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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bc84's picture
Replies 4
Last reply 9/7/2012 - 4:33pm
Replies by: HoolieB, bc84, Janner, Anonymous

Hi,

I should apologize in advance if I am not supposed to post here because neither me nor someone I know has been diagnosed with melanoma.

I recently have been educated about melanoma and I wanted to schedule mole exams as a preventative measure. I read on this website that melanoma specialists are the most knowledgable, so I tried to call the offices of several of the recommended specialists on here but of the several specialists I called, none of them see patients who have not been diagnosed with melanoma.

My question is, can anyone give me a recommendation for a thorough dermatologist in the southern California-area?

Thanks for reading. 

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tiger01010's picture
Replies 4
Last reply 9/7/2012 - 1:44pm
Replies by: tiger01010, Janner, dellriol

I noticed some moles on my torso and stomach the other day that looked odd to me.   That led me to investigate a little about moles, and that eventually led me to this website.  I read that I should investigate my entire body and look in places that are hard to see, like the back.

On my lower back is a mole.  It is alarming to me because of its size.  It measures 9mm in width.  Using the ABCDE guidelines, I knew that if the mole is bigger than maybe 5 or 6 mm I should let a dermatologist look at it.   The mole appeared to be pretty much symmetrical, clear borders, the color is brown throughout, and as far as elevation/evolving, it is elevated very slightly, and I have no idea if it's evolving since I have never even noticed it.  My wife says she is 99% sure it has always been there.  If that's the case, then I'm guessing it has grown in size, since I believe I would have noticed a 9-mm mole on my lower back; however, that isn't really logical on my part, since I cannot say for sure what the mole looked like in the past, and so have no idea it it's actually evolving.

I made an appointment with my dermatologist and saw him the next day.  This was 2 days ago.  I lifted up my shirt and he says, "That's a normal looking mole."  Basically, nothing to worry about.  Then he looked at my entire body, head to toe, and said all the moles he saw were normal.  He said that none of my moles, including the one I am worried about, looks atypical.

He said the only reason he would advise excising it and doing a biopsy is because I'm worried about it.  I asked him if he were to have this particular 9-mm mole on his own back, would he be wanting it excised from his own back, and he said no he wouldn't worry about it.

I asked about a punch biopsy.  I don't know the exact name of what he said he would do for my mole, but he said he would not be doing a punch biopsy.  What he described to me would be a big cut into the skin.  He said it would leave a scar.  Not worried that much about the scar, just trying to describe the procedure he would do on me if I decided that's what I want.  Based on what I've read here and elsewhere, it doesnt make sense that he would be wanting to do a real big excision, but that's what he said he would do if I opted to have it biopsied. 

I told him I wanted to think about it.  I am worried about this mole based on the size of it.  My dermatologist is not worried about this mole.

On one hand, I don't like the fact that I have a 9-mm diameter mole on my back.  On the other hand, I have a 71-year-old respected dermatologist who has seen thousands of moles say, "That mole is normal."  I do not want to do this procedure unless I really have to.  The dermatologist says the mole is normal and that if I want it excised and biopsied it would just be for my piece of mind.  He also said that he would not want it excised from his own back if it were him.

Here's my question:  I have take pictures of this mole.  Should I just mark this as the starting point to me doing regularly scheduled close monitoring and comparison of this mole and all the moles on my body?  And then if this mole, or any other mole CHANGES, only then go back to the Dr. and get it exicised and biopsied?

Or

Should I definitely have this Dr. remove it and biopsy it SOLEY based on the fact that it's 9mm in diameter?

I would appreciate any advice that anyone could give me.

Thank you.

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jfro's picture
Replies 1
Last reply 9/7/2012 - 1:26pm
Replies by: Janner

Ok, Janner,

I stayed away until I had a nurse call me again. They had no idea I already received my path report and was attempting to explain it to me again before I spoke. She told me I have to get an excision because the mole was abnormal and they needed to find out what it is?? Does that make any sense? I challenged her by asking that a diagnosis was already written on the report and that doesn't make sense...blah..blah..

