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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Ali's picture
Replies 12
Last reply 7/20/2012 - 3:08pm

Hi guys.  I had my first dose of Yervoy and Temodar three weeks ago (after completing 6 weeks of IL-2 and the discovery of brain mets).  6 days after the infusion I developed some pretty miserable diarrhea.  At the same time, I could feel my subcutaneous tumors shrinking.  I did end up going on steroids, from which we are in the process of tapering off of. 

I went to the Dr. this week so excited to show him the tumors that were so ugly (visible and black) are now nothing more than tiny tight seeds that you had to dig deep to find.  The biggest one in my breast you can't find at all.  I do have a few small ones hanging around, but the biggest news is, I haven't felt anything new in the last 3 weeks (that has not been the pattern).

I assumed this was the Temodar at work, as I understood IPI takes a while to kick in.  When I mentioned this he said the Temodar isn't that potent of a chemotherapy, that this is likely a reaction from the IPI.  AWESOME!!!  Now I just need to be able to wean from the steroids and we try again in a few weeks, and hope that what is happening on the surface is happening all over, brain included. 

I have scans again in September.  There was a point I didn't know if I would ever see a September.  What a roller coaster! 

Thanks for all your courageous examples. 

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Lisa13's picture
Replies 11
Last reply 7/20/2012 - 1:03am

Next week, I'll be having my first craniotomy.  For those who've experienced them, how long does it make you feel better? 

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

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AZ_Gal's picture
Replies 3
Last reply 7/20/2012 - 12:17am
Replies by: gabsound, washoegal, AZ_Gal

I had my WLE and LB on Aug 5th, 2011 and almost a year later I am cancer free! YAY! However, I have some sort of cyst or fluid filled pocket in the incision where my WLE was. My PCP doesn't seem to be bothered by it and I see my Derm this coming Monday. I am supposed to be seeing a Derm every 6 months but because I live in an extremely remote area I have yet to see one since my surgery last Aug. (2011) Just wondering if any of you had ever had this problem, or heard of it. Hoping it's just fluid buildup but a little nervous. ANy help is appreciated...THANKS!

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john partrick michael murphy's picture
Replies 10
Last reply 7/19/2012 - 10:24pm

I know I am just a piker compared to many of you, but it is a grand feeling to make it this far. I still have one tumor in my lungs, but it has shrunk 92% in a year and a half. Also I am now a proud member of the 500 plus minutes in the MRI cigar tube for all the brain scans. No new mets have been found since I started treatment at MGH in Boston. If we keep our hope, we will keep our strength.

The history of the world is the battle between superstition and intelligence.

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Nell's picture
Replies 6
Last reply 7/19/2012 - 6:33pm
Replies by: Nell, Ali, Anonymous

I have heard that local reoccurances at the primary site are common....but do they worsen the prognosis as far as metastasis to organs go? My Dr. did not change me from stage 3, but I am wondering if there may be more liklihood of further spreading because of these local reoccurances. Almost afraid to ask...don't want to borrow trouble, but thought someone out there might have experience ....

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

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Hello all,

Just a reminder for any mel survivors and caregivers in the central Ohio area. The James Cancer Center in Columbus now has a melanoma survivors group which meets the 3rd Wednesday of each month at 6 p.m. @ The Stephanie Spielman Breast Cancer Center.

(Search "JamesCare for Life" to get more info on this and other great cancer support groups)

Oncologists specializing in the care, treatment, and research of melanoma are frequent guests. A symposium in conjunction with MRF just started this past May and  is planned to be an annual event for those in the Ohio melanoma community.

It's just another great way to receive support from those who understand what you're going through.

Hope to see you there!

Karen

"Write it on your heart that every day is the best day in the year." - Ralph Waldo Emerson "Dreary though the path may look to others, it has quiet lights and gentle shades that no other path in life can offer."

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davidfromsingapore's picture
Replies 9
Last reply 7/19/2012 - 4:50pm

Hello melanoma patients and care givers.  I am stage 4 with mets to the brain.  Just started Temodar and whole brain radiation today.  Any of you out there have some good stories about durable responses with this combo (I hope)?

