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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NYKaren's picture
Replies 22
Last reply 9/8/2011 - 10:19pm

Hi everyone.  

Got the biopsy results yesterday.  On the initial mel section next to my ear, the ipi has killed the cells on the surface, but they're still there beneath the skin.  The new area next to that section and very close to my eye is indeed melanoma.  Very disappointing to hear that it's still spreading.

I am at week 14 of ipi (had 4th and final infusion at week 10.)  So far, I'm a partial responder.  Dr. Wolchuk said that hes seen people still growing mel at week 12 with a big turn-around at week 16.  But he also says that I need to think ahead as if I will only see a partial response.  Nobody's happy.  I am absolutely not a candidate for another surgery...there's no room for margins either near my eye or my ear, which it's touching.

 Attn Jimmy: Interestingly, Dr. Halpern (in conjunction w/Wolchuk) prescribed Aldara (now available in generic).  I'm to put it on generously (use the whole packet) every night, and cover w/saran wrap for about 30 minutes.  They're hoping it will work w/the Ipi.  He also said that since it's so close to my eye, my eye-lids might blow up.  

Aldera Question:  I know the skin is supposed to react--do you stop the aldara if it blisters, etc??  I feel so vulnerable because Halpern is on vacation this week & Wolchuk is away as well. And I feel so stupid because Halpern told me that it's supposed to blister, but I didn't ask him what to do then, and now he's away! (Yes, I know that there are other docs at Sloan, and I will call them this week.)

Empire BC/BS paid for all my Ipi infusions BUT THEY WOULD ONLY PAY FOR 15 PACKETS  OF ALDERA for one month!  I'm hoping Halpern's office can fight it.

Meanwhile, we're seeing Dr. Wolchuk on Sept. 1.  If I haven't miraculously responed fully to the Ipi, we have to decide next step--a combo of 3 chemo drugs (I stupidly didn't write them down) or IL-2.  They don't give IL-2 at Sloan, but at Yale-New Haven.  Also, I'm Braf negative.

My husband heard him say that both chemo and IL-2 have a low response rate--does 20% sound right??  I'm sure I heard that if one responds to IL-2 it's a lasting response.  He said that the chemo doesn't have many side-effects, and I already know how brutal the IL-2 can be.  My 21-year old son says "go for the most aggressive treatment."

I guess it's wait and see with the ipi/aldara and more decisions on the 1st.

All advice, suggestions welcome!




Don't Stop Believing

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CKasper's picture
Replies 4
Last reply 8/22/2011 - 12:37pm
Replies by: CKasper, LynnLuc, Janner

I met a woman the other day at the market and we got into an conversation about melanoma,

she said her brother was Stage 5.  Has there been a change in th staging system?



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Gene_S's picture
Replies 12
Last reply 8/21/2011 - 6:21pm

Update on Gene:  The inoperable tumor on the head pushing on the spine is gone and has new cell growth on the spine, the big one in the liver is 75% shrunk,  the one in the lung is gone and all the others in the liver have greatly shrunk or totally are gone. 

Hopefully by week36 he can be NED.

Now that is some great news. 

Thank you all for your prayers we both really appreciate them.

Judy wife of Gene_S stage IV since Oct. 2010.

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

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Vermont_Donna's picture
Replies 18
Last reply 8/22/2011 - 10:12pm

Hi folks,

I am back to work as of 8/15 full time and feeling great. I just had a complete oncology checkup and dermatology visit also (just happened to be a week apart, usually I stagger each appt a bit further apart). Anyways, I had noticed a blue spot three weeks previous to my derm appt right below my knee on my right leg, where all the melanoma has been. It was removed in a punch biospy and was black below the skin line...I was quite dismayed as was my dermatologist as in this exact spot I have had two melanoma intransit mets removed several years ago and they looked just like this tissue sample. But on Monday, my first day of work, I got the following news. YOU ARE STILL A COMPLETE RESPONDER and here is the actual PATHOLOGY report....basically it was explained to me that my body's immune system is working to attack melanoma...thats the Ipi! I remain a complete responder!!

Vermont_Donna, stage 3a, NED

Pathology report:

A - There are numerous macrophages containing coarse melanin pigment
(melanophages) within the deep dermis and scar. These cells have the
histologic appearance of melanophages, strongly express CD68, and are
negative for MART-1. In this patient with known metastatic melanoma, the
findings are consistent with a regressed site of melanoma. Multiple
additional sections were examined and melanoma cells are not identified.
Prior biopsies SD09-26017 and SD10-14908 were correlated.
Interestingly, normal melanocytes are not identified in the epidermis on
MART-1 stain, and this result is duplicated on a repeat MART-1 stain. This
apparent absence of MART-1 staining normal melanocytes in the epidermis is
not understood. Possible explanations include regression of normal
melanocytes, a vitiligo-like response, and effect of prior radiation.

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dutchchic's picture
Replies 2
Last reply 8/21/2011 - 7:35pm
Replies by: BarbieGirl

Just wondering if anyone knows the best Melanoma Oncologist in the Dallas area?  



