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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nicoli's picture
Replies 1
Last reply 4/24/2011 - 11:11am
Replies by: Janner


Such a simple question that I asked my oncologist and surgeon but I can't seem to get a clear answer.......

When a pathology report says "there is no sign of metastic disease", does this just mean there is no TUMOR or does this mean there are NO CANCER CELLS? 

I first questioned this when I had my neck dissection to remove 23 lymph nodes. One showed "signs of metastic disease" and listed no dimensions of a tumor.  I asked my oncologist at the time what exactly that means and she said that she would have to call the lab to get the answer and she never got around to it. (which is one reason why she is my "first" oncologist!)


Nicki, Stage 3b, diagnosed December, 2009, scalp, surgeries (3), local recurrance October 2010, biochemo, currently radiating my scalp to (hopefully!) prevent recurrances.

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

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Two weeks ago I was ready to take my wife to Bethesda and the National Cancer Institute for assessment and future participation in clinical trials. We were scheduled to leave on the 13th and be assessed on the 14th. Although my wife had just had a PET/CT scan (in connection with her follow-up on Ipillimumab/Yervoy - which didn't work for her) they wanted a brain MRI. So she had one done on Friday the 8th. On Monday the 11th our oncologist told us they had found two small brain tumors. Devastating news, as he was pretty sure it knocked us out of clinical trial participation. But we left his office lined up with an appointment with the gamma/cyber knife radiologists and my reassurances to her that I had read lots of folks on this board had successfully undergone brain tumor treatment with radiation. We were also ready to undergo a course of IL-2, her only remaining option. We got home, told our one son, called and told the other, and then fate intervened. She had a stroke; we found out later that night from the brain surgeon one of the tumors burst (it was only 11 millimeters). He characterized melanoma tumors as "bleeders". She survived, but we have been in the hospital the last 12 days, getting home last night. She has the horseshoe scar of honor and the shaved head. She will have to have radiation on the bits of the tumors that didn't come out. But this is a significant setback as it also delays systemic treatment as she has to wait until her brain calms down from the recent surgery and then the radiation. She was also unfortunate enough to suffer a condition called cerebral sodium wasting - about 4 days after the initial surgery the brain loses all capacity to regulate sodium levels and as a net result your brain swells and it's a big problem. Thus the 12 day stay.

Despite the excellent and timely intervention of the brain surgeon, there are lasting effects of the surgery; many are what we hope will be temporary ones or ones her brain can rewire. So not only is she a melanoma patient, but a stroke victim. The worst is loss of peripheral vision on the right side which is permanent. She has balance, memory, and cognitive capability loss, plus aphasia which is rapidly diminishing. Despite all this she retains all her personality and humor. She feels remarkably calm and anxiety free about both her stroke recovery and future melanoma treatment and course of cancer. She jokes it might be because of the brain insult (which it probably is), but who cares as long as it's a positive condition. She starts rehab this week.

From a caregiver perspective it changes the game a lot. She has no capacity for organization or management of her condition. So I am the one giving her all the pills and scheduling and managing both the rehab and cancer treatment processes. Fortunately, I am semi-retired and work out of our home and we have a lot of friends and family for support and several have activated a web based support system that we can tap for anything from meals to sitting with her to driving her if needed (she will never drive again). I cannot imagine how others with less support could cope, it has and will be a daunting challenge.

Our oncologist characterized melanoma when she was first diagnosed as a capricious disease, you just never know how it will play out for each individual. I can know attest to that description.



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

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Replies by: Janner, lhaley, nicoli

Hello all,

I have a question about recurrent mel and secondary primaries.  If mel returns to the area near a WLE, is it always recurrent melanoma or could it be second primary and how can they tell that?  Also, if margins around the WLE were all negative, can mel recur around the scar site.  The reason I am asking is that I had my WLE in late Nov 2010 from 1.5mm mel. with clean margins.  It went to 1 node microscopically so IIIa now.  Had first checkup in mid March and had 2 moles removed but both negative.  The area around my WLE has formed what they call a keloid scar and it itches terribly all the time, I put lotion on it every few hours.  I noticed over the past month that a darkened area is in the scar around where I see lots of veins.  I go back to Mayo in June for scans and another derm visit, but am debating whether I need to go back sooner.  Thanks for any info/insight.  Dave

Live life to the fullest and enjoy each day!

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Jaime.30's picture
Replies 4
Last reply 4/27/2011 - 3:49pm

Hi! I just wanted to stop in and say Happy Easter to everyone.  My hubby is doing great and is two years from diagnosis....still NED and going strong.  We are getting ready to move to the country on 5 acres to enjoy a little slower paced cancer free life.  Oncology in June, hoping everything stays all clear.

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kevinod50's picture
Replies 5
Last reply 4/24/2011 - 1:51pm


I am new to the board and was diagnosed with 3a melanoma last year.  I am currently on month 9 of Interefron.  Last week my quarterly CT scan showed a new nodule in my lung.  It measured 2.3 mm.  Not on previous scans.  Oncologist recommends re-scan in 2-3 months.  He alos said that these things happen "all the time" and he is not particularly worried about mets.  Has anyone else had a similar experience with CT false positives?  Also, want to know how it was handled...thanks!


