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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natasha's picture
Replies 19
Last reply 4/12/2013 - 7:34pm

Hello dear friends !!

    It is more then an year since my diagnosys of melanoma stage 1a and one year since my WLE.

   I visited hospital every 3 months for the year .

  My scar on the breast is healed perfectly - even unnoticable but yesterday I noticed raised part on the scar , it feels as a a small lump and was a bit blueish..

  I pressed on it several times ,trying to invistigate that it is and blood appears under the skin ,so now it is blood spot still stays under the skin , and this lump is not bluish any more.

 Can it be local reccurence ? Is it possible to have some blood clots in the scar after 1 year???

 I made appointment with local dermotologist but still need to wait to see her.

 I would appricate any advice and opinion.

 Thank you very much !!

 Natasha

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mark1101's picture
Replies 5
Last reply 3/19/2013 - 9:48am
Replies by: mel123, mark1101, 94z28joe

I am 1 week in to ipilimumab for stage IIIc melanoma which involved 5 left axillary nodes.  These have been removed and the original site margins have been cleaned as well.  I was curious about others here who are in or were in or are considering entering this trial.  What are your experiences and thoughts?  I am in arm C and received my first infusion of 3mg/kg ipi a week ago.  So far I am feeling good, but feel paranoid waiting for some symptom or another jump up and bite me.  Sometimes our imaginations can be our worst enemies.

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mark d's picture
Replies 10
Last reply 3/20/2013 - 1:59am

I have faced the fact that cancer is an evil creature that may take my life. I am just trying to see how many people have kicked its ass. I am stage III with 3.6 mm nodular melanoma one sentinel node was positive and getting more nodes cut out. How long did you have it and what stages were you, what treatments and how long have you survived this evil? I am fighting this with everything I have and will have. I am not going to quit just yet. Also I am in central Texas. Is anyo e else around the Ft hood area?

Mark D.

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Amanda's picture
Replies 3
Last reply 3/18/2013 - 8:04am

Hello all, just wanted to let others know, that Randys tumors that we can see and feel, (under his jaw bone, another one right below on neck, and a few on the chest wall) all have gotten noticably smaller.  Especially the two under the jaw bone.  There is the bigger one that was portruding out and was very noticable...and a the much smaller one below it.  The larger tumor on the jaw is almost flat with the normal contour or the jawline, and the smaller one feels tiny.  This is all after only two infusions of merk-3475.  We go for next infusion tomorrow, and will confirm what the Dr. says tomorrow as well.  But we can literally see the difference, so hoping it continues.  I will confirm tomorrow with you all, have a wonderful night

-Amanda
girlfriend of patient randy, stage 4, no primary.

"Give thanks in all circumstances"

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I ran across this program OnDemand on XFinity.  It talks about understanding your genetic code but has a segment about a fellow with stage IV melanoma taking Zelboraf.  I found it online at this location, too.  NIH is the sponsor.

http://www.pbs.org/wgbh/nova/body/cracking-your-genetic-code.html

http://www.MelanomaResources.info

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Ann from Iowa's picture
Replies 19
Last reply 3/19/2013 - 12:49pm

So this will not become to lengthy...go to my "Ann from Iowa" to read of my husband's melanoma history.  In short he has been NED now for 2 1/2 years, Stage IIIB, Leukine treatment for 1 year and radiation to auxillary, left arm.  He has been a smoker and chews tobacco since he was 14 years old and is now a very healthy 69. 

We went for his 6 month check-up last Friday and his chest x-ray showed lungs clear, no other problems.  Skin exam done by a lady other than the doctor and she discussed his smoking history.  He was told when they found the melanoma in his lymph node, 5 cm with extranodal extension that he must quit his tobacco use.   Well, that has not happened, the old adage that "I am invincible."

The Dr. a melanoma specialist came in the room, did not say one word as to his good report but began to lecture him on his continued use of tobacco, and I feel he has the right to do this.  But what stunned me was that he told my husband that if he continued his smoking and chewing tobacco he will not treat him in the future for ANY cancer that according to him will come at some time or another surely within the next 10 years.  The Doctor said he had previously been a smoker and quit and if he could do it so could anyone.  He turned to me and said I was to make him stop.  He then left.  End of  appointment.  To make this story complete, within a half an hour my husband was smoking a cigarette and has not looked back yet.

I am the one needing the help as I just don't know what to do as to future follow up appts. with this Dr.  Since it has been 2 1/2 years since he ended treatment all he gets now is a chest x-ray and visit with the Dr.  It  seems to me that if my husband does not stop these habits that we should not go back for further appts. as I am taking him at his word, he would not treat him anyway if he were to find more cancer or a smoking related cancer.  Should we just go to his local dermatologist now or should I at least go by myself and talk to him for advice.  Frankly, I am so upset by this I cannot see straight and certainly do not know what to do. 

