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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Anonymous's picture
Replies 2
Last reply 1/7/2011 - 10:21am
Replies by: Janner, Cynthia C

Can Anyone Explain This To Me Please.

 

1. Histolic Sections Show A Deep Scallop Biopsy.  There Is An Isolated Neoplasm Composed Of Atypical Melanocytes In Sheets, Nests, Trabeculae And Single Cells Within The Dermis. There Is Also An Intraepidermal Component Of Irregular Nests And Single Cells With Pagetoid Spread. The Cark's Level is V, The Breslow Thickness Is Greater Than 4.0 MM (Four Point Zero Millimeters). The Tumor Is Transected At The Base. Regression Is Absent. There Are 60 (Sixty) Mitosis Per Square Millimeter.

 

 

I Am Uncertain What This Means And Am Concerned With The Mitosis Rate. Please Explain Mitosis And If This Rate (60) Is Common Or Bad.

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Rocklove's picture
Replies 16
Last reply 1/24/2011 - 10:29pm

Hi All,

I have been struggling with some pain.. not severe but have been taking 600 mg of Ibuprofen 3 times per day  for the last few months and it has kept the pain at bay. I have refused to take anything from the opium family so far as I am still working a full time job and drive. The Nurse had warned me not to drive if I took stronger prescription drugs.

Is there any medication that is milder on the bodies organs that are effective?

I am also struggling with a high creatinine level that started in Sept @ 3.3 after 6 rounds of bio-chemo but has trended down to 1.7 last week.

I am know in my 2nd dose of ipi.

Any suggestions would be appreciated.

Rocky (Stage IV Liver Mets)

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Tracey FL's picture
Replies 7
Last reply 1/9/2011 - 10:02pm

I really want to thank everyone for their letters.  I read them to my mom and she felt better and encouraged.  This has been such a helpfull tool.  We felt that we had been beat, but not now!!!!  The body scans were so bad that they took mom off chemo.  We are looking at the ipi trials now.  This will be her third trial and we will keep going.  I will more than likely be going in for a back surgery myself ( fell and broke both my rods).  I am scared but you guys are my heros and so is my mom.  Keep the faith.

Tracey

mom stage 1V with brain mets, lung, body.

P.S  Mom looks great in her wig, younger.  She sleeps in the terry turban at night very soft and keeps her head warm.

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jag's picture
Replies 14
Last reply 1/9/2011 - 6:13pm

Have been having a lot of neck pain lately, and it has radiated up into my head.  Despite my wife telling me I spend too much time on the internet, I feared the worse, and worry about melanoma.  Got my MRI today and my brain is disease free, actually much improved from September.  If you go through my profile you will see that despite my last 2 brain surgeries, I have been disease free since March of 2008, which would mean that I am disease free for 2 years and 10 months (almost 3, but I don't like to assume anything with melanoma) needless to say, I have to cut down on computer time.

Insert Generic Inspirational Motto Here

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So... hello to everyone!  I haven't posted in quite awhile, haven't even been around since they changed the format.  Hope everyone is doing as well as can be expected.  Heres the thing...just went to get my eyes examined.  Did the dilation thing and my eye doc found a very small choroidal nevus in my left eye.  To any who don't know me, I had desmoplastic mm on my left cheek about 5 years ago...2.8 breslow, clark IV, stage II - nodes all clear.  We took a pic of nevus for baseline and will follow up in a year.  I am concerned that it is very near the optic nerve (they showed me the pic - very cool!)  Trying not to freak out too much, I know it was small and not all choroidal nevus become melanoma.  Has anyone had this?   And, if so, how long were you followed?  Tell me some good news!

Cheers,

Chris

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naty's picture
Replies 10
Last reply 1/7/2011 - 2:36am

Well thanks to this Board Dad and I went to MDA in November.  What a great experience there!!!!     He was diagnosed February of 2005 stage III (?c).   Diagnosed stage IV October 6th to brain, ling, liver, and spleen.  The month of november he drove himself (against my better judgement) to WBR daily for 13 days.  Temedor was started early november.  

But just 2 weeks ago my father declined and I had Hospice start this past Sunday evening.  Tuesday he turned for the worse and lost the battle early Wednesday morning.  He fought to bitterly to the end even wanting to start his next round of Temodor last saturday.

Thank you all for your support.  And to those fighting Melanoma, may you win the battle and melanoma get sucked down the drain!  I am going to make it my mission to educate regarding melanoma and sunscreen use.  I am rambling but I need to do this ramble as no one else seems to understand.  I hate seeing people fry themselves in the sun-let alone their kids.  

anyways to all the fighters here and their family members keep going and fighting!!

Melissa

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Anonymous's picture
Anonymous
Replies 14
Last reply 10/13/2011 - 12:47pm

My adult ( now 28yrs old) son was diagnosed with nodular mel. 6yrs ago this month.  He was stage 3.   After  2 yrs of treatments  (surgeries ,gmcfs, radiation, & interferon) he has remained NED for 5 yrs.   Yesterday he had his annual scans and everything was great!!!!   Then his Dr. oncologist, told them, since he has been "cancer free" for 5 yrs, annual scans are no longer neccesary.   My son did opt to do scans for at least 2 more yrs.  Dr also said, "the return of his type of "cancer"  very rarely returns after 5 yrs".  I was talking to my son's wife last evening, about  what the Dr. findings, and what he told them about the chances of no return, after 5 yrs.  I told her that was not true.  She got upset with me and told me, " he is a Dr. and he knows these things".  I am scared they will get less vigilent.   I was the one who was my son's caregiver when he was diagnosed, & while he did 2 yrs of treatment.   I was the one doing the research while he was fighting his battle, and trying to carry on with his life, and build a career.  Which he did even while going thru treatments!  He has an amazing story!   After my son got married, I handed over his recoreds to them.  I explained as much as I could, and the fact that this cancer is more then likely never gone.  This is a life long battle!   I know my son did know about the seriousness of this cancer.   He had always read his records.   How do I go about  telling them his Dr was so terribly wrong, without upsetting them more?   I can't believe my son excepted this!   I would like at some time to appoarch the subject of him going back to MD Anderson, for his yearly scans.  Yet, don't want to upset them more.    I do not know this Dr.   This is one he got after his original oncologist retired.   I sometimes think they both now live in denial, and this Dr. just reinforced their denial.  

