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 13
Last reply 9/4/2012 - 2:46pm
Replies by: Anonymous, Harry in Fair Oaks, Phil S, natasha

Hi ! I am stage 1 Breslow 0.2 and exept WLE I was not offered to do Scans ,Xrays or even blood work.

I read a lot here on this forum and can see people with stage 1 have all this done.

Does it mean my Doctors don't do everything ehat should be done ???

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H555's picture
Replies 7
Last reply 6/1/2012 - 10:59pm

I had my first scans today after starting Zelboraf 8 weeks ago. had to go to 1/2 dose in the first 10 days because of skin reactions and 3 weeks ago began adding back one pill a week. today I'm hat 4 pills in the am, 3 at night. I've only had 3 days of joint pain. I'm losing some hair, head hair is changing texture, i have a ton of skin tags and most of my moles are changing. when we started this I had a collapsed upper left lobe, panted to breathe and coudln't finish a sentence. i was pretty sick and pretty worried.  I had one 3.5cm met, most of the many others were pretty small but too many to count. Today almost all the right lung is clear, the left lung has very few observable mets and the 3.5 cm one that was blocking the airway is about half that size and the airway is unobstructed and the lobe has reinflated. and I feel great. other than increasing sun sensitivity i've begun doing "retirement" things. My radiation onc dr called 4 hours after the CT scans were done. I have great skilled compassionate docs, a great supports system, people all over the world praying for me. I'm a very fortunate many. I hope all of us get to this point and better. I'm eager to see what comes out after the ASCO conference next week. and I'm thankful to have found this board.

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Newmom's picture
Replies 8
Last reply 6/4/2012 - 7:24pm

I have been trying to find out the results of my daughter's biopsy for the past two days and they kept telling me it is not available yet.  I just obtained a copy of the report and it says it was completed and faxed to the drs office yesterday morning.  Why do they do that?  Whenever I called they would tell me they would contact me as soon as it is available but they never did.  This is so frustrating ...

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Anonymous's picture
Replies 2
Last reply 6/2/2012 - 7:47am
Replies by: Anonymous, AlisonC

what does 'partial focal regression' mean melanoma pathology report?  is it an independent prognostic indicator?  why would one report say this, and another opinion says "tumor regression: absent" ?

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Snickers60's picture
Replies 12
Last reply 5/30/2012 - 11:42pm

We are traveling to MDA every month.   We have to fly Southwest, and have to do hotels, food, exp. etc. -  and a cab ride with tip is almost $85.00.   Sometimes, we stay up to 3 nights.  I don't know how long we'll have to do this.   How often do you see your Doc ?  

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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Anonymous's picture
Anonymous
Replies 4
Last reply 5/29/2012 - 5:41pm
Replies by: Anonymous, natasha

Is it agreed upon that WLE surgical margin for Breslow less than 1mm should be 1cm?  I've read some evidence that suggests 2cm margins may have lower rate of local recurrence? 

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Anonymous's picture
Replies 24
Last reply 6/26/2012 - 10:56pm
Replies by: Cindy33, PlantLady, natasha, Anonymous, Harry in Fair Oaks

I am beside myself.  My second opinion on slides has resulted in a worse diagnosis of malignant melenoma.  This was an old mole that was biospied and atypcal but only a little and grew back.  What does this mean?  Does this mean I have to change the way I live my life?  Does everyone have at least one melenoma but not know it? How common is this?  It was a noninvasive melanoma confined to my first layer of skin.  I am leaving on holiday for the beach next week.  Was dreaming of sun and sand.  I am now noticing odd pains in my head and joints and scared it has spread.

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willtolive's picture
Replies 10
Last reply 9/16/2014 - 9:16pm

Hi everyone.

Just got the news today: The PET/CT scans revealed that my wife is still NED - 1 year since we were told that Ipilimumab had worked so well. For those of you who cannot remember my wife, please click on my profile/my earlier posts to read more about our story. The battle has been going on for 5½ years now, but for the first time, we do dare dream of a future and freedom, without this ugly disease playing such a huge part.

