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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pbnjelley's picture
Replies 10
Last reply 5/31/2012 - 11:43pm

I was going to post this two days ago when I got the news and I didn't because I was just too busy celebrating!  I have been on Zelboraf for 3 months because of several mets on my lungs and got all the crappy side effects like it seems everyone else has suffered.  I prepared myself for the idea that my life would be forever diminished because I moved around like a 90 year old instead of the 27 I just turned.  I was frustrated for 3 months wondering if it was even worth it to go through this when I had to reduce the medication to half the dosage and I figured it wouldn't even work.  And then came the day for my scan on Tuesday to see if there was any progress being made.  Miracle of Miracles - not ONE spot can be seen.  That's right folks, in only 3 months the Zelboraf has taken care of all visual spots!  My oncologist and I decided that I would continue taking Z for 3 more months and just try to make sure that no bad cells could remain and we even upped the dosage to see if I can handle it and really kick this thing in the butt.  I'm not gonna lie, I still am sore and moving slow today, but there is nothing hurting about this smile!  In three months I will get my scans and confirm NED and then a month later, I will marry the man of my dreams and start the beginning of a long life with him.  I never thought that I would see a "clear scan".  I was told that possibility only occurred in about 2% and I hung my heart on that number.  I have thanked God every spare minute I have had and pray that this nightmare never returns.  I pray for everyone who is going through this trial in life and I hope for positive outcomes and happy smiles.  So many people on here have influenced me with their positive attitudes and I thank you for your everlasting comfort.  Everyone on here is a hero and I wish you all the best!!!

Today is my day!

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TSchulz's picture
Replies 14
Last reply 5/31/2012 - 11:15pm

Hello all,

I am currently at NIH preparing to receive my billions of TIL cells in just a few hours. While I have a tremendous network of support close to me, I could use all the positive waves to help my cells do their job! I figured who better than fellow warriors to help tip the scales?

So if you have a little extra energy on the plus side today, please send a shout out this direction.

I have such admiration for everything the people on this site go through, have gone through and contribute. May all of our "data" add up to cure soon.

Best, Troy

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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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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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eerye70's picture
Replies 8
Last reply 5/31/2012 - 1:46pm

Panic, insanity, anger, fear,  I have been through so many emotions these few months I don’t know what to say.

In the fall of last year, I had a small mole on my right shoulder. I had it since I can remember. It got darker. I got worried and scheduled an appointment with a dermatologist. I have moles all over. My mom has moles. I am just speckled. I also have to say, as a teen, I totally did the sitting out with baby oil and iodine for the perfect tan. I didn’t do tanning beds until the last two years. I have several scars on my stomach and I wanted them to fade into one shade. So I did insane tanning, daily, 20 minutes for about 3 months total out of the two years. Back to fall. I went to the derm. He took one look at it  and said, oh yeah, that has to go. They cut it off and sent it to path. He said, its most likely nothing, but we send it to pathology and I will see you back in two weeks. Then I left. I went home and began to hit the internet. I found this site and began doing research. My mole was larger than an eraser, irregular borders, irregular coloring, and evolving or changing. I couldn’t believe that I had just ignored this thing for years. Literally for years. I had noticed it, thought about it and just went on my merry way. For years.

Well, the dr calls and says, come in to see me. Of course, you know. You don’t get a call for nothing out of the ordinary. I guess the good news is that it is in situ. That for all my putting off, it is supposedly been caught at the surface, most superficial level. But they don’t know, and can’t know, if it didn’t send off some little buggers in the body to take root some place else. The likelihood is that it hasn’t and that when they went back and removed it with the clear margins etc etc, is that it is gone forever. But then, well, being me. I did all this research. I see the people who started out as in situ and it returned. I am furious that there is no way to keep track of this thing at this stage. I hate that there is no monitoring for this other than seeing my derm regularly. The likelihood of it returning in another mole being so small, it seems insane. I don’t know. Am I crazy? No blood test, no xray, no nothing. How do I know I am not going to be in the percentage that it returns? There seems to be nothing I can do to reduce the chances. I hate that I have no control. I hate that I have this evil little monster lurking in the back ground. Did we cut all of him out, or is he still hiding, waiting for when my immune system is down on its luck and pounces on me?

Why exactly, if this friggin cancer so darn deadly, is there so little research money being spent? Why on earth is this some big collosal secret? Why isn’t someone going into our high schools, before proms telling these kids, tanning beds can kill you? I don’t know. I am ranting. I am raving. I am upset. I don’t sleep. I can’t eat, I obsess over this day and night. I have read every single post on this board and I have come to “know” so many warriors. I cry over the sweet, smart, funny people that are gone and I think, these beautiful people are gone. And while we are all the luckier for having been in their orbit, but I should have never known of these people, they should be happily going about their lives. I don’t want to imply with my part about tanning beds either, that these people brought on their cancer either, because I know that sun and uv is only a part of the ugly truth. There are so many more issues and I am angry that we don’t even know those either!