     Another question, the scans showed he has a kidney stone.  How do they know it is a stone and not cancer in his kidney?  My son opted not to see a urologist, since the stone doesn't bother him.   Silly man!!!!   When this stone decides to bother him....... he WILL know he is bothered!!!    

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budspal's picture
Replies 6
Last reply 1/7/2011 - 3:15pm

recently diagnosed stage 4 and looking for feedback re side effects from the ipi ....any info greatly appreciated. 

 

 

 

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Amy Busby's picture
Replies 13
Last reply 1/10/2011 - 6:40pm

I've always had a bunch of subq mets, most in the visceral tissues but some you could feel under the surface.  Now I've had a few come up with bruises on the skin above them.  Wow!  Did the appear so fast they "punched" a bruise on my skin?

Weird.

Sure tumors are progressing based on the pain level progression and the new ones I can feel here and there.  Scans tomorrow and meet with ipi onc in San Antonio on the 14th.

Update to follow!  Sorry I have not been around much.  Fatigue is high.  Too much activity each day to fit into my very limited energy reserve.

But I think of you all and pray regularly.

If there are any viable last line options out there, give me a head's up.  I know my LMD makes everything a fight and I don't know how big the guns I'd be able to bring are.

love,

Amy

 

I continue to praise God in this storm, counting my blessings & enjoying my "bonus time!"

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carol b's picture
Replies 5
Last reply 1/6/2011 - 7:51pm

well my oncologist doesnt believe that interleukin-2 will do me any good. He worked his magic and got me into a clinical trial in Vanderbilt. I have an appointment next Wed. on the 12th..Im not sure if its a meet and greet kinda day or if they will keep me an get me prepared for some kind of treatment. Its the not knowing that is driving me so crazy. I dont even know what kind of trial it is but my onc in Memphis says it is having a 45 % success rate. He said if he was in my shoes thats where he would go. But the pain is getting very intense. I finally got Hydrocodone 10/500 . gabapentin 300 mg and clonazepam 0.5 mg.. It helps a little. I just pray the pain doesnt multiply as fast from now till next week as it did from last week till now.. Vanderbilt is suppose to be calling with details before the end of the week. i hate the waiting. the drugs make me woozie so if this post sounds crazy thats why. i will repost when i find out what kind of trial i will have. thanks to everyone on this board who has posted their story. Some r so encouraging. life feels a little bleak for now but maybe Vanderbilt will be my miracle cure.. hugs to all

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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brettlamb320's picture
Replies 2
Last reply 1/5/2011 - 5:17pm
Replies by: LynnLuc, lhaley

I am stage IIIC diagnosed 6/09.  original site was a mole on my forehead right at my hairline.  SNB was positive, had a radical left side neck discectomy where they found one positive node.  I was accepted into the phase III ippy trial in 10/09.  Everything has progressed nicely until my appointment/treatment yesterday.  I had my usual 3 month scans and a spot has showed up in my left lung.  Retrospectively you could see something starting to grow in my scan 3 months ago.  It looks like I am going back under the knife here shortly.  I am meeting with a cardiothoracic surgeon next week in Charlotte.  I think they can do a VATS procedure and get it.  Not sure yet what the medical side of this one will be... The surgery always seems to be the easier choice than the treatment.  Anyone had any experience with anything related?  How about a great thoracic surgeon?  I am anxious they may tell me i have to do intf this time.  If not, I would suspect they will dose out chemo or radiation.  jeezz.. its amazing what you can get used to. 

Brett

 

 

 

Regret is a waste time.

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dian in spokane's picture
Replies 10
Last reply 1/7/2011 - 9:50am

I'm sad to report that Sandy from Buffalo passed away yesterday at 9 am. She was moved into Hospice last weekend. She was known here on the new board as Sandra Dee, since, for some reason, she was unable to register as Sandy from Buffalo.

She's fought a long hard battle with melanoma, and was well known here at the MPIP for her many contributions for a long time, so I thought it should be posted here. I'll pass along a link to her obituary when I receive it.

Dian in spokane

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PeterO's picture
Replies 1
Last reply 1/5/2011 - 11:28pm
Replies by: Jim in Denver

Watching what's happening with the Avastin controversy in breast cancer makes me wonder what the prospects are that FDA will ultimately decline to approve Yervoy (as I guess ipi is being called now) for advanced melanoma. What's the speculation? The astronomical prices for cancer drugs is bound for a head-on collision with Obamacare.

www.theogler.blogspot.com

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Watching what's happening with the Avastin controversy in breast cancer makes me wonder what the prospects are that FDA will ultimately decline to approve Yervoy (as I guess ipi is being called now) for advanced melanoma. What's the speculation? The astronomical prices for cancer drugs is bound for a head-on collision with Obamacare.

www.theogler.blogspot.com

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KellieSue's picture
Replies 5
Last reply 1/7/2011 - 11:42pm

Well, I've decided to start IL-2 at U of Iowa on Tuesday(the 11th.)

On a better note I'm headed to Vegas this weekend with the girls. Short notice, expensive tickets but who cares right?

Kellie(from Iowa) Stage IV, hopefully NED after IL-2

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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