyte in the dermis whether it is a benign "nevus cell" or part of the melanoma, although p16 immunostain, together with the histologic features, was somewhat helpful in this context (highlighting the nevus cells). There is early invasion into the papillary dermis mingled with a residual nevus. Additional immunostains were performed to further characterize the lesion and show that the proliferation index of the melanomatous component is slightly increased (5%) as compared to the nevus component (1%). There is marked reduction of immunoreactivity of HMB-45 expression and no significant loss of p16 expression in the dermal component of the lesion. "  I have no idea what most of this means or where it puts me w/ my mitotic rate.  How can it be <1?  Isn't  it either 0 or 1 (or a whole number greater than 1)? 

What I'm really trying to ask/get at is this:

I read a study by Gimotty and DuPont.  Before, I could say since my melanoma was thin and 1a that I could look at the ninety-something % survival rates and feel ok.  But, after reading their study, I would fall into the 31% 10-year metastasis rate, because my mitotic rate is greater than 0.  I'm male, VGP present, mitotic rate greater than 0.  So, even though tumor thickness is the most important prognostic factor and mine was thin (0.3mm), I still fall into the high-risk of thin invasive melanomas.  This is why I'm trying as much as I can to really get at this mitotic rate and what it means for me and my risk.  It seems to really put me in a different risk category once the mitotic rate is anything greater than 0, even if less than 1.  Or, would I fall into the "patients with VGP lesions that had MR of 0 for whom the rate was 4% ".  Is my mitotic rate of <1 considered to be greater than 0 or just 0??

This prospective cohort study included 884 patients who had thin invasive melanomas. A tree-structured analysis of 10-year metastasis was used to develop a new classification scheme. The overall 10-year metastasis rate was 6.5%. The prognostic tree defined four risk groups: high-risk: men with vertical growth phase (VGP) lesions that had mitotic rates (MRs) greater than 0, and for whom the 10-year metastasis rate was 31% (22% to 42%; n = 90); moderate-risk: women with VGP lesions that had MRs greater than 0 and for whom the rate was 13% (9% to 18%; n = 136); low-risk: patients with VGP lesions that had MR of 0 for whom the rate was 4% (2% to 7%; n = 247); and minimal-risk: patients with invasive lesions without VGP for whom the rate was 0.5% (0% to 1.2%; n = 411).


Login or register to post replies.