It's all about the TUDE! Is Jesus driving your journey?

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shellebrownies's picture
Replies 7
Last reply 8/24/2011 - 12:31am

Well, Don went in this week for a CT scan and brain MRI after having his 4th chemo treatment. I had been concerned since after the 3rd round when his LDH numbers started creeping up instead of coming down. Unsurprisingly, the scans showed some regrowth. (They also found a small blood clot in his lung, so now we add blood thinners to the ever-expanding list of medications he takes...)

Our plan B was the Compassionate Use Zelboraf trial. So we go in yesterday for his EKG and derm appointment for the trial. While we were there, Dr. Lawrence comes in to see us. He said that they got the test results back from the tissue sample...and that Roche is saying that Don is NOT BRAF positive!

This was the SAME sample that was used in May when we were trying to get in to the GSK BRAF/MEK trial...the same one that came up BRAF positive on their test!

Now this gets complicated. The doctor said they are appealing to Roche to try and get Don accepted to the trial based on the other BRAF test. However, now that the drug has been FDA approved and the FDA requires that the drug can only be prescribed after a positive result with a FDA approved test (as in only Roche's test), I'm not sure if that's going to happen.

There has been talk about perhaps taking another tissue sample if their appeal is denied. But, what happens if that comes back negative?

Sigh. Wish I knew. We meet with Dr. Lawrence on Monday; maybe we'll have better news then.


Michelle, wife of Don

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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Jan in OC's picture
Replies 4
Last reply 8/21/2011 - 1:25pm

I have been at MD Anderson since 5 am...just got back to the hotel (after 8:30pm).  The surgery went good, the doc removed one tumor 10mm x 10mm from his left frontal lobe and he was pretty sleepy and in some pain (big headache). 

The Neurosurgeon also delivered some bad news that I have not been able to speak to Dirk about yet.  Last week's MRI showed just one large and 3 small mets in his brain.  Last night's pre-surgery MRI showed 8 small mets now.  I had a few tears and lots of cursing in my mind.  CRAP!   I will get the results of the post op MRI in the morning.  We will talk to Dr. Papa on Monday and decide where to go from here.

Our UCLA Oncologist (Dr. Chmielowski) called today to check on him and said that he was glad that we were at MD.  He said it was the best place for Dirk right now, so I just need to stay positive and believe that we can beat this latest set back.

To Desiree, I sent you an email with my phone number...look for a message from!

Thanks everyone for your prayers and support.  I am very grateful that to the wonderful people on this board.  You have kept me sane!!

Jan, wife to Dirk, stage IV

laughter is the best medicine

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Jamietk's picture
Replies 8
Last reply 8/21/2011 - 7:49pm

Just posting to give a little hope to stage I and stage II (and any stage really). This week or next, can't remember which, is my 6 year anniversary. Isn't that great that its been so long I can't remember the exact date in August? I was dx borderline stage IB/IIA (2.0 on one path, 2.1 on the other), SNB neg. I'm pretty sure I'm NED, as I had a CT scan in June due to abdominal pain (turned out to be an abcess on my ovary and a major pelvic infection, which was all removed by a Gyn Onc and no cancer found). I go to MDA in October to gain my official NED status.

Here's hoping for many more years of NED for all of us.

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Lisa13's picture
Replies 7
Last reply 8/21/2011 - 10:25pm

I'm 9 days into my ipi treatment and in the past 2 days have noticed irritablity BIGTIME!  I'm inpatient and very moody which is unlike me.  It's not all the time, but I have noticed something different about me. I know ipi can cause glandular problems which can cause irritability, but I don't think this would happen so qucikly. I don't really know if this is just me or the drug. Has anyone experienced this?


Many impossible things have been accomplished for those who refuse to quit

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CAdesiree's picture
Replies 6
Last reply 8/19/2011 - 9:31pm

just came from meeting the new surgeon... i told him i was hoping he was going to tell me it wasn't necessary to cut it back open.  he said he couldnt do that.  the notes from the original MOHS procedure were very poor.  and Mohs isnt designed for melanoma because it does NOT achieve the margins needed.  he and his assistant even mentioned seeing "satellite" on my back (i'll be looking that up in a minute).  but he wants to also perform a sentinel lymph node biopsy.  i didnt think that could be done after the MOHS.  he says it not the most desirable timing, but it will be best at time of resection.  thanks to everyone that commented on the last post... you have all gotten me really thinking.  this new surgeon also said that my new dr wouldn't have referred me to him if she thought it was just a consult.  that i should speak with her directly, but if she sent me to him its because she has concerns as well.  so, im back at square on... trying to my head around all of this.  but i wanted to post what he said.

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emilypen's picture
Replies 5
Last reply 8/25/2011 - 4:41pm

Hi All,

My hubby is currently doing IPI in a clinical trial in Toronto. He had his 3rd infusion yesterday.

My question to anyone who responded to IPI in the past. When did you lumps/bumps start dissapearing or rather when did new ones stop popping up?

It seems that every day there is a new subcutaneous bump popping up. Some of his older bumps are inflamed and painful to the touch and some have bruises over them.