Kevin O'Donnell

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Suzan AB's picture
Replies 5
Last reply 4/26/2011 - 2:52pm
Replies by: Anonymous, Suzan AB, LynnLuc, MichaelFL

Hello All!

So my husband and I were going over treatment options the other day and we began to brainstorm (I know scary) and we realized that we have never heard of melanoma or any other cancer involving the heart muscle.  Does anyone know if there has been an investigation to see if this is true?  Hypothsis:  Heart tissue is resistant to cancer.  I realize that tumors grow by the heart, around the heart, etc. because I have a pesky met kissing my heart...its in my left lung ever so close to my ticker!

Out loud, typed out in back-in white...I have lung mets...phew...a few weeks ago I underwent a Flex bronch. VATS wedge resection to my lower right lobe.  The two other nodes were too deep in my lung and my doctor wanted a quick recovery time, so next month I will be asking to be treated with IL-2 and a dash of GSK Braf.  Call me silly, but I believe this might be the treatment for me...

Thank you to all of you old-timers and newcomers who continue to keep this place open for folks like me who appear and then disappear, like Houdini!

My best to all with many Blessings,

Suzan AB

Presently...One Day At A Time.

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mommydog's picture
Replies 1
Last reply 4/23/2011 - 9:35pm
Replies by: Janner

What exactly does "tumor burden" mean? 


Stupid in Sacramento

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K in LA's picture
Replies 5
Last reply 6/15/2011 - 4:53am

My husband is due to have infusion #4 next week & one of the sub-qs on his scalp has started bleeding with, to quote him "bits dropping off".  A lesion on the side of his chest also began seeping/bleeding this morning.  Has anyone else doing Ipi experienced this?  We're hoping it's a good sign as a couple of his other sub-q tumors aren't looking as "robust" as they were...

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Kimmer's picture
Replies 6
Last reply 4/23/2011 - 8:02pm

Hi Everyone,

I am truly most humbled as this day marks the 5th year since my last surgery for recurrent melanoma.  It is also my birthday, so every year that passes is a true blessing.

I have had a little virtual party, of sotrts, going on at OTBB today and would invite anyone who cares to venture over there to do so and do a little reading.  My profile is under Kimmer or can be viewed by clicking on my name.  I only direct anyone there in the interest of offering hope.

Hope can overshadow any of our fears if we just surrender to it.

Love and the very best thoughts to all!


And remember, no matter where you go, there you are. Confucius

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sharmon's picture
Replies 7
Last reply 4/28/2011 - 4:12pm

Brent and I are in Houston for MDA, and had the opportunity to spend time with Amy.  She looks and sounds great, we went out to eat and a little Easter shopping.  She is dealing with a lot of pain and gets tired, but she enjoyed getting out of the house.  Her battle has been long and she has had to be an  advocate  ( doing her own research work )as well as the patient, and a mom, while Dennis works,  not easy...... 

She is doing Hospice and finds that helpful.

She has found her peace and has a strong relationship with God, and takes one day at a time.

She finds it hard to get on the internet and doesn't know where her computer is so you may not hear from her very often. 

We met the kids and wow what a great family. 

I just wanted to give you all an update.  We will be here for 6 weeks and plan to see her again.

Brent and Sharon

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sharmon's picture
Replies 3
Last reply 4/22/2011 - 10:38pm

Hi, we are sitting in Houston waiting on a trial to start on Tuesday,  MEK and Alimpta,  Brent has been on MEK alone for over 15 months and the last scan showed some growth.  He is Braf negative!  When is it discussed everyone they just scratche there head.  No one understands why or how.

Back In May of 2009 he went stage IV and started IPI with carbo/taxol and went 9 months stable before he showed progression.  In Jan of 2010 he did one round of Bio chemo and spent a week in ICUl.  Scans did not show any improvement and it was stopped due to side effects.  The next month( February 2010) we found MEk for solid tumors (no Braf necessary). He did MEK for 14 months, stable until March 2011.

He has a chance to do a ABT-888 parp inhibitor in OHIO in May.  His tissue says he is qualified for this trial.  If we do this trial on this Tuesday he might miss his chance in OHIO.

We have been in contact with NIH and he is HlA-2 negative and is a possible qualifier for the TIL trial in Bethesda MA.

Here is a thought for JIM B  as well as the others here is consider.  Was all this stability due to IPI followed by Bio. and shoud we reintroduce IPI?  This theroy would support late response and a needed reintroduction.  He is Braf negative and there is no real reason he should be responding to Mek.  We talked to Dr Weber about IPI (yervoy) introduction and he said NO with out any explanation.

