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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Aileen's picture
Replies 4
Last reply 11/19/2011 - 9:37pm
Replies by: Anonymous, SuzannefromCA, Bugandi

A gentleman in California was diagnosed this summer with ocular melanoma.  Is there another O.M. patient who has survived surgery and radiation who could offer some supportive tips, recommendations on coping and getting through the treatments?

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Pekoe's picture
Replies 3
Last reply 9/3/2010 - 4:41pm


I am Stage IIIb (primary on left forearm 8 years ago; left axillary dissection with melanoma in one lymph node in September 2009) and two weeks ago had my 2nd PET/CT scan since I ended radiation therapy in January.  The scan was clear, but my blood work showed a drop in my hemoglobin.  I had been complaining of stomachaches to my oncologist 2 months ago, so he decided to send me for an endoscopy, which I had today.


The endoscopy showed erosive gastritis, and a 2 cm submucosal antral nodule.  They are going to send me for an ultrasound to check out the nodule.  But if it was malignant, wouldn't it have lit up in the scan?  It's 2 cm, so not exactly small.  I'm a little confused as to why it didn't show up in the PET/CT scan.   Has anybody else had this happen?  Should I be worried? 


Thanks for any replies, 


Pekoe (Vera)

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mifis's picture
Replies 3
Last reply 9/4/2010 - 11:33pm
Replies by: mifis, eeick, JenM

Hi there,

I had a melanoma in situ excised in May, a further excision in June and as no clear margins a further excision in July. Still no clear margins; showing atypical melanocytes. Dermatologist and Plastic surgeon say not to worry about it. Pathologist suggested a possible further biopsy near to, but 1 to 2 inches away from excision to see if whole area atypical, then would assume sun damage. Plastic Surgeon and Dermatologist say not to worry. Spoke with Family Doctor and she agrees with me that a second opinion might be helpful, maybe even a re-read of the slides as dermatopathology so subjective. She is particularly worried about the part of the patho report that reads " the extent of disarray and atypia is very concerning". Problem is I am in Central New York and Family Practitioner not sure of who to send me to in area so I am looking for recommendations of experienced specialists in melanoma in the area, which includes Syracuse, Rochester, Albany. Also willing to go to NYC if necessary or even Boston (but not sure if insurance would cover that)

Thanks for your help!



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Jackie W's picture
Replies 1
Last reply 9/2/2010 - 10:01pm
Replies by: dian in spokane

The September issue of MD Anderson's Cancerwise magazine is on pediatric melanoma.  It can be accessed on line.


Jackie W

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lizyli2000's picture
Replies 2
Last reply 9/2/2010 - 7:31pm
Replies by: Janner, patobs01

Hi there,

I haven't posted on the site for a couple of months now...just to give a quick run down... I was diagnosed in March 2010, with Stage 1 melanoma, 0.32mm, 0 mitosis, on my left forearm. I had my WLE done about two weeks after dianosis and all has been well so far. I have had my slides read by two different pathologists just to be on the safe side and they have both verified the Breslow Depth as well as the clear margins on my WLE. I recently moved to Boston and just went for my 3 month check up at Mass General in the Pigment Leson Center...this is where this question arised for the first time...

The dr. that I saw was very suprised my the margins on my wle inison...he said the margins looked small and didn't fit the guidelines. He stated that all the reports came back as clear margins (again, they were read by 3 different pathologist) however he doesn't feel like the margins are big enough and is suggesting that I get my WLE redone. He stated that it was completely up to me...he would be shocked if there melnoma residue however, it could always happen. He requested to take a look at my post op report to see exactly how much skin was really excised because skin shrinks once it's removed. Well, guess doesn't state the amount taken, just whatever is on the pathology report is what we have to go by, which are 3 x 1 x 0.7cm.

I was finally starting to feel okay and starting to move on from thinking about melanoma all day. I really appreciate any feedback. Thanks so much.

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Rocco's picture
Replies 16
Last reply 9/7/2010 - 5:33pm

My Trial Coordinator remeinded me that I'll be hitting a milestone this Saturday with my CT and MRI scans.  It's week #104 since I started Ipi (MDX-010 Compassionate Use) trial back in Aug 2008.   Could use any and all  prayers, good vibes and thoughts on Saturday for continued clear scans.  Will get results on 9/20 after I come back from a vacation.

Hanging in there and hoping you are all as well -

Rocco, Stage IV (Aug 2005)

Luke 1:37

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Linda J's picture
Replies 4
Last reply 9/2/2010 - 11:13pm
Replies by: BethA in VA, JenM, ValinMtl

I'm really nervous.  So far all I know is that I have a lump under the skin and in the lymph nodes.  I'm also starting radiation tomorrow to take care of the large lump before they remove it - they want to "sterilize" the surrounding tissue so the surgery won't have to be as extensive. 

