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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archer's picture
Replies 11
Last reply 4/15/2011 - 12:18pm

I want to thank all of you that said, "run, don't walk to a specialist".  We did just that yesterday and what a world of difference compared to our first visit with an oncologist.  We even had someone on here provide her email address because she goes to the same doctor and her statements about this doctor were correct.  We left feeling good about our decision.

Tomorrow morning, my wife is scheduled for her PET scan, meeting with a surgeon and then the specialist.  Talk about making things happen! We are grateful to all of you for this advice as well as all the other advice you have graciously shared.  It has helped us get get a direction with all this mess.  Tomorrow will be 14 days from the diagnosis.  I can say that I actually slept 7 hours last night.  That is the first time in the two week period.  I know you guys will understand what I mean by that but hopefully that is the sign of good things to come.  

Now, our prayers, thoughts etc are directed toward a clear negative scan tomorrow.  That would be a gift.

Again, I can't thank all of you enough for your help.  Last week was disaster, a blur and I was a notch above a zombie (at least when alone) but this week is a tad better thanks to a lot of people such as yourself praying and sharing.  

I will keep in touch.

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I believe ONCOVEX uses GM-CSF and a dormant strain of the herpes simplex virus and is in Phase III Clinical trials.........Hawaii Bob How Absent Reoviruses Kill Cancer

ScienceDaily (Feb. 21, 2011) — Reoviruses are successfully being used in clinical trials to treat patients with cancer. Not only does the virus cause cancer cells to die, it also forces them to release pro-inflammatory chemokines and cytokines, which in turn causes the patient's immune system to attack the disease. New research published by BioMed Central's open access journal Molecular Cancer shows that reovirus infected cancer cells secrete proteins which, even when isolated, result in the death of cancer cells.

Normal human cells are protected from reovirus infection by a protein called PKR. However a cellular signalling protein (Ras), which can block PKR activity, is abnormally activated in many types of cancer and provides a window of opportunity for reovirus infection. A multi-centre study, involving labs in the UK and America, collected growth media from reovirus infected melanoma cells. The researchers showed that this media contained a range of small pro-inflammatory proteins, including an interleukin (IL-8) and Type 1 Interferon (INF-β), which recruited and activated white blood cells, specifically Natural Killer (NK) cells, dendritic cells (DC) and anti melanoma cytotoxic T cells (CTL).

Whilst the exact details behind this mode of action of cell signalling in response to viral infection are unclear, the release of cytokines was dependent on both 'inactive' PKR and a specific nuclear factor (NF-κβ). According to Prof Alan Melcher, from Leeds Institute of Molecular Medicine, "Bystander immune-mediated therapy may well be an important component in the treatment of cancer by reoviruses, and may have potential in treating cancer even in the absence of live virus."

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ScienceDaily (Mar. 24, 2011) — A breakthrough discovery by the University of East Anglia (UEA) and Children's Hospital Boston promises an effective new treatment for one of the deadliest forms of cancer.

Reporting in the March 24 edition (front cover story) of the journal Nature, the researchers found that leflunomide -- a drug commonly used to treat rheumatoid arthritis -- also inhibits the growth of malignant melanoma.

Melanoma is a cancer of the pigment cells in our skin. It is the most aggressive form of skin cancer and, unlike most other cancers, incidence of the disease is increasing. More than 10,000 patients in the UK are diagnosed with melanoma each year. If caught early, surgery can be used to safely remove the tumour but the chances of survival for patients whose tumour is already spreading are very low. Around 2000 people a year in the UK die from malignant melanoma because the cancer has returned after being removed surgically.

UEA scientists Dr Grant Wheeler and Dr Matt Tomlinson conducted a rigorous screen of thousands of compounds, looking for those that affect the development of pigment cells in tadpoles. They identified a number of compounds that affected pigment cell development and have now shown with their US collaborators at Children's Hospital Boston that leflunomide significantly restricts tumour growth in mouse models.

