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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Private  messaging between POW and I via the profile contact route worked today.

I'm me, not a statistic. Praying to not be one for years yet.

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Junk1962's picture
Replies 6
Last reply 9/26/2013 - 8:23am

If  you read my past post my husband was diagnosed with Melanoma with an unknown primary Stage IIIc - IV back in June.  Though he is currently NED the size and depth of the tumor was extremely large (15mm?).  We opted to take part in a clinical trial at DFCI for Yervoy.  He got the 10mg dose. He had his first infusion about 2 1./2 weeks ago and had no side effects.  He was scheduled to go in for his second infusion next Tuesday.  Now, guess what - they cancelled his arm of the trial!  They had a few deaths in this arm of the study and decided against continuing this arm of the trial!  There are two other arms - a 3 mg yervoy and inteferon.  They will only allow the 10 mg to be transferred to the inteferon arm!  Doesn't seem fair to us but, that's the only option!  After only one dose of yervoy we are very confused on what to do!  It was such a hard decision to go with the 10mg yervoy and now we are back to square one!  Is it really worth doing the interferon at this point?  Any advise would be appreciated.

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Shelby - MRF's picture
Replies 4
Last reply 9/25/2013 - 7:19pm

Dear MPIP Community,

The reason for this post is two-fold. The first is to tell you about three upcoming educational symposia that the MRF will be co-sponsoring in the next few months. The first will be in Denver on October 26, 2013. The dates for the other locations (Pheonix and Miami) will be announced soon. We are participating in a pilot program where we will combine patient education with physician education. Both sessions will be led by expert medical oncologists. The patient session will highlight melanoma diagnosis, prevention and treatment information. At the same time a different oncologist will provide a presentation to healthcare providers, allowing them to earn continued medical education hours (CME). During the afternoon session, the patients and the healthcare providers will come come together and the content will focus on helping the two groups identify and overcome communication and other barriers to optimal care.

This leads me to the second reason for this post - a request for you to share with me some of the barriers to care that you've experienced. What are some communication barriers have you experienced with your healthcare team? What about other barriers to optimal care that you've experienced? For example, one communication barrier that we've heard a lot is, "My doctor said 'clinical trial' and all I heard was 'guinea pig'." Do you have others? 

This novel approach to combining patient and physician education is very exciting and we'd love to have your input. Thanks in advance for anything you have to offer! 

Sincerely,

Shelby - MRF 

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summergirl75's picture
Replies 6
Last reply 10/9/2014 - 3:03am
Replies by: summergirl75, JerryfromFauq, POW, Anonymous, Janner

I was diagnosed with Malignant Melanoma on Aug 21st/13.  I had a tiny mole on the inside of my thigh that I had never noticed before.  The doctor said it looked a bit suspicious but said I should not be concerned.  He took it out stating that it would give me peace of mind.  Imagine his and my shock when the results came back.  It was a clark level three, superficial spreading variant.  The tumor thickness was 0.65 mm.  No lymph vascular or perineural invasion was identified.  The pathological stage was pT1b, pNX, PMX (No idea what that means)...The margins were not clear...so I had the treatment below.  

 

My treatment:  I went to a dermatologist who found two basal cell tumors on my face which were removed by sort of a burning treatment...(no pathology report was possible).  A wide excision was performed on my leg and the pathology report came back clear.  Chest x ray clear, blood work clear.  

 

My questions:  I'm nervous that I should have had a pathology report on my basal cell tumors?  Please give me your opinions on this but don't scare me too much :)

Secondly, I have pain in my left chest and my left hip...I think this is because I had a baby two years ago and I believe that this is just aches and pains related to pregnancy, delivery, holding baby, breast feeding, etc etc...I am going to go to a chiropractor to see if im out of alignment.   Doctors ran a chest x ray which was clear and extensive blood work which all came back clear..  Should I be concerned that even though my pathology report said I am clear that I might not be...? Is there any advice considering the information provided above.  

 

Also, are there any links to good reliable natural prevention for this.  My oncologist does not believe that this was sun exposure related.  

Thanks in advance, I am just having some anxiety right now about the questions above...

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JoshF's picture
Replies 6
Last reply 9/24/2013 - 2:38pm

One thing I didn't mention was that BRAF tests came back negative. I'm not sure whether that's a good thing or bad thing. Can someone shed light on this? I know it excludes someone who is braf negative from many treatments but don't understand it much outside of that.

Let's work for better treatments....for a cure!!!!

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JoshF's picture
Replies 6
Last reply 9/25/2013 - 1:44am
Replies by: MattF, JoshF, POW, doro, DeniseK, SABKLYN

After hearing from many of you, I stopped feeling sorry for myself. Though it consumes much of my thought, I'm trying to keep a positive attitude and push forward. So I just wanted to update everyone as to what I've done in my fight.

 

Opted to have surgery at Northwestern Memorial. All of my files had already bent sent over electroincally except path reports from surgery last week. They also wanted path slides. I went grabbed everything and drove down to Northwestern. Surgical Oncologist came out and met me and said she would schedule me in for Wednesday.

