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 8/21/2012 - 7:19pm
Replies by: Anonymous

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

Login or register to post replies.

chalknpens's picture
Replies 2
Last reply 8/22/2012 - 10:43am
Replies by: chalknpens, washoegal

I met with a dermatologist  yesterday at Dana Farber in Boston and reviewed my pathologies and surgeries. He reassured me that there is no need for an oncologist at this time. He said that as I've caught the melanoma early, and had it removed surgically, it is unlikely that it will spread to organs. His recommendation is that I continue to see the dermatologist and surgeon regularly to keep up with what may be recurring sites. He noted that the surgeries I've had are healing well.

He basically said that if I stay with the three month schedule of derm visits and surgeries as needed, each melanoma will be caught early enough to be excised completely, as has been done so far. To me, the schedule is daunting, as I am going this Friday to have the last of the first five sites' sutures removed. It is just three months from the beginning of the eight surgeries that these sites took. I will stick with it as long as I can. I wish I could share the doctors' sense of success with each surgery. This is better news than might have been. I'm not ungrateful, just overwhelmed.

I am not perfect, but I am enough.

Login or register to post replies.

triciad's picture
Replies 1
Last reply 8/19/2012 - 2:00pm
Replies by: Anonymous

Does anyone know how to get your dendritic cell count checked?

I was just reading an article in the Journal of Clinical Oncology, and it mentioned that people who had a low dendritic cell count prior to taking Leukine had a better resrponse.  Maybe I should get that checked before starting this medication.  Any words of wisdom would be appreciated!

Thanks for your help!


Login or register to post replies.

JenJen12's picture
Replies 6
Last reply 8/18/2012 - 8:56pm

Hi all,

My name is Jen and i used to come on this site all the time. I still read posts on a weekly basis but unfortunately i now need help and advice.i was diagnosed stage 3a  from primary on left foot by toes 2.5 mm. I had 4 cells in my sentinel node  on left thigh and did a year of interferon which i handled just fine.  I just had my 3 year NED anniversary with a PET/CT that followed 2 weeks later. Unfortunately my onc called yesterday and said there was a hot spot on the right side of my body that had a high suv of 4.9. It is near my groin, bladder and colon. So this would move me to stage 4 :( They couldnt pin point it though because it did not show up on ct. It is very likely melanoma because of high suv. No other spots showed up in body. I had an MRI yesterday around 5 pm to further investigate. I have not heard back from my oncologist which i'm sure is bad. I leave for Europe tomorrow for two weeks. I was going to cancel but i am going to go still and deal with all of this when i get back.

What do you think my next step would be? I don't have the Braf mutation either. Surgery adn then IL-2 ? Yervoy. I handled interferon really easily. I am a 29 year old female that was diagnosed at 26. Any advice on what my next steps should be are greatly appreciated!

Thanks so much,

Jenjen 3a now probably 4

Login or register to post replies.

triciad's picture
Replies 13
Last reply 5/6/2013 - 10:32am

Hi Everyone,

I had 2 more surgeries this summer because of intransits/satellites.  I will be restaged in a few weeks.  I'm not sure if I'll stay at 3C or move to 4...time will tell.  I think I will be doing a little radiation in the next few weeks.

I am supposedly NED (although no recent PET), so there is not much out there for treatment.  My one oncologist wants me to do Leukine.  My other oncologist says it's nothing more than snake oil and I should just watch and wait.  I am so confused!

If any of you have any information or experiences to share about Leukine, I would be truly grateful.  As always, I look to my MPIP family for real advice.

Thanking you in advance for any help you can offer.  Additionally, let's keep working together to kill the beast!


Login or register to post replies.