And when leflunomide is used in combination with PLX4720, a promising new melanoma therapy currently undergoing clinical trials, the effect was even more powerful -- leading to almost complete block of tumour growth.

The next stage is for clinical trials to be conducted into the use of leflunomide to fight melanoma. Because leflunomide is already licensed to treat arthritis, this process should be faster than usual and a new treatment for melanoma could be available within around five years.

"This is a really exciting discovery -- making use of an existing drug specifically to target melanoma," said Dr Grant Wheeler, of UEA's School of Biological Sciences.

"Deaths from melanoma skin cancer are increasing and there is a desparate need for new, more effective treatments. We are very optimistic that this research will lead to novel treatments for melanoma tumours which, working alongside other therapies, will help to stop them progressing."

The novel work, which was partly funded by the Biotechnology and Biological Sciences Research Council (BBSRC), highlights the strength of carrying out large screens of compounds in developmental model systems such as the Xenopus tadpole used at UEA and the zebrafish used at Childrens Hospital Boston. The hope is that this approach will lead to the discovery of further compounds to treat different diseases in the future.

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premedy's picture
Replies 2
Last reply 4/14/2011 - 10:23pm
Replies by: MichaelFL

Just had a cat scan done with the following results

 A new .4cm nodule in the left lower lobe is noted.  New focal patchy and ground glass opacities in the right lung are noted.


Spleen - Mild splenomegaly is increased measuring 14.2 cm in craniocaudal dimension, previously 12.7cm.

Abdominal lymph nodes are increased in size and number.  Subcentimeter mesenteric lymph nodes are also increased in size and number


Has anyone seen anything like this with the lungs.  I've never heard the term patchy ground glass opacities but it doesn't sound good.  Has anyone dealt with enlarged abdominal nodes?


thanks in advance.

"without the bitter the sweet ain't so sweet"

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Hi there.

I am starting on the MDX-1106 trial next week. I just wondered if anyone on the boards is part of this trial? I'm hearing really good things about it and it sounds like the side effects are pretty small. I think doctors have a tendency to play down the side effects sometimes. So, I was wondering what other people have experienced with this drug.



Be kind, for everyone is fighting a great battle. -Plato

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Anonymous's picture
Replies 7
Last reply 4/14/2011 - 7:22pm
Replies by: Anonymous, Janner, MichaelFL

Hi everyone

Sorry to bother with these seemingly petty issues (is there somewhere else I should be posting?)

I have posted lately about a few things: my toe light tan freckle that was moderately atypical, my sister's UNchanged mole that was severely atypical and the fact that I have hundreds of moles, many weird looking, many normal looking. I've had everything from benign- to mm in-situ. Sister also had in-situ. We have atypical mole syndrome.

So I have two issues: I am scared out of my mind that something on me is melanoma whether it has changed or not. Whether it is innocent looking or not. Clearly there are no rules with this. I have 5 moles (biggest might be 5mm, others smaller) on my neck. They haven't changed but look slightly atypical. Well, somehow i googled something and read that "Head and Neck Melanomas have Poorer Prognosis" -- twice as bad, Would it be crazy to get 5 moles off my neck for peace of mind? Has anyone heard of this or had melanoma on their neck or scalp? OR do any of you have moles on your neck? Is this a normal spot?

This leads me to my next problem: how do you handle this anxiety? I have been great about it for years (been dealing with this for 20++ years) but as you can see I am in the midst of a panic about it. I dont see the derm for 3 weeks and I can barely keep track of what I want off!
(the little dark one that always bothers me, the bigger slightly atypical ones on my neck? the slightly changed on neck, changed one since pregnancy, but not in the last two years) It goes on and on! She won't remove them all I'm sure, but where do I draw the line? The whole "Change" thing has been thrown out the window with my sister's severely atypical...

Other times I think why am I leaving anything questionable when it would be melanoma. Why not get 10 off and be done? (until my next scare!)


