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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Jeff's Mom's picture
Replies 4
Last reply 4/14/2012 - 3:49am
Replies by: LynnLuc, Jeff's Mom, Linny, Anonymous

A big thanks to boot2aboot for the information about PALS Service.  We called on Friday and Amanda got the vouchers to my son and his wife on Monday - they left for Moffitt (and Dr. Weber) yesterday.   You were right - Amanda was fantastic.  If it weren't you (and this forum), we never would have known about the good people at PALS Service and Southwest.  Cannot thank you enough.  Jeff and Melissa got in to see the good doctor today.  We are so grateful.

Thanks again,

Bridgette (Jeff's Mom)

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There is a wonderful event taking place in Indianapolis, IN on June 2.  Outrun the Sun raises money that goes directly to melanoma researchers and to education and prevention of this disease.  My family has taken part in this event for 4 years.  It is family friendly and very well done. 

http://www.outrunthesun.org/events/RAMINDY.htm

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ChristineL's picture
Replies 2
Last reply 4/13/2012 - 6:37pm
Replies by: Phil S, jag

Hi all,

Some of you may remember MonicaD (from New Brunswick) posting in 2010 when she was diagnosed at Stage IIIb and had undergone a lymphadenectomy.  She did a month of interferon, another surgery, radiation, and zelboraf since that time.  She lost her battle two days ago after fighting with all she had.  She had amazing energy and a tireless spirit, but as we all know, melanoma does not discriminate, and the only solace I can find is that during her time on this earth, she made the world a much better place and deeply touched everyone who knew her.  I hope that some of you were able to get to know her as I did, for she was an amazing woman, one who will always have a place in my heart.

Fight on.

ChristineL

Fight like hell

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/13/2012 - 5:49pm
Replies by: Tim--MRF

Hi, does anyone know what happened to Dr. O'day that he disappeared for so long? How is he now? Is he back to be the same him?

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Cynaburst's picture
Replies 3
Last reply 4/13/2012 - 12:26pm
Replies by: Bob B., Cynaburst

I just had my second wide excision in a decade.  While my first lesion was an in situ, this one was a Stage 1A, and my surgeon also recommended a SNB due to the presence of some regression and the fact that this lesion regrew at a previous biopsy site in only 6 months time.

I was unbelievably relieved to find out that my pathology on both the wide excision and SNB came back negative.  However, I am now completely paranoid and want to do whatever I can to make sure that I am as vigilant against future problems as I can be. 

Has anyone in the L.A. area had photographic mole mapping professionally done? If so, where did you do it?  Did you continue to follow up with your regular derm, or did you switch to someone who does the mole mapping?  I would like to stay with my current derm, but since she does not offer mole mapping, I would lke to find a way to have her incorporate the technology into her exams.  Any insight as to cost?

Thanks for any advice or input you can give me.

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yoopergirl's picture
Replies 5
Last reply 4/13/2012 - 2:59am

My last ipi infusion was Feb 20th, that was the 3rd one, since I got side effects bad enough to put me in the hospital, the Oncologist will not give me my 4th one. After the second infusion I had gotten very itchy with no rash and then that left, then the stomach issues and Uevitis with eyes after the third. Now that my eyes are getting better I again started with the itching but now have the rash too, my tumors on my arm do not seem to be shrinking just by sight. I see the Melanoma specialist on the 23rd for blood work and a skin check and then 4 weeks later another scan. We are still hoping for a response but I don't know what to think with all these side effects. Has anyone been throught this many? Thanks for any responses. 

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blairashley's picture
Replies 8
Last reply 4/13/2012 - 12:10am

Hi all.  Just received word from my oncologist that my lymph node biopsy (right armpit) contained spitzoid cells and he recommends being aggressive and treating me for stage 3a. 

?!??!

I am having a PET scan & brain MRI on Thursday, plus a pre-op appt to remove more nodes.  I am really confused.  Not one month ago I was told no further treatment was necessary after my February wide-excision & inconclusive SLNB.  What are spitzoid cells anyway?  Doc said they're common in younger people (I'm 29). So confused as to what's happening......  Guess I'll know more on Thursday. 

Any advice?

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Anonymous's picture
Replies 2
Last reply 4/12/2012 - 5:49pm
Replies by: Anonymous

I know, NED any-ache-could- be- mets paranoia, but this deep aching feels different than muscle soreness. What's odd is that I never have problems with my lower back. This starts upon waking, lasts several days, goes away for days and then I wake up with it again. It doesn't get better when resting, walking or sitting. As a stage IV NED-er, I feel sort of ridiculous worrying when others are dealing with real symptoms, I was just wondering if anyone has had mets with these symptoms. Thank you for any insight.

NancyGM

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bikerwife's picture
Replies 5
Last reply 4/12/2012 - 1:47am

scans showed today that some sharnk some grew and some new ones. Dr doesn't want to wait. For next scan wants to start zelboraf. Also going to do 5 radiation treatments on tumor under arm. I'm confused he said this scan would show growth before we had it. Says he's afraid if he waits ippi might not work but even though we doing zelboraf ippi might still work.
Feeling pretty bad at this point. Does any one know anything about zelboraf?

I'm still prayi

ng for God to open doors.