 

Because my husband was told that the Leukine treatments that he took have been proven to not be of any benef,  but his melanoma has not returned after they just about gave him a death sentence when it came back in his lymph node I think he has taken this lightly and he truly is addicted to tobacco as he has watched his 5 brothers and sisters die young from COPD and heart disease but still has not stopped .  How can you not take that seriously.  In any case, any advice would be appreciated.  From my perspective if all doctors were to quit treating patients because they refused to either lose weight, quit using so much salt, go on a special diabetic diet for all the other bad health issues, many people would no longer have a doctor to treat them.  Just thoughts that are running through my mind as I try and deal with this.    I read daily to try and learn about melanoma just in case his would return.  Education seems to be the best route and this site has so much good information along with the support.  Thanks for the ear.

 

 

 

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POW's picture
Replies 17
Last reply 3/17/2013 - 9:57pm

My brother passed away peacefully in hospice care yesterday. I wrote in detail about his passing in the "Off-Topic" forum.

Mike is at peace now, together in Heaven with his beloved Margaret. Our family will be OK. Thank you all for your help, advice, and support over these months. 

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Janet Lee's picture
Replies 8
Last reply 3/22/2013 - 9:59pm

I posted the following in a thread started by POW regarding insurance paying for Zelboraf for non-V600E BRAF mutations such as BRAF V600R. I hope it's ok to post it again as its own topic, as I want to make sure people see this update.

First, thank you so much to POW for her help in this nightmare of trying to get Zelboraf covered by our insurance company. And eternal thanks to everyone on this website for their insight, knowledge, help, and understanding.

I can understand the FDA originally approving Zelboraf for the BRAF V600E -- after all, the vast majority of BRAF murtations are V600E and it makes sense to concentrate on that group. However, 19 months after the inital approval, shouldn't there be something more to offer for the BRAF mutations OTHER than V600E? My husband Don is V600R.

We have appealed three times to our insurance company; the last appeal was even supported by our Congressman from central Massachusetts, Jim McGovern. Even that was denied -- as "not being medically necessary." At their request, we are sending more information to the Office of Personnel Management in Washington, DC to prove that Don is BRAF positive and is being treated for metastic melanoma. In all honesty, I do believe we are dealing with idiots.

In the meantime, mainly through the efforts of Dana Farber, Genentech has agreed to provide Zelboraf to my husband, Don, and he took his first dose at 11:55 a.m. yesterday. (YAY!) Interestingly, even Genentech has in essence tied its own hands and is subject to strict overisght by the FDA in what it does with Zelboraf, and they were not "free" to simply give it to a patient that did NOT have the V600E BRAF mutation. Dana Farber supplied an enormous amount of information to Genentech for them to even consdier giving the drug to Don, including the "Australian" paper from December of 2012 citing exciting positive results for V600R patients.

The other side of the story with Genentech is that Don and I had to "prove" that we were beneath a certain income threshhold. It seems that, if your combined household income is above $100,000 per year, you are not worth helping. If your household income is $99,000 or less, it seems that your life is worthy of help. With Don's illness, he has been unable to work since Christmas; I am not working so that I can help take care of him. So I had to provide "proof" that our income would be below $100,000 in 2013. That may sound like a lot of money to many people, but we are two professionals who have worked for over 40 years to reach this level and have planned for a contented retirement together.

We are continuing our fight with the BC/BS Federal Employee Plan. I honestly believe that the mission of insurance companies is to figure out a way to NOT pay your claim. I believe the bureaucrats put on their blinders and see "V600E" and nothing else.

Don's disease is quite advanced, and I know that waiting these past 6 weeks for a systemic treatment has been detrimental to his overall status. We pray that the Zelboraf will give him some relief from his pain and give us some quality time together.

Until Genentech came through this week with the Zelboraf for Don, Tim Turnham of MRF was unbelievable in his help in getting us into the pipeline for a Glaxo Smith Kline compassionate care use of Dabrafenib. According to Tim, GSK actually wants to use the Dabrafenib on rare BRAF mutations. Because of Dons advanced disease, we really had no choice but to start the Zelboraf rather than wait even a few more days or weeks for the Dabraneib.

I know this post is long, but I have not really had the time to post recently. Don had to have his brain met surgically removed (cyberknife was ineffective -- and his brain met brew larger and was affecting him dramatically) and he is now in rehab. We believe tumors are now impinging on his lower spinal column, so the Zelboraf is desperately needed.

Thanks again to you all, who give me hope and support!

Janet Lee 

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bj63's picture
Replies 5
Last reply 3/20/2013 - 5:13pm

Hi all:

I've recently created a profile if you're interested in any background info.

I've been on Zelboraf since November, with good results overall.  However, I'm now seeing a lot of new small, dark moles - like my arms and particularly my legs have been sprinkled with pepper.  This in spite of the fact that my last PET scan showed dormant tumors and no glucose activity.

Anybody else  on Zelboraf seen this?  I'm scheduled to see a dermatologist next week.