Anonymous's picture
Replies 9
Last reply 8/21/2012 - 2:39pm
Replies by: kristine, Anonymous, Harry in Fair Oaks, Jeff's Mom

I am at a crossroads and looking for advice, so please feel free to chime in. I am about 1.5 yrs NED but didn't have the typical diagnosis. I had a small bump removed which pathology suggested was metatstatic melanoma. I had seen 3 oncologists in Chicago area....Dr. Marilyn Evrard, Dr. Howard Kaufman and Dr. Jon Richards. All had/have varying opinions. Dr. Evrard not being a melanoma specialist suggested seeing Dr. Clark at Loyola, Dr. Gajewski at U of C or the two aforementioned doctors as they are the regional experts.Dr. Evrard had the scans performed(no mets anywhere) concurred with doctors and said I potentially have a good prognosisbased on her dealings with melanoma but I'd be better served by seeing an expert. Based on nisurance I saw Richards with a second opinion from Kaufman. Since there is no primary leison I'm lumped into a unique group of unknow primary. Now for the adivce from you, the valiant warriors out there. Not to create prejuidice against either doctor I will only say that one feels I'm stage 4 with uknown primary and require extensive scanning (3 months CT of Chest down to Pelvis & semi annual brain MRI). Risk of recurrence is low/medium.


The other feels that there possibly was no primary or my body had immune reaction to destroy it and I'm low risk for recurrence and require semi annual scan of chest & neck. Let me mention that both had my original path slides reviewd and both were suggestive of metastatic disease but didn't say metastatic. Dermal melanoma has been thrown around and I have researched it and it seems a possibility but again nothing is concrete and as I have realized anything is possible with this ugly disease...just doesn't seem fair. I don't post much here but I do follow and check to see how people are doing. I figured with all the good advice and support I see on here, someone can help me with making a choice in regards to which doctor's follow up plan do I go with. I'm scared, confused and lost. I just want to stay on top of this but not subject myself to scans etc that may be harmful in future.


Finally anyone familiar with hematocrit on blood test? Mine has been low on last 2 tests but not bad....not bad enough for doctors to be concerned. Anyone have any ideas on that?


Stay the course and fight the fight. You're some of the bravest people out there!!! God bless!!!

Let's work for better treatments....for a cure!!!!

Login or register to post replies.

Anonymous's picture
Replies 3
Last reply 9/9/2012 - 10:04am
Replies by: parkmk80, Janner, Anonymous


In the last year I have had two excisions on two moles that were "above" moderate in changing (mild, moderate, melanoma). Were these going to change into melanoma or are they removed for precautionary reasons?My doc said that they may never change or they can change tomorrow.  Because I have had two like this, how high are my chances in getting melanoma? I have close to fifty moles and freckles, 15 dysplastic nevi. I have already taken of 13 and two need further excision. I'm trying to learn more about this. THank you for you time.



Login or register to post replies.

Anonymous's picture
Replies 9
Last reply 5/4/2014 - 5:35pm

My husband was diagnosed 2 years ago with stage 4 melanoma.  The tumor was in his lymph node under his right arm.  The PET scan only showed the cancer there. They've not been able to find where it started. After several months of intense radiation and chemo combined, they said there was nothing they more they could do. The tumor was too big for surgery.

He won't go back to the oncologist because he already was told there was nothing they could do. Surely there is a melanoma specialist in the State of Alabama who could find a treatment to help.  He can feel it growing and spreading.

Anybody have any suggestions?

Login or register to post replies.

bikerwife's picture
Replies 2
Last reply 8/17/2012 - 7:21pm
Replies by: gabsound, Fen

Monday was an awful day. Went in at 715 for a 4 hour procedure for 2 mets turned into a 9 hour procedure for 6 mets. Dr said they got them and they were barley visible. Still I'm thinking its spreading everywhere mon was rough by tuesday we both were emotionally exhausted.

Wed morning we go in for kidney scan and chest cavity scan. We walk in dr office and dr high 5s Lynn. I'm still wondering so he shows me the scan from 3 months ago it was 9.8 cent and its glowing then he shows me new one it not glowingi say and dr says that's cause its gone. What's in chest cavity is almost gone also we shared lots of tears and hugs with our dr. This drug is awesome.

Gamma knife can be used again and they will continue to monitor brain closely but for know we smile. Lynn says he's slowly crawling back. He says keep fighting keep praying and keep beleiving.