 

I'm sorry that I am bothering you again but it this is making my anxiety spin out of control. Thanks. :)

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spinach110's picture
Replies 1
Last reply 9/7/2012 - 9:13am
Replies by: dellriol

Hi everyone, I'm from China and also new to this forum. I'm also very glad to find a place to discuss Melanoma.

My dad was diagnosed Melanoma 12 years ago. Everything begins with a over-developed mole. After a WLS and 2 periods of chemo therapy, he has lived on his normal life for 12 years. 

But the CT scan shows the Melanoma has spreaded over lung and liver this March. With 6 months chemo therapy, the Melanoma still grows a lot.

Now my family placed high hope in the medicine Zelboraf. However, it's not allowed to use or tested in China. 

So I was wondering if anyone is taking Zelboraf and could show us how's the cure effect. Is it practical for my dad to go to US to take the treatment and how much that would be?

Thanks a lot.

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Jamie's picture
Replies 7
Last reply 9/7/2012 - 8:55am

I had pet scan last september'11 which revealed a subcentimeter nodule with suv of 2.5, onc. said watch and wait and have ct scan in december'll to check it, no changes in growth so it was diagnosed as "scar tissue". In mid July'12, pet scan revealed that the nodule was now 2 cm with suv of 9 and onc. sent me to lung surgeon and upper left lobe was removed, tumor was removed and no signs of anything else. We got a call 1 week later saying this was not melanoma mets, but early stage primary lung cancer, which was the better diagnosis, better than melanoma anyways. Anyway, end of Aug. had follow up visit with onc. and he says diagnosis wasNOT conclusive for melanoma OR lung cancer. Samples of the tumor were sent to another hospital and it was "felt" that it was melanoma. We have no 100% diagnosis either way. We (me/wife) were told either way, it was gone and no need for treatment. Can anyone elaborate what is possible, anyone have a similar situation or any advice/comments to share that might shed some light???? I was diagnosed with melanoma in '08 stage 3a, no promlems until now....thanks.....

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Hello... i have just joined this MRF messageboard today. please be patient. i have never used one of these boards before. i will be clinical and brief.

Please excuse any spelling errors i am very stressed...

My daughter is 42 years old.

 Had melanoma removed by local doctor on 25.07.12 FROM the middle of her back between her shoulder blades.

Pathology results.

-superficial spreading melanoma.

-BRESLOW 2MM.

-CLARK Level 4.

-ulcerated-YES.

-mitotic rate  >5

I have done hours on the computer and worked out she would be

T2BN0M0

She was referred to an ONCOLOGY SURGEON who removed a large piece of skin from the original site to just below her right shoulder.

He also removed the lymph node under her right arm. (although he kept stating he did not need to as the results would be clear).

The surgeon would not tell us why he thought the results would be clear.

Pathology on the removed skin and lymph nodes are clear...

We had two visits with the surgeon. 1 prior to surgery and 1 after to get the results.

She is scheduled to have follow up visits every 4 months.

NO ONE will give us any further information. The surgeon stated there is a 20% chance the melanoma will come back. After being pressed he stated

it will come back in her organs and he based that on her high? mitotic rate. I had to ask three times to get that answer. It seems he does not want to discuss her case... this is frightening me as i think HE thinks she is a lost cause..... (and i dont frighten easily).

SEEMS WE MUST JUST SIT AND WAIT.

MY burning questions are.

-Does the melanoma ALWAYS come back with everyone with these pathology readings above or only some peoples.

-If it comes back and they find a tumor and need to operate, is it easier if she is normal weight.. (she is overweight).

-I phoned the melanoma unit at the hospitall and they state she does NOT need an oncologist unless her surgeon refers her. (the surgeon is NOT an oncologist). Is this correct.

-Why was he so sure the lymph node would be clear. Does he think the cancer has gone below the skin into the blood or tissue.