David

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” ― Albert Einstein

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Replies by: Ali, awillett1991, LynnLuc

Wayne and I just returned from his check up appointment.   Only did lab, - saw Derm and saw Dr. B. 

He said he had just returned from a huge conference (do not know if it was OSCO or not) - but they were discussing what to do with patients who had a complete response with ZEL, like Wayne did.  

He said only about 4% of people have this kind of response, but they now do not know really what to do with them.     They are working on a protocol about this very thing and how long a patient should keep taking the ZEL.

Also, they are talking about doing a trial for a PREVENTON drug foro Melanoma mets.   That's all we found out at his point.   In the meantime, Wayne will continue with the full meal deal (4 tabs twice a day) and visit MDA every month -

doing PETS - CATS - ETC. every other month.

This was very, very encouraging to us.    WOW.......a preventive med !!!.  How awesome would that be !  He was very in earnest as he talked to us wanting us to understand these things.....but that he must continue on as he is now -

and we want that very much  TAKING NO CHANCES !   :-)

Just thought I'd share this bit of info we got yesterday at MDA.

Nancy (devoted wife of 3X 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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Nell's picture
Replies 5
Last reply 7/19/2012 - 11:20am
Replies by: Ali, lhaley, Nell, gabsound, LynnLuc

I had a primary melanoma removed from my chest 22 years ago...This January a lymph node appeared in the right axilla. It was removed along with 9 other benign lymph nodes...Since June ..in the last 7 weeks, I have had 3 separate melanoma nodules appear in the right axilla..the 3rd one to be removed tomorrow.  I have a specialist who says radiation is not effective, yet I have read articles saying something different...My scans show that at present the melanoma appears to be confined to the right axilla....What about radiation??  Anybody have a similar experience??

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

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Anonymous's picture
Replies 16
Last reply 7/19/2012 - 11:13am

Hi Everyone,

I visit MPIP , as well as, MIF to gain as much knowledge as I can on Mel. 

For what it is worth, I have noticed an increase in brain mets recurrences from people that post on the BB. Also, there seems to be a trend from people that have taken BRAF & Mef inhibitor drugs.

Maybe I am wrong, but if anyone has taken BRAF & MEK, it might be interesting to post whether or not you have a recurrence with brain mets & how long you have taken BRAF orMEK drug.

Just a thought..anyone have a opinion about Recurrences with  brain mets from BRAF/MEK Drugs?

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HEYJC45's picture
Replies 5
Last reply 7/19/2012 - 11:02am

Just wanted to share my son's journey with Zelboraf which he started on 3/8.  Initial dose 4 pills twice a day.  He had every side effect listed (head to toe rash, joint pain, rash in throat, fatigue, swelling in hands & feet, etc., etc.). Then 7 weeks in, his liver studies went over the top, so doctor stopped Zelboraf for 2 1/2 weeks. Of course, all the side effects went away while off the Zelboraf.  Then since liver lab levels coming down, restarted him on 1/2 dose, 2 pills twice a day.  Side effects came back, but not quite as severe as at the beginning.  As his liver levels continued to come down to finally reach normal, his dose was increased to 3 pills for 4 weeks, and now back on full dose of 4 pills.  Each time the dose was increased, side effects increased for the first several days, but then leveled off.  Doctor has treated the joint pain with low dose prednisone because both Tylenol and NSAIDS effect the liver.  That has helped a lot.  He has had Mohs on 2 squamous cell carcinomas on is face and neck and several warts removed.  But his scans at 8 weeks showed a decrease in most mets and no increase in any.  Nearly all of the pain from the tumors is gone.  His energy level is good now and he has even gotten a bike to ride after the sun goes down.  We just all hope the Zelboraf continues to work.

This might give someone else an idea of how the side effects come and go with dosages and length of time.

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Mymlan's picture
Replies 4
Last reply 7/19/2012 - 9:31am
Replies by: Snickers60, Mymlan, lhaley

So I started off with a Diagnosis of Melanoma Stage II, left ear, sent to M.D. Anderson who gave me a preliminary diagnosis of Atpyical Melanocytic Proliferation on my original slides... They then sent for the remainder of my mole and performed their own biopsies, final diagnosis: a cluster of shallow melanomas without clear margins, most towards the edges of the mole. Surgery is scheduled for Monday and Wednesday. They'll do the excision on Monday and the plastic surgery on Wednesday. 

