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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BrianP's picture
Replies 8
Last reply 9/24/2016 - 11:29pm
Replies by: Anonymous, wasserd, Polymath, BrianP, WithinMySkin, Maria C

Tumeric comes up from time to time on here.  Thought this was a pretty interesting article.  Study results toward end of article.  Bottom line is supplements didn't show much benefit but adding tumeric spice to foods seems to have a positive impact.

http://mashable.com/2016/09/20/turmeric-experiment-superspice/#8OvNB89clmqW

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Anonymous's picture
Anonymous
Replies 1
Last reply 9/24/2016 - 11:16pm
Replies by: debwray

I had a mole removed from my neck a little over a week ago. It was itchy and inflamed and had grown recently. The doctor put in the orders that they were trying to see if it was melanoma. I think she used the initials AMM. I got my printed results today and I'm kinda confused. The nurse called and said my mole was basically growing scar tissue; however, I'm unsure why an uninjured mole would do this. These are the pathology results that were written down: Desmoplastic compound nevus. p16,

MART-1, and Ki-67
immunostains examined.

GROSS:
Specimen labeled right neck is a 0.6 cm in diameter x 0.4 cm in depth
punch of tan skin with a 0.4 cm central brown papule. Entirely
submitted in 1A - three fragments.

Is this something to be concerned about or get a second opinion on? 

Thanks for the help. 

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CindyCo's picture
Replies 11
Last reply 9/24/2016 - 10:34pm

My mother was diagnosed on September 6 with Anal Melanoma.  After CT/MR/PET scans, we have learned that the mass is 4 cm and that it has spread to her inguinal lymph nodes, but nowhere else.  The doctor told me that she has 10-15 months due to micro metasteses, which broke our hearts.  However, I see that there are a lot of long term survivors on this message board. 

Does anyone know of a survivor with a mass as large as 4cm? Even the cutoff on the drop down menu is 4mm, not cm. 

My mother is also afraid of an APR, especially since the doctor told us that he wouldn't recommend it since it won't extend her life. 

We are part of Kaiser Permanente, which does not seem to be very specialized in this area, but since it's a closed network I'm having a difficult time trying to get them to agree to giving her a second opinion at one of the bigger institutes I see all over these boards(EX: Dana Farber, MD Anderson, Sloan Kettering).

We have also put her on a vegetable-heavy vegan diet for the time being.  We figure this can't hurt.

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Replies by: Buddy0513, Hukill, Maria C, Bubbles, Anonymous, debwray

Hi everyone,

I posted a few days ago about my mom having a horrible experience with the one hospital and how we were waiting for a second opinon. Today we went for that second opinion so I thought I would follow up with you all.

The melanoma specialist immediately stated he did not see the Keytruda being the best fit for her, especially since it is mucosal melanoma and melanoma is aggressive. (He was also shocked at our treatment in the other hospital). He gave us the options of Nivolaumab and Ipiimumab or Nivolaumab, Ipilmumab and Saragramostim (which is a trial). He did not state anything other than he wanted to start treatment right away since it has been almost 2 months since this diagnosis and she has not received care and is in a lot of pain due to the location of the large tumor.

Has anyone else had any experience with the combination of Nivolaumab and Ipilimumab? I am trying to do some research for her just to get an idea what to expect. As for the trial, I can't seem to find much on this Saragramostim either...(other than the very scary side effects that my mom doesn't feel 100% comfortable with!)

Overall, we had a better experience at this hospital, we were immediately given a social worker, friendly staff and the center was packed with patients (which I took as a good sign because the other hospital was relatively empty!)

 

Thanks again for all who read this...We are only beginning the journey and are absolutely terrified at this point, more than ever before, since we kept getting such negativity that the drugs wouldn't work etc..I'll keep everyone updated as I can!

