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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I live in Alabama. I am currently NED (YAY!!).  I truly don't know if I'm stage III or stage IV because my local oncologist refused to (couldn't?) put an actual stage to my melanoma.

When my melanoma recurred in a lymph node in June 2009 after a 17 year absence, my local "general" oncologist said depending on what criteria you used, it could be staged as either stage III or IV.  He stated that because of the long time period since the 1st occurence, and because we couldn't find a primary, if we treated it as a completely new occurrence, then it would be stage III.  However, if we treated it as a recurrence, because my original melanoma was on the LEFT side, and the recurrence was in the lymph nodes on the RIGHT, it would be stage IV.  Since he couldn't definitevly state which it was, he wasn't willing to stage it.  The PET/CT showed only the one positive melanoma site and treatment proceeded as if it were stage III - surgery (CLND) followed by the year of interferon hell (completed Nov 2010).

ANYWAY, my oncologist says I'm at high risk for recurrence.  I like to be prepared (former Girl Scout).  For that reason, I want to have at least SOME idea of what I want to do should it recur.  Based on what I've read on this site, I know I will need to get myself referred to a melanoma treatment center.  

So, although UAB in Birmingham,AL is listed on this site as a Melanoma Treatment Center, they just don't seem to be as "robust" a center as others - nor are they as well known.  (And I can't necessarily rely on my current oncologist's recommendation because he graduated from UAB!)  If I chose not to use them, I have to be able to defend my choice to my spouse (which should be relatively easy just based on the availability of clinical trials.)

So, if you had to chose:  Would you go to Moffett, MDAnderson, Vanderbilt, or somewhere else?  I very am fortunate that at this time, I have good insurance that will allow me to go almost anywhere.   (I'd like to stay in the southeast, but I would consider the NIH because of the TIL trials, which seem to be a very viable option.)

Thank you!

PS - I don't consider this negative thinking.  I prefer not to be in a panic should the worst should occur.  If I've at least thought about what I want to do, I'll be better prepared to make a decision and better able to discuss all the choices rationally with my husband.  Something VERY important with my VERY logical husband!

"A little ingenuity and a lot of duct tape will solve many problems.", AKC Agility Judges Guidelines

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My mother (90) has been on Zelboraf for 8 months with great results.  The only problem we are having now is severe joint pain in the leg with the melanoma.  This is keeping her from moving around and staying active.  We have been trying to handle the pain with over the counters but will be starting narcotics today.  Any other suggestions and has this pain come and go for anyone on Zelboraf?

Thanks.

-Charla

   

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Roxy1453's picture
Replies 5
Last reply 8/15/2012 - 9:39am
Replies by: Janner, Roxy1453, Anonymous

I had the last 3 months off! No appointments, no problems! I went in today for another scan.

I have no new spots!! But, the spot I have had behind my knee is still there. It has gotten a little smaller, but not enough. We talked, In the past, about surgery to remove it but it could cause me to have drop foot. Today we are back talking about surgery. Dr. Is going to talk to surgeon to see if it is still risky. I won't know until Thurs.

He did talk about the anti pd1 being available in the next 3 or 4 months. He also said I could just wait 8 weeks and have another scan to see if it changes.

Any good ideas for me?

Thanks,

Nancy

"I can do all things through Christ who strengthens me." Philippians 4:13

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Nell's picture
Replies 3
Last reply 8/15/2012 - 5:33am
Replies by: Anonymous, Gene_S

To Gene and others--Any particularly good recipes for smoothies and the like for building the immune system?

One voice can make a song; one life can change the world.

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I was diagnosed on 7-12-12

Had WLE and SNB on 8-1-12 at Emory, just got path report today which is SO confusing.

Clinical stage is IIA, T3, N0

However due to the 2nd node shows scattered subcapsular immunopositive cells and immunistains for S100 are negative there was a comment attached that stated "Multiple recuts and melan-A immunostains do not resolve the issue of whether the immunopositve cells in part B represent metastic melanoma or nevus, metastatic tumor cannot be excluded.

2 pathologists came to the same assessment

This additional information made my surgeon restage my cancer to stage III and has scheduled PET and complete lymph node removal of the groin (20 nodes) on August 29.

Only 2 nodes were removed at SNB.

Margins of WLE are clear and although we thought we had GOOD news with the stage IIA, after she changed it to III we became extremely distraught.

Any info you can give would be appreciated!

God still performs Miracles,

Gayla

Never give up- God is my healer

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Eileen L's picture
Replies 4
Last reply 8/14/2012 - 3:27pm
Replies by: natasha, Anonymous, Eileen L

Just got my scan results from this past Friday, after being on the BRAF/MEK Roche trial (Zelboraf and a MEK inhibitor) for 12 weeks. The good news: The adrenal gland tumor shrank a bit more and the nodule in the lingular area of my lung is stable, both are basically non-reactive. The bad news, there is a new small lung nodule in my right upper lobe, just 8 mm.  Although non-reactive on the PET, apparantly mets this small frequently don't light up on the PET. Awaiting call form my doctor to discuss. I know that there are frequently non-specific lung nodules that turn out not to be mets, but I am bummed out!!!!!! Will post again when I know more.

Eileen L

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/14/2012 - 1:56pm
Replies by: Anonymous, washoegal

Is it something precancerous?  Does it need further re-excision?

