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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Replies by: Dynasysman, MariaH

Visited with surgeon today.  For anyone in the expanded Philadelphia area, my surgeon, Giogios Karakousis at Penn, is totally a rock star. Brilliant, great bedside manner, excellent hands as a surgeon. The whole package...

I digress.  We now have a plan of attack:

Next Thursday:  PET-CT to check for mets outside the left posterior neck region

July 18:  Meet with surgeon to plan next steps.  If no mets outside region (or maybe only 1-2 small ones), we remove tumor later that week.  If more growth, we go directly to meeting with ONC and plan for some kind of systemic therapy.

When we found reference to the tumor on the March PET-CT, it was noted as 8mm.  Two days ago, on ultrasound, they estimated 1cm.  This is a bit like comparing apples and oranges, but 25% growth in four months isn't all that fast...

I have a plan, I have hope, and I am making a stronger community of support for myself.  Thanks for reading, writing, and hoping along with me.

Never give up. Never give up. Never, never, never, never, never give up. WInston Churchill It ain't over 'til it's over. Yogi Berra My 20th anniversary is only 9+ years away. Personally, I'm thinking champagne & oysters. Now I just have to get there

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Just got back from Don's appointment with Dr. Lawrence. I just spent 1/2 hour writing out specifics of his response only to have the board eat it, so I am going to do this more abridged this time. wink

Dr. Lawrence called it "the best response to chemotherapy I've ever seen". He said it was the kind of response he has seen only with BRAF inhibitors.

Here's the down-n-dirty version of the results:

LDH: Down again to 268 from 388 last week. 

Lungs: Down from innumerable nodules up to 1cm in size to 4 (four) nodules: 4mm, 3mm, 2mm and 2mm respectively.

Tumor under right arm: Down from 10.4cm X 10.2cm to 2.7cm X 2.2cm. 2 small tumors in right chest wall same or slightly smaller at 6mm and 3mm respectively.

Liver: Still have innumerable lesions, but they are better defined and smaller in size. Largest lesion came down from 5.2cm to 2.6cm in size.

Bones: Results a little more hazy as there were mentions of "new" lesions that Dr. Lawrence doesn't actually think are new. (I think he's right, as some of the "new" ones were mentioned in an MRI of Don's spine down at Brigham and Women's hospital done in May) However, the fact that Don is taking 25% of the pain medicine he was 5 weeks ago certainly points to some improvement in this area. There was mention that at least 2 lesions seen appeared to be responding to  treatment. 

Brain: Scan clean for brain; shows some signs of possible small bone lesions in skull (not new).


Plan of action for now is to continue chemo for another cycle and will re-evaluate in a few weeks. Plan B (when we get there) was proposed to be the Compassionate Use PLX4032 trial. Dr. Lawrence wants to have Don sign paperwork now so they can send the tissue sample to Roche for testing (they require testing it themselves instead of taking result from previous test...and we know it takes a couple of weeks for results).


I know I should be thrilled with the results--and I am--but I must admit that I was hoping there would be less lesions in his liver. 

Michelle, wife of Don

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Anonymous's picture
Replies 10
Last reply 7/24/2011 - 9:52pm
Replies by: Gene_S, Anonymous, dian in spokane, teach, lhaley


My doctor is willing to have a Vitamin D test done so that I will know if I am  Vit D deficient.

My blood tests are done at Quest because the blood tests are cheaper.

Can someone tell be the name of the blood test for testing Vitamin D . Quest had 3 test:

1.Vitamin D 25 test

2. Vitamin D125 test

3. VitaminD. 25 & 125  combotest


Any info you can give me about  the Vitamin D test, you have had would be very helpful.




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I was just diagnosed a couple of weeks ago and staged at T1b, with a Breslow depth of 0.56 mm.

The day I saw the Dermatologist (after waiting 4 months to get in) and got a formal diagnosis of melanoma, he did an excisional biopsy the same day. Several weeks later I had a wider margin excised and a sentinel node biopsy performed. Both the margins and the lymph node came back negative.

So what happens next? Do they typically suggest you have chemo anyways? Or am I now "a survivor"?

I do know I am required to visit the dermatologist every three months for several years. But other than that I'm wondering if further treatment is typically recommended at this stage?

Thanks In Advance,


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CLPrice31's picture
Replies 16
Last reply 7/19/2011 - 6:32pm

After two fairly invasive surgeries since January of 2011, I have had a love/hate relationship with my new body. There's no hiding these battle wounds. A part of me knows that I should be proud of my scars, they show that I am a fighter. Another part of me just wants to be a 24 year old girl who hasn't experienced a true life crisis...