Lots of love
Lynn husband to bikerwife

What God leads u to he will. Lead you through

Login or register to post replies.

Replies by: audgator, LynnLuc, Theresa123, Anonymous, Tim--MRF, Linny

My oncologist told me to "look up" anti PD 1.  I was wondering if someone could explain it to me so I could understand it.   Like to a 2 year old or something;)   I need the information to make a decision about my care.




Stage 4

Every day is a miracle.

Login or register to post replies.

MattF's picture
Replies 27
Last reply 8/28/2012 - 7:59pm
Replies by: MattF, Snickers60, Minnesota, LynnLuc, Erinmay22, Janner, Anonymous

I'm a 42 yo white male and I was diagnosed 13 August with a call from my dermatologist. I had a mole on my cheek forever but it started growing and even bleeding within the last 3 years, so I finally went to the doctor.

I have been going to other doctors, PCP and Neurologist for headaches and vision changes for the last 12 months. These have been guessed at as Cluster Migrains. Now with pathology report diagnosis I'm uncertain. 

Malignent Melanoma Tumor - Thickness unknown but over 1mm, Ulceration unknown, Mitotic Index 5/mm2, Clarks level IV-V, loosely Pathological staged as T2b

My dermatologist didn't think it was Melanoma so he did a shave biopsy rather than a punch. For this reason the pathologist couldn't get an accurate thickness, among other important pieces of information.

Now I'm just waiting on Surgical Oncology to call to make initial appointment.

My question is beyond brain tumor is it possible my melanoma has pread under my skin in a horizontal fashion creating headaches and sensitivity to touch?

Login or register to post replies.

CarolA's picture
Replies 2
Last reply 8/17/2012 - 9:54am
Replies by: christie

I can only think of Bonnie Lea who goes to Princess Margaret hospital, I believe.

But I know there are other warriors who might be able to direct Christie in the

right direction to find some alternative care for her husband.   I am sorry that my

mind does not recollect specifics of where to go in Canada, what IS where, in which

province, nor can I remember a specific name of someone on the board.

Hope this spurs something.     We are on the Canadian border and I do know that

Canadians come to Roswell Park Cancer Institute in Buffalo----but at what expen$e,

I am not certain.



Login or register to post replies.

ed kv's picture
Replies 2
Last reply 8/18/2012 - 8:51am
Replies by: Cate

My wife was diagnosed today with stage 4B melanoma.  Primary location in mid back but heavy in right armpit lymph and several spots in R lung.

We live in Michigan but are moving to Houston next week so we can go to MD Anderson.  I'm hoping there are trials there that might give us a chance.  So many details to work through with the move AND the medical stuff!!!! 

Login or register to post replies.

ed kv's picture
Replies 5
Last reply 8/22/2012 - 1:13am

My wife was diagnosed today with stage 4B melanoma.  Primary location in mid back but heavy in right armpit lymph and several spots in R lung.

We live in Michigan but are moving to Houston next week so we can go to MD Anderson.  I'm hoping there are trials there that might give us a chance.  So many details to work through with the move AND the medical stuff!!!! 

Login or register to post replies.

christie's picture
Replies 7
Last reply 8/19/2012 - 12:25pm
Replies by: ValJaneMB, christie, bcl, BonnieLea, Anonymous

Does anyone have any suggestions on what I can ask or suggest to our doctors?  My husband was diagnosed with Stage 3 Melamona in 2010.  He did the year of Interferon and completed it November last year.  He had been doing very well until recently.  He was having problems so we went to the doctors and a ct was done.  He has a 3 cm mass in the front part of his brain.  They have put him on steroids but to me, it doesn't seem like they are helping (he is in the hospital).  He was scheduled for the Gamma Knife but we found out yesterday there is a tumor in his spine.  They have now told us that the Gamma Knife won't happen and are just going to make him comfortable.  They are doing radiation on his spine but that is it. 

Is there something that might help him?  We are in Manitoba, Canada.  No Melanoma center, just an Oncogist in Winnipeg that lets the Cancer Center where we live know what to do.  I feel helpless.


Login or register to post replies.