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Anonymous's picture
Replies 3
Last reply 9/24/2016 - 7:32pm
Replies by: Anonymous, MoiraM

Hi,  I have been scanning these boards and have been inspired and immpressed by the knowledge that exists here.   I know I probably have a very unique situation that probably no one can offer much help with but I wanted to ask in case.  Here is my background.  I had a legion on my arm removed in 2008 that came back "atypical spitz nevus" with heavy lichenoid inflammation.  I had it further exised and have never gave it much thought since.  In 2015, I had a suspicous mole on my toe removed that they pathologist kept sending off for 2 and 3rd reviews.  However, when the final consensus came back it was determined it was fine.  That place on my toe grew back (was a shave biopsy) and the dermatologist did not seem concerend.  However at my last 6 month checkup, he looked at it and said he would have it excised completely since it continued to grow back and given the fact that I was pregnant.  So, I went to the surgeon to have this done.  However the surgeon recommended against the removal due to risk to the baby.  So, I decided to wait till after delivery.  Over a year ago, I had read of the Oncoblot Test (an early detection cancer blood test) and decided to take it.  Well, to my suprise the results came back last week Positive for melanoma.  The blood test is suppose to be able to detect a tumour that is 2mm or larger.  Which is why they call it early detection, however from what I am reading on melanoma 2mm does not seem that early.  So, now I have this information that I have melanoma but am not even sure where.  Plus the fact that I am 8 months pregnant.  I thought about trying to get into MD Anderson as I feel my case is unique.  I am not sure what to do.  I did call the surgeon about my toe and they indicate I can not be seen untill November 21! 

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WithinMySkin's picture
Replies 24
Last reply 9/24/2016 - 4:34pm

Hello all my fellow fighters! I feel as though we've had some seriously tough times lately. Reading through the board can be so difficult some days because my heart hurts when there is bad news. I know the flood of emotions that you all go through, and I'm right there with you. The stress, the anxiety...I've been there, and I will be back there soon with my next scan in October (fingers crossed for good news!) But I wish I could reach out and hug every single one of you who are going through a tough time right now!

 
So I started thinking. How can I help? How can I make this situation better? I know a lot about my own anxieties, but how can I help other people feel less anxious about what we're all going though?
 
Then it dawned on me. I have worked for almost a decade in the operating room as a neurophysiologist and an anesthetist. That's what I really know best, and for most people surgery is terrifying, even though it's really quite normal for me. So let's start there.
 
What scares you the most about surgery? What do you wish you knew about general anesthesia or the O.R. that would help calm your nerves? What questions can I answer for you all? How can I help?
 
*Please refrain from asking questions specific to your condition. I don't know everything and I'm not your doc, but I'm always here to give you an internet hug! And if you don't want to post here, you can always reach me at my blog.
 
Hope all is going well in your battle and keep fighting!
Lauren
 

WithinMySkin

www.Withinmyskin.com

 

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Hi gang. I've been on Social Security Disability for about 5 years due to melanoma. A stage III diagnosis is an automatic yes, and I was Stage IV when I applied. Anyway... I have THANKFULLY been NED for 4 and a half years, and have simply been living my life without the stress of having to hold down a job. Hubby makes a good income, and my disability helps us pay the bills.

Well, SS sent me a re-evaluation form to decide if I still need to be on disability. So I'm a bit afraid that they will determine that I'm no longer disabled, even though I'm still considered a stage-IV patient. (I also have lymphedema, which lately has been more of a hindrance than the melanoma has).

If you or someone you know was on SSD for melanoma, and lost it... would you let me know? OR if you've been re-evaluated, and they let you stay on it... please also respond. It would help with my nail-biting!

Love to you all!

Jackie Doss, Stage IV NED... Dallas, TX

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Anonymous's picture
Anonymous
Replies 4
Last reply 9/24/2016 - 2:45pm
Replies by: Anonymous, Patina

Hello:

I recently had a melanoma scare.  Everything is fine now.  I want to get continuous screening from a dermatologist that is a melanoma expert.  All dermatologists I found are mainly cosmetic.  Any recommendations of melanoma dermatologists in LA or the OC area?  Or Southern California?

