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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jessebug99's picture
Replies 3
Last reply 5/19/2012 - 7:53pm
Replies by: deardad, jessebug99, WendyR3

I am new to forum.  Diagnosed with stage 4 in March of this year.  After months of headaches, had CT of brain and found large mass. Had emergency surgery (awesome team of dr.s) and the MRI after showed no other lesions and they got all of the tumor.  Had PET and found it in nodes on left side near armpit.  Here goes the history....my dad was diagnosed in 2009 with metastatic melanoma.  Right side large tumor involving lots of nodes.  Tumor was so big couldn't operate.  Went to MDA then on to Arkansas for compassion trial of IPI.  Showed response after first cycle but passed away soon afterwards as his body went into septic shock (he was my heart).  I was his caregiver and my sister took care of our mom who was diagnosed with stage 4 renal cell carcinoma close to the same time as my dad.  She passed 16 days after him..soulmates...fastfoward several months later.  My sister and I had gastric bypass surgery on the same day...two weeks post op they found lump under her arm....after CT and surgery, was diagnosed with stage 4 metastic melanoma.  Oddly enough her's is on the left side as is mine.  She is being treated at MDA...I am being treated at home in Louisiana.  I had MRI of the brain 2 month post op and everything is still clear.  Minimal node involvement.  We are (my sister and I) both BRAF positive and both on Zelboraf.  I just started mine last week...so many stories here...praying for all!! GOD IS GOOD and with us always.....

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Anonymous's picture
Anonymous
Replies 5
Last reply 5/19/2012 - 10:10am
Replies by: Janner, Anonymous

This is something that has always confused me.  If the skin on the back, for example, is thick, with an epidermis and dermis of about 4mm.....then how can a 0.3mm melanoma possibly penetrate into the dermis?  You wouldn't think it would be thick enough to be able to do so.  I don't get it.

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texaninlouisiana's picture
Replies 4
Last reply 5/19/2012 - 9:13am

 

Good Evening - new poster (unfortunately) wanting to get some hopefully 1st or 2nd hand experience with desmoplastic melanoma.

My father was diagnosed last Friday, had the WLE and SLNB on Wednesday and everything is going along smoothly -- including the lymph nodes visibly not looking any different. We will get the official path report back next week so needless to say, we are praying it's not a combined form of DM, instead of pure.

The tumor was 2.7mm thickness, 2cm WLE was done, and SLNB with visibly clear sentinal node removed.

My question is for anyone who has had experience with this sub-type. I already know quite a bit about it by hours of research and findings but I just haven't found any credible personal info on any forums -- both here and melanomaintl.org -- it's really frustrating. My father has really good docs treating him, including one of the best oncologists around but I get a feeling that this type is not something they have dealt with before which is unsettling; not to mention my father trusts them completely. We have resources in the Houston area, meaning MD Anderson is somewhere we could go but he is so worried about the convenience factor (family is in Northeast Texas) of traveling, etc -- it's very frustrating.

Anyways, back on point...I'm reaching out to this larger forum to see if anybody has had experience with this. The only things I've read on here are other questions from folks wondering the same thing as me.

Thank You All in advance.

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yoopergirl's picture
Replies 4
Last reply 5/18/2012 - 9:20pm
Replies by: lhaley, yoopergirl, Anonymous

I am clueless about my Melanoma, all I know is that I am stage 1V , was misdiagnosed in 2006 as insitu, had part of  my finger removed also SNB done at that time too and was clear. 2010 devolped a lump on the same arm and was told it was Metastic Melanoma since then have had many surguries and done interferon 2-11, could just do the month was too hard on me. Isolated limb perfusion was suggested and was seen at University of Illinois and was told that since I was cancer free at that time he would not do it, a month later I devolped another lump and again another surgery. Fast forward now it is in my lungs, and lymph node (which I thought all was removed in 12-10) I have several lumps on my arm too, had the ipi this year, just 3 treatments since I had a bad reaction, no 4 th is recommended. Now I need to have another scan on 6-4-12 and if someone here can help me with what questions I need to ask of the doctor. I do not know how deep my original cancer was, I thought I had the pathology report but don't have that either. I really thought I was up on this cancer but since coming to this board I know now that I am clueless. Would appreciate any input...thanks.. 