Any advice on how to balance anxiety and being vigilant w/out going overboard?

OR is is smarter to just get the 10 scariest ones off in the next few months and have peace of mind



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chatrbox424's picture
Replies 4
Last reply 4/14/2011 - 7:06pm

In August of 2010 I found out I had melanoma and was a month pregnant one day apart so needless to say its been a CRAZY 9 months as it is for anyone facing this diagnosis!!  My thoughts and prayers first off to everyone on here fighting this ugly disease!!!  I've loved reading all the positive attitudes and stories though, its very uplifting!!!! :)  

To get to my first dermatologist whom I've since left due to feelings of discomfort on my part.....called and told me my results over the phone while I was on vacation.  Upon returning from vacation I immediately had an appointment in which he told me that he got everything with the punch biopsy but felt it necessary to take a wide excision (1cm all the way around).  He also told me the melanoma was .5mm (I'm assuming he meant depth but not sure) and was a Stage1 with a great prognosis and extremely low chances of recurrence....all great news considering the diagnosis at hand.  He only wanted to see me every six months and wasn't very thorough with the full body check and privacy was an issue in his office (at least for me).  So I sought out a clinic that seemed to better suit my needs/wants that said he did the right thing with the wide excision that they would have handled it the same way so that was comforting.  However they will see me every three months along with yearly liver function tests, lung x-rays and eye exams!!  

Upon them receiving my records from the first dermatologist I asked for more specifics on my diagnosis such as mitosis, ulceration, etc. as I know these things have an effect on she showed me the report in black and white and it plainly said the melanoma was in situ, unulcerated, and 0 mitosis....which I know are all wonderful news....but I'm just confused by whats written in black and white and what my first dermatologist told me....why the difference in diagnosis????  Just made me wonder...not sure if its anything to be concerned about or not so any input would be appreciated.

Thanks A

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adgesoph's picture
Replies 3
Last reply 4/14/2011 - 10:25am
Replies by: amberhulin, deffk1105, Cate

My dad went to get scanned after only being on the braf trial for brain mets at Vanderbilt and all of his tumors grew- he has some in his lungs, brain, neck and pelvis.  I'm just so surprised that he didn't respond at all.  He was feeling so much better a week after he started.  How can that be?  

So now they've admitted him to the hospital because his brain mets have grown substantially and caused him to have weakness on the left side of his body (this all happened within the last 2 days and thank God he had just arrived at Vandy because the doctors said he could've died at any minute with all the pressure from the tumors in his brain.  He is getting steroids now for the brain mets and they are deciding on gamma knife or wbr-starting tomorrow.  Obviously he's out of the trial.   Just sucks.  We were so excited when he finally got in it and it didn't even work.  

So after the brain is taken care of it's either ipi (if he has time to wait for it to work) or another trial.  Thankfully Vandy has several.  He failed interferon, IL-2 and now braf.  

I'm just really upset for him right now.

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gabsound's picture
Replies 5
Last reply 4/14/2011 - 9:30am

Hi. Unfortunately (?fortunately) the clinical trial Dr. Samlowski ( I love that guy by the way) mentioned putting Interferon head to head with IPI is not opening in time for me. With my lesion being ulcerated he doesn't think I should wait another month or more. I asked tons of questions and will start my Interferon treatments on Monday. I have to say, I had a sense of peace and a feeling of optimism after making that decision. I initially thought I would watch and wait, but had a nagging feeling. Insurance company delayed approval as long as they could. I will get me picc line put in tomorrow. I'm anticipating feeling pretty bad and have lightened my schedule to try working 1/2 days. Stocking up on Alleve, tylenol, ibuprofin.

I also saw a therapist at a lymph clinic today. I have some swelling in my right leg which extends to the foot. Next week I will learn about massage and get a tighter stocking for that leg. Hope that will keep it from getting worse. I am 7 weeks from my surgery WLE inside of right knee and lymph nodes removed from right groin.