So thank you for reading my introduction to me. I guess I have a lot of “issues” to work through. I plan on being more verbal now and less lurking. I need to get this out of me, to process these emotions, to offer support and give encouragement and just try to return to a new normal. One day at a time…

Time to put on your big girl panties and deal with it!

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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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kjshaner444's picture
Replies 8
Last reply 5/31/2012 - 11:04am

Hello-

Question #1: I am really close to the end of my 12-months of Tx (Interferon, i.e. Intron-A, subcutaneous injections, 3 times/week). So, what nexxt? 

Question #2: Any feedback on photography as an adjunct to visual inspection for surveillance for malignant melanoma would be helpful (I appologize if the subject has been discussed in prior posts here).

Thank you all, so much.

P.S. Thank you Carol Taylor. Your kind response/prayer to my prior post has helped me so much these past 12 months. 

Karen

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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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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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ElaineLinn's picture
Replies 11
Last reply 5/30/2012 - 11:14am

I have not been on line for quit a while because of spending more time in the hospital. As you know I have been batting Melanoma for quit a while now. It has progress to the brain and dr. are afraid that it has move to the spinal fluid. If it is in the spin there is no cure and the only way to tell is if I let them do a spinal tap. I refused the spinal tap because the dr. are 99.9 percent sure that it has so that pretty well tells me that it is and I dont want poked and probed any more. I want to enjoy what time I have left with my family and friends , so while I am still able that is what I am goin to do. But I will not give up the battle I am just resting for a while. The dr. told me this week that if it is the cancer in my spin I will know soon and will have around 3 to 12 months . So I am dong chemo and radiation this week to try and kill the 3 new tumors that I have and will have new scans  in a f ew months. But I feel better now then I have in a long time. I am still able to do things and able to get around.  I love and enjoy life but from here on out I am going to enjoy it along with my faimly. I want to say I wish you all the best in your fight and please dont ever give up the fight , maybe on day soon they will find a cure and then ther will be no more pain and suffering from this diese. God bless you and and remember he love us all

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Johntobin83's picture
Replies 10
Last reply 5/30/2012 - 8:18am
Replies by: Clemmy, scots, Rona, Anonymous, Johntobin83, triciad, audgator

Hi

im looking to know what intron A interferon treatment is like.

i am due to start my treatment on monday and i want to know what the main side effects are. i had all my melanoma removed and sentinel lymph node biopsy came back negative but oncologist recommended that i start this treatment. please give me information

thanks john tobin

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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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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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Replies by: brookecz79, Tina D

Hi everyone,

 

       I feel so foolish posting on here when I know there are people in much much worse situations. I have been racking my brain for eight days- since my derm first told me that my mole has all four characteristic of suspicion and needs to come off "as soon as possible". Tomorrow is the day I've been waiting for- to get this scary thing taken off. Today the office called to move the appointment- I was afraid to next week- but instead they wanted to move it up an hour. My mom asked me to find out when I could have the results,so I asked while I was on the phone with them. I figured I would have to wait until maybe next tues or wed- possibly a week tops.

   Much to my surprise, they said usually about two weeks, maybe one if I'm lucky. I have never needed valium or xanax so much as the past eight days, but of course I don't have any. I've just been trying to get through until tomorrow, but now it feels like I'm just barely getting into finding out anything.

  I know it's dramatic, and I know I'm so lucky compared to people who have already gotten terrible news, but I'm so very terrified. I can't stop crying, can't eat, sleep, or focus on school. I don't want to be negative, but it's where my mind keeps ending up.

 

Is this normal for biopsies to take two weeks?

It feels like I'm a step behind if there is anything wrong. It takes time to get an appointment if there is something else wrong, and it takes two weeks just to find out if you need that next appointment.

On another note, I haven't told anyone except for my husband and my mother (who then told my dad and my sister). No one else knows what's going on. My husband has left almost every night after work to go hunting, while my mother has uncharacteristicaly scarcely called me this week. This has been the scariest, loneliest, and longest eight days of my life and I'm not sure how or when this journey will end.  I feel so pathetic for not being more positive and so utterly alone.

 

One last question: Does anyone know of any doctors in the oklahoma city area or even in Oklahoma that can "fast track" these kinds of things?

I'm so sorry for the rant and keep everyone in my thoughts and prayers.

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awg's picture
Replies 5
Last reply 5/29/2012 - 2:10pm

I am glad to report that I am scheduled to complete my last sub-q interferon injection around July 18th. Overall I tolerated the treatment well and had only minor symptoms assoicated with interferon over the last year.

I was able to work full-time during the treatment.

My last PETCT was in December 2011 and it was all clear. I am schedule to have additional PETCT in September 2012.

I am thankful for this form and the depth of information and encouragement that is available here.

 

Regards,

 

Allen

Stage III

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