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/18/2012 - 4:56pm
Replies by: Janner

Why do some derms look at your skin with just their eyes, and others use a dermascope?  Is one method better?  Should I be wary of a Dr that uses or doesn't use one method or the other?

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teri0915's picture
Replies 4
Last reply 5/18/2012 - 4:01pm

Last week i had a brown stripe and a new mole/freckle removed from my excision scar. Normally I'd get results by now so i called the derm to chdck. The pathologist called them to yesterday to request the path results from original excison to compare to these results. Why would they have to compare? Shouldnt it just be if its there then its there same as if its neg then its neg? Has anyone had experience with this? Im worried that its back olus i have a full ct in the morning. Any advice would be helpful
Teri

Live for today because tomorrow isn't guaranteed. Think positive, it could be worse!

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My tumor is in a lymph node adjacent to my adrenal gland; got the results confirming metastatic malignancy 2 weeks ago and started the clinical trial this week.  I'm on the medication full time now and haven't had any side effects. I'm still struggling with the diagnosis because I don't feel sick.  I still fee funny going in the door to the treatment room because I'm thinking "I'm in here with the sick people!"  Anyone else on this kind of trial drug?

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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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Mandi0280's picture
Replies 2
Last reply 5/17/2012 - 8:01pm

My husband was diagnosed with stage 3b 7 months ago. He went Monday for a CT scan of the neck,chest, abd and pelvis and have not got a call back from the DR yet. I have called several times with no help from anyone. I finally got a copy of the CT scan results myself! The impression says ....No dominant lymphadenopathy or soft tissue masses. Stable small neck and right supraclavicular lynph nodes. That's all it says...does anyone know what this mean or has had this show up before??? Thanks for any help! Mandi

Mandi

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Glaxo’s Melanoma Cocktail Slows Cancer in Study

By Makiko Kitamura and Robert Langreth - May 16, 2012 6:00 PM ET

GlaxoSmithKline Plc (GSK)’s combination of two experimental melanoma medicines slowed cancer progression with few skin complications in an early clinical trial, a result that suggests the combo may have fewer side effects than existing single-drug treatments.

Patients taking Glaxo’s dabrafenib and trametinib together had a lower incidence of rash and skin lesions than previously reported with Roche’s Zelboraf, according to a study of 77 patients with advanced melanoma, the most-severe form of skin cancer. The study, funded by London-based Glaxo, was released today ahead of the American Society of Clinical Oncology meeting that starts June 1 in Chicago.

“Not only are the two drugs causing shrinkage of the cancer, but we’re seeing that a second anti-cancer therapy may actually suppress the side effects of the first,” said Jeffrey Weber, an oncologist at the H. Lee Moffitt Cancer Center in Tampa, Florida, in a statement. “So far it is looking good.”

If the Glaxo combination succeeds in final-stage trials, it would compete with Zelboraf, a targeted therapy cleared for sale in the U.S. in August. Both Zelboraf and Glaxo’s dabrafenib work by blocking BRAF, a mutant gene that spurs cancer cell growth in about half of melanoma patients. Glaxo’s trametinib is designed to thwart a related protein called MEK, which helps tumors resist an assault on BRAF.

Adding the MEK drug may reduce a signature side effect of BRAF drugs like Zelboraf, the development of non-melanoma skin cancer, while possibly boosting efficacy, said Weber, a study leader, in a telephone interview. Weber has consulted for Glaxo and Roche. (ROG)

Non-Melanoma Cancers

About 15 to 30 percent of melanoma patients treated with Zelboraf and other BRAF inhibitors develop non-melanoma skin cancers, scientists at the Institute of Cancer Research said in an article published in the New England Journal of Medicine in January. The drugs speed a type of skin malignancy known as squamous-cell carcinoma in patients who may have gotten the cancer anyway, they said.

Only 3 percent of a larger group of patients in the Glaxo combo study, which also included other solid tumors, developed squamous cell carcinoma, and 5 percent developed premalignant lesions called actinic keratoses, Weber said.

Across various doses, the combination delayed progression of the disease by 7.4 months. In the high-dose level, which will be studied in further trials, the two-drug therapy delayed the progression of the disease by 10.8 months, Weber said.

Roche Comparison

Roche’s Zelboraf delayed melanoma tumors from progressing for 6.8 months in one early trial and 5.3 months in a final-stage trial.

“It would look clearly superior to the figure we have seen” with the Roche drug, Weber said on a conference call with reporters. “It is a very impressive record by any criteria.”