I'm ready to fight this stupid cancer - I've spent the last two weeks in mental hell waiting for the fight to begin. 

It is mostly the success that others have experienced in their battle that helps me keep going. 

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Rocklove's picture
Replies 7
Last reply 9/3/2010 - 7:29pm
Replies by: Rocklove, King, Carver, amybusby

Hi All,

I have been experienceing a lot of tingling and numbness in my feet & legs from the bio-chemo treatments. I am back to work but am finding my feet & legs are a bit lazy... slower to react than normal. I almost tripped the other day because of the problem.

I called the doc and they subscribed Gabapentin 100mg. I took one last night and most of the tingling went away, but the limbs are still numb.

I am looking for any suggestions that can help get closer to normal. The doc told me it takes about a year for the tingling to go away.

I would appreciate any advice.

Rocky (Stage IV Liver Mets)

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jag's picture
Replies 9
Last reply 9/4/2010 - 3:24am

rigged the hospital schedule to get my post op MRI done1st thing yesterday, I am now NED.  Surgeon at first thought the thing in my head was a tumor because it was black looking (hemosiderin deposits rather than melanoma breakdown  from macrophages) frozen path showed no new tumor cells, so waiting for the gross pathology to see if there are actually any tumor cells.  The doctors and my wife all seem very fascinated and are suggesting it could be my own immune system keeping things in check.   Since it has already taken me 1/2 hour to type just this, it would be nice if it could work a little faster.    Can't use my left side so well, but after craniotomy #3, I couldn't even feel my left leg.   Been down this road before, hopefully will be able to cover my ER shift on Sun.

As for the doctors and nurses here at Sloan, I couldn't be more humbled.   

Insert Generic Inspirational Motto Here

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vickirs's picture
Replies 3
Last reply 9/2/2010 - 9:40pm
Replies by: Rocklove, vickirs

I am on this trial now.  Have had 4 treatments.  Has anybody else been on this trial.  How has it worked for you

melanoma is a word...not a sentence

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joy_'s picture
Replies 24
Last reply 4/30/2011 - 3:23pm

Subject line says it all.  I am sure there have been many discussions on interferon here, but I'm interested in hearing everyones personal take on it.  Bill is going to start the 4 week high dose treatment this month.  We're not happy about it, but he feels like if he doesn't try it and mel shows up again he'll regret it.


wife to Bill, stage IIIc

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donaldg's picture
Replies 6
Last reply 9/3/2010 - 8:52pm

Just had a yearly pet scan . Results NED. That makes it just about 5 years NED.

Good Luck to all


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KellieSue's picture
Replies 5
Last reply 9/1/2010 - 10:18pm

I continue to have success with shrinkage after completing 8 week trial of ALT-801.

My latest scans show 2 lymph nodes in the neck and the thyroid still have melanoma but they are significantly smaller and other 2 lymph nodes are gone! :)

They also show advanced necrosis of the tumor in the remaining lymph nodes. As my dr. said this is GOOD NEWS!!!

He has rewritten the protocol and has asked and received permission from NCI to redose me.  Now just waiting on the drug company!

As much as I don't want to go thru 8 more weeks I have to look at the big picture. This wasn't as toxic as IL-2 can be, I had a relatively easy time compared to what that coud be.

8 more weeks of feeling like crap for possibly more years? Totally worth it! Just have to gear up for the rash and headaches and vomiting to come! Yippee!!!!!!!!!!!!!


Kellie, Stage IV, stable disease after one round of ALT-801, gearing up for my 2nd

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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Lori C's picture
Replies 10
Last reply 9/1/2010 - 2:13pm

Good news.  The cancer, while still significant, is smaller.  There are still too many lesions in the liver to count but the report gave examples of size reduction in many of them, and sclerotic (healing) evidence in his bones.  So the chemo is working.  They gave him another round yesterday, as well as Zometa to strenghten the bones.  Today I have to take him for transfusions (his hemoglobin was low).  I'm exhausted but very pleased.  Given the extent of the liver mets I really wasn't sure that anything would work.  He's continuing on the same chemo for the time being; hopefully it will continue to reduce the lesions and we'll be able to have some other options.

Thank you all for your encouragement and support.  It has been an exhausting few days. 

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Nancy's picture
Replies 1
Last reply 9/1/2010 - 12:39pm
Replies by: Kevin from Atlanta

Buddy has been on Decadron 4 mg QID po (3 x day) for 9 days.  They will not allow him to have his 3rd treatment of IPPI until he is on low dose Decadron, or weined completely.

What is the low dose for Dacadron, and what is the daily amounts usually taken daily to get to low dose form one being on 4mg 3xday?

He actually needs the steroids to help in brain swelling, but he needs to get the IPPI treatment ASAP as Dr. sharfman has stated that IPPI would be his only chance...

Thanks for any replys,


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