Thanks to the post of "Interferon Glad you did it?' Great replies!

Best of luck to all of us!!


Julie in Las vegas 3b

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shellebrownies's picture
Replies 11
Last reply 4/14/2011 - 8:36am

Hello all,

My husband's issues with melanoma started in about May 09. He is fair skinned with many irregular freckles. We noticed a new freckle on his right shoulder and that it appeared one corner of it was starting to get slightly darker than the rest. As a precaution, he went right away to his PCP. His PCP said not to fool around and sent him right to a surgeon. Surgeon thought it was nothing but did the biopsy anyway: the darkening corner was in situ melanoma. Early June 09, he had the lesion and surrounding area removed. Biopsy of the removed material showed no other signs of abnormality or melanoma. After the surgery and test results, the surgeon said he should be all set, but that he should see a dermatologist every 6 months to keep an eye out for anything new. It was not recommended he see an oncologist because of how early they caught the melanoma and because there was none found in the biopsy. Hubby has gone to see the dermatologist as recommended and followed up with him on a regular basis. To date, no new lesions had been found, nor any issues with original site. My husband has been basically healthy ever since.


About a month and a half ago, my husband thought he had pulled a muscle in his right shoulder lifting some heavy equipment. A week later, he had a sore, tender slightly swollen spot under his arm. Another trip to the PCP, who thought it possibly a hematoma. He was sent to an orthopedist to see if he might need PT. The orthopedic Dr. was unsure if the swollen area was a hematoma or not, so he sent hubby for an ultrasound. From that, we learned that whatever was going on was happening in his lymph nodes. In the meantime, the area continued to swell and cause discomfort. It was NOT hard; it was soft and squishy. Pain and swelling continued, so hubby went back to PCP again on Mar 28th. He sent him to a surgeon for a possible biopsy. The surgeon was the one who thought it was likely cancer, even though the lump was soft and tender instead of hard and painless. Just in case it was some kind of infection, we had his PCP test for infections (including cat scratch) and give him some antibiotics. On the 30th, he had a CT scan for his whole torso. It came back basically clean (a little fatty liver, that's it) except for the masses seen under the right armpit. Meanwhile, cat scratch test came back negative. He had a biopsy done on April 1st. They were to remove the enlarged lymph node and take a sample right there to determine if it was cancer and would remove more if they found it was. The lymph node that had swollen was necrotic (likely why it was painful) and roughly the size of a racquetball and found to be consistent with metastatic melanoma. They removed several other matted lymph nodes as well. We have not gotten the results of the full panel back yet, but the preliminary report said that 11/18 of the nodes tested positive for melanoma. The next day, he had an MRI of his brain and liver with clean results.

His doctors were shocked. His dermatologist made a personal phone call to him when he heard we were requesting records for an oncologist. He showed no signs of any problems when the doc had seen him just a couple months ago...

This past Thursday, he had a PET scan. We have an appointment with a local oncologist tomorrow, where I expect we'll get a staging and the results of this test. My husband and I are feeling pretty overwhelmed and shell-shocked over the news and have hardly had time to wrap our heads around it. Our PCP's office recommended we get a 2nd opinion at Dana Farber (as we are relatively local to them), so we have an appointment with Dr. Ibrahim at DF's Melanoma Center on Friday. I had considered getting an opinion at Mass General's Melanoma center as well because their office is more easily located (for us) in Boston as well as having a satellite office not far from where I work.

Can anyone share, well, anything about anything with us? What kind of questions should we be asking these doctors? What would be good to know? What should we expect for his 1st oncology visits? How soon should we expect his treatment regimen to start? Will he need to take a leave of absence? Has anyone had any experience with Dana Farber or Mass General's Melanoma centers?

I sincerely appreciate any and all feedback anyone can give us newbies.



Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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Anonymous's picture
Replies 3
Last reply 4/13/2011 - 11:12pm
Replies by: lhaley, alicia, Fen



This is the first time that I have posted. I am  stage 3 unresectable.