Charlotte Arnold, a spokeswoman for Basel, Switzerland-based Roche, said in an e-mail that “it is not appropriate” to compare data from Zelboraf’s approval trials to results from the early study of Glaxo’s combination, as it did not directly compare the agents. Zelboraf has been proven to extend survival of melanoma patients.

Glaxo plans to start a final-stage trial “as early as this month” said Melinda Stubbee, a spokeswoman for the British drugmaker, in a phone interview. The trial would compare the combination to Glaxo’s dabrafenib alone in melanoma patients.

Glaxo also has also been studying each drug separately for melanoma and will seek regulatory approval of both compounds individually later this year.

Melanoma strikes 68,000 Americans each year, according to the American Cancer Society. While patients with early stage disease respond well to treatment, the five-year survival rate for those with cancer that has spread is 15 percent.

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Anonymous's picture
Anonymous
Replies 5
Last reply 5/17/2012 - 6:49pm
Replies by: Anonymous, Janner

I am so confused about all the varying information on google.  I have found a sit called medhelp in which the dr says this(copied and pasted from medhelp Dr response to question about melanoma in-situ).  Is this really being blown up by me as I am a person who deals with hypochondria.

 

Here is what i took from medhelp-

"I understand your anxiety, but you are taking your concerns too far. Just because you had one atypical lesion doesn't mean that every spot you get will be atypical. (The same is true for a freckle that comes back in the same place.) What you need is to work with a doctor you trust to look at your spots carefully on a regular basis and to test anything that looks worrisome. That seems to be what your doctor is doing.

Most spots don't develop into anything. You don't need to remove them preventively. You just need regular watching.

Melanoma-in-situ is not melanoma. It presumably might turn into it if left alone, which it won't because it was taken off.

If there is a teaching hospital with a Pigmented Lesion Clinic anywhere nearby, you might want to visit there to get an overview and proper counseling. I do not advise your attempting to interpret your own pathology reports.

Good luck.

Dr. Rockoff       

"

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noisy77's picture
Replies 7
Last reply 5/17/2012 - 6:40pm
Replies by: cwu, noisy77, Lucassi, susanr, janward

Hello - 

Just wondering if anyone has acral lentiginous melanoma ?  How did you approach treatment? 

My mom has stage 3c acral lentiginous melanoma of the big toe.  She just completed radiation of the groin and curious to how others approached.

Thank you.

 

Elizabeth

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I am from the UK and have recently been diagnosed with an SSM stage 1a on my leg, Breslow depth 0.72mm, no ulceration, no mitosis, no regression.

I am very confused about my pathology report which states an "invasive radial growth phase" for the growth phase but also Clarks 4.  This seems contradictory to me and my consultant has not been much help in clarifying this, saying that it must have a vertical growth element.  Further down on my report it says, against where the mitotic rate and tumour infiltrating lymphocyte figures are shown, "(VGP only) - N/A" and then goes on to note in brackets "0 per mm squared" for mitotic rate and "non-brisk" for TIL.

Can anyone clarify this apparent contradiction?

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laurieformike's picture
Replies 21
Last reply 5/17/2012 - 12:02pm

It has taken me many weeks to be able to post on the board.

He was going to have more radition on March 7th, but before the went to do Cyber Knife Surgery they wanted to do another MRI. After the MRI they enformed us that he was much worse that the week before, so they felt it would only make him even more worse. So instead he left the hospital to come home for the end of life. Although there was a slight possibility that the Zelboraf would still work, it was hard to realize that it wasn't helping the brain, because it had helped so much in the liver, lung,and limp nodes!

RIP Cigar Mike 4-3-2012. He made it to his 55 Birthday, 3-25-1957. LOVE YOU FOREVER,

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Anonymous's picture
Anonymous
Replies 5
Last reply 5/17/2012 - 11:46am
Replies by: Erinmay22, Anonymous, hopefortomorrow, lhaley

My husband was diagnosed with metastatic melanoma - a week ago. He had a full-body exam with the blue light on Monday and they didn't find a primary site. We are still waiting to get an appointment for the CT/PET scans. Why does it have to take so long just to find out what's going on? Don't they know what this is like - not knowing? Why can't they do something to get this started already?

How do I just get through this next phase?

blogging at www.hazelbecker.com

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