Back in April when I was really suffering from some self esteem issues, a fellow melanoma warrior sent me this great quote that I thought others might appreciate reading:

"On the girl's brown legs there were many small white scars. I was thinking, Do those scars cover the whole of you, like the stars and the moons on your dress? I thought that would be pretty too, and I ask you right here please to agree with me that a scar is never ugly. That is what the scar makers want us to think. But you and I, we must make an agreement to defy them. We must see all scars as beauty. Okay? This will be our secret. Because take it from me, a scar does not form on the dying. A scar means, I survived." -from Little Bee by Chris Cleave

Now, even when people make comments about my scars, I remind myself of this quote. A scar does not form on a dead body. My body forms scars. I am surviving. That makes accepting my new body a whole lot easier...

I hope this will help someone else accept their battle wounds, too.

"The odds are that the...the odds mean crap. So people should face it, and they should fight." ~Grey's Anatomy.

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emilypen's picture
Replies 5
Last reply 7/11/2011 - 9:12pm
Replies by: Terra, CLPrice31, lhaley

Hey All,

It's been a while since i've posted. It's been a rough month or so.

My hubby failed of the braf inhibitor he was on and we've been waiting the required 28 days so he can start IPI.

During that month tumours grew quite a bit, a few new ones popped up. He had to have some radiation to his jaw to control a lesion there and hopefully stop a soft tissue tumour that was pushing around a few teeth.

Plus we moved home to Canada and found out we're pregnant! 

So today is the day! Can't wait to actually be "doing" something instead of waiting.

Curious as to what the fasted is that anyone on IPI has seen improvement? 




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nickmac56's picture
Replies 6
Last reply 7/9/2011 - 2:17pm

We are down to very few options for my wife (Stage V, brain involvement, lung and skin mets, internal organ mets likely) and this seems a pretty low impact, not much downside option. Because of her recent brain surgery and seizures and the fact she is on so many anti-seizure meds and steroids the onc is adamantly opposed for the time being to put her on IL-2 - too toxic. All the places I've contacted about clinical trials - especially the ones doing TIL for HLA-2 mutation - have said no thanks due to her seizure history, don't want to screw up their trial results I suppose. 

I'm curious for those who have tried Temodar if there has been any hair loss? It seems a low occurrence side effect - but she is already not happy about the hair loss from her Cyberknife treatment, even though she looks great in her wig, you woudn't even know.

From what I've read about chemo treatments it appears if it has an impact, the usual pattern is some reduction in tumors for a period of time, then continued progression - so you are just buying some time at a not bad reduction in quality of life - so a pretty good trade off. I haven't found much about long term durable remissions with chemo or Temodar specifically. Any evidence out there I am unaware of about long term success? She isn't doing any combo treatment yet involving multiple drugs or chemo/immuno drugs - again related to toxicity and her particlar situation with the drugs she is on and seizure history. 



Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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Laurie from maine's picture
Replies 6
Last reply 7/8/2011 - 3:29pm


I am heading down today to get more info from Mass General. Last night I ended up in emergency room in maine with severe stomach pains and vomiting.  CT showed mass in my liver, no other info given except handed pain and nauseau meds and told to go down to MA to see my oncologist.  I will write when I know more, hopefully only contained in liver.  Hoping to pick everyones brains here once I have full info.  I did little search and saw King had liver mass removed and did well. 

ugh - laurie from maine

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Nebr78's picture
Replies 6
Last reply 8/1/2011 - 8:52am

I finished my radiation treatments then Dr. gave me a chemo with 2 medicines and I don't know what all.  Anyway about 2 days later I was the sickest individual without dieing which I wanted to do. Any way this went on for 10 days and am still not well.  Went to an Oncologist yesterday and he made it quite clear.   Since I want no more chemo, he suggested I look into Hospice plans.  That  I am doing.   I am still not quite convinced it is the Melanoma on the spine that is doing it. Radiation must not have stopped it.   I am going to ask if I could take another CT scan just so  I can see.  Last one was nearly a month ago.   But the Dr. I talked to seems to think it is all over the body . I am taking a lot of pain medication for pain in right hip.   Guess that could be coming from the spine.

Having heart disease for over 40 years, and melanoma for about 5 years, enough is enough.  I am 79 and have had a good life.   Retired for 17 yrs. and that is not bad.  Except that someday I would like to go  all day without  pain.