I hope so many of you will still keep faith. Stay positive, because believing is half the way to freedom.

 

Kind regards

willtolive

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bruski1959's picture
Replies 11
Last reply 5/31/2012 - 4:16pm

A month after finishing her 4th Yervoy treatment, Jackie went home to be with Jesus on Sunday, May 27, 2012. She had suffered with various health issues all her life, and most recently has been battling melanoma for the last year or so. More or less her body gave up due to the ravages of Tuberous Sclerosis Complex, LAM, islet cell cancer, and melanoma. She was 57. We renewed our wedding vows on Saturday, May 26, 2012, just 17 days short of our 20th wedding anniversary. I have lost my wife, my best friend, and the person for whom I was her caregiver and advocate. She is no longer suffering, no more pain, no more tears, and no more diseases. She was ready to go when she received the stage 4 diagnosis, yet waged yet another valiant battle with another insiduous disease.  Jackie is my hero and has inspired many people with her courage to battle seeminly insurmountable odds. Jesus called her home, and now she is walking on streets of gold in heaven, singing with the heavenly choir.

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NYKaren's picture
Replies 5
Last reply 5/31/2012 - 8:02pm

 

Hi everyone. Another reinduction ends after 3 infusions.  After 6 weeks since my 3rd (and final) Yervoy infusion, I am done.   I’ve been to Sloan’s Urgent Care 3 times, the last one being this past Friday night, presenting with diarrhea (every day for 6 weeks) and fever.  Even being on 70 mg. of prednisone didn’t take relieve the diarrhea completely.

I finally weaned off the Prednisone this past Monday, and we attributed my extreme weakness to the wean when I showed up for my 4th ipi infusion on Thursday, and Dr. Wolchok told me that I was effectively done with ipi.  (Oh yes, I lost 20 lbs. too.)  I felt so physically awful that I should have turned right around and checked into the hospital.  I had no fever then, and we didn't know my white count was high.  I think some small part of me was still stinging from not being able to complete the ipi, fool that I was.    So on Friday when I awoke w/102, they were already calling with the high-white-cell count and telling me to get back to the hospital.  They took yet another C/T scan, this time it showed significant colitis.  The first visit was about 4 weeks ago with same presentation, but the C/T didn’t show colitis, so the doc was treating it like mild colitis…with an infusion of steroids, continuing on the steroids at home.  The second visit was 2 weeks ago, CT was “closed” in the middle of the night—who know CT’s closed in major metropolitan hospitals??—they took an x-ray, said it looked fine, and sent me home.  The first two times I took Tylenol in the morning when I awoke w/fever, but it didn’t return in the Urgent Care.  THIS time, it returned that evening, but I know the Remicade had been on order anyway.  They also have me a bag- full of Cipro.  And that private room I was so happy about in Urgent Care, it was the Isolation Room because I was presenting with fever and a high white count.  I thought that was actually pretty funny.  And oh yes, I started feeling better on Saturday from the Remicade.  Don’t know if I’ll need another infusion or not.

Although there is a big improvement on my face, some of the  mets on are partially returning even after Dr. Haplern freezes them and I apply Aldera, and the “control” mel that he’s not freezing (for PD1 eligibility purposes) remains the same size, so the big question is, WHAT’S NEXT??  I guess my next PET, whenever that might be, will tell more.

Hope everyone had a better weekend than I did!

karen

Don't Stop Believing

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rjcravens's picture
Replies 6
Last reply 5/31/2012 - 11:15am
Replies by: Snickers60, washoegal, Anonymous, lhaley, yoopergirl

I had my Pet Scan and MRI done for my one year follow up after finishing the Interferon. This is the first scan I have had since my inital diagnosis. My anxiety is thru the roof. I feel like I could throw up at any min. I keep having bad dreams and thinking the worst. I have an appt tomorrow at 3pm. to be "restaged". How do you get through the waiting period. What if its there and they dont see it? What if its everywhere? I can't breathe.