So by time I got home she called and scheduled meetings with surgeons (surgical oncologist & plastics), has PET/CT lined up, Brain MRI...all on Wednesday!!!! Not sure if I'll get results because I see surgeons first...best she could with short notice. I'm not complaining. Now just need to deal with scanxiety!!!! I just had them at end of Feb...all clear!!! Guess some things never change...only difference is that I have melanoma again so more worried about spread!! Keep saying...please be local!!!!!! Also, pathology report was not good...in terms of how it was written. No miotic rate, surgery report said thinks it's a lymph node but path says nothing, nothing about margins though surgeon assured me he got everything  and now we look for metastatic disease (i.e. scans) and do another surgery for microscopic cells. This sound normal?

Anyway, I received call from medical oncologist who wanted to bring me up to speed on pathology, next steps etc... I informed her what I did and where I'm going for surgery and she applauded me for moving fast and said I picked great place to have surgery. I asked about pathology and how written...she said probably not lymph node. Of course I asked about distant metastasis given scans 6 months ago...of course she didn't say oh everything will be great...only that given the history and recent tests she wouldn't be suprosed if they were clear but docotors/oncologists don't go on speculative...need definitive.

So that's it....pray for clear scans.....and to get on with it!! Thanks everyone for being supportive. I've heard many of you say....you're your own best advocate!!!!

Wishing you all the best!!!

 

Josh

Let's work for better treatments....for a cure!!!!

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DeniseK's picture
Replies 15
Last reply 9/28/2013 - 11:28pm

I am so touched that my family here is worried about me and is wondering how I am.  It makes me feel really good knowing you all care :)  (((HUGS TO YOU ALL)))))

So here's my update:

I went to see my local oncologist not feeling very well, I had been losing weight rapidly, a lot of sleeping, I could barely talk, eat, or swallow due to a met growing near my larnyx, I was prepared for the worst.

 I told him I'm not giving up so we are NOT here to discuss hospice we're here to discuss what's next,  He has another patient that he's been working with with Dr. Minor my specialist so he recommends MEK inhibitor.  I was scheduled for radiation on my throat and my arm.  Today I called to cancel those appointments because the MEK has reduced my tumors!!!!  The one on my arm is almost gone.  I have my voice back and can eat and swallow just fine.  Yesterday I ate so much my stomache hurt!!  :)  I have only been on MEK for a little over a week and it;s amazing!  I am still taking 1/2 dose Z but changing that to Dabrafenib soon, Maybe.  We're scheduling an MRI to see what;s going on upstairs so maybe I can get into a trial still.  

I know I've been given this short window of 6 months to a year with MEK but by then Anti PD 1 may be approved.  I am assuming it is the MEK that is shrinking the tumors and not Ipi but that could also be kicking in.  Who knows? All I know is I'm feeling good and feel like I've been given a miracle.  My daughters wedding is in March 2014 and I feel like I will be there crying my eyes out!  :)  

I didn't even think of MEK being an option. 

Thank you all so much for caring.  

All my best to you all.

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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For stage 4 melanoma with nodules in the lung, oncologists are giving the choice of interleukin 2 or PD1. What are the differences between these two options?
IgorPuzanovMD (Physician - Oncology (Verified) ) - 06 / 05 / 2013


http://talkabouthealth.com/for-stage-4-melanoma-with-nodules-in-the-lung...

HD-IL2, is FDA approved since 1992, is a taxing therapy delivered best in specialized centers of excellence as inpatient intravenous therapy (5 days in hospital, 9 days recovery at home, 5 days in hospital) which was shown to cure 5-8% of patients and help stabilize or shrink disease in additional 20-25% (usually for 7-24 months).

PD-1 therapies are very recent, but with exciting potential to be delivered on outpatient basis, in a vein, every 2-3 weeks and with objective substantial shrinkage in 20-50% of patients. Long term results from Dr. Sznol reported at ASCO 2013 suggest durability of these responses for 24 months. However, it is not yet clear if the long term cures will be observed at the same (or better/worse) rate than with IL-2.

Currently, I encourage patients to enroll on PD1 or PDL1 trials when available as HD IL-2 can be given as standard of care after that therapy. Some patients unfortunately will not be healthy enough to get IL-2 after PD1. If that is a major concern, HD IL-2 can be given first. However, some PD 1 trials will not allow prior HD IL-2 or may close by the time progression after IL-2 develops.

It is a decision best made with your treating physician.

I'm me, not a statistic. Praying to not be one for years yet.

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casagrayson's picture
Replies 5
Last reply 9/24/2013 - 7:57am

I haven't seen Denise on the forum in several weeks.  Last time she posted she was having a really tough time.  I'm hoping she will see this and check in.  Does anyone here have another way to contact her?