I am very new at this...what should I make of all this...? Unclear margins? Any input is greatly appreciated! :)

"The journey of a thousand miles must begin with a single step" - Lao Tzu

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Gene_S's picture
Replies 2
Last reply 7/19/2012 - 1:49am
Replies by: washoegal, Gene_S
Today my wife and I went to meet with a local Holistic Doctor in regards to her occasional rapid heart beats. Our previous experience's with a heart MD resulted in her getting asthma from a drug called Caduet.  I am not sure if they still prescribe this drug or not since it has been awhile since I have seen their TV advertisement that claims that they can cure two problems with one drug.  The two problems are for cholesterol and high blood pressure.  My wife took this prescription drug which resulted in her getting serious hives inside and outside of her body and now a life time of chronical broncial asthma.  So much for pharmaceuticals.  I guess that  I am really blessed that she survived this so called treatment and we are now moving on to the next solution.  Today she took a bioscan (also recommended by Dr. Oz)  to determine what course of action she should be taking.  The results showed that she should detox the bowels (even though she does go regularly), take sarsarpilla and parsley. This hopefully will cure her heart problems.
 
Afterwards I asked her about the causes of melanoma.  Which she informed me that melanoma and all other cancers is a result when cells have an imbalance and attack the other cells.  This is usually a result of not being hydrated (not a lack of thirst) as we do not consume enough of good water to flush out the bad cells in our bodies.  I have to agree with her as I do not drink nearly enough water to clean out my system.  Her recommendation is to take your weight and divide it by 1/2 and this should be the amount of ounces of pure water you drink daily.  An example would be that a 200 lb. person should consume 100 ozs. of pure water daily.  Some of this water can be obtained from the foods you eat and not strictly drinking that amount of water.  I was waiting for the S Bomb (you know sunshine) and guess what there was no mention of sunlight causing melanoma in our discussion.  For those interested in doing a bioscan the software that she had was made by a company named Compass.  I will do some more homework on this bioscan system.  You may be interested in it to see what you are lacking in your personal life style.  Also mentioned was the fact that any supplements that you take should be top notch and try to not buy synthetics.  She has very encouraging words to say about the Gerson Theory if you don't wait till you are on your deathbed and expect miracles.  There also is a truly Holistic Cancer Center in Florida if you want to go this route.  I know that there are many warriors looking for a solution to solve their melanoma cancer and I hope that this gives you some hope.
 
Best Wishes,
 
Gene (and loving wife Judy)

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

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cdavis324's picture
Replies 2
Last reply 7/18/2012 - 11:24pm
Replies by: cdavis324, Janner

I had Melanoma stage 3 in 2007 on right lower calf. Had large excision and SLNB. SLNB showed one node was positive. All Cat Scans and ultra sound have been good. I had a Pet Scan done this week.  

Findings: Head/face   Focal ssymetric hypermetabolism is inseperable from the right parotid and inferior right auditory canal, suv 5.0. physiologic FDG uptake is seen in the visualized region of the brain,large salivary glands and oropharnx.

Impression: 1.Focal asymmetric hypermetabolism is inseperable from the right parotid and inferior right auditory canal possibly inflamamatory/infecious etioloy or malignancy. clinical correlation recommended.

2. elsewhere, no hypermetabolic lesions

My Dr is on vacation for 2 weeks. Nurse called today with results but has to wait for covering Dr to view the report. She was not much help in explaining. Can somebody please help me understand these results. Thank you so much. 

Thank you

Chris

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justlittleoleme's picture
Replies 19
Last reply 7/18/2012 - 10:12pm

At 4:15 am today, I lost the love of my life. He fought a good fight until the bitter end. Someday I will write an update post to recap our past few weeks with this dreadful disease.
He was a father to three wonderful children. Daniel,19 Emily, 18 and Benjamin who is 9.
He loved his family above all else. He was the most selfless man I have ever met and was lucky enough to fall in love with.
Please pray for us this week as we say goodbye to his earthly body. We rejoice knowing he is with our Lord!
Thanks barb

We don't know how strong we are until being strong is the only choice we have.

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