 Also, when doing my skin check the other day, I noticed a purple blue area raised around my rectum. I haven't had any change in bowel pattern and no problems with bowel movements. Should i be concerned or is this just something that comes along with age. I am a nurse and I have seen many hemmrroids, but never any so purplish as this.

Say a prayer....

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Gene_S's picture
Replies 1
Last reply 5/28/2012 - 10:18pm
Replies by: kristine
 
However there is no mention of ippi in this article?
 
Best wishes,
Gene

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

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mtay26's picture
Replies 2
Last reply 5/30/2012 - 6:15am

Hi. I was just recently diagnosed with Malignant Melanoma the Superficial Spreading Type.
I am 32 and female with 3 boys. My oldest son was placed my me in a Christian Boy's Home on January 25th of this year. Since then I have been depressed, with no appetite, weight loss, sore shoulder joints, stiff neck and shoulders and constant fatigue. I have had a swollen place on my lower right arm that comes and goes for the last month. It is tender and warm to the touch. I didn't think too much of it and didn't mention it when I saw the dermatologist to have a mole removed. While waiting for the pathology report, my lymph node under left jaw began to swell and was very sore. Actually the entire left side of my neck was sore. I truelly believed that everything was because I was so stressed about the situation with my son. Could any of this be related to the cancer? Should I try to be seen sooner than my scheduled appointment on June 6th for SNB and WLE consultation with the surgical oncologist? Or wait it out? I just don't know what to do or what to think anymore? I had a dream last night that it had spread to my liver. Really? And also I don't understand what mitotic rate and host inflammatory rates mean.
Below is my entire pathology report from a shave biopsy. The original area before shave biopsy was 0.5cm x 0.9 cm.

1.Skin Shave Biopsy, Right Paraspinal Back: Malignant Melanoma, Breslow Thickness 0.83mm, Clark Level III

Comment: 1. There is an asymmetric compound melanocytic proliferation. On one side of the lesion there are architectural features of a dysplastic nevus. On the other side, melanocytes are markedly atypical, with enlarged irregular and confluent nests and some pagetoid spread. Similar confluent nests in the dermis extend to a depth of 0.83 mm.

Type: superficial spreading in vertical growth phase
Clark Level: III
Breslow Depth: 0.83 mm
Host Inflammatory Response: moderate, focally infiltrative
Miosis: 1per sq mm
Regression: not identified
Ulceration: not identified
Satellitosis: not identified
Vascular/lymphatic Invasion: not identified
Predominent Cell Type: spindled and epithelioid
Precursor Lesion: dysplastic nevus
Margin: The lesion extends close to a lateral edge.
Stage: pT1b NX

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Bruce Davis's picture
Replies 5
Last reply 5/30/2012 - 9:12pm

Just wanted to thank all the people who went through clinical trials for zelboraf. I 've been on zel. For 8 months now. As I was driving to work the other day I started to feel sorry for myself passing by runners that were doing the same thing I'm not able to do any more due to pain in the feet (side effect from zel. and messed up feet). Then I passed by a guy in a wheelchair waiting for a bus. Seeing him, zapped me out of my "funk". I was reminded of the blessings I still have, and overall dong pretty good.

Presently it's "Don't give up."

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yoopergirl's picture
Replies 7
Last reply 5/28/2012 - 12:00pm

I am due to see my oncoligist on June 4th after my cat scan to see if I am having a response to the Yervoy or not, then will discuss treatment. I went the other day to have my hair done and eye brows and my beautician said some of the hair on my brows are white, I said are you sure they are not grey and she said they are white!! I can't see that since I wear glasses and the brows are kinda hidden, I thought I saw on this board that it would be a good sign  that  the ipi was working although my tumors are still big so I guess I won't really know until we discuss my scan. Has anyone had this happen to them? Thanks.

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