So do MEk wcith chemo on Tuesday....... wait and do ABT-888 with chemo in OHIO in May ,   or push for reintroduction of IPI......or a Til trial ( not good, since he could not take the Bio Chemo on Jan of 2010)

So you see our concern.  Brent is in great shape for a 63 year old with lung mets.  Able to work and travel.  If you didn't know about the melanoma, the rash on his face from Mek looks like a teenager.

Any feedback from the people here would be helpful.

Brent and Sharon






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himynameiskevin's picture
Replies 12
Last reply 4/23/2011 - 8:14pm

Well, it's midnight, I just got home from a long day of shuttles, flights and airports. But before I lay down to sleep, an update:

So.., I had another solo trip the NIH in D.C. on Tuesday for my forth round of monthly scans. One day of traveling, one day of bloodwork and scans, and today, the doctors visit followed by the traveling home. And this months results are..

Things are still shrinking. At a snails pace. But still shrinking. There is nothing new and my brain is still clear.
Not a cure, but great news nonetheless. My doctor did mention that it appeared that one might be a little bigger, but because it's so small, and since all the others are shrinking, she thinks it most likely just seems like that because of the way the CT scan image was spliced. I go back in another month and see what they have to say about it and the others.
She said not to worry about it. ...I'm sweating bullets.

Each month I really hope and pray for some... bigger number I guess, of percentage down or tumors disappeared. (as we all do I'm sure)
But it seems each month, the progress has been getting slower and slower, and I'm a little worried about the months to come. :/
We'll see. I guess I'll cross that bridge when I get there. I try to remind myself, that just 6 months ago this stuff was spreading out of control and I would've done just about anything to get it to pause, even if only for a day. And I guess I'm pretty fortunate and should be happy to be where I'm at right now, even if it isn't where I hope to be someday. And I can't rule any possibilities out. From what they've told me, they've seen just all sorts of reactions in different people, different timelines and effectiveness, progress or lack thereof etc...So it's really hard to say what to expect. I also heard a guy in the waiting room mention to another guy that his stuff didn't really budge for 6 months, then something kicked in and all of a sudden his adopted cells just went to town on all the enemies. :) ...Made me hopeful.

We'll see what next month has to say.

Until next time, I hope you all are doing well, and as always thanks for the positive thoughts, wishes, prayers, comments, and happy dances.



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Jan in OC's picture
Replies 16
Last reply 5/1/2011 - 5:20pm

Just got back from UCLA with my husband.  Got the latest CT results after the 12 week IPI Trial.  All results point to Non-response.  Scans were compared to previous scans in Jan '11 and Dec '10.  Here is the technical stuff!  Hard to read.......

CT of Ab and Pelvis:  "interval worsening of hyperattenuating hepatic lesions.  In addition confluent gastrohepatic, peri celiac, and portacaval nodal densities appear larger.  New splenic lesions are seen.  Left lobe now 4.3 x 4.1 cm, was 3.8 x 4.4 cm.  Caudate lobe now 3.6 x 4.8 cm, was 15 x 19 mm.  Right iliac lymph node now 2 x 2.2 cm, was 17 x 19 mm.  Final Impression: Progression of hepatic metastases, and nodal metastases.  New splenic metastases".

CT of Chest:  "Interval enlargement of multiple thoracic lymph nodes.  interval enlargement of multiple , at least 8, soft tissue nodules within the thoracic chest wall with at least one new nodule see.  Interval increase in size and number now numbering in excess of 100 pulmonary parenchymal micro and macro nodules.  Focal point of peribronchovascular involvement is seen within the left upper lobe concerning lymphatic involvement.  Right paraesophageal lymph node now 16 x 15 mm, was 9 x 7 mm.  Right lateral chest wall nodule now 22 x 17 mm, was 15 x 14 mm.  Left lower lobe now 14 x 13 mm, was 8.3 x 8 mm".

"Multiple thoracic vertebral body lesions with compression fractures of T8 and T5 with patency of spinal canal.  Height loss of the T8 vertebral body associated with interval development of multiple lytic lesions within the T5, T6, T9 vertebral bodies.  Final impression: Interval increase of pulmonary nodal, chest wall metastases.  Multiple vertebral bone metastases with compression fractures of spinal canal"

Basically lots of big words to say he is getting worse and this nasty disease has now spread to his bones. All I gotta say is #$%&@#$%&*!!!

Doc is now worried that the Brain mets may be reappearing, so moving up the timeframe on the MRI.  Very few options offered to us right now. We are  feeling a wee bit depressed.  Just can't get any good news!  Waiting on MRI to figure out what we can do next.

Jan, wife to dirk

laughter is the best medicine

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jean c's picture
Replies 3
Last reply 6/8/2011 - 9:42am

Has anyone been diagnosed with the above, and what did it look like?  My next to little toe is completely light purple under the nail and has been that way for several months.  It hasn't been bumped or anything.  Comments??

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TEAMM4M is a marathon training program for runners committed to raising money for the MRF.

Want to run a full or half marathon?
Want to join the TEAM?
Know a runner who might be interested?
Learn more here or contact me at

Carolyn Edrington
National Director, Miles for Melanoma
Melanoma Research Foundation

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