If anyone can help me i would appreciate it....

very kind regards from Bron (queensland australia)

PS is it ok to post on this board. i found this the best one so i joined.

 

 

 

 

 

 my mmy

 

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Anonymous's picture
Replies 2
Last reply 9/7/2012 - 12:12am

My SIL has been diagnosed with Stage IV - melanoma -  they did a bone (marrow?) biopsy last Thursday.  They FINALLY called her today and told her they didn't have enough of a sample to definitively say it was melanoma in her spine (this is where they saw the 'areas of concern')  They were willing to say it was malignant, but what does THAT mean?  I know that means cancer....  

So now they want her to have ANOTHER bone biopsy.  Seriously????  My brother was told there would be a technician there at the time of the procedure to ensure they had what they needed.  Also, they don't seem to be in any hurry to schedule her, although until all these results come in, she can't start any type of trial or treatment.  I am SURE other people have encountered this, but am wondering how others have dealt with this?  It is at the low end frustrating...... I want to scream to these people!  She needs to start SOME type of treatment.  She last had radiation on the original site in June, and was supposed to start a trial in August, but found out about the spine and was told that she could not be part of the trial.  There are several other trials at Moffit, but she can't start them until the results are in.  Is there a HURRY UP button to push somewhere?  This is a matter of life and death (in my opinion)

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Replies by: audgator, triciad, Anonymous

I talked with Dr Weber today...had scans etc..I remain stage 4  NED!  2 treatments left in the 30 month trial. I also discussed the possible release of BMS's anti pd-1. He says there is no way its going to go for approval UNTIL phase 2 trials are completed and we are still in phase 1. We have been in phase 1 trials since 2010 at Moffitt and still in phase 1 trials. I told him alot of people are trying to get in to the trials and it doesn't seem fair.

Now perhaps this will benefit some of you all...Dr Weber has opened the trial for resected melanoma to Stage 3 c... he has only 5 slots left in this trial. If you are interested in either trial you can e-mail him at jeffrey.weber@moffitt.org .

Here is that trial http://cancer.gov/clinicaltrials/search/view?cdrid=682183&version=HealthProfessional&protocolsearchid=10185044#AlternateTitle_CDR0000682183

NOW..here is some other good news...he still has slots in the unresected melanoma trial and he is thinking on asking BMS to expand it to include more people....
that trial is
http://cancer.gov/clinicaltrials/search/view?cdrid=682171&version=HealthProfessional&protocolsearchid=10185044#AlternateTitle_CDR0000682171

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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Erika's picture
Replies 3
Last reply 9/6/2012 - 1:22pm
Replies by: Sherron

I just joined this community. My husband was diagnosed with Stage III melanoma 11 years ago, and it progressed to Stage IV brain and skull metastases at two different times. He is alive, and I guess "NED." This is a new word for me. In fact, there is a lot of jargon and abbreviations on this site that I need to look up.

I have what could be called a "good problem," yet it is a problem just the same. How does one make life decisions with a husband who is supposed to have died, but didn't? Is he "normal" now? Or should I stock up on life insurance whenever I can? We did have 2 daughters after his diagnosis, so clearly I didn't just give up on life with him. But I do feel alone. Anyone else out there in a similar situation? I'd love to hear from you.

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Anonymous's picture
Replies 2
Last reply 9/6/2012 - 7:30am
Replies by: Anonymous

Hi everyone,

If you or someone you know has experience dealing with metastatic or unresectable melanoma we would like to learn from you.  We are hoping to speak with both patients and caregivers over the next 2 weeks, to help better understand the complexities of dealing with this devastating disease, in order to create programs and communications that better serve your needs.

If you are able to participate and would feel comfortable discussing this disease with us, please email melanomamr@yahoo.com. Everything discussed will be kept completely confidential and used for research purposes only; we will provide you with compensation for the discussion.  

Thanks! 