BJ

Sometimes no news is the best news!

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Snickers60's picture
Replies 5
Last reply 5/6/2013 - 7:38am

But last fall when we were sitll kind of in the heat of the battle and I was so sick, Wayne found a mole on my back.  He said:  DARLING, you need to get this mole seen about.   I did not think I was the MOLE PROBLEM TYPE.    He looked at it again last week and WOE.......what an ugly mole.  It has changed and it is much uglier.    I have an appt. for a biopsy on Monday !    

I know this sounds absurd with all we've been through with Wayne, but I have been so worried over him and I've had a lot of my own other issues and very debilitated with joint surgery that I just did not follow up.    

LIGHTNING CAN'T STRIKE TWICE CAN IT ! 

I think it's probably a dysplastic nevi.............fingers crossed - prayers said. 

Nancy (devoted wife of 3 X Warrior Wayne)   

Wayne is doing great by the way.   I've just been toooo ill to be on here.  

BLESSINGS AND HEALTH TO YOU ALL......

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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thrashter's picture
Replies 4
Last reply 3/18/2013 - 8:46pm
Replies by: aldakota22, Zan, Tina D, hbecker

After 3 rounds of Biochemo my PET scan showed 1 of 2 unoperable tumors gone. No other tumors found hoo-ray. Surgery scheduled for 28th to remove remaining tumor at collarbone area. What a huge relief to find out before surgery.

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Wendi Lynn's picture
Replies 5
Last reply 3/18/2013 - 4:23pm

Hi Fellow Warriors and Caregivers!!

Although I don't post often, I do read daily.  I weep with the rest of us as we lose a loved one from the group and I cheer with those that share wonderful news!  My profile states my history, so I won't give the background here, but I'll start with my present issue.  I had scans on 2/7 and although I haven't seen that actual report, a mass was found on my liver (and some possible lymph node involvement).  Biopsy confirmed metastasis to the liver.  My new oncologist was kind enough to call me and give me the information (instead of making me wait to come in and see him), and informed me he would be taking my case to the tumor board and speaking with his colleagues at UCLA as well as testing for the BRAF mutation.   So, to make a long story shorter...I am now scheduled for a consultation with a radiation oncologist to discuss treatment on the 25th.  Has anyone experienced this?  I thought this would be a one shot deal, but after calling to schedule the appointment, it sounds like it could be multiple radiation sessions?  Just curious as to what I'm in for this time around.  I'm all about the PMA but can't help but be a little scared. 

You all hold a special place in my heart.  It's hard to relate to others how important this site and you people are to me and how much information I've gained from you all.  Keep up the fight and great work!!

Wendi

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_Paul_'s picture
Replies 1
Last reply 3/15/2013 - 8:50pm
Replies by: hbecker

Just met with my melanoma oncologist at Johns Hopkins following my last clinical trial GVAX treatment. He wants me to get a spot in my original excision site biopsies as he noticed some discoloration. My
primary was a 1.3 mm deep modular on the back of my head.

Is local recurrence common?

Thanks - Paul

To exist is beyond fantastic.

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Tim--MRF's picture
Replies 10
Last reply 3/15/2013 - 10:59pm
Replies by: kylez, Cielo, Charlie S, Anonymous

We have all been frustrated with Chat not working and with some issues related to posting.  Here is an update.

I just had a call with Janner and our IT folks (thanks Janner!) and I think we have a  better understanding of the chat and posting issues.

Apparently Chat requires "flash" and some recent updates to flash are incompatable with the current Chat software we use.  Our IT folks are working with the vendor on an update that is compatible, but are not sure how long that will take.

In the meantime, we have asked them to find an "off the shelf" chat software program that will allow us to have some kind of chat capability.  This will likely be a stripped down version with less functionality, and may be prone to spam.  Our feeling, though, is that it is better to have an inelegant solution now rather than a perfect solution at some future time.  This will hopefully be up and running in the next couple of days, and will only be in place until we get the main chat room software working again.

Also, we have all seen long delays between when we hig "post topic" and when the post actually occurs.  This results in some people accidentally posting multiple times.  Apparently this is because of some issues with the service that blocks spam.  Again, they are working on a solution but it may take a while.  In the interim, they will put a message on the board saying that posts take a few seconds to process and asking people to only hit the "post topic" button once.

Again, I apologize for the issues we have had and appreciate your input and patience.

Tim--MRF

 

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ncdaniel's picture
Replies 1
Last reply 3/15/2013 - 9:47am
Replies by: d1i2x3i4e5

My wife had her first Dose of Yervoy on 2/6/13 now has had major problems colitis  now on 80mg Prednisone reducing to 60 for 3 weeks then further reduction. Has anyone had bad first/second dose reaction and then able to continue with Yervoy? What happened on restart any better? Hoping to continue but wondering what  others experience was.

Daniel

Trust in God - Live one day at a time

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