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beans920's picture
Replies 2
Last reply 9/24/2016 - 2:22pm
Replies by: Polymath, Fen

Hello to everyone,  I have been a poster in the past  but have not had much to say as I awaited my quarterly scans.

Finally had my Pet scan, MRI and blood work on Wed.  I have had 2 wks. of radiation  and was started on Pembro now receiving my 6th dose.  Blood work was all in normal range. Full  Pet scan only showed the tumor on my sternum which has shrunk by 60%.  I figured it was down as I couldn't feel it anymore.  I did have a speck  show on the MRI on my left front brain area.  Dr. not sure if its new as I have not had MRI before always full body Pet scan.  Pet scan showed nothing active in brain area.  Will repeat MRI in six weeks during my 8th dose of Pembro.  No side effects yet, feeling good.  Prayers and Best wishes to everyone out there.   Beans

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Momofjake's picture
Replies 8
Last reply 9/24/2016 - 12:51pm

Hi all,

Took me awhile. Jake was disappointed in his scan results, but he got a "stable disease". It's not too bad. Hard part is the dr says the TAF has hit it's plateau and he wants Jake to start ipi now. Jake says he wants to try MEK. I don't even think it's an option. Our onc thinks the TAF alone only lasts an average of 6 mo and Jake is 4 months in. He says there are not other options, just ipi. Jake doesn't want ipi. Hates vitiligo. Onc also says the cancer can come back aggressively when it does. Jake is still very tired but looks good. Clear lungs, almost clear spine and so much improvement really shows! He played tennis today:) He also apologized to me on the way to his scans...it was emotional for him. Sept 12 marks two years. 17-19 yrs old sick. Hoping the TAF hold it back:) 

thats our news....how are you Josh????

Thanks for the scan support:)'Kerri

 

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tkilburn's picture
Replies 6
Last reply 9/24/2016 - 12:31pm
Replies by: Anonymous, tkilburn, debwray, Julie in SoCal

Can anyone help me understand what all the stuff on the pathology report means? 

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Hello all,

There is a new peer support group for melanoma patients, fighters and caregivers starting up in Alexandria Virginia.  This is part of a program supported by the Melanoma Research Foundation to seed new support groups around the US.

Meetings will be the second Thursday of each month beginning October 13, at Commonwealth Baptist Church, 700 Commonwealth Avenue, Alexandria VA 22301, at 7:00 pm.    

Questions, comments, or suggestions?  Reply to this thread or email ALXMelanoma@gmail.com.

Thanks!

Wayne

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Julie in SoCal's picture
Replies 13
Last reply 9/24/2016 - 9:28am

Greetings Friends,

Yesterday I saw the Rock Star and did the "paper work" and body work (blood, ekg, and pee in a cup) to join INCB 39110-17.  I'll have to have scans again but provided lung tumor is still there (short of a miracle, there's no reason it wouldn't be) I'll start Day 1 Cycle 1 next Wed- Phew!  Maybe this roller coaster ride is coming to a full and complete stop or at least maybe slow down a little.

I don't know if I'm on the JAC1 or PI3-k arm, but either way I'll get it a drug with Pembo and I've responded Pembro well in the past. So I'm hopeful.

Meanwhile I'm tired.  All the hurry up and wait has been stressful.  Not knowing what the plan is has taken a toll. I'm very glad to have a plan.

Thanks again for being fellow companions on this wild ride.

Shalom,

Julie

 

 

Stage 4  (TXN2cM1b)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits and lung met) 2016 ???

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Anonymous's picture
Anonymous
Replies 4
Last reply 9/24/2016 - 2:30am

Can anyone share with me your experiences with melanoma stage 0??
Prognosis, chances of it coming back, chances of it spreading, follow up, etc?

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jpg's picture
Replies 4
Last reply 9/23/2016 - 9:25pm
Replies by: Rita and Charles, Anonymous, Polymath

My doctor just told me that there is no evidence to show it is of value.  Anyone have any good studies saying otherwise?

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