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Krha13's picture
Replies 3
Last reply 8/14/2012 - 11:48am

Hello, we have been lucky and my wife is coming up to 2 years on the Braf3 study having been randomised to Verumafinib. It seems very difficult to get information on complete responders. My wife was desperatly ill with lymphangitis in both lungs , a large left pleural effusion and left pleural mass- only walking a few steps with  Oxygen. Within 16 hours she was walking without Oxygen and has done well (adverse effects allowing). Scans improved quickly and clear at about 3 months. One small pulmonary slow growing melonama recurrence resected 5 months ago

Is my wife one of the longest survivors on Verumafinib?

What happens if the drug is stopped?

Cannot find any report of severe pain only on light or unexpected touch- is this a problem in others?

 

K A

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sc0tty2's picture
Replies 5
Last reply 8/14/2012 - 8:46am
Replies by: Anonymous, natasha, MichaelFL, sc0tty2, Janner

Was diagnosed last week after biopsy showed .3 mm depth.  WLE tomorrow.  I was told to get an xray of chest and eyes.  Is this fairly common?  From what I've read, it doesn't seem like .3mm would warrant the xrays.  Thanks.

 

Scott

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Aneal12's picture
Replies 1
Last reply 8/14/2012 - 8:30am
Replies by: natasha

About a month ago I had a moly removed and it came back Abnormal.  I went in last week to get a larger piece removed and when I sent back to get my stitches out they said it still came back abnormal and to just watch it.  Has anyone had this happen?  What happened?  I have a TON of moles and I am going to get a full body check, but I am concerned!

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PlantLady's picture
Replies 11
Last reply 8/13/2012 - 10:13pm

My husband, Ron, has been struggling with weight loss, but more frighteningly, muscle loss.  I've posted about this on the board before, when he was having such a bad time with diarrhea from the 2 Yervoy treatments (Yervoy treatment halted).

I've researched (Googled, more accurately) and found that the particular steroid he was prescribed, Dexamethasone (a flourinated steroid) is well-known for causing muscle wasting.  That, while all steroids can cause muscle loss, this drug is the worst of the lot.  Switching from a flourinated form to a non-flourinated steroid (such as Prednisone) could help slow this muscle wasting .   Gee, I wish I'd known that when he was first prescribed a month ago!  We asked if he could be switched, but now that Ron is slowly (frustratingly slow) tapering off, the doctor doesn't want to switch to a different steroid. 

Yervoy can cause weight loss.  Cancer can cause muscle wasting and weight loss.  We really didn't need anything else to contribute to the muscle wasting aspect!

I have started giving Ron more protein.  I make sure every meal contains good quality protein.  We're eating lots of fish (wild caught, good oils) and some pastured poultry/meat.  I'm making him protein shakes twice a day, with MCT oil, BCAA powder, Fish Oil, probiotics added.  We try for around 100 g of protein per day.  This is on top of lots of berries, vegetables, some whole grains, wheat grass juice, and supplements.  It is hard to give him enough calories on a healthy diet, but, believe me, I'm packing them in there!  According to the Life Over Cancer book, by Dr. Block, he should be consuming around 2600 calories to help counteract the weight loss.

I had a hunch that Psyllium might help his diarrhea.  He has 2 servings a day, mixed with water.  This bulked up the stool, which had been watery.  Now the stool is normal.

He has stopped dropping weight!  He has put on a few pounds.

He's still on the Dexamethasone, much to my irritation.

Although he still has a weak voice,  and a bad limp because of Drop Foot/neuropathy, we are hopeful that he can at some point resume the Yervoy therapy.

CJ 

If you're going through hell, keep going. ~ Winston Churchill

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Snickers60's picture
Replies 4
Last reply 8/13/2012 - 8:09pm

Precious hubby Wayne and I are packing for MDA- Houston - leaving Wednesday.    This is our 6th trip since learning of Wayne's

mets in March - 2012 !   He began ZEL on April 23rd at full dosage (8 pills a day) and at 7 week PET SCAN he was CLEAN and we renamed

him "NED" - dontcha just love that NAME !     

He will do his second PET next week, so we have a little scanxiety going on !   We feel we will get a GOOD REPORT, but with MELLY,

you just never know.   Would appreciate all prayers you might lift up for us. 

He had mets to lungs, liver, sternum, spine, leg/bone.    We found it ACCIDENTALLY (we know it to be Divine)

 while scaning his heart for Plaque during a regular yearly physical.    

His history:    

Colon Cancer with early spread - 1990 - age 40 - year chemo and max radiation

Earlobe Melly in 1999 - 50 years old - cut it off, did Senteniel node biopsy - no treatment - lots of follow up

Melly Mets - March 2012 (13 1/2 years later) to lungs, liver, sternum, spine, leg bone.   

June 14, 2012 - Renamed -   "NED" 

PRAYING HIS NAME IS STILL "NED" !    

THANKS GUYS !    PRAYING FOR GOOD REPORTS FOR ALL OF YOU BRAVE WARRIORS !!!

Nancy (devoted wife of 3 X Warrior Wayne) 

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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lrkg1234's picture
Replies 6
Last reply 8/13/2012 - 4:16pm
Replies by: Janner, lrkg1234, Gene_S, teach

I am writing on behalf of my husband, Scott, 54 years old.  Diagnosed with melanoma today. 

It's a tumor in the esophagus, about 6 cm.  We are waiting on the CT scans, just got the pathology report and a GI Scope.

  We have no idea where to seek treatment.  We live in Indianapolis, but are willing to travel about anywhere. 

We are not sure whether we should focus on a good thoracic surgeon or the rareness of the cancer aspect being so rare.  There is not much information out there. 

So happy to find potential help.

Lisa

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http://www.collabrx.com/melanoma

There is also more info on drugs and trials below the tester.   Gene

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

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