Strength and Courage,

Susan

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sbrooks90's picture
Replies 2
Last reply 9/23/2013 - 7:58am
Replies by: POW, blden2186

Hello Everyone,

I received a strange email today from someone on the MPIP board asking me... since I was a stage III patient to do a 40 min phone survey for money (that it would help other patients etc etc). Just wondering if this is real or not and has anyone had experience with this before? I am very skeptical

Thanks,

Samuel

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Richard_K's picture
Replies 2
Last reply 9/26/2013 - 9:16am
Replies by: Tim--MRF, Tina D

There was a very successful 5k at the New Jersey Miles for Melanoma today. After a night of heavy rain, the sun came out and dried the course, helping many to get personal best times. I'm not sure if it was a personal best, but Tim Turnham "Tim--MRF" took first place in his age group. Congratulations Tim!

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Anonymous's picture
Replies 7
Last reply 9/24/2013 - 5:44pm
Replies by: JerryfromFauq, POW, Momrn5

Good Morning,

Yesterday, I tried the the "private message" function on the new website. I sent ouy a few "private" messages and have received NO responsed back.

Yes, maybe the MPIP members did not want to repy to my message.

HOWEVER< can anyone VERIFY the private message function is working with the new website.

Thanks for your help.

Josie

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jogo's picture
Replies 3
Last reply 9/24/2013 - 3:14pm
Replies by: JerryfromFauq, jogo, Momrn5

This is all happening very quickly for me.  I felt a lump on the left side of my face May 6th.  June 6th, I had a total left parotidectomy and radical disection of the the lymph nodes/glands of the left side of my neck.  The primary melanoma was never located nor identified.  After testing and randomization, my first infusion was July 30th.  I had 2 infusions of ipilimumab and had diarreah for a few days before I was to have my 3rd infusion.  It [diarreah] stopped after 2 days of Budesonide and Imodium.  It [diarreah] resumed three days later, the weekend before my rescheduled [3rd] infusion.  I also had a temperarure of 101.7 F.  I was hospitalized.   A colonoscopy confirmed ipilimummab induced colotis.  I'm on a steroid regemin [Prednisone starting 120 mg and tapering].  The oncology team told me I will remain in the clinical trial but will not be resuming the infusions. I had just 2 infusions of 3 mg/ Kg body weight.   I am now dealing with colotis.   It's been a five month roller coater ride.  The half full glass theory is that my immune system has been activated.  Now it needs direction.

My father died of metastic melanoma January 1989.  I turned 71 this past March.  I joined the clinical trial [E 1609] for my dad, my daughters, and my grandchildren.]

.

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eddiealmost's picture
Replies 8
Last reply 9/22/2013 - 5:34am
Replies by: eddiealmost, Janner

I have dysplastic nevi syndrome with 100's if moles, at least 15 moderate dysplastic, and 2 recent severe dysplastic.

My derm used a scalpel to dee a very deep cutting of the severe dysplastic mole, not a complete excision. She went very deep!!! There was no brown skin left (I am white) and the removed lesion had a lot of normal looking skin attached to it.

The margins came back as not clear and the derm did a wide complete excision down to the muscle.

The severe dysplastic mole was growing down into the skin, not staying on the surface.

Can moles grow vertically and still be benign??? Does this also mean that th atypical cells can grow in I pigmented cells??

I am glad that it was not a melanoma, but am concerned that hey might have made a mistake considering how deep it grew.

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JoshF's picture
Replies 19
Last reply 9/26/2013 - 12:29pm

Hello fellow warriors!!! I'm in a really bad place and need to hear positive stories from some of you. If you've read my bio and/or recent posts you know that I just had 2 lesions remvoed from under scar from previous surgery for melanoma. I was told just weeks ago for 6 month check up that all was great and they didn't want to scan anymore and I was single digit chance of recurrence. Now I'm facing more surgery which is fine but I'm consumed with anxiety and fear that it has spread beyond local area (cheek). Since it's on my face/head I keep wondering if it got to brain and I don't know it. Bloodwork for LDH was great 2 weeks ago but I've heard that's useless...and I was seeing melanoma specialists? I'm baffled by the lackadasical approach to my surveillance. I saw Dr Kaufman at Rush until fall of last year when he dropped my insurance. I had scans in June/July 2012 as well as Brain MRI which was good. Then I had scans of neck down to pelvis in Feb of this year...all good! Would've had scans a few weeks ago but as I mentioned previously, onc didn't think they were necessary. WTF!!!!!

Please, some of you tell your stories of good news and hope. I've been on this site for over 2 years and sit in background, follow many of you and pray for all. I typically stay very private but it's harder the 2nd time around for me and I can't understand why. I'm not pessimistic and will fight this beast with all I got but right now I'm broken and not afraid to admit it. I know many of you have been through alot and I appreciate your courage & strength...Charlie S, Jerry from Fauq, Matt F, Gene S, Lauri England, Andrea Heitker and so many more....

I wish you all the best in your battle! For those that are NED....STAY THAT WAY!!!! Don't forget you're the best advocate you have in your fight.

 

Josh

Let's work for better treatments....for a cure!!!!

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