I am on NO treatment currently & have had not treatment just surgery.

My White blood count currently is 4.3 on the lower side of the range (3.8 -10.8). My lymphocytes count currently is at 486.Range for Absolute lymphocytes(850-3900)

 Four weeks ago,  my white blood count was at 6.2 and Absolute lymphocytes at 639. 

My Absolute lymphocytes (fighter cancer cells) have been steadily going down.

Can anyone tell me what is the significance of this drop. What does low absolute lymphocyctes mean to my cancer & overall heealth??

I know that WBC and Absolute lymphocytes is part of my immune system but is there anything that I can do to improve  the Absolute lymphocytes. Is this a dump question???

Thank you for your response & help.


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adgesoph's picture
Replies 5
Last reply 4/13/2011 - 6:27pm


My dad finally got into the GSK-braf inhibitor brain met trial at Vanderbilt!  He starts the medicine today and will return in a month for scans.  His doctor (Dr. Sosman) said this was his best option (over gamma knife).  He has two small brain mets as well as 2 lung mets, one in his pelvis and a couple in the neck area.  We just really need him to be a responder so he can hopefully take ipi in the coming months if this drug starts to fail.  Thanks for all your help and I'll let you know how it goes.



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Rocklove's picture
Replies 14
Last reply 4/13/2011 - 4:09pm

Hi all, I started the Ipilimumab last Friday and within a few days the tumors that are noticable on my right leg have swelled up alot including the leg, the tumors are warm and tender to the touch. 

The tumors in my liver have not bothered me any more than normal.

Is this a side effect that I should not worry about?

I would appreciate any knowledge to cope with this as it has started to keep me awake the last few nights with the pain.


Rocky  (Stage IV Liver Mets)

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kim2712's picture
Replies 7
Last reply 4/13/2011 - 9:56am

My was dx in 2004 with stage 3c melanoma. It was on his ear, ulcerated, hi mitosis rate, and one positive node. Had complete neck dissection, then 1 year of interferon. All has been fine until March 7th. His right lung collapsed 100%. Inserted a flexible chest tube to drain fluid and try to get lung inflated again. After a week of that and no success they decided to have a thoracic surgeon go in and take a look and talc the lung. When he got in there he found hundreds of tumors in the lung, pleural, cavity and chest wall. This was on March 14th. While in there he inserted the large drain tube and took out the flex one..After a week they let him go home with oxygen. He was home for about 2 weeks, started coughing up blood, trouble breathing so we rushed him into ER. After X-rays and a CT we found out that within 10 days the cancer had grown in the lung, and spread into the liver, diaphragm, ribs, and the space between the ribs and liver. 5 days after that another scan showed increases in liver tumor and 2 other ones. They started 3 days of interferon and today was supposed to start the chemo part of that protocol. Three diff drugs. He has had significant increase in fluid drainage from lung and now abdomen is swelling quite a bit as well as legs and feet. They did another CT that we haven't heard about yet but they are hurrying to get chemo started tonight, that tells me something is wrong. I am so scared, his cancer is spreading so damn fast.

We are at the Cleveland Clinic, good hospital.

Anyone have similar stories that ended successfully?

Mom to Erik

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o2bcheri's picture
Replies 9
Last reply 4/13/2011 - 7:58am

hi everyone..


i am here for my best friend.. who is at this moment clear of melanoma.. had one lesion removed.. was told he was good to go.. and then it turns out

that he found a lump in his groin 2 yrs later..  had the nodes removed.. they found a bit of mel in the one node.. and is now NED for the moment..


what is bothering me.. is my co-worker's wife recently had a melanoma taken off her arm.. once again.. they say she is good to go.. she has made no

changes to her lifestyle.. of which i have no idea... but.. i worry that it will show up having spread just like my best friend...


does anyone know... how often it returns... or is it just random??? seems pretty ramdom.. but.. very scary...


i worry about everyone now..


thanks so much..



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