I don't much about Hospice Care but will find out the next few days.    Thanks to all

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MariaH's picture
Replies 11
Last reply 7/14/2011 - 8:40pm

So, we met the thoracic surgeon today, and we were told that Dave's cancer has spread and he is now Stage IV.  They told us to wait up to 72 hours to schedule an appointment with the Medical Onc to discuss options, which I told them we would not - I have already called the Univ of Pitt Medical Center (Dr Kirkwood and Associates) who called me within 24 hours (including an email from Kirkwood himself) and who also have an open trial with IPI and GM-CSF.  Amazingly, we received a phone call 5 minutes after leaving saying we had an appointment on Tuesday at 12.30 (can anybody say squeaky wheel?).  Since Roswell has one of the largest IL-2 clinics, I know that this is the route they will suggest.  We are also looking into having his original tumor tested for B-RAF mutation - does anybody know how long this takes?  Also, is there any other treatment others on the board have had that have shown prolonged OS?  He has multiple enlarged matted lymph nodes in his upper partracheal and upper mediastinal areas, non-resectable.  All other scans are clear, and at this time this is the only area of metastases.

ANY input or thoughts on which way to go would be greatly appreciated!!

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Last November, a lump on my neck turned out to be a melanoma of unknown primary.  Left posterior neck lymphadenectomy removed another 36 nodes, all clear.  Subsequent tests revealed one possibly problematic spot in the same sector (left posterior neck), but it appeared not to be growing.

After six months of tests (MRIs, PET=CTs, and contrast CATs) revealing that the site was suspicious but not growing, my ONC suggested an ultrasound biopsy.  Did the test today.  Results were truly scary:

1.   Quick stain revealed that the site tested positive for melanoma.

2.  Ultrasound suggested that the hot spot itself was a nodule outside the main area of the lymph node -- either having expanded from inside the lymph node or grown entirely in the sternocleidomastoid muscle.  In either case, I assume we are now talking Stage 4.

This is a tough, tough day.

I am seeing my ONC surgeon tomorrow to schedule a full tumor biopsy sometime next week.  I assume this will provide a B-RAF status, which had not previously been tested.  I already have a meeting scheduled with my ONC for July 29, and will push that earlier based on the results of the biopsy.

One reaction is anger:  I am being treating at a Top Ten National Cancer Center by widely published people, all of whom are melanoma specialists.  Why didn't anyone think to do a simple ultrasound before now -- NINE MONTHS after the initial warning sign -- instead of all the fancy, expensive but ultimately worthless tests they ran?

A second reaction is stark, raving fear -- fear of telling people (I run a decent sized, high profile business and am involved in a raft of community activities), fear of what comes next in treatment, fear that despite high energy and positive attitude, I might not prevail over this disease. (That list was not in the order or importance).

Those of you who do tons of reading on this disease:  what questions should I be asking that I might not think of?  I am fairly solid on medicines, less so on diagnostics (obviously!) and the various forms of surgery, radiation, disease management, etc.  Is there anything I should be reading tonight and over the next few days to come up to speed quickly?

Those of you who have survived for a long time as Stage 4 -- what helped you?  What changes did you make in life and/or outlook (if any)?  Did you adopt yoga, massage, any successful forms of relaxation?  How much control did you take over your therapy and choices?  

Those of you who have owned businesses and been prominent in your communities -- what did you learn about the process of telling people?  How much did you divulge, and to whom?  What worked for you?  And how much of that can serve as a general lesson, instead of simply a statement about how you roll?

All of you -- what else should I be asking?

I have always met challenges, and believe that I am as well equipped to meet this one as anyone else (of course, a very aggressive tumor may have a mind of it own).  I've scanned this community for the last nine months, occasionally making contributions but mostly marveling at your power, warmth, and cohesion.  Thanks for helping me now.


Never give up. Never give up. Never, never, never, never, never give up. WInston Churchill It ain't over 'til it's over. Yogi Berra My 20th anniversary is only 9+ years away. Personally, I'm thinking champagne & oysters. Now I just have to get there

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lhaley's picture
Replies 7
Last reply 7/8/2011 - 2:24am

Yesterday at my mel specialist appointment I told him that I wanted so badly to celebrate this day as NED. He winked and said he could ask Dr White to remove the tumor this afternoon and then I could proclaim that I was!  Didn't happen, but I knew it wouldn't.  Instead he did a FNA on the new site on my arm below what was supposed to be radiated.

My scans were clean!!!!  2 Lung nodules remain stable, that's about 9 months now.  The lump on the arm didn't show up but it was deemed to small to show on a PET, hence the FNA. 