What God leads u to he will. Lead you through

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justlittleoleme's picture
Replies 9
Last reply 4/12/2012 - 1:41am

Mondays scans showed more progression. One spot on lung, right rib, spots on pelvis and spine grew.
He is in the hospital still trying to get his liver back to normal. May be adding cellcept to the mix and start weaning the steroid. He is now on insulin to get the sugar under control from the steroids. Need to get on with the fight! Temodar is next up!

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

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Karin L's picture
Replies 6
Last reply 4/11/2012 - 4:26pm

Today is 2 days shy from 1yr. ago beginning 2 courses of HD IL2.  I had a PET/CT and the results were amazing.  No signs of disease in the lymph nodes, liver or bones.  One area did light up however, and that is the L5 area in the spine (I did have disease there previous).  Getting a lower spine MRI to determine exactly what is going on and we will go from there.  I have had some severe neuropothy in both hands and feet (to the point I could feel nothing up to my knees) and other parts of the body were pins and needle feeling also (lips, teeth, etc.) and the neurologist thought the pain in my right leg was from a pinched nerve.  After completing Solu-Medrol and tapered off Prednisone the neuropothy is under control except for the right leg area still having numbness.  This is all connected somehow so we will get it figured out! 

I almost made it into the 6% club!!!  I choose to believe I just might get there yet : ).  As bad as it was within the liver and the bones...this is crazy good news!  Gone, all gone but this one area.

 

Karin

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24hourmom's picture
Replies 10
Last reply 4/11/2012 - 12:27pm

 I had to create a new login (24hourmom)--I wrote an original post as 24hourmommy. No matter how I tried, I couldn't login under the old name. I realize my post is very long, I'm sorry. I log on a lot and read for support, but today I need to post. I just don't know where we are headed with all of this and the doctors have been very vague.

After I posted last May, my husband's 3rd Yervoy treatment was cancelled due to the diarrhea and he  was put in the hospital for the entire month of July.

We were told in early July that scans showed shrinkage from the 2 Yervoy treatments  but then August scans told us the melanoma was growing again. He went through all of that suffering for almost two months and if he'd had the 3rd Yervoy treatment, I think it would have been deadly.

In August,  I took him to Columbia, SC to get into a Zelboraf trial and he was accepted. Then Zelboraf was approved early and he was removed from the trial. He started Zelboraf as a prescription in September.

He has been on Zelboraf since Sept. and his Nov scans showed us "considerable shrinkage in all areas of concern", his spleen, lymph nodes and lung and liver all responded. His doctors were thrilled and he was uplifted.

We went for his routine three month scans 3/16/12 and were told there is new activity in his liver and his brain. He had to stop his Zelboraf to start radiation, due to doctor's concerns about skin problems.

We started Whole Brain Radiation (14 treatments). He has one lesion (2cm) on his cerebellum, we're told he'll need pinpoint radiation later  for that and many small spots that they hope the WBR will help.

The radiation oncologist did not want him to start a steroid initially because he wasn't having headaches and said the steriod can damage his liver (which is already a problem) but we had to start the steroid last week. The headaches started and he was vomiting. Now, on the steroid, the headaches are under control.

The nurse intially told him not to drive. Then the doctor told him he could drive at his discretion but said "not to quote him on it and don't go on the interstate". I'm  confused because I don't think he should be driving as one doctor told us he could have a seizure at any time.

He will recieve his last WBT tomorrow and can restart Zelboraf  next week. We won't go see the doctor again until May or have scans for at least 6 weeks. I guess now is just the time to wait and see.

He is exhausted all the time and I am getting mentally worn out.

I feel horrible just writing this because I know it must be harder on him than it is on me but the focus is continually on him and this disease. The efforts I make toward normalcy are met with resentment and then I feel guilty. I am so sad for my kids this week because it is Spring Break and they need a break from all of this.

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melmar's picture
Replies 6
Last reply 4/11/2012 - 10:36am

Just wanted to report that I just had my first 12 week scan since starting Merck's anti pd-1, and I am thankful to report that it appears to be working! Spot in lung shrinking. Spot on back shrinking. Most importantly no new spots in brain or elsewhere! Will keep posting future results as I know many are following this study. Thinking of the rest of you out there and hoping for additional success stories.

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CaringforMom's picture
Replies 10
Last reply 4/10/2012 - 10:31pm

Sad to report that we began Hospice this week for my Mom.

She fought with all the strength she had, but the agressive cancer has overtaken her.

Additional mets in brain, tumors still growing in liver, lungs, abdomen, bowel.

Just too much to fight.

Hospice has been a huge blessing already.

The doctor did not give much of a time estimate, other than 1 to three months.  He also added that this is a very agressive cancer.

I think if we were more agressive early on, if ipi had been available earlier.....a lot of "what ifs" running through my brain right now.

 

Be agressive with your options - request ipi early and the BRAF test early.

 

There are a lot of great new methods/drugs available and my gut tells me that if we were able to get those new therapies earlier we would have had more of a chance of recovery and more years with my Mom.

Keep fighting everyone!

Thank you for sharing, for your posts and for sharing information.

You have all been a blessing to me.

Would love any information from those who have entered Hospice from Stage IV.....what kind of time do we really have??

Thanks so much.

I can do all things through Christ who strenthens me.

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Anonymous's picture
Anonymous
Replies 24
Last reply 4/10/2012 - 5:57pm

My appt. was cancelled without explanation but that he is not with the clinic.

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