We heard that his lympocyte level was raised on his last blood work and the docs said that is a good sign, but it's hard to remain positive when he feels something new every day.

Last night he was up til 4am just worrying.


And for those that did not respond to IPI, what next? We've done MEK/P13k, BRAF , Dacarbazine and now IPI.

Any input is greatly appreaciated.




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Jewel's picture
Replies 3
Last reply 8/21/2011 - 2:50pm
Replies by: Vermont_Donna, Phil S, Jewel

I have been coming to this board since Nov 2010 when my husband was first diagnosed with melanoma. Lower left calf Nodular, 3.6mm, Clark Level IV, >10 per high power field, Vertical growth present, Vascular invasion present, Microsatellites present. He had a WLE with clear margins. Oncologist chose NOT to do a LND due to the fact that he feels it does not improve OS. We chose to watch and wait because my husband likes the idea of keeping his immune system strong. Did normal protocal when in June of 2011 when he was having Hip Resurfacing performed I noticed in the hospital that he had some new spots on his original site. Fast forward to July and they discovered that he had 3 local recurrances in the original site, after a PET scan and 2 MRI one on the brain and one on his leg it is showing only in the same original spot. He also has one node that showed up on his left groin. We are now scheduled to have another WLE performed with a skin graft and a LND. Our Dr said that they prefer not to just needle the node due to fear of spill. Now I asked our ocologist about treatment, and he said he was pretty sure that my husband could be "cured" again. We all know deep down what that means. My husband and I are from the Adirondacks and my husband is comfortable with our regular oncologist and doesn't want to change. My husband is incredibly optomistic and always has been....he knows he has cancer....but refuses to let it run his life.

What should we be doing different?

Thanks to all of you, you are all so incredibly brave and strong!!!

Best wishes

Cammy& (Ken)

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Wilfred's picture
Replies 11
Last reply 8/29/2011 - 10:36am

One hundred seven days from the last positive diagnosis, 99 days from the last surgery, and now I have a new melanoma, This is the sixth melanoma on the same ear, five of them in the past 4 years. My friends all tell me that I am an unusual person,  but I don't think this is what they were refering to. How common is this? Should this be happening? Every time the pathologists say that the margins are clear. Pretty soon I won't have anything to hang my hearing aid on.

If you fight, you may lose, If you don’t fight, you will lose.

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My wife's scans last week came back with pretty bad news - she has about a dozen tumors in the epidural space along her spinal column. She was going to have the one causing pain in her tailbone area treated with Cyberknife radiation, but now the radiologists are recommending Tomo Therapy radiation. Apparently this is the latest, greatest radiation treatment there is - precision and real time targeting of multiple tumor sites (can get all 12). Supposed to be painless (of course) and minimal side effects (all I can find are references to anemia and hair loss). There is only one machine in Seattle. The alternatives are not good at all - total body radiation which has awful side effects or watch and wait for 2-3  months (until her brain calms down from the Gamma Knife brain radiation treatment she had las week) and try direct injection chemo into spinal column via a brain port (sounds lovely doesn't it). That assumes she doesn't present symptoms which force some action (likely).

Anyone done this type of radiation treatment and can speak to side effects?

thanks, Nick

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

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CAdesiree's picture
Replies 9
Last reply 8/19/2011 - 5:27pm

i had issues with my original derm who diagnosed the melanoma, then later performed the MOHS to remove it.  i had gotten a second opinion, i found a dr at a cancer center with melanoma experience.  this other dr is great!!! she listens to me, answers my questions and doesnt make me feel silly about my concerns.  she had ordered scans for peace of mind... my insurance only approved one area to be scanned out of the three she requested.  they scanned my lungs, came back clear.  insurance said there wasnt enough evidence to perform other scans. all the while this was happening she was also waiting for approval from my insurance to resect the area of my initial tumor.  when the scans came back clear i just kinda assumed my insurance wasn't going to allow a resection either since it had been a couple months.  but as i was entering chuck e cheese to celebrate my son's 5th birthday i got a call from the surgeon to schedule consultation.  i asked them to email me info and explained where i was.

since my scan came back clear and i had just assumed insurance was going to veto resection i had given up on the idea and made my peace with it.  then *BAM* phone call.  i dont know what to do now... tried to run it by my hubby, but he wants me to do it to make sure they got it all.  he has had a hard time listening to anything about melanoma since my diagnosis.  so it wasnt hard to believe he didnt remember my fears about how sneaky melanoma is...

honestly, even if i go in for resection, isnt it possible it could come back? and would resection possibly increase those chances? i mean, my body would be focused on re-healing that area, would it lower my immune abilities? i feel whiney even being so concerned... so many of you have been fighting so much longer or harder than ive had to... but here i am rambling like a baby... the original biopsy said the tumor was .72mm with mitosis of 2.  i had MOHS to remove it.  and the original derm thinks he got it all.  am i being paranoid because of conflicting personalities with first dr?

i made the appt for tomorrow with the new surgeon, for consultation.  i am hoping to discuss these concerns with him.  but i was also helping for some guidance from someone else with experience. 

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