If it comes back as mel then my options were discussed. I will be leaving it and going systemic since it would just be used as a marker.  If it comes back clean then they will most likely remove it just to be sure.

New trial that has come on board. I had heard but I guess new sites are now getting it. For resected stage 3 and stage 4.  This is great since stage 4 NED have had no options except if you have the positive hla factor!!!  One arm is Yervoy at an increased dosage. Normal protocal but then after the 3 months it's once a quarter to finish the year. The other arm is interfuron - 12 months.  So as normal they give a good option along with one that we don't want to get, especially at stage IV.  Dr and I discussed it, if this new spot ends up being ok but neither of us think I could handle the 5 hours round trip every day for a month if I ended up with the interfuron arm. 

I am excited about reaching this milestone! Have been dealing with mel with multiple primaries since 79 and now 5 years stage IV.

Waiting for the phone call with the results. Can't believe how quickly this has been acted upon. Called office on Thursday afternoon. Friday morning oncologist talked to radiologist and stopped treatments till further info was gathered. Holiday weekend. Tuesday Pet/ct, results, dr appointment and then they talked my surgeon into staying after his other appointments to do the FNA!  phew.


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Nicky's picture
Replies 3
Last reply 7/7/2011 - 12:35am


Hi everyone.


I've just appeared on TV here in Australia after having my third primary melanoma removed last week.  Currently Stage 3 for 11 years.

They have these amazing new machines they are trying to raise funds for detecting melanomas and a mobile application for people living in remote places.  I am so happy to have raised awareness for this beast of a disease and supporting the researchers.

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H555's picture
Replies 5
Last reply 7/10/2011 - 1:38pm
Replies by: jimjoeb, H555

in the femoroinguinal area of my groin and pelvic node sampling and sartorious muscle flap created. From discovery to diagnosis to surgery has been a blur and now I'm in the research phase of this chapter of "cancers I love to hate"

I was diagnosed a few weeks ago as having a 2nd occurence of melanoma - first one was on my right calf 16 years ago and the subsequent surgery to remove the margins was deemed successful. This time, about two months ago, I found a hard painful lump in my inguinal area at the same time that I was having an annual exam in preparation for retirement. CT scans, MRI and bone scans were all clear. needle biopsy a coupe of weeks ago confirmed that the mass was malignant melanoma. This is so ironic in that I've been battling prostate cancer for  more than 6 years and was diagnosed with BCR in january of 2010. that one is growing slowly with only clinical evidence of the cancer.

The malignant lymph node - the size of a ping pong ball - was removed on last Thursday, June 30th, the first day of my retirement... The surgeon sampled lymph nodes in my groin but didn't expect to find any malignancy in any of them. He will call me later this week after consulting with the tumor board at OHSU in portland and we see him on the 12th to go over treatment options. He told me the day after the surgery that I am a classic stage 3C. 

I think I'm healing fairly normally, ive had 5 other surgeries to compare to this one. the fluid in the tubing for the JP pump is kind of orangish yellow now, 5 days post op. also doing lovenox shots daily till the 12th.

I'm looking for info on length of time to heal, i'm still taking strong pain meds every 3 t 4 hours, i can now put a bit of weight on that leg - i'm using a walker- . and experiences of others on this board to help me dial in what we can expect in terms of treatment (Interferon with or without radiation, and others), duration to the extent any of us really can speculate about that reasonably. thanks for sharing any experience you've had with this chapter.

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Charlie S's picture
Replies 18
Last reply 7/8/2011 - 3:05am

In June of 1987 a surgeon stuck a knife in me, carved out a lump in my armpit that turned out to be melanoma.  Stage III with an unknown primary it was.  Yes, you read that right, June of 1987...............twenty four years ago.

Following that knife fight, melanoma lay silent in my body until 1996 when it then reared its' ugly head and made me Stage IV.  Since 1996 I have had had six recurrences, still have active disease and still am Stage IV with months to live....................or so the story goes.

Well over a third of my life and damn near half of it has been saddled  with melanoma wanting to murder me.  In the process I started  a business, lost a business, made a fortune, lost a fortune, had a wife and got bled by a wife, loved and lost true love in my arms with her last breath.

Over the years of being here I have physically met people, touched them, embraced them, been in their homes, shared with their families and watched them die from melanoma.

Each time a friend would die, I screamed to who would listen "take me instead", and so far, whoever decides that says no.

I do not know why I am alive and others are not and that bothers me.

But, whatever the deal is, all I know is to keep banging on melanoma.................and that is just what I am doin


Charlie S

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