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POW's picture
Replies 5
Last reply 9/5/2012 - 11:11pm
Replies by: POW, Anonymous, dellriol, Janner

My brother was suddenly diagnosed with Stage IV MM with numerous brain mets in June. He had WBR in July, which temporarily improved things. He's been taking Zelboraf for 6 weeks, but we don't know yet if it's working. However, he has recently started having memory problems either from the tumors or from the WBR.

For example, yesterday morning he took the medi-van to his doctor's office. The doctor told him to reduce the dose of one of his medications--the doctor even wrote it down. But when the hospice nurse came to my brother's home later in the day, my brother claimed that he had not been to see the doctor that day. He did not tell the nurse about the medication change. Fortunately, the nurse called me and I straightened it out.

I'm sure that my brother is frightened and embarassed by such incidents. He lives with our 90-year-old mother who's not in such great shape herself. So brother has to go most places, including to doctor's appointments, alone.

But I'm sure that many other people with brain mets have had the same experience. Can anyone suggest any strategies or techniques to help my brother compensate for his memory loss? Obviously, keeping a notebook and pen in his pocket at all times is one thing he could do. But I can't seem to think of anything beyond that.

I would appreciate any help you can give us.

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rosa1's picture
Replies 6
Last reply 9/5/2012 - 9:38pm

Hi everyone, I have been reading these boards for a long time but never posted before.  I initially had some hesitation posting my story, since many on these boards are having really rough times,  but finally I decided today to share my good news with the rest of you, as to give hope that we all need! Please read my profile to get my story.  On Friday, 24 August 2012, I went to Moffitt in Tampa to do the prescreening for the PD-1 clinical trial that doctor Weber suggested me to join.  I did brain MRI, blood work, CT of the neck, chest, abdomen and pelvis.  End of the day, I met with Dr. Weber to go over the consent and the first thing he said when he came in the room was "I want you to read something my nurse wrote for me".  He showed me a yellow sticky note on top of my CT report that read" Hmm!?, no disease?"  When I read that I was in disbielief.  I did not know what to say except "Are you sure?"  He told me that the only thing visible on the scan was the scar left behind from the SRS.  His clinical impression of the disease was complete response/no evidence of disease.   i was in shock! 

I was ineligible to go on the trial as I no longer have a measurable disease.  Dr. Weber is advising a repeat scan in 3 months.

God is good!

All things are possible through God!

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Anonymous's picture
Anonymous
Replies 7
Last reply 9/5/2012 - 9:25pm
Replies by: Anonymous, natasha, POW, Webbie73, deardad

Informal poll - how many of us have had HPV and then melanoma? 

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aldakota22's picture
Replies 2
Last reply 9/5/2012 - 7:37pm
Replies by: aldakota22, Richard_K

Been following Dicks progress on his trial with Zelboraf.Beleive he is  early  user  and has been on for 39+ months.Been looking for a recent post on his condition.Also have not seen any recent posts by Lisa13.Any info on either would be appreciated.Both are always in my prayers.Beat the Beast.  Al

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Replies by: Gene_S, aldakota22

I got my second set of scan results after about 5 mos total now on Zel. My cardiac tumor has gone from 23x24mm in April down to 7x8mm and isn't detectable on the PET. In April I also had a "4 mm area of enhancement in the left inferior frontal lobe with edema. Probable metastasis." but no confirmed tumor mass. Brain is now ALL CLEAR. For this BRAF V600D girl, Zel has saved me for now.

I have a couple of questionable spots from the PET ( maybe lymph nodes or nothing) in my abdomen and am getting a follow up CT. So, not sure if ZEL is starting to fail, but for me the most important organs are clear, as well as my skeleton 1 yr after surgical removal of a nasty pelvic bone met, so I'm calling this a WIN.

Having not done Yervoy I am switching over in a couple of weeks while things are looking really good. Not eligible for ANY trial with a cardiac met. Anyway, I'm still hoping to kick this Mel once and for all and be able to raise my 3 kids. Even though Yervoy scares me, Zel has been no picnic either. Y'all, my fingernails are starting to come loose from the nail beds. Seriously. Yuk.

Amy

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